I had another (my third) ER visit on the 17th. I doubled over with severe pain and bloating in my abdomen- MUCH worse than normal- I noticed it was more located under my right ribs this time, and also lower too, around my lower right area of my abdomen, but since I have my apendix out, I knew it elimintated that issue.
It seemed to come in waves (the pain). It was SO severe!! I stayed up all night and finally by the time I sent the kids to school, I was doubled over in fetal position on the floor clutching my stomach with both fists and gasping for air. My face was flaming red and I felt this intense pressure and pain in my chest and in my neck too. It would stab with pain and then would turn to an aching pain to where I would moan and could try to catch my breath and then I would try to move and then would begin again! I took a couple Lorazepam (Ativan) to see if that would help and thank God that DID help a tiny bit- enough to GET me to the Emergency Room.
I got there and my Blood Pressure was 100/86....with a heart rate of 98.....the nurse asked "are you in a bit of pain?" as I clutched my abdomen...I was bawling my eyes out and as I tried doing lamaze breathing, I said with a half hearted forced smile, "yes, miss, I truly am, I hope to get the help I need, because this is awful". She was so sweet, and got me right into a room, since my lower number was high (higher than normal- which is 80- and my normal bp is usually 110/60....and lately I have been running super low of 92/76).
Once I got in they took tons of blood and labs and did the full work up, I drank that yummy drink for a nice CT scan, even though I have had way too many scans in my lifetime, but at this point, I can't risk this kind of pain, so I was willing to get one...and so I had my two CT contrast drinks in the delicious vanilla flavor. And got fluids through the IV, had excellent nurses, wonderful dr.s and staff. I went to a different hospital than the other ones I went to before, and I was VERY thrilled with my treatment. :)
My results after getting pain meds, and full treatment after hours of a day stay, were: bowel obstruction which I have had loose stools but I guess I have an obstuction in my UPPER colon, and need to cleanse it out, so I have to take a nice thick liquid called "Lactulose" a few times per day for several days to get my liver working correctly and also get the blockage fixed, and if it doesn't correct, then I will have to go back in and get it fixed the "other" way....and also have a hemorrhagic (blood filled) cyst inside my right ovary causing me pain and it hasn't erupted yet....I have ALWAYS had issues with my left ovary, and never had issues with my right ovary....my left ovary is actually doubly the size of my right ovary, so this was a little strange, and of all the times that they have found cysts, they've always seen the hemorrhagic cysts emptied already inside my left ovary.....but this time it is inside my right ovary and is still hanging on, which is causing me extreme pain when I move. I pray it does its' thing soon! Because coughing, sneezing, laughing, moving, stretching, anything at all, HURTS!!! And not to mention the pain I already have with the blockage going on under my ribs!! I am just one blocked up lady.....I am certainly looking forward to getting this all finished.
Strange things have been happening: I have been losing my hair in huge clumps. I asked Jasmine to check my hair to see if I have bald spots, and she saw some on the very back of my scalp- thank God they are NOT on the top of my head! It's sad....I'm not sure if it's the lupus, or if it's something else, but each time I pull my hair out of my braid or pony tail, I lose tons of hair, and each time I wash my hair, I lose it by the handful. :/ I take vitamins and drink ensure, and don't know what else to do, I guess that's just what's in store for me....and I accept it, because I don't have a choice....the last time I took a picture, because I was so shocked!
I have several dr appts coming up- I made sure to make them in the afternoons so that I will be able to be awake for them and not feel so tired and achy if it's morning appts....who am I kidding when I make morning appts?! I take these appts as if I can actually BE THERE! As if I could? That would be great, but that person isn't this girl right here, the person who fights with herself just to get off the couch to get up to struggle to go 15 steps to the bathroom in my own home. I hold my own pee all day because my pain is so bad that I have trouble getting up. So sometimes (ok, MOST times, its just easier to just hold my own pee than get up and go)...so forget actually get out and drive to a dr appt! that would be a miracle. :(
So I am learning to be honest and not hide behind the mask of who I PRETEND to be and I am learning to be REAL and HONEST and let everyone know what my life is really like....and I am going to also be doing vlogs (video logs) of our lives also....we have started on youtube and we will make many more...I have hid myself and made myself look so happy and secure, with make up and smiley, but I am going to make one called "a day in the life" and it will show what a day in the life of THE MELLO FAMILY will look like....and you will see exactly what 24 hours looks like. It will be hard for me to show what I am....because I am not much more than a vegetable at this point....some days better than others, but I hardly get up anymore, I hardly go anywhere, it's a project just to do my hair, just to put on clothing, I run out of breath just trying to brush my teeth....I know I need help and the drs. are GOING to help me! I am not giving up! I am going to fight this fight because I have faith that I can get an answer to why I feel so sick...I know something is terribly wrong with me, and I know there's a reason to why I'm losing so much weight!! I am a single mom and don't need to end my battle with life so young! I need to WIN the battle and LIVE this life to see my kids graduate school, watch them marry, live until I'm old and die when I've lived my entire life....I'm not ready to go, so why the heck do I feel like I am being taken so early?! Why havn't the dr.s found the answers? Why don't I have the energy to get out there and fight?? And Why the HECK is it that when I DID get out there, the OTHER dr.s TURNED ME AWAY and PUT ME DOWN instead of HELPING ME?!!
I know one thing.....I am not stopping!!! Those dr.s that told me to "LEARN MY LESSON" at the last hospital- and then NOT giving me any treatment at Baystate hospital last time I went and last time I blogged on Christmas- they HELPED me......I am more motivated than ever! I am going to get out there and FIGHT LIKE HELL!!!! Screw that woman for saying that to me! I hope she sleeps well at night knowing she turned a very sick single mother of three away without any treatment!! Because I am going to get my help and I am going to get my surgeries and going to heal spiritually better than I ever have before. :) She did me a favor. She gave me motivation. So thank you, CRUEL, horrible, Physician Assistant at Baystate Hospital for telling me "I hope you learn your lesson for staying away from drs for this long! serves you right for skipping dr appts and not following up!" and then not giving me IV fluids despite my dehydration, not giving me a ct scan or any scans or tests despite my WEEKS of constipation (?!?!) Not checking into my nose for SEVERE nose bleeds (one of which happened while there- I rang the call bell 4 times, and they shut it OFF all 4 times and I fainted, a paramedic woke me and I had bled all over the blanket and was sitting indian style with my face buried into the blanket hunched over and dried blood which meant I must have been there awhile ?!?! (nice), and also I didn't receive any type of pain medication, any type of ANY medication for anything the entire time I was there, not for constip
Hello, My favorite followers; My viewers; My team; and My inpiration!
I am going to call my dr tomorrow for a few healthcare concerns. I have had this constant pain in my thigh (and a few veins bulge outwards) and I have continuous pain in my left lung area) especially at night...I get winded very easily, more so when I am walking up or down the stairs, and it wasn't that bad prior to a few days ago. I had a nosebleed the night I went to the ER by ambulance and ended up getting severe chest pain along with some really bad dizziness, which brought me to my knees and everything around me turns black!! I literally feel as though I am going to fall down! My knees get wobbly and I go down for the count!! Not a good sign.....So I will go in for a D-Dimer test to check to see if I possibly have a blood clot DVT (deep vein thrombosis) or PE (pulmonary embolism).
The pain is constant and it is severe at night. I seem to go pale and my breathing is abnormal. I noticed on the monitors while at the second hospital on Christmas Day (evening) that I had issues with my respirations, very shallow, and very rapid pulse, high blood pressure, which is rare for me, usually I am 105/60...I was 142/39 at one point! And then once I was low at 101/52....My vitals were all over the place. I was shocked that I didn't receive any kind of medical care at all....I just sat in a bed for 8 hours and that was IT. I did have my blood taken and I will be going to pick up the results of those tests tomorrow. Since they didn't tell me and didn't print one copy out for me, stating that I had to go to medical records to gain a copy for myself, so I gladly said I would do so, as to not cause a ruckus.
I'm taking the ball by the handle and chains and going to go full speed ahead with my health! As scared as I am of Dr.s, I am NOT going to stay in the shadows any longer. Although, I need help, YOUR help, because without financial help to get the PET scan (the cancer screening test) to see if I have cancer in my abdomen, bones and body....they can't start surgery...and without the blood testing stuff done, which Masshealth also won't pay for, I can't have ANYTHING done....because surgery could kill me if I don't get diagnosed with which kind of rare bleeding disorder I have....but masshealth refuses to pay for these expensive tests. They said it's not a necessary test to have, and although I am having the OPEN and LEAST expensive masshealth surgeries (the ones that cut you open- not the laproscopic tests- which at this point, I am so sick, I couldn't care less, lol. I am READY to just get this over with and be healed and happy), I still need to pay for the testing out of pocket for the specialty services. I don't have the funds to do so.
My biggest prayer from my children and myself and Niece is that someone out there will be able to grant my prayers and help me with the funding that I desperately need right now to pay for the specialty care (the hematologist testings and the PET scans). I will need to figure out what is going on precisely inside me prior to cutting me open because without knowing what's going on, we could be risking a major mistake. If I have cancer (which could be the cause of all the wacky weight loss and the reason for the elevated levels of blood and platelets, etc,) then that would have to be taken care of first. It would save my life to KNOW before hand and we could start treatment right away. If we know what type of bleeding disease I have, we can be sure what to do while I am under the care of anasthaesthia. I may not have to bleed out like I did the last time, and maybe they can catch it before tragedy happens. :) Knowing and preparing is the key of success. And I certainly want to be prepared. Especially after what has happened to me already. I am ready for this fight!! I was ready months ago, but NOW, I am truly looking forward to going ahead and getting my dead colon removed. I am so sick of the symptoms and the sickness it causes me. I can't stand feeling so ill anymore. It's time to kiss it goodbye. :) And as for my blood disorder....let's find out what this thing is....what are you?? Let me meet you and get to know more about you! I want to know you and be prepared to really know how you operate under pressure, lol. ;)
And as for my spinal surgeries...those are next....or maybe those are first!! Who knows! I think my colon comes first, considering that's what's causing me to be in bed and not move much, but my spine is also causing me to be in a veggie tale state....if you know who they are....but not as much spunk. I've been a mother who mothers from bed! Imagine trying to command out orders from BED? Yea, doesn't go over so smoothly, lol. It's not so pretty.
But.....on a serious note.......I'm losing clumps of hair, and I am downright scared. I've made notes that I need notorized and I am about to make a living will......I am not sure what will happen. I am so weak and so fragile these days. Nothing fits anymore, My clothing is so loose on me and I am alsways feeling so sick and in pain. I must get this done as quickly as possible. And I truly need your help financially. I ask of you to send out my link and story to everyone you know....please......please hear my prayers and help me heal. I need your prayers, and I am also in desperate need of these valuable tests.....without these tests, I CAN NOT go for surgery. :( I desperately need you now more than ever. I truly need your help. Any amount helps. Please, pass on my site and bring it into stores, and tack it up or put up a jug and collect the money at the end of each week or something....or maybe a church. I am out of options. I have tried everything. I am now at a vegetable state.....I'm in bed 98% of my day and need Jasmine (My Niece) to help me with almost everything..and have begun "letting go" little tiny bits in my underpants, which is odd, since I have a rectocele.....I am at a loss.....I have nothing left, other than this site, and God....and God is all I need. He cheers me up, I always pray and feel better. But one thing that doesn't get done is the tests....The money for these tests isn't getting funded for just by praying. So I am now asking my dear friends, followers, readers, and viewers, to pass this on, post this up, share this blog, and foundation site with as many people as you can? I've never been one to ask, but I am asking out of desperation. Please, Help me. I will Pray so hard to God hears me and helps my funds come true. He knows how badly I need these tests or this could mean no surgery....Or it could mean surgery with MAJOR risks, that I am not willing to take, because if I take surgery without knowing which kind of bleeding disease I have, how will I know what to do to prepare in the operating room? The surgeon is not happy about my having a bleeding disease and is very uneasy...he really would love for me to have this test to show him what kind of bleeding disease I have....and this could mean that I could be on the road to recovery, because with my nosebleeds, bruises, and other issues, I could find a medication that could save my life...this could be my key to finding out my future. :) I know that we can ALL find a way to make this happen for me. Please? Let's all send this on to everyone we know. COPY & PASTE :
HERE'S my update on how my ER visits went......I had TWO of them!! And they were a MESS, and I now remember CLEARLY why I DON'T GO TO THE HOSPITAL!!!!!!! My GI Dr. is VERY mad, my regular care Dr. is VERY mad and the hospital Dr.s are being reported for lack of care. I am just going to see my regular Dr.s I guess, since I I didn't get any treatment at all (other than nasal cauterization with silver nitrate) for any of my issues!!!! No IV fluids, No blood tests, No urine test, No X-ray, Ct, Mri, or any other test to check internal bleeding or other cause of my severe stomach pain and non-bowel movement issues; And No rectal check, Not ANYTHING was done OTHER THAN nasal cauterization, NOT even looking in my throat, ears and eyes!!!! Not even my blood pressure was taken, except in the ambulance! And at that point it was VERY high, so they got me right into a room, because I was having chest pain!! So they were concerned with possible internal bleeding- which was dismissed completely by the hospital staff- the 2 males (the nurse and the dr.)The Ambulance was concerned, but the Dr was NOT concerned and the Ambulance brought me to the WRONG hospital! The ambulance brought me to the local hospital instead of the big hospital 2 towns over that deals with trauma and the one that my Dr.s require me to go to!! I was stuck there for hours trying to get HOME! lol. I have to laugh because I ended up calling the police to force the taxi people to wake up and take me home. He got a nice tip, lol. The cost was 12 and I gave him $20, because he wasn't supposed to be open for Christmas and it was 4 in the morning!! lol. Crazy business. All that I got done was my nose cauterized and not even in the right spot!!!!! I have a polyp or several in my uppper nose- but they saw open veins close to my mid-lower nose and so I decided to get it done because he said it was bad and they were all opened up and exposed. So that's ALL he did. And he didn't do ANY other testing- despite my chest pain, (which is new- developed during one of my bad nose bleeds), my severe abdominal pain, my dehydration, inability to eat, etc.....no blood test to check for blood loss- I was only there for about 20 minutes and then discharged!!!! How strange! I asked to be taken to Baystate- the hospital that I was SUPPOSED to go to (when he asked how I was getting home- I told him the ambulance took me to the wrong hospital despite me telling them my dr. requires me to go directly to baystate- the trauma unit- every time I need treatment!) He told me NO, and I asked if he could check my chest out and my stomach, and he said they aren't required to do so....I need to check with my primary to do that. ?!?!I also told him I haven't been able to eat, and I am very dehydrated and did they want urine, because I have had blood in my urine, and he said NO.....it wouldn't be necessary......I said maybe I have internal bleeding?! That could be causing the not having a bowel movement for 29 days. I explained everything, had a paper of all my issues, written out neatly and precisely easily explained for them, so that they could skim over it and not waste their time, but he never even peeked at it.....He said I need a regular dr. and my GI dr to check me out...He wouldn't check me out andsaid really rudely that: "I waited WAY too long to come in! So why would he check me out if I have had issues for a MONTH"?! He said: "anyone who waits that long and expects to get emergency help is way beyond their expectations".....I bawled my eyes out and explained that I had a really bad surgery and was afraid of hospitals and dr.s now....he just couldn't understand that. He was nice, but was very UN-empathetic.
In Medical Assisting school, the FIRST class we learn and throughout the ENTIRE 2 years, we learn EMPATHY!!!! We go over and over and OVER EMPATHY!! I notice most students grow bored with it, and I looked at them with disdain.....but i knew I would always have that quality. Unfortunately, I was unable to go out into the practice for more than a year due to health issues.....I would've made a GREAT Medical Assistant. I LOVED being in the Cancer Unit and the Dialysis Unit on my lunch breaks and be with the patients while they were getting treated. Their lives were on the brink of life and death, yet they had God and were so ALIVE in spirit! They lived like it was their last day. :) I learned a lot from....but the Dr.s and nurses were so awful and absolutely RUDE and CRUEL to these patients at the practice that I worked at for 9 months!! I went home crying almost daily because I hated the way the workers treated the patients!!! NO EMPATHY is horrible! I loved my nurses from the small hospital I went to by ambulance the other night!! He was ready to take care of my abdominal issues, but the Dr. is the one who calls the shots, so he took the liberty to say NO and ditch me, which was supposed to do what exactly?!!!! Make me NOT want to ever go back?!!!!! Because I felt like a real idiot, and felt as though I never wanted to see a hospital ever again, under any circumstances, but know that no matter what, my LIFE is MINE, and no matter how rude these people treat me, I will continue to go back, because my kids need me and I will not stop fighting for my life, because I am ready to get better!!!! I didn't feel SO sick a month ago....that's why I didn't go in! I keep explaining that to people, but it's really hard for them to accept that as an answer......I am honest with them, have always been a friendly, sweet, caring and nice patient, but yet I get pushed aside like a piece of dirt!! They won't stop me though! I'll be back! :-)
The next day, Jasmine (my Niece who isn't my "real" family, but I adopted her into my heart and life when she was 12- she's 20 now) her family picked us up to go to their house for Christmas Dinner, since my tire still isn't fixed- and I ended up having to get to the hospital AGAIN, because I had yet ANOTHER severe bloody nose in which I began shaking, saw black, and needed to put my head between my legs because I almost fainted. I lost the entire silver nitrate cauterization that they placed into my nose!! What a MESS!!!!! I can't even hold that in?! Jeesh. :( My blood is SO thin, that it just refused to hold it in. I remember getting a cone biopsy done in 2005, for cervical dysplasia and I also lost that silver nitrate cauterization, and ended up gushing blood....it must just be my bleeding disorder that causes it not to work. So I'm left with MORE bloody noses than before! Because now I have MORE open vessels than before. Fun times. :-/ (I knew no matter what that I would go to the hospital again, because I didn't get anything resolved the previous night! So I was prepared to go in and take care of all of my issues and was feeling content and felt good about my decision to go in and deal with my long-awaited hospital visit, lol.....boy did that turn out to be a bad choice or what?!). No matter what though, I am going to keep being the squeaky mouse that getsthe cheese. I have made tons of phone calls. I have called ENT dr.s and will find one that will take care of me and my nasal polyps, can possibly re-cauterize my nose or do something else that may stick better, and have also contacted and made appointments with my primary for tomorrow, my GI Dr for January 3rd (unless there's a cancellation, and then I will be in sooner), and he will refer me to a new colon surgeon. I also have my neurologist appt at the end of January (24th I think?)
So.........Anyways........I finally got to the hospital- the GOOD hospital and was put on an EKG machine and it was a little messed up and came back with a few abnormal heart rhythms, so they got me RIGHT in and I had a bed. I thought I would be treated well, because I always WAS treated good. I got a good nurse, and was happy. Then the PA dr. came in and she asked me WHY I had waited a month to come in if I have had
Hello, My distant blog.
I am getting closer to a diagnosis (well to ONE lol). I have a rare spinal thing called "Syringomylia" a syrinx (cyst) on my thoracic spine and in my cervical spine causing my cerebellum (small part of my brain) to collapse into my neck, causing a herniation of my cervical discs. I'm going to get more MRI's and make sure I have another thing called "Chiari Malformation" (which would explain my headaches, ringing in ears, tingling in hands/face, chronic spinal pain, scoliosis, and severe neck pain, tipping over/balance issues, and extreme dizziness) and will see a neurosurgeon and get a craniectomy (brain surgery) to correct it.....I have faith it will help fix my quality of life. I have SO much pain in my spine and neck, and lately it progressed, so let's pray that my Dr listens and refers me to the neurosurgeon. It's a rare disease, so he was baffled about what to do....the more I read up, surgery is BEST, because once symptoms are felt, paralysis can occur, so I would love to correct this and have one painful thing checked off. I've had neck and spine pain since I was 10. It got much worse in 2003, when I got on tramadol, and in 2008 I had Meningitis, and must have had the effects of the Chiari Malformation and the Syrinx formation occur at that time.
These things can also be caused from trauma to the spine, which on September 15th, I was faced with physical abuse from my ex boyfriend. He injured my spine and I have had extreme pain since then. Much worse pain than prior, which I then went in to my pain management dr. and he sent me for an MRI of my thoracic spine and found the Syrinx which he knows nothing about. We were thinking it was something that we could correct easily with a simple epidural injection, or anti seizure meds or something....but that certainly is NOT the case at all. I am glad I was diligent and have found the cause of many of my spinal issues. I can cross off my neck/spine/headaches off the list.
I have been doing MUCH research on Chiari Malformation and Scoliosis is the cause of it...which can explain why when I was 10, I began having pain and then my scoliosis was found, I then also began having neck issues, and headaches, bloody noses, balance issues, and ringing in the ears. I believe I have always had Systemic Lupus, which was NEVER found until I was an adult, but also have had THIS Chiari Malformation also since childhood, but no one has picked up on it, until ME< the squeaky mouse who is now practically in bed 92% of the time, losing weight rapidly, not feeling well at all, and overall, not much quality of life, finally found ONE answer to MOST of my pain.....I am overjoyed to know that I found the answer to this! I am so proud to know that I am able to overturn my own disease and hopefully will be able to come out on top. There will be some concerns, because I have a bleeding disorder, I just don't stop bleeding....with each surgery, I continue bleeding, and it doesn't seem to stop....so that's a major concern, but we will talk about all of that and will discuss the risks, etc. I am just happy to hopefully NOT have my spine feel this zapping/jolting pain! And I get the worst headaches from the base of my neck every single day from just coughing, or leaning forward....I hardly move and I get a headache. It hurts so badly. My neck is in agony all of the time. It makes complete sense now that I have an actual prolapse in my base of my brain, it makes sense that I would have herniated discs in my neck.I was thinking I JUST had herniated discs with bulging (kyphosis) but now it makes sense that where the bulging happens is where my cerebellum (small part of my brain) is pushing downwards, and protruding into my spine.
I go in Thursday to my Pain Management Dr. and will get an appt to get a full spinal MRI with contrast and will then be referred out to the neurosurgeon in Springfield...Let's pray I can get this overwith and live much more peacefully. After this update, I will update my breast info....that's a much more annoying one. :/ This one is much more cheerful. So I started with this one. lol. I added a new pic of me.....just so you can see me smiling.....I haven't put a pic of me in a long time. It's nice to see a smiling face. :) Thank you for being there for me. Happy Holidays. God Bless you all.
Hello, my distant blog. It's been a long time, a couple months of trying to "ignore" this part of my life....the part where I have to face the facts that I am not "well" and have to go forward with surgery. But......since you've always been a great ear, here goes nothing!
I took a break and it was great in a way, because I was able to live freely without any poking, prodding, and tests. Yet bad, because during that time, I began feeling that "something" just wasn't right....I began having swelling in my lymph nodes under my left arm. I felt a huge lump in the outter part of my left breast and it continued to grow. I knew right away that it wasn't going to be good. So, after a month of "seeing" what would happen, and after gut feelings telling me to stop being so STUBBORN and GET CHECKED!! I decided to oblige. I am now in the beginning phases of PET scans, MRIs and Ultrasounds, along with Tamoxifen. I am going to figure out what's next- whether that's to remove both breasts and get a full hysterectomy, or just remove the lump. Either way, it's going to end in surgery. I accept this into my life....only because I want to LIVE. So I will do what's best.
THE GOOD NEWS: I look AMAZING!! I keep losing weight, and look wonderful!!!!
THE BAD NEWS: I am also losing muscle mass and bruising up just by sleeping!
The SUM UP: I am going to keep rocking it when I feel good, and will rest and do my best to eat when I am not feeling good. Funny how life works!! ROFL>
My colon health has gone way downhill, but I am so frightened of doctors going "back there" to check things after the bad surgery I had in March.....so I am trying my best to place this part of my life aside.....probably not the smartest thing I could do....but what else can I do when I am super scared? And who wouldn't be scared after all of the previous posts about the whole bleeding/pain/repeated hospital stays?!
Day by day I try to LOOK good and act fine....but it just isn't enough. There isn't enough energy in 5 cups of coffee to keep me up all day, lol. I can laugh about it, because 2 cups of coffee used to jolt me alive, and now the java puts me to bed, lol. I know, coffee isn't good when you have the big C, but who cares?! I like it and need it. One thing I love lately is CANDY!! Another thing I shouldn't be eating....due to large amounts of refined sugar, but when I'm NOT eating anything more than nibbles per day, I tend to live off of Milk Duds....oh Goodness YUMMMMM!! It makes me happy and I am going to continue splurging and making excuses to get them, lol.
Thank you to all of those who have been following my long journey. To those of you who have prayed and contributed to my funding. Surgery needs to happen in the next coming weeks or months, and is more needed now than ever. Please continue to follow my journey of sickness into wellness. Many blessings to all of my dear friends. xoxoxo
After taking a couple weeks off from ALL dr. appointments, tests, lab work, etc, I finally have placed myself into a good place (emotionally) and am ready for the battles to begin.
I have a few nodules (spots) on my left lung, and finally went to the pulmonology doctor to get answers. So far, I just have to get lab work done, and also have to get one more CT scan (even though I am WAY over the limit of acceptable amounts of radiation). I'll get that on July 5th and we will see if they are gone, and if not, we will go through with biopsies or more further testing. I pray they are gone and no longer there. I was told there was only ONE single nodule, but I found out that there are 4 of them, the biggest is only 3mm....so they are small, and seemed to be in 3 different areas of my left lung, top left, top right, and bottom lobe....so we will know more about those when the CT results are back in. I have some issues with green phlegm and a heavy chest, and more weight loss, but overall, I really think it will be fine.
I still haven't gone to the NEW colon surgeon from UMASS yet. I took a few weeks off from all doctors and only went to one single appointment, and that's IT, and I really needed a long break to regroup and get myself feeling positive. Sooooo, I will be back up and running like a chicken with handcuffs (lol) soon, with ALL of the same tests REDONE all over again! Yes, it is certainly exhausting to start ALL OVER from the start, but I KNOW this could be the best thing that's happened to my body. So I am more than willing to start completely over, as if nothing has been done in the past. So, let the games begin. :)
The new colon surgeon will do lab tests, health screens, full check-up, defecogram, sitz marker test, gastric emptying, and all of the other "fun" tests that are completely embarassing and make you turn every single shade of red in the largest crayon box (lol). It will be good to start fresh and for him to know what HE sees on HIS tests. I will have to also follow up with a new UroGynecology surgeon also, because the last surgeon completely messed my pelvic area up by not only doing a terrible FAILED job at the rectocele repair (rectal prolapse) but also pulled down my entire anatomy (uterus, bladder, cervix) in the process, and also made the rectocele WORSE than previously. With that said, I will have to get all of those tests redone also with that surgeon.
I was so angry and didn't even want to talk about my pain and failed surgery for awhile...I was depressed and lonely. How is it that I was so optimistic about having the rectocele repair done transanally and it failed? But now I am thinking in a much better way: This happened for a reason! I found my way back to my faith stronger than before, and I was so afraid of the actual Total Colectomy (total colon removal) that will happen in my future, that I would have scarring and be unsightly! But now, with all of the pain, the bloating, the not going to the bathroom, dozens of enemas and tons of ways of trying to help my poor aching belly and back, and losing weight, not eating, sweating profusely, and overall being sick all of the time....well, now I am READY for the Total Colectomy! Ileostomy or Colostomy bag or not, I am ready! Could I have been so positive before? No way.....so I know that without the botched rectocele repair and the 2 extra hospitalizations with profuse anal bleeding after surgery, and the pain and agony, I never would have found my way back to my faith and my courage to fight this battle.
I am ready to find the cause of the weight loss, the pain, the torture that my body has caused me. I am so ready to find my way to healthy ME. :)
If any of you can find it in your hearts and possibly have a few extra dollars laying around, I would be so greatful for your help. The money is going to be placed towards hotel stays, babysitters, gas to travel, co-pays, and to get the best possible care that I so deserve after all of the previous battles that were lost. Please help me come up with the funding I need to get my health back, so that I can finally be the healthy and energetic mommy that my amazing little children need. We have so many "pajama days" and I am ready to travel, go to six flags, and live life without pain and laying down each day like a vegetable. Let's get me back up and running. :)
God bless all of you who follow my story. May you always get all that you pray for. Please share my story so that we can raise the funding amount needed for my surgeries and care.
I saw my primary dr. and was able to get the referral to the NEW surgeon out in Worcester at UMASS. I am certain that He will be able to start from scratch and do all of the tests again and get me on the right track to colon removal. I know I am in better hands, just by seeing his patient reviews and other ratings. I am very optimistic this time, as I was last time, but I was more scared the last time...I am ready for this!
I will go next week to the breast surgeon to discuss the "lumps" in my left breast and under my armpit (my lymph nodes). Hopefully they are just "there" and not harming me, because as I continue to lose weight and my blood pressure is very low, I need to make sure that the lumps and also the spot on my left lung are nothing more than "existing" and not creating havoc inside me. I am not overly concerned with them, but definitely need to rule it out so that I can move on to the rest of my body and get the rest of my body back to good health.
I pray that I come up with the money I need to fund me to be able to pay for my stay, pay co-pays, and to transport me there...it's about an hour away and in order to be able to make the appts, I would have to stay there, and be able to stay there, I have to be able to pay for all of the things listed.....I pray for help from others to be able to make my health get better. I am so close to getting past all of this mess, and am confident that I will be so much better off after I am free of my very sick colon. I ask that if you could all pass on my story to others, and share it with people you know that could possibly help, maybe God will work miracles for me and I will get the funding I need to move forward with making my appts for my new surgeon to begin all over again with my healthcare. Please help me get better. God bless those who have followed my story and have been helping me spiritually and emotionally. May God always watch over each of you, and bless you all for being such a great support in my life.
So much has happened since posting last. I see my primary doctor next week and she will give me the referral I need to go to Worcester or Boston to seek a new surgeon's opinion. I have had horrible issues with going to the bathroom since surgery in March...I hardly go anymore, and my colon health has declined. I have issues with really bad pain in my entire pelvic area when going to the bathroom also (whether urinating or a bowel movement). Life is much harder now, and I HAVE to get a third opinion from someone who doesn't know surgeons out here. There is a major issue with that though- I will have to stay overnight for a few nights to get ALL of the tests I've had done all over again....start from scratch which I know will be a great thing, but I need to make $$ to pay for a hotel stay and also need to pay for gas, help with babysitting while I am gone, etc...It's a mess. I hardly have enough to live on now, never mind having to come up with a lot of money to stay for a few days to have the sitz marker test, defecogram, and all of the other tests done again. I know it's best to start over completely, and then check how bad the rectocele still is, after the rectocele repair failed miserably...but this is stressful, because until I come up with the money to travel out there, I can't even make the appointment.
I'm not one to ask for things, and it doesn't feel good at all to ask, it feels like a failure on my part for NOT having the income to be able to take care of my health right now...but I know that together, if you have any extra money to spare, I know we can all work together and get my health back to 100% for my children and myself. It's hard to open up and ask, but my faith has led me here to write a new post and to finally ask for help. I am desperate to come up with as much as I can for the hotel stay (for at least 4 nights in a week) and gas to travel that far to go to a great surgeon, and also babysitting money for someone to take care of my children while they are in school during that week. God knows how hard I have been trying to get out of bed each day and have been fighting to seek out new doctors to be able to take me in and get me healed. He knows how sick I am and how I've been praying for my health to get better. I am ready to get my colon taken out, with or without my rectum being healthy or not! I need to get better and my colon is declining at a rapid rate. I don't know how much longer I can handle the pain and bloating. I don't even mind if I need a colostomy or ileostomy bag anymore...I just want to be able to go to the bathroom, and no amount of laxatives seems to help.
Other new issues are that I am going in today to have my breasts checked out (again) because I have very hard lumps under my armpit...they no longer move, as they did before and they are growing in size. It's concerning because I also have a spot on my left lung, and that's the same side of the lumpy breast. I am not worrying too much about it, as that's not going to help....I am holding my head high and taking my own life into my own hands...I find something wrong and I immediately go in and get it checked out. I am not looking forward to any kind of surgery at all, but know that if I need to have it removed, I will....with no hesitation. I need to get better and I have lost over 39 lbs in the past 4 months and not sure why. My blood work shows issues with my lymphatic system, so I pray it's nothing bad, and able to take care of it easily. Please pray for me that all goes well and after my Gyno checks my breasts out, she will refer me to get a mammogram- I had one a few months ago and since then have had significant changes....so it's time to go back in to get re-checked....no laying around anymore....I need to be here for my Niece and Children.
If you can find it in your hearts to spare any money at all, please help me come up with money to be able to see the new surgeon way out in Worcester or Boston and be able to get the surgeries I need so desperately. God bless your hearts for following me all of this time, and may God always watch over you. If you ever feel something isn't "right" inside yourselves, please, go to the doctor, and when things get worse, go seek out new ones. Your body doesn't lie, and YOU know yourself best. Never stop searching for answers until you've found out why you're feeling the way you are. Be your own best advocate. God Bless.
I feel cheated! I have been so ill since surgery and bleeding every time I go have a bowel movement. I've gone back to the surgeon and he's noticed that I have bleeding and also that I have a "flap of skin that has opened up and will eventually heal" which is causing the bleeding. He also noticed that I have a series of NEW prolapses that I never had before having the Transanal Rectocele Repair which includes: Uterine, Bladder, and Cervical Prolapse!!! I have pain and pressure each and every single time I am done urinating. It feels like a weight pushing down in my entire pelvic area! It hurts and I have cramps non-stop, and also get these horrible pains after urinating that last for a few hours....I dislike going to the bathroom because I am afraid of how much it hurts, but know that if I don't "go" it will cause a kidney infection, so I force myself to get up and go every few hours.
I am in bed almost all of the time. I told this to my surgeon and he didn't seem to care. I went to my new Urogynecology dr. who is a great dr. He was very thorough and polite which I very much appreciated. He noticed that I have an "elastic like pelvic prolapse" and when I go to the bathroom or put any pressure down on my pelvic region, it comes down, and when I am laying down or resting it goes halfway back up. Unfortunately, being only 7 weeks out from surgery, there's nothing that can be done to fix that right now, because I still have swelling and could make my issues much worse. He did notice something that alarmed me though! I STILL HAVE A RECTOCELE!!!! How is this possible?!!!! Hmmm.....let me think, since I am a smart and intelligent young lady: "THE LAST SURGEON BOTCHED ME, AND IT OPENED UP AND STILL REMAINS"!!!! So now I still have a small rectocele, which means that nothing was fixed correctly, so what did I endure all of this torture for? I am so miserable and weak lately, and noticed that I am losing more weight (3 more lbs in 2 weeks) and have VERY low blood pressure ranging from 90-95/over/45-58!! I notice the dip in blood pressure a lot when I go from sitting to standing....I sometimes have to sit down on the floor, no matter where I am, because I feel like I am going to fall down, so it's best to just sit before fainting. I definitely have more issues wrong with me that stem deeper than visibly seen! I need to address ALL of my health problems one by one and get to the bottom of why my blood pressure has been so low since surgery....it seems strange that ever since that same day, my BP has been extremely low. I am usually 110/60 faithfully, all of the time, no dips, and it's steady on my charts....why is it so low now? I know I have more issues also that I HAVE to get checked out but I am so scared. I have a pulmonary nodule: a spot on my lung and also have another breast lump...I have to get these things checked out and even though I am scared as heck to find out what's going on, I know that this could possibly be causing my weight loss. So, I will get the issues checked out and will be able to update, good or bad on here.
Life is not as I expected. Prior to surgery, I was in pain about 5 days a week, now I am in constant pain and have to take breaks a lot....it's hard to leave my house because I have this new pain in my right hip upon standing....it's so weird! I sit down for a few seconds and when I stand up I feel sharp pain that causes me to limp! I have enlarged lymph nodes in my groin, neck, and under my armpits. I also have cramps all of the time in my abdomen and also still have sudden severe bloating all over my abdomen which makes it hard to go anywhere, because I never know what will bring it on. I hardly go to the bathroom (bowel movements) despite my taking FIVE different laxative/fiber/softeners!! My colon issues still remain and I now have to find a NEW surgeon to remove my colon....which now my rectum may not be suitable to connect my small intestine to....so I may end up on an ostomy bag, which I am not opposed to anymore! Whatever is going to make me FEEL BETTER is what I need and desire! I have come so far, from not wanting that at all to wishing for it just to feel GOOD again! How crazy is that? I just want to feel better. I am so sick that my children are sad for me and feel like I am not the "same"....Keyahra (my girl twin) told me that she's so "sad for me that I am not feeling good" and that she "wishes I never had surgery because I am so sick now and not better anymore" and that breaks my heart. A 6 year old shouldn't have those thoughts....but it's the truth....her Mommy is unwell and I am very sick right now. Maybe there's something missing from all of this? Maybe there is more to the story that isn't being seen....for me to be this SICK and in bed EVERY day, what is truly going on inside my rectum? I am just so sleepy ALL of the time and can hardly get up each day. Showering is a challenge, it takes all of my energy, and then to get dressed up and to go places is like taking all of the gas out of a car before driving it and then pressing the gas peddle just to run out and sputter......I am exhausted and don't know why.....everyone else who has had this surgery feels great after a few weeks, and here I am suffering, feeling like I have been cheated....I don't want to sound like a cry baby, but I have to be honest and have to spill my thoughts onto this journal, as this may help someone else, or may possibly help myself.
One thing I know for certain is that my faith is still present....God has a plan, and even though I am not sure of why I am suffering, He is the one that knows the future....I can't go searching for reasons, and causes, etc...I have to allow my life to keep going and I have to push each day to get up, but know that God knows my pain and He will help me! He will not let me suffer forever and there's a reason as to why I am feeling this way, and I have to keep getting the help I need from dr.s and from the bible to keep myself up and running.
I pray that I find the answers that I seek, I pray for better days and most of all I pray for all of those who are suffering, are weak and have sickness and diseases. Keep your faith and never let yourself fall from Jesus' hands. Know that God knows your pain and will never let you fall to the bottom, only the Devil himself awaits you when you let yourself "go" to the bottom, so pick yourself up and keep going on. Reach to the stars and cry out for God, let Him raise you back up and let Jesus hold your hands when you're too weak to hold your own hands. My own words will keep me strong, and I pray they keep you strong also. Know that though you may be suffering and sick, we are sick together, and we can make it through our trying times together.
God bless each of my followers and readers. Bless your hearts for following my own personal journey. (((((((((HUGS))))))))
It's been awhile since I have posted- partially because I was angry! Mad that the surgeon that I had BOTCHED my bottom and rectum! Mad that he had thoughts that I am a drug seeker, despite my telling him I NEED YOU TO FIX ME, NOT GIVE ME MEDS!!! And mad because he tells me NOT to go to the hospital anymore, because they "don't know what a rectocele repair is, and can't do anything to fix me and I know he simply doesn't want anyone to KNOW that he BOTCHED me!!! Mad and disappointed because something told me it wouldn't go well, since he was in surgery for HOURS prior to him finally getting to me 6 hours past my time sheduled for surgery, I really required and begged him to take an hour to himself, but he's so arrogant that he said "no, it's fine, I am ready to go now" and wheeled me in! Why not take a break? 13 hours is a LONG time to operate on ONE person! And he also said "it's fine, he's young and will bounce back" and didn't seem concerned at all about his patient!
I am one month out from surgery (post-op) and have WORSE issues now than I did when I had the rectocele!! I heard his words when I walked in last week jab my heart like daggers- he said "Marie, I wish I never operated on you because I can't keep giving you meds- you should be all better and no one else that I've operated on has ever had an issue after surgery, so i'm unsure that I can help you" I told him I don't want meds!! I wouldn't even accept more!! I want to be FIXED!! Then I had a very PAINFUL exam in which he told me: If I can't handle it there in the office, I can physically examine my rectum in the operating room with anasthaesthia" OK....looks like I am good to go, let's poke around so you can physically HURT me!!! He poked me and I bawled like a baby the whole time, but did it, and was glad I did it....He said the flap of skin that's still OPEN and HANGING is still "intact" and will "heal over time" so looks like the hole that is open and hanging there where the stitches and staples popped open is just part of my new anatomy and I have to deal with it....he refuses to admit that the surgery was a failure or that he botched me....he also treated me with an arrogant attitude and I felt like an idiot. I feel that he simply doesn't want me to go anywhere else because then he will have to talk to them once they tell him he ruined my rectum!! It is like a BACKWARDS rectocele now! There is a large lump that faces backwards instead of forwards- I can't go to the bathroom either! Much worse than before....and I have LOTS of blood come out on a regular basis...this wasn't supposed to happen....it's so heartbreaking that I am still suffering one month later and then catching attitude for me being so sick from this surgery! I feel like I am being punished because of HIS mistakes and he doesn't want me going to anyone else? Yeah RIGHT! I made an appt with a NEW surgeon and refuse to stop moving forward until I am FIXED....no one will tell me that I can't see anyone else or to go anywhere else while I am still "healing" when I should be HEALED a week ago! I am NOT going to let any man tell me what to do- thanks to me having a backbone, I went hunting for a new surgeon. :)
I finally felt good enough to call a NEW surgeon today- He has FIVE star ratings! 23 years of practice and seems to be excellent. So I called and have an appt for next week- I will see the urogynecologist who is also a surgeon and will hopefully find a solution to fix the rectocele botchery rectocele repair and can also put my whole pelvic anatomy back into place. I will volunteer for a full hysterectomy at that time also- I'm done with my baby making days and despite my NOT being married, and as much as I know this could possibly affect my future relationships, I know this is best for me, with so much cancer in the family and my mother having a full hysterectomy at 38, and also my having recurring ruptured hemorrhagic cysts on my overies, I am ready to have everything taken out.
Thank you to all of the dear people who have followed my story and I apologize for being so delayed in updating everyone. God bless each of the religious people and many great wishes to those who aren't religious. You have all been so supportive and sweet during my time of uncertainty and illness...I am so thankful to have so many people who are so wonderful. :)
I will update after my appt. next week.
NO PROCEDURE!! I ended up staying overnight and although many of the staff on the team planned on completing a "procedure" to help me get back on track but it never happened. My surgeon decided NOT to do anything because he doesn't want to make things worse, I suppose? I ask that as a question because at this point, it's NOT pain meds that I am seeking, it is RELIEF! I got discharged earlier and I knew I wasn't ready to go home, but they didn't keep me, despite my VERY low blood pressures (85/48 to 96/52) throughout the day....despite my sudden severe bloating and stomach ache and NOT being able to have a bowel movement! I can't even pass gas, so they gave me prune juice with miralax, colace, senna, milk of magnesia, and even ordered little suppositories which I have yet to make it to the pharmacy to pick them up, but we will save that for when I am able to drive....I seem to have an "issue" with being "full" in my rectal area but can't poop. I went back by ambulance two nights ago, because once again I began having rectal bleeding, not as bad, but it was very frightening, felt intense pressure and pain in my lower abdomen and lower anal/rectal area and I thought for sure they would do a procedure or surgery to attempt to alleviate my symptoms and signs, but my own surgeon decided NO, the answer is NO....so you can imagine my disappointment when I practically got kicked out of the hospital today after being treated poorly by the other on-call surgeon and she told me to "go home and take pain meds and rest, go back for a follow up with my own dr. and there's nothing they can do for me" she said more than that, but I will spare this poor journal page, and I will also spare myself the tears because I felt completely UNready to go home! I am sick of feeling sick....I have a bulge in my vagina which is MUCH larger than when I had the rectocele and was full of bowel movements! It is HUGE! It hurts, it is large, and it is very sore and tender...I was told it's "swelling" but after almost THREE weeks, it is STILL swelling?! I also broke several stitches, which will "heal" I suppose, since that's also what I was told...I am unsure what to do, I have been in bed, taking pain meds, taking valium for spasm, and each day seems to bring more pain and more sorrow....I wish I had better news, and was high-fiving my Niece Jasmine when we found out I was getting prepped up for a procedure, but all they ended up doing was a quick x-ray of my abdomen, for what, I am unsure, but they took one and that was really all I got done the entire stay...just meds every 6 hours, which I feel intense pain after 4-5 so I end up suffering quietly, because I REFUSE to be one of those girls who uses the call button, I don't use it at ALL, except for the after surgery when I almost fell....that's the ONLY time I used it, lol...no nurse call bell for me....I refuse to waste their time with me asking for pain meds, when I KNOW the rules and they CAN NOT give me any prior to 5 hours and 45 minutes....they can give 15 minutes early, but that's IT.....so why be a trouble maker? lol...that's just NOT me. I did however smile, thank everyone, and maintained my kindness no matter how abandoned, hurt, and alone I felt during this stay....Today was overall a bad day, but I grinned and bared it and I prayed hard. I know God MUST have something in store for me, because for me to get sent away without treatment, there HAS to be a cause for it, and it's out of my own control, because God has much more power than I could ever have, and none of us know His works or what He has planned...I pray He helps me soon. I know He won't let me suffer like this for too long, and I refuse to let Satan come along and hold me down either!!! I will rise above it and will somehow make it to a better place...I will get there, one day at a time.
~~~~Lord God, I am in so much agony, emotionally and physically, please, Lord, Heal me! Help me get past this, as I don't want to be on the pain meds anymore...please show me signs of wha is in your works, your plan, so that I don't feel like the devil is winning me over...let me see your signs that you show me, and let me feel your presence, because Lord, I am lonely, I am scared, and I don't know what to do right now. I know you can heal me, Lord, I know you are with me, and Lord God, I know you're the ONLY one and only true God. In Jesus Name, I Pray, AMEN~~~~~
I'm going in for a "procedure" later....whether that requires "just"stitching up the lost/broken stitches, or actually cutting into my vaginal or abdominal cavity to get to the rectocele and fix it the right way.
I'm SO blessed that FINALLY surgeons are LISTENING!!!!!
It seems that the hospital staff just don't "hear" me or better yet BELIEVE ME when I come here (to the hospital). So I'm very blessed that my prayers are being answered; I prayed that God would help me and that I could be healed. So let's just pray it works.
Please pray. I'll update you as I find out.
I came into the ER At baystate hospital at 2:30am by ambulance yet once again. I've had vomiting and diarrhea and finally "thought" it was under control when I suddenly got a severe bloated stomach, sharp stabbing pain in my rectum, vagina and lower abdomen (and pain all over my abdomen), and began bleeding rectally AGAIN! I had my transanal rectocele repair on the 8th of this month and SHOULD be getting to a good place now- and on the 18th I came to the Emergency Room (also by ambulance, same as this morning). I had HUGE blood clots, pain, dizziness, overall feeling horrible!! I was released and told to continue taking it VERY easy and not overdo it, which I've listened to...and on Friday (or one of those nights....when on pain meds, all days and nights seem the same and easily mixed up) I had MAJOR projectile vomiting...sip of water drank, sip of water flowed out!!! It was terrible, but I made it through. Then the next day I took Zofran Valium and slept off the feelings of nausea, afraid to vomit...but awoke VERY early in the morning to a nice gift of a horrible case of diarrhea!! Everything I took in by mouth came right through! Color and all! Red juice, red "runs", orange juice, orange "runs"!! I finally handled two days of waiting for money to clear in my bank and could afford immodium! Boy was I a happy girl! So NO "runs" yesterday....BUT then Jasmine was beautifying me and we were watching tv and I stood up to feel an huge amount of pain in my e tire abdomen, and a tearing feeling in my rectum and vagina!!! I tried to poop, but couldn't, instead I ended up with my "Hemmies" (named my nagging hemorrhoids my Hemmies in order to make "friends"!! Lol) well, needless to
Say, I began rectal bleeding AGAIN! My foot was shaking like a leaf, I cried my eyes out and was so scared.
So......I took the ambulance to the ER, and finally got in my room 20 minutes ago @ 7:15am, and am apparently awaiting a "procedure/surgery" where they're going to take a look at everything and correct anything wrong! FINALLY?!?! Did it have to take all of this for SOMEONE to LISTEN?!?! I've been suffering non stop! But God knew it and I'm blessed to be here.
I'll update more when I know what's going to happen. I have no idea what will go on inside the operating room, they're still discussing a "plan of action" for me, but I DO KNOW that they will FIX ME!!!! Please pray that I'm healed and can this time REALLY heal the right way. :)
God bless you all. I pray each of you have a good day and not in too much pain, can find rays of sunshine to brighten your days, and will be ok today. My prayers are with each of you everyday.
Many blessings. Xoxo
Oh Lord, where to begin, lol...things just keep getting better...or shall I say STRANGER than ever....I am completely being sarcastic!
I was napping on the couch and all of a sudden jumped up as quickly as possible and raced to the toilet and violently vomited about 15 times (all liquid and eventually stomach acid, which hurt like HECK!!) for about 10 minutes....Oh Lord was it awful! I was shaking, couldn't catch my breath, had sweat (cold sweat) pouring down my face, neck, hands, and back, and finally asked Jazzie to get me a glass of ice water (she was such a sweetie rubbing my back the whole time) and I took a couple swishes inside my mouth and spit it out.... I am not sure what is wrong with me, but something is terribly wrong...I can feel it in my heart. I am being strong because I HAVE to be....I am getting up each day because I HAVE to, but honestly, I am scared....I am having these bloody noses that are gushing and it makes me lose MORE blood! I would prefer not to have transfusion, but I am on the verge of getting one...I am so sleepy and exhausted from this procedure...I vomited and while doing that I pooped my pants! I am still wearing a pad full time because I never know when poop will just come out! I honestly prefer a colostomy bag at this point! My colon problems have started up again and I have horrible pain in my upper colon....so even though I am having bowel movements SEVERAL times per day, I STILL have PAIN?! And that means I still have very bad problems and I just want all of this OVER!! I know it's irreversable, I know it can't be turned around, I just want it to be SOON! Nothing can be worse than the recovery of this "major surgery", but what can be worse?! I know that the next surgery will go much smoother and if I am going to never be "normal" and wear thongs again (sorry if TMI, but my thongs make me feel sexy and my granny panties and PADS make me feel so disgusting and bad inside- well, lets face it, make me feel bad outside too, because I POOP MYSELF!!!!!! LOL. I have to laugh, because what else am I to do? I thought before that I would never want a total colon removal with a bag, but heck, give me the bag! Colostomy or Ileostomy me and make me NOT poop out of my behind!!! I am ready for this, so Please Lord God, Help me! I have to get better.....I can't continue pooing myself at random times, or have the smelliest gas that anyone could ever expel out of their hemorrhoided anus~ Smells like the bottom of the earth and before I couldn't even toot (pass gas) at all- it would suck back up because the rectocele (bowel prolapse) would push into the front and eventually just fill up my frontal part of the prolapse and then have no where to go except back UP....so please, lets stop this horrid stench coming from my back end!!! Or have belching issues with the smell and taste of rotten eggs!!! Ewwwww!! So gross! I never know when I am going to let my toots go, because I have NO feeling in my anus, and never know when I am going to belch because I am a lady and NEVER burp!! I always am able to hold them in until I can get somewhere private, or make them quiet, but not anymore! Nope, those suckers come right out and sound like a trucker is standing by....the smells that come out of me are horrid!!! Oh LORD, are they awful! I didn't expect NOT to have feeling in my lower genitals! I have absolutely NO feeling what-so-ever, I hope to be able to still have pleasure in bed eventually....I can't imagine finding a man in my future to marry if I can't even perform the duties a wife should definitely perform with a husband! I am praying hard for my life to return to normal and to be ok. But hey, if a guy can't handle a chick pooing every now and then, well maybe I wasnt meant to be with anyone, right? wrong!!! lol....Had to bring more jokes...these meds sure do make me feel GREAT! Oxycodone 20mg IR (immediate release) and 5mg Valium
Keep praying for me, as each day brings something new and something strange, healthwise, and it's been a VERY tough recovery from something that should've been a relatively quick and easy healing process- not to say it wouldn't be painful for a "normal" person, but my lupus seems to be taking this surgery horribly and doesn't like the foreign objects that my handsome surgeon has inserted into my rectum.....anyways......Keep praying, keep following me, and please send this link to others so that they can send it to even more people. I hope my story touches others, especially those who suffer from colon and other illnesses, I hope they find answers and find comfort in following me until my health returns to a better place....I pray they come to me and can talk to me about their own issues regarding their health...it helps me to help others and gives me courage to strengthen people who are at a loss of faith and for me to walk them through their hurt with their physical and emotional health. I plan on writing a book about my life eventually, from the beginning when I was a happy little girl, to the physical, emotional and sexual trauma from my mom's ex boyfriend, and then to the lifetime of my finding abusive men, dabbling with drugs for a very short time, having been a lost girl and being in group homes, hospitals and homeless shelters...I know those places and bad things that happened all helped me find God and helped me find "myself" I look at my past with love...I wouldn't be so caring and loving if I never was abused. I love with my whole heart and I never let life pass me by. I love myself enough to share my story with others. And now with my health issues, being a single mother, I have such a story to tell and so much faith to put into it....I have touched many lives and I live to help others. My favorite things include being there for others, mentoring others through their own health issues, getting them to look up to the stars, to look to God and let Jesus hold their hands, help them to realize that surgery is not the worst thing, sometimes surgery is the ONLY thing to help them get better, and helping them makes me realize that I am going to be better if I also find myself a good surgeon and I did...so looks like me helping others has been a gift from God Himself, and I am truly blessed to have this gift. I am lucky I had a bad past, because I am ALIVE! I made it! I am here, I made my mark on this world and I will continue to love with my whole heart and will continue to be there for everyone who needs me. I never run out out empathy or sympathy...God gave me a gift and I will cherish it. :)
I am happy to be alive, so pooing my pants and all, granny panties and all, I am alive!
~*~*~Lord God, thank you so much for loving me whole heartedly, and even when I am sick, I can feel your presence. Thank you for helping me find laughter each day and releasing stress by laughing and smiling with my loving Niece Jasmine. I love you Lord God, and I know you will always be there for me. You've given me the gift of life, love, and appreciation for literally everything in this world, when most don't appreciate much...I continue to strive to help others, and it helps me to help myself. Thank you Lord God for that wonderful gift. Thank you for helping me get a new van, you blessed me in ways I can never repay you, and thank you Lord God for all of the blessings that you have given me. I will treasure each and every blessing, even the small ones, like when I have a moment of seeing a sunset and feeling warm inside and like I see something so beautiful it makes me so happy. Lord God, You are my Heavenly Father, and I am so blessed to have you in my life. You've given me life and I will treasure it until the day I die. Thank You Lord God! You have Angels watching over me and they are doing such a great job. In Jesus Name, I Pray, AMEN~*~*~*
Today is a weird day...I awoke to poo all over me! I have NO control of my back end anymore, we are no longer friends and each day I wake up with smears, but this time full fledged poo!!! My surgeon said that it may take awhile for my nerves to begin working again, but it's time like these that I am thankful that I am SINGLE!! I would NEVER want anyone to wake up next to me with poo being all over my backside, up my back, and on my hip.....gross! It isn't the "normal" thing for people to have this happen, so don't ever let me detour you from getting a rectocele repair done, this is a very different case than most of them....I am blessed I had the rectocele done because I am able to go to the bathroom with NO issues, I am able to sit down, go poo, effortlessly! NO more using my finger in my girly part! No more pushing endlessly, with NO outcome! NO more issues at all. I "Pop-A-Squat" (lol, love that saying) and am able to go to the bathroom and be done in seconds. The hemorrhoids are going away- shrinking as the days go on....only one nagging hemmy (hemorrhoid- I named them Hemmies, because in order to be "friends" I had to name them so they would be nicer to me than when we were enemies) and sure enough they are almost gone when I became friendly towards them- of course I had to scrape up change to get tucks pads, regular pads, have my lidocaine ointment (prescribed) and also had to buy aloe wipes, and vitamin e & aloe vasoline! My life savers!! If you are getting a transanal rectocele repair, get those things!! They will be your bestest friends, lol.
So, life with the new "assets" (without the ts) is getting better! but my insides still hurt very much....I feel a tugging and yanking feeling if I find myself doing too much, so I try to go easy....which is hard to do being a single mother and always being in control, lol.
I am glad I did it....got the surgery and I know I am one step closer to having the big shebang done! I want it overwith honestly, because after my hospital visit the other day, I was a big huge mess, taking the most BUMPY ambulance that I think is the only one ever made!! The thing jostled me around to no end! I was happy to get out of it and into a comfy bed...I was so scared! I didn't know what was happening with my body- but found out I have MANY stitches inside, to make that new bowel "wall" and I have a few that are no longer intact and had "opened" up a hole and just bleed out like the niagara falls waterfall! I've never known a poop shute to bleed so badly! And as gross as I am, I baggied up the clots and took them to the hospital!!! ROFL....that's me....I needed them to see how HUGE these suckers were!!
But in all honesty, I am still not feeling all that well....I am good at faking it. All I really want to do is sit on the couch (yes, sit! I can finally sit for short times on my hiney) or be on my side and just watch tv or play on my computer. I am still not feeling very good internally, which I am sure is normal.....but it sucks. I want to go out with my kids, do things, but when I leave home I find myself wishing I was right back home. I just don't think it's time to get out yet. I take small trips, like to the store, but have yet to go on a road trip and do something more fun. Of course I can't do much, because driving on pain meds is a hazard to myself and others, so I stay close.....lol........and I have another week of pain meds left, and after that I go to my pain management dr. and we will discuss what to do....probably go up on the fentanyl patch....I am on a 25mcg patch now, but maybe go up to a 50mcg.
Who knows? lol.....I am rambling......time to go clean up lightly, because my Niece makes sure NOT to let me do too much, because the surgeon made certain to tell her NOT to let me do much!!! LOL> and she certainly listens...but I have a meeting today here at the house with my parent aide and with DCF (both involved from when my twins were raped and molested by my ex landlords), so they come once a month (DCF) and my parent aide comes weekly....I don't even want company, but because this is for my twins' health and detrimental to their getting better, I HAVE to get up and clean up a bit, because my house looks like a tornado hit it with children's clothing!!! lol..
Thank you to those who have donated. Each time I look at this site or get ready to add a new journal entry and see more donations, my heart melts....God is watching over me and I am blessed to have those of you who may be facing challenges in your own lives, but you've taken out time and money from your own funding and have given it to little me....it honestly makes me feel so blessed. All of this money is being saved and will go to the visiting nurse, a nanny, and to all of my aftercare after the next surgery- the total colectomy. My life WILL get better, because I have angels like you looking out for me. Living angels!! That's what you are. Thank you for donating to my cause and for helping me heal. Even now, you've all helped me heal and each donation that comes in, is another donation that I see that will be waiting for my big surgery ! and one less stress I have to think daily about. We will do this together. I know we can all come up with my goal. :) Thank you again, to all of my living angels and thank you to God for answering my prayers. Amen.
Here is my lengthy update with some not so great news! And I am doing this journal entry as I am nodding off like a darn junky from being on so many meds for the pain!! LOL.....thank the Lord that God knows I am NOT a junky or else there could be some issues, LMAO.
Ok, where to begin.
I began having normal bowel movements FINALLY on the 7th day after surgery. I was impressed....thankfully I had been eating lots of fiber and also eating mooshy foods (mashed potatoes mixed with either peas, or mashed with white rice, activia yogurt, lots of water and juice mixed with miralax, taking colace twice daily, eating applesauce, pears, and lots of other stuff that makes me "GO") and it finally worked. God knows how scared I was that the pain would be horrendous, but somehow He must have answered my prayers of being scared because it all came right out several times per day until the other day- it was all good and dandy until I felt something "heavy and pulling" inside my rectum...so I went to the ladies room, sat on the toilet and out came TONS of blood and clots!! they were huge! and were solid!!!!!!
I thought I was getting better, and was doing good, but then this happened, at 4 in the morning and it kept happening, getting worse and then even worse! To the point that i became so completely dizzy and out of it that I asked my niece to come into the bathroom and help me back to the couch. We called the ambulance and I went directly to the hospital. I was so scared. Had i lost any more blood at all, I would have needed a bunch of blood via transfusion...but luckily I went right before things got any worse. They found out that my stitches have a small opening in them and ended up bleeding out....I didn't have bleeding AFTER surgery, so looks like my bleeding was meant to happen now, unfortunately it was a LOT and very thick and very smelly...so I am watching what I am doing, making sure I am resting, got a new refill for a stronger pain pill (oxycodone 20mg instant release) and taking my valium for spasms of my place where my "wall" of stitches and staples are....I am not overdoing it and glad I went in because when I got to the hospital, my vital signs were really bad!!
My blood pressure was super LOW!!!!! 85/48!!!! and then I got oxygen and a medicine, not sure what, but it took my blood pressure up a bit to 98/60.....so that's good. They were satisfied with that. When I came in my resperations were only 5-9.....breathing only shallow breaths and not really coherant to where I was or why I was there....they had so many questions for me, but I couldn't answer them...it was strange......then I found out my oxygen (saturation O2) was in the high 80's to mid-90's....showing that I obviously wasn't getting enough air and why not....
So, I was in rough shape. Scared, lonely, alone, worried, and most of all not knowing what was going on. I had to use a port-a-potty next to my bedside and ONLY large chunks of blood clots and blood was coming out. It felt like so much pressure down in my lower back and hurt when I had to go.....they didn't find out WHY this happened, but they think that my lupus is attacking my new "wall" and trying to fight with it. Who knows? All I know is I am messed up on medicines, in a good way, because the pain was intense and now I am able to get around and not be in agony.
I don't want others to be scared of transanal rectocele repair surgery because this is NOT NORMAL!!!! NO dr has seen this happen before and I had a whole team of surgeons who had no idea why or how this could possibly happen to me...they checked me out and the only thing they found to be a reason for it was that a few stitches (two stitches in 2 places were not intact anymore, which means there was a hole in between both places and it was causing bleeding....and then the bleeding from post-surgery was FINALLY coming out- all at once, but hey, it came out right? ugh, lol....so gross.
Anyways, I am ok. They didn't keep me because they got my vital signs under control and then they knew I could take my meds, sitz baths, put lidocaine on and do things myself in the comfort of home.......So I am home.
I am selling on eBay- trying to make extra income on top of this site, hoping for miracles to happen so that I can get extra help with my health.....here is my eBay site so that you can view it and see if you're interested in anything.....I mostly sell antique and vintage stemware (wine glasses) and other antique crystal glasses, etc.....things from the depression era and also other wonderful things that would be fancy in anyone's home. It never hurts to take a peek, right? And I offer free priority shipping if you live in USA......so what are you waiting for? lol.....go take quick peek and see what you see....if it's not for you, then thank you for following me on here and for being a great support for me. May God bless you in all you do. xoxoxoxoo
eBay (every single penny helps me reach my goal- 10% of each sale goes to helping me get well. Check it out)= http://myworld.ebay.com/jazziepazzie93 (just go to view my listings.)
God Bless. :)
I'm home- finally got home and am doing the best I can to find comfortable positions and taking my long list of medications (fentanyl 25 mcg/hr patch changed every 3 days, 10 mg oxycodone 1-2 tabs every 3-4 hrs, Valium 5 mg 1 tab every 6-8 hours for anal and abdominal spasm, colace to loosen stools, and miralax daily in my juice for stool).....
I had a VERY rough day Saturday. I got close to fainting and slunk down on the bathroom floor after sitting on the toilet and felt like I had to have a bowel movement...I stood up and put my PJ's back up and felt dark all around me and fell to the floor- pulled the "call bell" for the nurse and the team came running in...I NEVER used the bell ever before, in all of my hospital stays, and they knew something was wrong. I was placed back in bed (on my side of course, because I'm completely unable to sit on my behind at all) and had my vitals checked which were an alarming 119 resting heartrate and 90/48 blood pressure?!?! And 92% saturation. They looked at my eyes which were almost swollen shut, my fingers which were puffy and swollen, my throat felt tight which i assumed was from general anesthesia tube, and my chest was red! They asked what I had consumed that I could be reacting to, and I said the only new thing was HEPARIN injections sub q in my upper arms....had one shot in recovery room after surgery and another an hour previously to my near-fainting spell. They did some research and realized I'm VERY allergic and had an anaphylaxis reaction!! Oh Boy, my favorite! (J/k)....I was then told NOT to walk or move around unless going to the ladies room (with assistance). I got my Foley catheter removed and finally was able to use the ladies room.
My niece took the bus with my children in to see me and arrived right after I had finally gotten meds to help with my bad reaction to the heparin allergy. I was wheeled into the family room to visit- had to find a HUGE wheel chair so hat I could lean to the side and not put any pressure on my behind. I did my very best to endure about an hour of being with my beautiful children and awesome niece before I finally had to go back to my room to receive more pain meds. Overall, I was sooooo happy they came to visit. Pain or not, I love that they came. :)
Yesterday, my medications finally got regulated- I was able to drop the dilaudid iv meds and stick to the oxycodone 15mg tabs every 3 hours, along with colace, fentanyl, and Valium. It wasn't looking good at all for me to leave as my pain kept getting bad, I haven't had a BM, can't pass gas, have enormous ROCK hard hemorrhoids, vaginal discharge that looks like pale coffee grounds (possibly a leak in the incision from my rectum and vagina "sutured wall", and the low BP....but eventually I felt decent and really wanted my home and vowed to come back in 3 days if still NO bowel movement...so I left last night and came home to a loving family.
Today- I've taken my meds around the clock, I STILL haven't had a BM, very concerning, but praying it happens. I am tired and VERY achy- especially my hips. I have bruises from laying on my sides. I'll be keeping updates as they come...time to do my sitz bath now, trying to get my hemorrhoids and incisions to not be so "angered" as my surgeon said they are. I am doing all I can to have a BM before Wednesday!! Or back in I go!!!! Another admission for me- because without one, it could cause sepsis and infection on my incisions inside.
Thank you all for your prayers and blessings. God bless you all.
I'm in my room and in much pain- cant write too much, but here's my update.
I didn't get wheeled in for surgery until 6pm- got out at 10pm. I woke up in terrible pain and got tons of meds and muscle relaxers for that. I was in recovery until around 1:00am because they were busy trying to get me feeling ok.
The rectocele surgery went well. The recovery- not so well. I'm allergic to Heparin and had my 2nd dose earlier and got a rash, throat issues, dizziness and almost fainted. My eyes look like I got punched....it's crazy! I got my packing taken out (from my behind) and got my catheter taken out earlier and walked for a very tiny bit to only feel pressure and severe pain and tried to go sit for a BM to find myself about to faint on the floor.
So....bed rest for me. No walking at all, leg cuffs on, senna for constipation, colace, and Benadryl, dilaudid, Valium, and 20mg oxycodone tablets. Fun times.
My niece and three little children are coming in by city bus and will visit with me. I'm glad- but hope the Benadryl doesn't make me too sleepy.
My niece and children are visiting with me now and because I have a roommate, I am doing my best to be in a wheelchair lifted up on my side, as I'm unable to sit on my bottom at all.
The pain is intense- and my being allergic to the heparin caused a major set-back...I am doing my very best to have a good time with my family, as I know my children and niece are nervous. My eyes are SO puffy and I'm so dizzy. I'm blessed that the drs paid attention to how swollen my face neck and throat became, because one more shot could've caused full anaphylaxis shock! That would've been terrible.
I took a sitz bath- they sat me in warm saline water and I couldn't last the entire 20 minutes, as the pain is unbearable while sitting up.
I'm on loads of meds and it works for a while, but soon enough I am right back to needing more. I pray my health stays ok, because if I'm still unpredictable with a heartrate of 114 and Bp of 90/48 tomorrow, then I'll be staying once again.
I'm so thankful to my dear friends who've been following me through all of this. I'm looking forward to getting better so that I can do what makes me happy and support others emotionally on the amazing sites I'm on with other patients. Makes me happy to be there for others the way they are for me. :)
My prayers go out to all those who've fallen ill...may God heal you and see you through your days of sickness and sorrow.
God bless all my dear followers. I'll hopefully update again tomorrow.
Much love and prayers to all.
Hi my name is jasmine im maries neice. she did well in surgery and is now going into recovery. surgery was delayed to 6pm instaed of 1pm so they are just now finishing up. but she is doing good. its going to be about 2 hours before she is in her room. she is coming home tomarrow or the day after........ even though i know shes out and well i still have anxiety and am scared. i guess not being able to see her is whats triggering it i dont really know. im very happy that she is out and made it through. :)
Friday is approaching quickly! I'm wishing the days would slow down. Friday the 8th of March @ 11:30 I will check into Baystate Medical Center at the Chestnut Bldg and will get set up for my scheduled 1:00pm Transanal Rectocele Repair Surgery.
The surgeon will fix my prolapsed bowels and will make a new sutured wall. From what I've read and heard, it's horribly painful! I won't be able to sit up for a couple weeks, and no lifting anything, no overdoing it at all for 6-8 weeks.
My surgeon is aware of my rare bleeding disorder and has chosen to use General Anasthaesthia (medically induced coma) so that I don't attempt to get off of the surgery table as the time I had surgeries before.
I'm scared and feel nauseas just thinking about Friday, but know that if I don't have this done, I would never know if my rectal wall would hold up after my total colectomy (total colon removal) in the near future- my small intestine will be connected to my rectum and made into a new "colon" to remove waste. If I don't get my rectocele fixed (prolapse) I would have to wear a bag for life because right now, my bowel and rectum aren't strong enough to hold my small intestine and is causing pain and discomfort, so I'm blessed to have a surgeon who is aware of my young age (32 years young) and the fact that I'm a single mother who may find love someday....maybe (lol).
I'm trying to be brave, but can't hide the fact that I'm terrified of the recovery. I'm praying for God to give me the strength to be able to heal after this painful surgery, get home fast and learn how to use the catheter for a week or so, and how to be able to take care of my children and niece all at the same time.
~~*~Lord God, Please help me be strong through this week, hold my hand through this scary time and help me be healthier after surgery. Lord, this is my first of a few surgeries, all of which are major, and I need strength right now. I'm scared but know you're with me through this time of uncertainty. Lord God, I thank you for holding me when I'm falling down, I am blessed to have faith and always know you're here for me. Please help me not be so terrified. In Jesus name, I pray, Amen. ~*~~
I went to the hospital on the 15th and was there from morning until evening. I found out that I have a HUGE blockage from all of the tests- it seemed to have shut my bowels down and I had stools throughout my entire colon, and it was causing me to feel extremely sick and not well.
I have to do SEVERAL enemas and have already done some...I am feeling much better today. I am not as nauseas and finally able to eat a small amount. I still bloat up with swelling and pain when I eat normal foods, but I am doing my best. I don't have much money left for Ensure Plus, so I am having a hard time buying it, but that's ALL that really is able to comfort me and not cause such severe pains.
The hospital wanted to keep me, because I couldn't seem to regulate the pain at all, and was in such distress. I finally got the nerve to attempt to do the enemas myself at home, so that I was more comfortable, and they finally let me leave.
I have been SO nauseas that I haven't been able to log onto my phone or computer at all....it seemed like I would get so dizzy and nauseas that it felt like I was on a tipsy topsy boat! It was horrible. I am so happy to be able to finally log on and let my dear friends know that I am doing better today and not in as much pain and agony.
I have problems with my blood work, that needs to be re-evaluated. I have crazy liver enzymes, have some "iffy" problems with my lymphocytes, my neutrophils and other issues. I noticed I have a new lump in my breast that HURTS really badly, and although I had it checked out a few months ago, it seems to be growing, so I need to get that checked out soon, and just for piece of mind may have it taken out...I am not the "wait and see" kind of girl, not after all I have gone through with my health...I like to be proactive and get the lumps removed before waiting to see if they turn into something worse. I wanted this one out a few months ago, but the surgeon wanted to "see" what happens and now it's growing, so I am ready to get a new breast surgeon and have this removed. I also have a suspicious "lung nodule" which is a small "spot" on my left lung that needs to be re-evaluated soon, so I pray that they aren't linked together and something more than just a regular old "lump"....I would be so disappointed, because since the mammogram in October, I have had constant pain and the swelling in my lymph nodes on that side are NOT going down, they are actually getting worse than previously, so it's time to take control of my body and let it know who's boss! :)
Well, I hope this helps others who have gone through some of the same things, and now know that I WILL get better, no matter what, I will kick these diseases in the behind, and will conquer my illnesses. I am looking forward to being healthy again and not in as much pain. I look forward to the day I am able to just get up and go somewhere and not have to worry about my pain in my stomach happening while out, and ruining my quality time, or worrying about other pain and problems...I know I will feel better after my surgeries.
Had my AnoRectal Physiology done on the 12th and have had issues and ended up in the hospital. Here is my update from my website that I am part of, where I am involved with wonderful people who have helped me through all of my problems and issues.
I had my FULL set of Several tests: AnoRectal Physiology done on Tuesday, and since then, I have had SEVERE sharp pains in my lower abdomen, (not localized, but ALL over the lower half) and discharge that smells terrible, and haven't been able to have a BM since. The pain feels like a sharp tearing feeling...it doesn't go away at all, and is constant.
During the test I had problems and felt like TEETH were pulling out of my bottom when they pulled two of the six probes out....It was SOOOOO sharp!!! I said OWW several times, and my surgeon is EXCELLENT, and was very attentive, but it was really later on that day that I started feeling really SICK.
I have really bad nausea, extreme dizziness (worse than usual), headache that won't go away (usually excederine mirgraine works), feeling very tipsy, like I could tip over, and even HAVE tipped over several times, can't eat (which is common for me, but I usually at least can take a few bites a day of some kind of food) and even having trouble drinking ensure.
I'm worried because the sites on google all say NO complications can be expected, but I am experiencing very terrible issues. Its been two days and it's not getting better. My van was taken yesterday, so looks like no ride to the hospital if that's what it came down to....which I really do NOT want to go anyway.....
I do know this: He inflated the balloon probe to well over 250....whatever that means....he inflated it and told me to tell him when I felt like I had to go potty....I hardly got to that point....then he just stopped and told me I have a huge rectocele....and it has to be repaired before having my colon removed......
Is this NORMAL? Have any of you had a reaction from any of these tests? I am really worried and certainly don't want to go the hospital if it's not necessary. The nausea is TERRIBLE and just won't go away.....my heart feels like it is racing, and I feel very warm but without a fever....I go from freezing to hot....I even have trouble being on the computer for too long because it makes me so dizzy, that's why I have hardly been on, because I log on and feel like I could throw up. :(
Not doing so good.
I was able to see the surgeon and had MANY tests done- had the complete set of Ano-Rectal Physiology. I am still in the midst of figuring out pain relief if you can believe that! Since the tests I had done I have a "tearing" sensation in my lower abdomen...not sure what is going on, but have intense pain. Very strange!!
I am going to be scheduled for Rectocele repair done through my anus and rectum....and THEN after I heal I will have my huge surgery after I am healed....they will hopefully only need to take out my colon and attach my small intestine to my rectum, if all goes well.
I am sorry I haven't been on much....I have been in pain. And nauseas and sweaty....it's strange. I also lost my van- I didn't have money to pay for it, and the company was unwilling to work with me and came and towed it yesterday. I am really in a huge bind and now don't have a way to get around. My life is not really that great right now. NOW I not only need aftercare for my surgery and money for that, but ALSO $1000 downpayment for a NEW van!! I was paying $380 per month and now got it taken.....EIGHT years of business and THREE cars bought from that auto loan company and they choose to take it now?! I am mortified. :(((
I couldn't be more stressed out if I tried and this was the icing on the cake. I am so upset and sick. And now my pain dr. is acting like a fool and I need to get OFF Butrans patch but he refuses to call me back. :(
Life is not all that wonderful right now...I am so stressed out and don't know what to do. I am sorry I don't have better news. I wish I was happy but I am not only suffering internally, but also externally...My whole life is flipped upside down in a matter of two days....I was praying for surgery sooner, but my rectocele is HUGE and they have to repair that first, because that will impede my colon surgery and I won't have a standing chance to get off the ostomy bag once I get one...so I am glad he's being thorough, but I wish it was quicker than this...Now my surgery won't be until 2-4 months. :( I will have to suffer with intense pain until then I guess.
Tomorrow is the BIG day that I find out what is wrong with me. I will know if it's the BIG C or if it's just a dead colon and paralyzed small intestine. I pray it's the latter. No matter what the outcome, I am going to deal with it, just like I dealt with everything else in my life that has been bad. Good always came out of the bad things, and I have been a mentor and huge help to others who conquered the things I have.
I know my life is going to be on the fast track from tomorrow onwards....going from diagnosis to surgery and treatments. My life is going to change, and it may not seem like God has my best interest, but I have to somehow find faith within myself that He DOES have my best interest at heart....I can't let go of my faith now, as much as I am slipping at times away, I find my way back to God's loving arms at night when I pray. I pray for those around me who have helped me emotionally, I pray for my Niece and Children, who have been there to see me at my worst lately, and pray for my family and friends who are pushing me along when I can hardly hold myself up anymore. If it wasn't for all of you, I know I would be much worse right now. Yes, I am in bed almost 24 hours each day and can hardly move at times, but I know that the end of this pain and suffering is coming to an end soon. I will get surgery and be able to conquer this, just as I have conquered each bad thing in my life, and was able to make a positive from many negatives.
God, if you can hear me...Please make sure I get through this. Let me LIVE and be free from the pain that I suffer from day in and day out. Please don't take me...Don't let my bleeding disorder come in between the surgery and my life. Let me LIVE and breathe on this Earth for as long as you allow me to. Let me be a LIVING angel and help others who suffer from similar or the same diseases. Let me teach them to love themselves, as I am learning to do for myself, during this time of change. Let me love myself enough to be able to handle my scars and battle wounds. Let me conquer this thing, like I have conquered everything else....let me heal. In Jesus Name I Pray, AMEN.
I have been having a LOT of pain again after my 2 day break. I also have a couple new symptoms (stop reading now if you are queasy, lol):
I usually have HARD and TINY round pellets for my bowel movements in dark brown/charcoal color...but for almost 3 weeks I have had VERY light colored stools, very soft and skinny- MUCH different than usual. I also NEVER have bowel movements more than 2 times per week (on a good week), usually less often...but for 3 weeks since having these pale light yellowish/tan colored stools, I've been having MANY bowel movements and trips to the bathroom. I feel WORSE after going to the bathroom and have been NOT eating hardly anything each day....I've been feeling full and not well for weeks now. I feel weak, in pain and just overall not "right"... I got used to being constipated and now having this, my stomach is feeling "different" and even worse than before.
My appt with the surgeon is next Tuesday...I hope I can hold out until then. I have been on the verge of going to the Emergency Room, but am scared that they will admit me, and I am not ready yet. I can't leave my niece home without help, I need to be prepared in the beginning.....I will be ready once the 12th comes, but am so nervous (without telling anyone about how I really am scared out of my mind of this new issue of pale stools) and am worried. I know something is terribly wrong, and I don't want to make my niece and others worried, but know that my life may be in danger with these worrysome symptoms. I had tan stools before but only for 2 days and I also have liver issues that are unknown yet. I know for sure my liver is enlarged, and that my enzymes on the lab tests come back high sometimes...and I also know that my surgeon was very concerned about those two days of tan stools...I saw the look on his face and his questions were extensive about that topic...so I know this is not good, but am so afraid to get checked out.
I pray I get the financial support that I need so badly to get the aftercare that I need. I am fading....I don't like to say that, but if I do say it, I feel like maybe God will know I need Him to hold me up right now. I am living off of Ensure each day and only a few bites of food. I do NOT like having the nasogastric tube inserted down my nose but know that they will give me that if I am unable to eat....I don't want to get that, another reason I am steering clear of the ER.
I am so dizzy, weak, in pain, and overall sick.....so many new things each day happen, and pain spreading throughout my entire stomach...mostly on my left side, but now spreading and I know this nagging, gnawing pain is NOT normal. I asked for an earlier appt with the surgeon but the nurse said that he is only in the office 2 days per week and there are NO spots left for appts any earlier than the 12th.....so looks like I will have to hold out and be patient and know that I CAN try to make it until next week without going to the ER. If things get worse, I will go to the ER, but I fear they will keep me this time....so I will do my very best to stay away.....sometimes I am my own worst enemy....
Please, Lord God, help me. I need you now to hold me up and guide me to where I need to be. In Jesus Name I pray AMEN.
The days go by and I'm looking towards the future...no one knows what the future holds, or what kind of news I'll be getting at my final appt (final exam and set surgery date) on the 12th- but one thing I know is I'm beginning to look forward to surgery being done. My life right now is filled with agony- pain all over the inside of my entire abdomen each time I take a bite or sip of something. I have lost more weight and know I'm fading. The surgery will help me get to where I need to be, so I am finally accepting it (or beginning to anyways).
I called my surgeon on Thursday and the nurse called back. I asked what my test results were from the gastric emptying study and the fluoroscopy small bowel series- she said she isn't able to tell me and the surgeon needs to be "face-to-face" to give me the final results and also told me it's a lot to go over and I asked "should I be concerned? Is it bad?" And she said I really need to sit down with the surgeon and he will go over everything with me.....I have to admit, I was concerned, but being God's child, I HAVE to trust in Him and let Him hold me up and not get wrapped up in being scared. I'm scared sometimes, but mostly in too much pain and too weak to be too scared.
I pray I get seen sooner than the 12th because I'm on sooooo many meds- 8 total that don't do much other than cause side effects. A new medicine is Marinol (a federally approved drug) used for cancer and HIV patients to help them eat...if it will get me to eat, I will absolutely try it. I'm almost certain that I have GASTROPARESIS (they told me my stomach is VERY slow to empty (also called gastroparesis)...I'm certain of it, because my stomach is always full of food and the times I do vomit, I let out stuff from yesterday. They noticed my stomach barely opens to let food into my intestines- it was a tiny droplet instead of a steady flow of food. I'm pretty sure I finally pinpointed my upper belly pain. Now the bottom half has to be explained.
Just wanted to update. I've been in bed and hardly able to move, so I've had no energy to log on, but here's my update and more to follow.
God bless my friends and followers for reading my updates and following my story. May you all find hope if you or someone you know is battling with chronic illness.
I've been here since 7:30 (it's now 9:35) and usually at a fluoroscopy for small bowel series you drink 2 cups of barium...I am on my FOURTH and have had 3 x-rays done and the barium is NOT moving past my stomach! They need my small intestine to be lit up, but the barium is moving sooooooo slowly that they can't see it yet.
The dr said drink another cup, and I will, no complaints, as I try to be a good and kind patient at all times, but I did tell them that I'm feeling pain in my upper abdomen. Not nausea, but this hard lead-weight pain.....they will note that in the file.
Why does my stomach take so long to begin emptying into my small intestine?! Most people are out of here in half hour to one hour...I've been here for TWO hours and the small intestine isn't lit up at all....it's JUST NOW beginning to empty (very slowly) into my small intestine.
I'm a trooper though and when the nurse handed me my fourth cup of barium and had a sad face and said she felt bad, that's exactly what I told her: I'm a trooper and need to know what's wrong with me, so I'll drink it and be happy. :)
I'm scared though, just a little side note- worried and scared because this isn't normal and they are worried. I can see the nurse and dr discussing me and they have a concerned look. :-/
But, I'm here, and can do this. Even if it takes 2 more hours, I'm patient, kind, and never complain to the dr.s.
**********************************************Update: Today at 12:17 pm
JUST got home.....it finally went down and filled up my small intestine (small bowel) and lit up on the x-ray. He had to push down on my belly with this paddle with a pillow on it thingy, and get the fluid to move out of the way, and noted that I am "full of sh_t" literally....even though I have taken the enema and miralax and duralax preps....but then again, if my food takes HOURS to go from my stomach into my small intestine, than obviously I will always be backed up! I am so full right now....it hurt like heck when they pushed on my belly with this paddle thingy, but they got really good shots and told me they will give the results to the surgeon.
I pray that my Ileum is able to be connected to my intestine, so that I am able to have my colon removal...if not, small intestine and colon will be coming out and I will be on the Bag for life.
I'm glad it is over and now I can drink a coffee....been looking forward to one all day, lol....turbo coffee from Dunkin was my treat for my long test. LOL.
Tomorrow (early) morning is my Fluoroscopy appt. They will give me Barium and light up my colon like a fluorescent light....The part that has the blockage will be lit up and they can determine if the blockage is in fact a cancerous lump...I know one thing for sure, I am blessed to have a surgeon who is so attentive to my colon issues. He has ordered emergency tests to check for whatever it is that is not "well" inside of me.
My prayers are that I am able to get the aftercare that my health insurance won't pay for, such as a visiting nurse and the treatment that they will perform. I can come home quicker than 14 days if I have a nurse in place to visit me daily. If I am unable to get services I will have to remain in the hospital for a longer time, which means my 19 year old niece will be left alone with my 3 young children, and she doesn't drive, and has no support system to help her to be alone for that long, as she suffers with PTSD (post traumatic stress disorder) and would definitely have a rough time being alone for that long...a couple weeks is the longest I will be without my children and without my home....I pray I can reach my goal, as so far, I have many prayers, which I am so very thankful for, but my goal hasn't even begun yet.
I know times are rough with money, and I know that people would donate if they could. I thank you all for your prayers and sympathy messages. It's going to be a long road to recovery and my children have to go along for the recovery time with me, just as they have gone along for the years of my being sick. I am so excited to show them that their sick mommy will be able to get up and go places randomly, we will be able to play and do fun things, other than have a sick Mommy in bed most days.
~~~~Lord God, Please hear my pleas, my cries for help. Your son Jesus is my savior and my faith is falling. I need you both right now, more than ever. I don't want to fall from my faith, and need the security and healing of both of you. May I get the help that I need medically and I pray for healing and recovery from my illnesses and diseases. Let me be the Mother I deserve to be. Lord God, you've seen me struggle for years, since a young and tender age of 4...Help me heal. I love you Lord God, and I have a small amount of faith left. Let me trust in you and let me hold your hand through this scary time. In Jesus Name I Pray, Amen~~~~
I went in for my Nuclear Medicine "Gastric Emptying Study" and found out that even my stomach is VERY slow to function and digest foods and drinks. The Surgeon also scheduled me to get another test Monday to check my colon for blockage, Cancer, Polyps or anything else that could be diseased....It's called a Fluoroscopy and I will drink Barium and then my colon will be viewed on x-ray to see the parts of my colon that couldn't be seen on the colonoscopy. My defecogram test came back with a big FAIL....Not only do I have a HUGE (larger than they thought) Rectocele, but I also have Severe Pelvic Floor Laxity (ALL of my pelvic floor muscles- anal, rectum, vaginal, etc are NOT working at all....they simply don't function anymore)....so I am getting used to the idea of having the Ileostomy (getting the bag that attaches to my outer abdomen and has a piece of my intestine sticking out of my belly to place my waste into the bag).
I pray that my story reaches others, as my surgery is coming soon and I do not have money to help me get through the surgery, I am scared and pray that a miracle comes through. I may be having surgery in a month...or sooner if I can't control the pain, as I am already having so much pain that can't be controlled for the past 12 days). I pray that others are able to follow my story and are able to reach out to me with any questions or advice, as I am a person who loves to help others and feel that it is necessary to my own healing to be there for others who are faced with Colon issues. Most of all I pray for all of those who are suffering with any kind of disease or illness, and I pray that they get better soon.
~~~~PLEASE HELP ME REACH MY GOAL~~~~~
If anyone can find it in their hearts to help me with prayers and possibly small donations to help me with my surgery, I would be so appreciative. I am in desperate need of an aftercare visiting nurse, a babysitter/nanny to watch over my children while I am in the hospital for 11-14 days, and a van to get my children to school. Even small donations add up, and I am desperate to at least make it to having a visiting nurse after my surgery, as my other diseases (systemic lupus and bleeding disorder) cause very slow and painful recovery after surgeries, as noted after my appendectomy, core needle biopsies on my breast lumps and also my wise excision lumpectomy. My only income is Social Security (Supplemental) as my illnesses cause me not to be able to work. Please help me find my way to reaching my goal, or even make it halfway to my goal of getting better. My surgery is coming up quick and I would have to set up the visiting nurse prior to surgery in order to guarantee that my aftercare will be set up correctly, and to make sure that a nurse is available to help me.
I know finances are tough for all of us, and I very much dislike asking for help and reaching out to people I may not know, but feel that this is my only option, and my only choice, as my family has no support for me and I hardly have friends....I have learned to be a do-it-all myself kind of Lady, but with my life being turned around completely, I now know that if you don't ask, you won't ever know what could have been. So this is me asking and praying for prayers and financial help.
Had my Defecogram today....if I could imagine it being any more awkward, I think that would be giving the test credit! It was crazy...and needless to say....I FAILED the test. :(
I tried like heck to perform how I am supposed to and I just couldn't perform the way I was supposed to. I am not sure what this means now for having my "make-shift" colon (large intestine attached to my rectum).....If my rectal muscles aren't working, that could be the end of my entire colon and mean life on a bag. My worst fear.
The surgeon ordered MORE testing to be done...I am going in on Thursday at 8:00am to get a Fluoroscopy (another barium x-ray test) to check if there are cancerous lumps, disease, or inflammation. Another awkward test much like today's testing. I thought for sure that today's test would go at least "good" and my next appt would be on Feb. 12th....but got a call registering me for 2 days from now. I am not sure what this is for...is it because I failed today's test or did they "find" something?! I tried calling the surgeon but couldn't get ahold of him today...I will definitely try again tomorrow. My next test after that is on the 28th- It is called a Nuclear Medicine Gastric Emptying Study- to check how my digestion is going.
I am glad the surgeon is doing all he can to check each and every angle of my body, but I am so burnt out and tired and sick. I am lonely, scared, and just plain tired. I am looking forward to being able to walk normal, go out with my family and do fun things again, eat again, because it hurts like heck to eat, and just to LIVE again, like a normal woman. A YOUNG woman, who I am supposed to be.
I am looking forward most of all for God to help me fight this illness and to get better and be stronger than ever and be able to help others with their diseases that are similar to all of mine.
My life will be so much better when I am healed...My children and niece are my life and lately I haven't been able to be the mother and auntie I need to be. Life for me was VERY different as a child...I wish my mother was there for me right now, because when we are sick, we look to our loved ones for support, but my own mother isn't around for me to ask for emotional support. I tried to explain my Lupus, Fibromyalgia, and the Colonic Inertia and Colon Surgeries that are coming up, to my own mother and she said "you're young, and you will be fine....you probably don't even need surgery, you're too young to have that problem" but coming from a world of abuse in her home (not by her, but by her ex boyfriend, my whole life, everything is seen with her pink colored glasses....nothing is wrong, everything is fine, type of woman. I hardly receive a simple hug from her, and I forgive her, but for some reason because her ex raped me anally for YEARS after giving me a sedative called rufanol (so I wouldn't remember much, but would feel the pain and be nude in the morning) she just can't seem to forgive me....it's NEVER a young child's fault and she would leave for a couple days when he would yell at me, so I hardly expect she will ever come around....it is always awkward being near her because I believe she doesn't want to remember all of the yelling....for her it wasn't abuse, just yelling....for me it was everything....but I still forgive her, yet she won't come around....so Holidays we go there but I look forward to going home. When I get my stomach aches or have a lupus flare, she tells me to lay down somewhere and completely ignores me....seems that she is just not "attached" to me anymore....maybe she blames me for the rapes and abuse....but it didn't happen to her...it happened to ME and I forgive HER for leaving me alone all the time.
She won't be coming up for the 1 1/2 hour drive to see me, my loving grandparents probably will come, but I feel bad, as they are in their 80's and they BOTH have colon cancer, bladder cancer and who knows where else it has spread...they look great, but their cancer is spreading and all they are doing is getting tetanus shot treatments to stop the progression...so who knows when the last time they will be able to stay on this earth. I am glad they are there for me as much as they can be, but makes me sad that they have to take such a long drive out here just to see me when they are ailing also.
I am not sure where to go, how to get there, or what to do anymore. This pain is NON stop and I am falling fast. I do nothing except for sit or lay on the couch and have the laptop in front of me attempting to distract me from my extreme pains. Between the lupus and fibromyalgia and now my colon not working anymore, I have just about had it with all of this! I am a person who likes to have everything "planned" and under control....but this has control over me and I am not in control anymore....it frightens me. I have fought too hard for too many years and I am ANGRY that I have to be so sick when my family is so healthy....seems like I not only had to go through rapes, abuse, self mutilation (when I was very young), anorexia, systemic Lupus, Fibromyalgia, herniated discs in my neck, and now a COLON THAT GAVE UP ON ME. My son is very asthmatic and sick today....breaks my heart- he has a high fever and laying on the couch. I know meds won't work once he gets like this, and he will more than likely need to be admitted, and my dear Niece is very sick too right now, seems to have a really bad stomach bug or some type of flu....and I am doing what I can but it feels like I am failing at that too.....usually I am right there, not in so much pain and able to help and bring them to the hospital, but I can't even drive right now to go anywhere, never mind sitting in the hospital....so my loves of my life are laying on the couch and we are watching movies all together as a family, as we so often do, and I am watching the two of them closely to see that they get fluids in them and are able to keep stuff down. I just want to control my OWN life again.....this is the type of pain that could push someone over the edge, and right now I am lingering and teetering on the edge.....trying to stay afloat, but how the heck am I supposed to have faith when my prayers just aren't working? Lord God, PLEASE, help me get past this stomach pain and this lupus flare so that I am able to care for my niece and son. Amen.
Another day of pain....was praying that today would be the day of the break, where I can feel a lot better and do things, but my stomach feels like I have massive knots and twists inside and feels like tearing in my upper right stomach. So time to get motivated somehow, by the grace of God, because.....now my asthmatic little boy has a 102.5 fever, my beautiful niece Jasmine has flu symptoms and hunched over the toilet, and finally got her to come to the couch and lay next to Keyghan and be "sick buddies". It's amazing what the body can do though, because when I heard that they were both sick, I got out of bed and adrenaline kicked in, the mommy in me kicked into overdrive and I attended to them. Now that I am sitting down, I am feeling the full amount of pain all over my stomach- radiating into my back.
My defecogram test (most humiliating test on earth!!) is Tuesday and I plan on calling my surgeon tomorrow and making him aware of this pain I am having for the past week without a break. It seems to be progressing quickly and taking over my whole stomach, it's hard to eat anymore, and just ran out of my beloved Ensure drinks, and there's no way I am able to pull off getting out of the house without looking like the hunchback of notre dame's sister! My back hunches over to support the pains in my stomach and how embarassing is that? ugh....trying to make a quick joke to relieve the uncomfortable emotional feelings that come with colon issues. I wish I could just have a talk with my colon and tell it to WORK!! Darn, it, WORK again....but then again, it never really did work, even as a child I would lay on the bathroom floor with intense pain with these crazy "attacks" but when i went to the dr. they never knew what it was from and sent me home with stool softeners that would work a WEEK later! It takes a whole week for anything inside to find its way to the bottom and out! It's so crazy when I think about it. It used to take a week, but now takes over a week and a half....certainly is exciting to see corn come out after eating it 1 1/2 weeks ago! (had to crack a joke). In all actuality, it's times like these, when my son is sick, or when my niece is sick and need me that I break down inside, because I used to be so good at it, and now am such a fail....I just want to be better, and really soon, so we can not only do fun things, but also help them like I used to be able to and get them better too. All i can really offer is "being there" because I don't even have money to be able to buy medicine to stop Jamsine's vomiting, and don't have money to get to the hospital. I feel like a failure, but I am trying to keep positive. When I am really feeling like a failure, I log onto inspire.com and say how I feel. The group I am in is AMAZING and they never have bad words to say. I pray this is all better soon, so I can be the Mommy and Auntie I NEED to be.
The days have fallen into routine- I wake up in pain (the lupus and fibromyalgia are really bad during the winter), I take my medicines which don't seem to do much of anything, but I take them anyways, I drive the kids to school (or on the weekends I do what is next): and then go retreat to my personal favorite spot on the sectional sofa- the one that reclines like an arm chair...I sit there for hours, using the computer attempting to fulfill my brain with knowledge and place things up for auction on eBay, play farmville 2, catch up with FB friends who I have never met, but seem to be the most special and endearing friends on earth, Lord do I wish they lived here, because I would do anything for more support right now...and then I dread getting up to go potty- I get up, try to act normal, and make it in there without being too dizzy along the way...I then sit right back down and act like the vegetable that I feel like I am......In pain, some days better than others, like today is NOT a good day, for the FOURTH day, I have very bad pain all over my stomach and trying to get through the day the best I can. I am sometimes short with my children, as much as I try not to be, and feel that my life is so bleak right now. I sometimes log onto inspire.com and write some blogs, but I don't want to drag others down with how I feel internally, as they are also going through the same feelings....I am there for them and try my best to only post about myself if it is absolutely necessary. The things I used to love doing: going to the park with my children, going to the mall to window shop, going on road trips, and random trips to anywhere, are no longer a part of my life....I go to dr. appts regularly, get probed, prodded, and touched in places that makes me think about the rape from my mom's ex years ago as a child, and get ultrasounds, cat scans, x-rays, and iv fluids regularly. Because of my health, my family has had to become part of MY own health...I don't see how it is fair, and I pray that something good comes from the surgery I will be getting. I want to be the fun girl I used to be- getting up and going out and having a blast with my children and my niece. I pray that my story will reach others and that they will be able to see that all of these feelings are part of the process of having an illness. I hope and pray that others will reach out to me and I can help them with their own journey and we can be helpful to each other. I most of all pray that God heals my pain and takes my agony away. My children and niece need me to be better, and I am a fighter- I have battled so much and have done so good! I have been a trooper up until now, and I need the strength to keep fighting, because as my own body is giving out and my stomach is winning the battle, and my agony and pain is taking over, I don't want to lose this one! I haven't lost a battle yet, and NEED to have a support team to help cheer me on during this time of uncertainty. My family lives far away and with all of the abuse, not much of a support, I forgive my mom, but wish she was here to help, unfortunately, she is one of the ones who tends to ignore my health and doesn't understand it because I "look" fine on the outside...and my amazing dad lives in Hawaii- I wish more than anything that he could be here for my surgery. He is my best friend and I love him more than anything....but it saddens me that he just can't be here, but I understand why and know that if he could, he would....and then my only friend is my niece...I let a lot of "bad apples" go many years ago because I found God and they found the Devil...I was being brought down and abused even in friendships and found peace with Christ, so let them go because I deserved better....I simply pray that I find support during this time of uncertainty and never ask for help, it feels strange and foreign to me to ask for help, and I am not even sure what I am asking for....I just need prayers. I am so scared. Not sure how to find myself back to the healthier person i used to be, but God willing, I know I will try like heck.....I am going to fight this illness.
Just got home from the Emergency Room here in Westfield- I HAD to go, as this was my 3rd day feeling extreme pain that wouldn't go away, and seemed to be getting worse. I'm trying to be there for my children (especially my daughter who turned 10 today!) but ended up caving in and finally went to the hospital to be evaluated. My blood pressure was very low, and the dizziness was very intense...I usually run B/P of 110/64 but ran 94/58 today...no wonder why I was DIZZY! Made sense, but still didn't make me feel better. I got an iv with two large bags of fluid, morphine (didn't even touch the pain), and also zofran for the nausea. When i get these stomach pain "attacks" I can't eat or drink...my food seems to just sit in my belly and hurts really bad until I finally vomit. It makes sense, because even on a normal day, my food takes over a week and a half to go from my stomach to the toilet, so it makes sense that when I have my stomach attacks with pain and severe stomach distension, that it makes me worse due to not being able to digest the food and drinks I am putting into my body.
I think the plan is going to be to call my surgeon Monday and explain what happened (he had a medical retreat to attend today, so I was advised to go directly to the hospital), and possibly get my tests sooner. One test is next week (Tuesday) to get a defecography- aka HUMILIATING test that I am not looking forward to, but know that I have to do it. And then in February I have another test to check my muscles, making sure I have something to work with when it comes to "attaching a make-shift colon" out of my intestines...that will be the make or break day- finding out if my muscles will even be able to function if they attach my large intestine to it....I will go speak to the surgeon and ask for advice, and I have a feeling that his suggestion will either be to admit me until I am going under the knife, or possibly move the tests much sooner and get the ball rolling. Morphine doesn't even touch the pain in my stomach and I just layed in a ball on the bed. I had my niece by my bedside, thank God, and she got a few "attempted" smiles out of me...I just wanted to make her feel happy, because I feel so low and sick right now. I can hardly lift a gallon of milk these days because I am so weak...my weight went down 28lbs unexpectedly over the past 4 months, and I am weak. Even my faith is growing weak...The last thing I want to do is admit that, but I am....I am mentally and emotionally weak. I don't have a plan for when I am admitted...how will my children cope with their new school? How will they even get there? Who will help my niece with the children when I am gone for that time, and most of all how will I be at home after the surgery without a nurse to help me with my stoma and ileo bag? Who will check my vitals and make sure I am not having an embolism again? Will I have to keep going to the ER and be re-admitted all over again once I am home, like I had to do with the other 2 surgeries? I am lonely...I have great kids and an amazing and supportive niece, but truth is, I am lonely. I feel alienated from the world....the only time I am able to get out and tolerate being on my feet for a few minutes is to get my little ones from school each day....that is my life. I just need God to heal me and reassure me that I will get better, because right now, medications aren't even working the way they should and I am in so much pain...I am wondering sometimes why I am even still here after all I have suffered through, and hopefully, it is because God knows I WILL make it through this and with all I have endured through out my lifetime (sexual and physical abuse, rapes, breast cancerous lump removal, appendectomy, systemic lupus, and fibromyalgia and now THIS,) maybe God keeps me alive because he knows I am always there to help others through their struggles, I am always there to lift them up spiritually and emotionally, and I am loyal and honest to my dear internet friends and my few real friends, and maybe God wants me to survive to prove to myself that I am worth more than I feel like I am right now....maybe I will share my story with many all over the world and help them conquer their own illnesses. I pray that's why God is keeping me alive.
Marie J Mello
Attached is a photo at the hospital today taken by Jasmine (my precious niece who asked me for a smile)....
This is Jasmine. I am 19 years old and my aunt is Marie. I call her Mimi. We are at the hospital right now because Mimi's stomac pain got so bad that she had to go get an iv and meds. We are waiting for the dr to come in and tell us the blood lab result. She does not feel good most of the time but today she woke up with a bloody nose and worse pain. :(
I hate seeing Mimi try to hide her pain. She still smiles to make me happy but I know she is not ok. I'm scared for her and her pain keeps getting worse! I need my Mimi to feel good again and be the Mommy she wants to be and the auntie she used to be. I love you Mimi so much! I'll be here for u no matter what. Xoxoxo!!! My mimsterz!
My 3 little LOVES~ Hoping to one day make their future brighter and get well. The Lupus and Fibromyalgia are here to stay, but I pray with all of my heart and soul that my colonic inertia can be healed. I pray that my life can become brighter than it is now....and most of all I pray to regain my physical strength and be able to give my children the Mommy they deserve, and the Mommy that they have been missing...I need my life back.
So, I did something unexpected after my loving niece, she is 19, and I were reading one of our amazing member's postings. She told us that she is on a personal donation site and has her story up for people to view and comment and also to help.
I have NEVER asked for help, nor am I expecting anything to come of it, as I know everyone in this group are dealing with MANY financial, emotional, physical and mental challenges at this time, as I am too....but my niece convinced me that I don't know what will come of it, and with NO expectations, there are no let-downs. So.....I did it....I put it up and posted some of my postings from here and placed them on my personal site.
For those that know me, you know I don't go out of my element and ask for ANYTHING, never mind donations! But again, since I am not expecting it, I think of the site more of an outlet, much like this one, and am just happy to get my story out there and let others learn from the emotions that I am feeling through this hard journey. Times are so rough right now, and the future is not certain, nor is my health....I can only hope and pray that my children will be ok with me being gone for a lengthy hospital stay (the dr. estimated being in there for anywhere from 11-14 days....thanks to my systemic lupus and previous torture that I went through with prior surgeries). I have only two more tests to be done before getting the big surgery...I know for sure either my small intestine will be removed- or my whole colon AND small intestine will be removed......I also know that I will need a visiting nurse once I go home to help watch over me and make daily checks since I have a bleeding disorder and may go from fine to bad and NO thanks to Medicare, they don't cover that for young people (?!), so out of pocket that will come, but I only collect disability and barely make ends meet, so how will I ever overcome that obstacle? Also I have to pay for a bus to get my children to school, we are out of district and my niece doesn't drive, and without ANY family support or friends~ losing them along the way from them being healthy and simply not understanding that I am sick internally, but look great externally :(
My life hasn't been good, but I always made the best out of it...I did what I had to in order to survive. Right when I think I've conquered the abuse, rapes, and become a brilliant flower, I get sick....very sick. I hide it almost all of the time, because I don't want to drag people down...yet my niece sees it and lives it with me, as do my children...they watch me go from feeling "decent" to becoming extremely sick and becoming bloated, looking like I am 10 months pregnant in a matter of moments, dizziness to where I have to randomly sit on the floor wherever I am at the moment because everything turns black and my knees buckle, pain that is so intense my face turns beet red and I have trouble breathing deeply or normally, and no amount of heating pads, ice or meds seem to help....it is awful to never know when I will be sick...sometimes we are at the park and suddenly we have to pack up and go home...the kids tolerate it well, but my heart doesn't. I feel terrible that I am robbing my children and niece of happiness, and living a "normal" life. My niece does everything for me, and I feel that she can't even date, or go places because she is so afraid that either I will have a lupus flare or intense infection (pneumonia, kidney infection, meningitis) or these stomach attacks while she is gone....I tell her I will be fine, but she knows how sick I get and how quickly. I know she doesn't mind sacraficing, but I DO mind...I feel like a total let-down, changing my children's school JUST because I AM SICK and need surgery.....it breaks my heart. My children have grown accustomed to "pajama days" with me, and watching movies while I lay down like a vegetable, not moving and praying I get better, but prayers never seem to work.....my stomach pains and infections land me in the hospital, always dehydrating me and leaving me feeling hopeless. This site that I made is nothing that I expect anything to come of....mostly it is to help others to know that they aren't alone...if they are feeling what I am feeling, then they can know that they can come to me and share their story. My one thing that I live for (other than my children and niece) is to HELP OTHERS. I love to help people and give them the inspiration that they need...I feel selfish that I am so down in the dumps right now, and so sick, because I am usually the one posting on others' pages, not posting on my own....but here I am, I am letting go of my secrets, laying it out there, and praying that my site helps others. May God Bless you all and help you through your journeys. (((((((HUGS))))))))
December 15th, 2013
woke up a little while ago to a SEVERELY bloated stomach and severe stomach pains...it feels like contractions but doesn't go away for a few minutes it remains constantly! I've had this before and unlike the other times, this time I took a bm for the past 2 days (small pellets, but took a large one yesterday). I'm worried because I still have 20 rings left in my lower colon and not sure if any are still higher up?! I have to wait until JANUARY 15th just to get in to TALK to the surgeon, then he will schedule a manometry test to check my muscles, and then I will go back again to discuss the results and THEN figure out surgery!! It could be all the way in march or April that I get fixed. But as much pain as I'm in, and laxatives do NOTHING! I exceed the maximum dosage and never have diarrhea...how will I last? I'm curled in a ball at a hotel (I went out last night and my house seems so far away because I have to drive!).
My belly is very firm, pains mostly on left side where descending colon is, and stabbing pain everywhere. :(((
I was UP yesterday and the reality is setting in today....Next week I go in for the defecography, and on Feb. 12th I go in for the pelvic floor testing...After that, we will decide precisely what surgery is best, once he knows more about if my anal sphyncter is even working correctly....
Today, I am NOT up at all....last night my stomach bloated up, and I am in AGONY all over again! I wonder if there is a way to post pics to the site? It is UNREAL how LARGE my stomach distends from being so normal otherwise.....I took pics to show the dr. because I can explain it, but when they actually see before and after, when my attacks happen, they will be SHOCKED!
I am in so much pain, so frustrated, and feel like a failure sometimes because my daughter has to change schools....and its because of ME and MY sickness. She is actually doing better today....I made cutouts of her name and phone number and taped them (like a business card) elaminated, hahahaha, and she is so excited to give out TEN of them to her dearest friends today....I also have this pre-paid phone from the state for low income, and told her she can hold onto it in her new purse that I gave her for her birthday, and she has been allowed to call her two best friends (after getting the consent from me) and sets her alarm for 15 minutes and talks away....it gives her some freedom and she feels like such a big girl. There are many rules that come with the phone...no calls after 8, no texting what-so-ever, and if she goes to her friends house (she has never been because I am a home-body and am always sick so haven't felt well enough to allow her to go to friends and have her friends here, due to never knowing when the attacks will happen) she has to answer the phone if I call- there is a LOUD and ANNOYING ringer I set for my own call, hahahah (I am stepping out of my element and allowing only 2 of her best friends since Kindergarten to have get togethers) and I am loosening up the reins you could say, hahahah.....it's time to allow her to be a tiny bit free, but not too free.
As for me....I feel pretty low today....I have been reading up on getting the small intestine removed and many people need a permanent ileo...I am sick just thinking about the temporary one...so not sure how I could ever love myself on the outside with that on me. I feel hopeless, weak and just plain SICK....the reality is setting in that my body will win this battle, and I am not too happy about it. My whole life I have been sick and hurting....whether from sexual and physical abuse, or from my own body fighting a battle with me....and now this....another surgery and this time a major one that there is NO turning back from. I am trying to feel good about this, as I sit here in agony, hunched over and in so much pain, but disgusted with myself for not having control over my own body anymore. Im sick of fighting, I am angry, lonely, depressed sometimes, and most of all feel like i am losing control of myself......I don't want to fight with myself anymore. I am wondering when this will end? Will the surgery heal me, or will God continue to put more on my plate that I feel I can't handle?
I am sorry to rant on and on....I will also be pasting some of this onto my journal and posting it up, because I desperately need support right now....I may have to go to the ER tonight, as I am in SOOOOO much pain and can't even eat.
I did the sitz marker test and had ALL of the rings left inside me (on the side of long part of colon- descending I think? and some left at the bottom- above my pelvis). My dr. from gastroenterology just called and he referred me to the surgeon. The dr. said I have a VERY slow colon and severe constipation, that begins in the upper part of the colon, which is causing problems...they want to send me to the surgeon so that I can get the manometry test done and then can discuss options for surgery soon after.
My appt is on January 15th and I will go for my consult and set up the anal manometry test. Depending on those results- which I am sure that the balloon will NOT come out manually with just pushing- I have a bad rectocele that forces me to have to use my finger to assist the vagina to push the bowel movements back towards my rectum, since bm's bulge forward and are painful- that will definitely make me fail the test. :(
After finding out the results of that test, we will discuss what needs to be taken out (medications don't work and I've been having problems for YEARS (since 3 years old- I am now 32!!) with constipation and these crazy sudden and severe stomach attacks with bloating.
I knew this was going to turn out to need surgery, so why am I so scared?! Why am I crying when other people have MUCH worse things than this? I know there are great success rates and have read up on people's recoveries, so what is my problem? I am worried and downright scared. I am worried about who will drive my children to school during my recovery time, wondering how long I will need to wear the colostomy bag- I am single and wonder who on earth would ever marry a girl with so many health issues (lupus, fibromyalgia, and now this!!) and guess I am just having a moment of doubt in my mind right now. I am the type with the glass always half full, and right now and having a little bit of a negative feeling.....I know it will pass, but I am so scared!
I am going to read up on everyone else's surgeries and comfort myself. I am so happy I found this website and no matter what the outcome, I know God gave me what I can handle, even though it feels like I can't.
My pit of my stomach has this gnawing pain thanks to being frazzled right now...I hope to find peace with this and not be so angry at my body for failing...I'll never understand how my mom and dad and brother can be so unhealthy, but I am the sick one! My grandparents have colon cancer (both sides of the family) breast cancer, and my aunts have bladder and metastisized cancers...I happen to have a mass on my lung on the left side lower lobe...that appt comes next Thursday for the pulmonary function testing....sit in a box and breathe in stinky air :~/
and I will find out what I need to do next. So many dr.s for so many issues! I am looking forward to getting better, but not so happy that I'm trying to hide my worry from my couple of friends that I have, trying to act "healthy" when I am so weak, physically tired, dizzy and overall not well.
Time to read up on Manometry and Surgeries....Make myself mask my upset feelings....
I had my appt with the surgeon today....he is AWESOME! Made me feel completely confident and let me know things that could or need to happen.....I asked if surgery is in the plan, and he said YES. He checked my rectocele and said "we can work with that" (at first he wanted to do possible surgery, but then felt it and thinks we can overcome that, or he can perform surgery for that at the same time), and he also HOPES we can attach my small intestine to make a NEW colon- if not, remove my WHOLE colon and my small intestine (and have to be on the ileo bag)....So I am glad he is very comforting and reassuring. I also told him about this site for his other patients, he logged on while I was there with him to research some quick "key words" and realized I just helped another patient of his because she needs some support, answers, and FAITH.....so that warmed my heart to know that I could be of help to others who are in such agony, as I am.
I have to get ONE more test done before the surgery, and then we will discuss the BIG DAY....and the rough recovery........(as I don't recover well at all, and with the bleeding issues I have been having, we have to take precautionary measures to ensure not to bleed out)...I need to get the defecogram soon, radiology will call me and set it up, hopefully it will be soon. The surgeon and I had fun looking at my colon x rays from when I had the sitz marker test done.....they were EVERYWHERE...he said my "colon isn't being very friendly to me" LOL! I love that he is funny and knows what to say when someone is scared out of their mind...I spent an hour and 15 minutes going over EVERY detail of all of my health issues: Fibromyalgia, Systemic Lupus, Colonic Inertia, VERY slow transit, previous history of breast lumps, talked about my family history which is EXTENSIVE with cancers....we discussed everything, and I am so much better now. He is AWESOME! He did the anoscope (think that's what it is called) when they stick a scope in your behind and take a peek at what is going on in there...not the most comfortable thing on earth, but he made it as quick and easy as possible.
Overall, I am feeling confident...TODAY, anyways, so no complaints. The sad thing is I have to change the kids' school- when I am in the hospital they will have to take the bus and we are out of district for a bus where we live....so time to change their school before surgery so that they can grow accustomed to the new environment. My oldest girl (she's turning 10 on Friday) is NOT happy about it, and she is going to be sad and miss her friends, but the twins (boy and girl- turning 6 on feb. 4th) are excited! Funny how the age differences makes such a difference. lol. I feel bad, but I HAVE to get better...how I have been living lately is NOT living at all....always in pain, bloated, dizzy, nauseas, headache, etc....I am not living right now, I am existing...so I have faith that surgery will help me.
My name is Marie J Mello, I am a single mother to 3 young children- a 10 year old girl, sweetest girl on earth and 6 year old boy & girl twins, my keys to my heart. I do not have family support, and don't have many friends (other than those wonderful people online in my support groups who have been such a blessing, and those who are on facebook and twitter who I have never met in person, but have made my life much happier).I live a quiet life with just myself, my 20 year old niece and my 3 young children. My life "looks" normal on the outside to most everyone I know, but inside, I am sick...VERY sick. I have conquered many things in my lifetime of 33 years, many battles and hurdles, such as sexual, emotional, and physical abuse from early childhood all the way into my adult years, and once I conquered that, I found out I have Systemic Lupus and Fibromyalgia, along with PASH (Pseudoangiomatous Stromal Hyperplasia), a rare bleeding disorder in which I don't clot (and suffer from nose bleeds that come on suddenly and last for weeks at a time and then disappear for months and then reappear again), and newly diagnosed as of December 2013 with something rare called Syringomyelia (I have several syrinx(es) sort of like cysts on my thoracic and cervical spine. It's VERY painful and if I don't have a Lupus flare and have painful joints, I have constant spinal pain that feels like zapping, stabbing pain, in which I take Tramadol, Fentanyl pain patches, and Ketamine daily to help assist with that. I also suffer from gastrointestinal issues- have had several tests done to figure out what shall be done to correct my situation. My colon is NON-functioning at this point and needs to come out. I know that my quality of life will improve greatly once my colon is removed. :) I have lots of infections and even have been hospitalized MANY times- several times with Meningitis, Kidney Infections, and pneumonia many times. I have also had problems with my "bathroom" duties since being a child and have always been told "you're just constipated" and sent home with laxatives. Now, MANY years later, and with what could have been FIXED many years ago, I have been seeing a Gastroenterologist Dr. who is amazing, and he said I have a Tortuous Mega Colon Long and Redundant (long, loopy, and twisted) and Colonic Inertia (very slow transit- removal of waste), and he referred me immediately to a surgeon. I went in to meet the surgeon Dr. in March of 2013, and was diagnosed with a grade 2 rectocele (bowel prolapse)- my feces prolapse into my vaginal wall and when I have to have a BM (bowel movement) I have to splint (use my finger inside my girly part...not so much fun! And so naturally I quickly volunteered for a trans-anal rectocele repair. It went horribly wrong!! The surgeon Dr. ended up botching the repair and I ended up with a MUCH WORSE (grade 3) rectocele than I had previously! AND I now have a full pelvic prolapse and may need to be on an ostomy bag after my colon removal- which I am absolutely FINE with. At this point, I am in so much pain so many days out of the week, and NOTHING makes the abdominal pain better, on top of all my other pain, that I feel like it will be a blessing to simply be alive and well with all of the issues that I survive with.
I have Faith that God will heal me, along with the funding that all of you may help me with so that I can get the tests and surgeries I need so desperately. :) I'm so ready to start the process of getting back in the game (I stayed away from Dr.s since April, because I had been admitted to the hospital with severe blood loss, as you can read in my updates in my journal entries). But, I'm ready now, and stronger mentally than ever...I'm getting frail and weak physically, and I keep fainting, I can't eat, I NEED to get surgery, and the only thing stopping me is MONEY. I can't get the tests I need to figure out my bleeding disorder, and to give me a PET scan to see if I have cancer, and other tests to figure out why my thyroid is so enlarged. Medicare is unwilling to pay for several of these tests, and I am barely able to get by each month, as I live off of disability, and have a very sick son- he has chronic asthma and gets admitted to the hospital several times per year....so I desperately NEED your help. I've NEVER asked for help, and feel strange even asking for help, but know that God steered me in this direction for a reason. I know that we can do this together. I know that there are people and organizations, churches, other places and foundations that MAY possibly be able to help fund me and I pray DAY and NIGHT that my goal may even so much as get half way there. :)
Please, could you kindly pass this on to everyone you know that may be able to help fund my foundation? Please SHARE & copy and paste my DIRECT LINK:
God Bless each and every one of you who have followed my journey. It has been one of learning, one of soul searching, and one of tears of sorrow and joy....I have found myself at some of my lowest points, yet those were the days that made me stronger. I now know that God gave me those days as GIFTS because I am stronger now because of those days! I am getting sicker and am so frail and ill. I know time is running out for me. I pray to get the testing I need soon. Please make my miracle happen so that I can know for sure that my surgeries can happen and I can begin to HEAL and start my life again. I am ready to LIVE and not let life pass me by. I am ready to get out of bed, and not be a vegetable...as I have been for months now. Help me make my dreams come true and make my miracle of health come true. Help me start my journey of healing. :) Bless your hearts and souls for being there emotionally and for all your prayers during some of my toughest times. It really helped to know I had a whole army behind me. :) I'm ready for what's to come in 2014. Let's bring it on. My children deserve their Mommy to be a vibrant flower that all 33 year old moms are...not one that lives in her bed 98% of her day and can't so much as shower by herself...let's do this and never look back. Let's make 2014 my year to start again and take control of my life and take it by the ballz and kick sickness in the booty ;) I know I can beat these things (yes, I may be sick with MANY illnesses and diseases, but NOTHING can hold me down once I get my surgeries)....because I have great people standing behind me. And for that I am one thankful girl, and with Faith, ANYTHING can happen, and my Faith is stronger than ever. Please, share my link and help me HEAL. :)
If anyone can relate to the trials and tribulations of before and after surgery it's me. Still recovering and pushing on each day at a time as I recover from what is now my 3rd hospital release and 2nd surgery to correct the first. Stay strong. In the end this will be worth it and you will be better and playing with your children and never looking back.
(NG1031 on AGMD Inspire.com)
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