My Colon Is Dead But My Hope Is Not
I have been dealing with "undiagnosed" digestive issues since I was 25. I have spent a majority of my 20's and now the beginning of my 30's suffering and living a life controlled by digestive motility disorders.
It all started with not being able to go to the bathroom for weeks at a time, nausea, noticeable and uncomfortable bloating (look pregnant/clothes not fitting), painful stomach cramping, chest pains and gurgling/trapped air in chest (unable to burp), weight gain, and increased stress and depression levels. It has ruined events and vacations, my attendance at work, my self-esteem and has been the cause of many sleepless nights. Needless to say I have gained a really good relationship with my heating pad.
After doctor after doctor, specialist after specialst, having every procedure/test/x-ray imaginable, trying all sorts of diets and food restrictions, doing physical therapy and many trials of medications I was being told I just had IBS-C and Acid Reflux. I knew there was something more serious going on with me so I kept pushing on with more doctors and more tests.
They eventually diagnosed me as having weak peristaltic function of the esophagus (which explains the pains/gurgling/trapped air in chest and inability to burp) and a small/normal sized anterior rectocele (which was caused by all the years I have been straining). Neither of these explained why I was suffering from the other more serious issues I was having. They were actually more less issues I was having as a result of the more serious things that were going on in my body.
At one point I had to actually ask to have a colonoscopy (yep I asked for one that is how bad I was suffering!) During the colonoscopy they could not even finish it. My large intestine was so long and loopy that they called it a "tortuous colon". And since they could not finish it that meant more tests in order to check the rest of it that they could not get through. I thought finally they figured it out and I could finally get this taken care of. That was until the doctor told me there was nothing they could do for me and there was NO surgery to fix it. I was devastated.
After much research I found that there were surgeries for dysfunctional colons and started to reach out to colon surgeons instead of GI doctors. I then started to be told that a total colectomy surgery could be the answer but that the surgery is frowned upon in younger adults. One surgeon wanted to give me a temporary colostomy bag to test motility before removing my large intestine despite all the testing I already had done showing the motility was abnormal. This would have consisted of 3 or more surgeries in a row. This made me weary as I was always under the impression that surgery was to fix things not diagnose things. That surgeon also told me there was no other testing that I could have and the colostomy bag would be the only way to know for sure (I learned later that they were wrong and I was right to follow my instinct not to move forward with them).
Another colon surgeon told me that the colostomy bag was not necessary based on my test results (I soon learned later that he was correct). His diagnosis was: "I believe that we have established that your colon motility is markedly abnormal based on the results of your Sitz marker study. Evaluation of your small bowel motility was the 24 hour Sitz marker image "“ yours shows all the markers in you colon by that time, as would be expected with normal small bowel motility. The evaluation that you have had was appropriate and thorough to rule out pelvic floor/neurologic abnormalities that can be the primary source of abnormal colonic transit, such as short segment Hirschsprung's disease, a large rectocele, or pelvic dyssynergia. Although you have a small rectocele, I agree that this is not the source of your problem. The other tests results (positive rectal anal inhibitory reflex, adequate balloon expulsion test, normal defecography) have essentially ruled out these other causes of constipation."
I was stressed on the edge of deciding if I should move forward with surgery why doctors kept giving me mixed messages. No one could even give me a name for my condition and the surgeons were disagreeing on how my surgery should be done. I was hitting dead end after dead end with doctors (still accumulating the expenses). How was one to decide on such a major surgery with so many doctors disagreeing if it would work? I kept asking my Mom to pull some strings in heaven and send me a sign on what I should do. I was starting to feel depression setting in even more.
Looking for feedback from others suffering with motility disorders I found a site http://www.inspire.com/groups/agmd-gi-motility/ and got a response from a woman named Marcia who told me there WERE other tests out there and that there are doctors who specialize in motility disorders like mine. She gave me the name and contact information of a doctor telling me "you have to see him!!" I listened to her and sent my story to Dr. Camilleri at the Mayo Clinic in MN. Not only did he respond but he also got me on his waitlist as he felt there were still tests that needed to be done before I moved forward with surgery! He was quite upset that anyone would tell me that I would need 3 surgeries and a colostomy bag to test motility!
I traveled to Mayo and stayed there a week where I met with Dr. Camilleri and had a full 48 hour slow transit study, an EKG, more blood work and a colonic manometry done. Based on my medical records, past test/procedures results and his findings I finally got answers!
My right side of my large intestine was slow and backing up into my small intestine. The pacemaker cells on that side were obviously not working. They referred to this as slow transit. I did not have IBS or SIBO! The issues I was experiencing were due to the issues with the abnormal, dieing colon! My colon was VERY long, loopy and tortuous as previously discovered. During the UN-SEDATED colonic manometry procedure they had the same trouble the doctors in the past had with my colonoscopy. To the point they had to do it twice and it hurt like hell! There was still some contraction going on in my colon when given a small meal and when given iv medication so before moving forward with surgery I was put on a one month trial of Resolor (which had to be shipped from the UK through a Canadian pharmacy so insurance would not cover it and I had to pay $150 a script out of pocket for it). Despite being done with medication Dr. Camilleri's reasoning for trying the medication and based on my colonic manometry results I agreed to try it. Unfortunately my body did not react positively to it and made me sicker. We even tried Resolor with Miralax and still nothing (literally). Dr. Camilleri was shocked and knew he had his answer!
At this point Dr. Camilleri felt I had tried everything and I moved forward with scheduling my laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic - Rochester Methodist Hospital in MN. I had to travel 7 - 8 hours there and back just for a surgery consultation with Dr. Cima who is the surgeon that Dr. Camilleri had referred me to. Dr. Cima agreed to do the surgery. He felt that I was a good candidate for a successful surgery because my pelvic floor and rectum muscles are still working and are strong. And my small intestine was still functioning. The good thing about the ton of procedures I had went through is that I knew everything was in working order which helps to avoid as many post op complications as possible. Once the large intestine is gone.. its gone!
Unfortunately all of this has racked up doctor bills, co-pays, scripts, medical expenses, hotel stays, gas money, time off work (with no pay) and debt. And once I scheduled my surgery it only got worse.
I am not begging for handouts. I have been stressing for over 8 years only making my condition worse and I am trying to find ways to make life less stressful on us. I have been dealing with this for so long that I just want it to be over with so I can move on with my life and really start living again. Every penny, every dollar, every thought and each person that spreads this link counts and is appreciated beyond words.
************ UPDATED SUMMARY SINCE SURGERY ************
* January 18th, 2013 - I had a laparoscopic colectomy with ileorectal anastomosis surgery done by Dr. Cima at Rochester Methodist Hospital (Mayo). The surgery went well and they removed 10 ft of large intestine (a normal one is 5 ft). The surgeons kept telling me "it was VERY VERY long" as if they had never seen one so long before. I was in the hospital for 8 days due to complications. I was throwing up every day until I was given an NG tube. They said my small bowel was taking its time to wake up. I was released from the hospital on Jan 25th.
* January 27th, 2013 - I was rushed back into Mayo by ambulance (thank god we hadn't got on our flight home yet) and was re-admitted. I was in massive amounts of pain to the point the paramedics had to pick me up off the hotel bathroom floor and I was having panic attacks . Apparently I had formed a blockage. They told me there was a twist in my small intestine near the anastomosis site that was "flopping over blocking the rectum". They also discovered a blood clot in my liver that formed during surgery that they had no idea was there. At the hospital the pain was so unbearable I was in tears and screaming in pain. My husband, Frank even told the nurses "my wife is a tough woman.. if she is in this much pain something is seriously wrong!!". After ALOT of morphine/dilaudid, another NG tube, CT scans, xrays, a sigmoidoscopy with balloon dilation, a decompression tube and alot of monitoring I was finally released on Feb 5th and after almost a month in Minnesota we were able to fly home.
My large intestine was sent to pathology and I asked for it to be donated for research at Mayo so they can get a better handle as to why this is happening in some people. They found there were barely any nerves left in the lining of my large intestine!! It really was DEAD! They even sent me a photo (see it in my updates). Now I have proof that it wasn't "just IBS" or that I was not crazy and something was seriously wrong!!
* February 26, 2013 - I was rushed to my local Silvercross Hospital ER in Illinois. After weeks of very painful cramping my bowel movements started to slow down drastically. Each time I was concerned I would contact Dr. Cima and his staff who would tell me this was the normal surgery healing process and not to be alarmed. Before I knew it I had not had a bowel movement in 3 days, was noticeably bloated and in more pain. I decided to contact Dr. Camilleri who instructed me to go to my local ER. I am glad that I did. The blockage came back with a vengeance. In a sense it never left. The doctors as Silvercross explained to me that the first blockage I got may have been due to the flopped over twisted section of the small intestine blocking my rectum however the twist was still there and would continue to cause me problems. The twist was the way my small bowl naturally curved when the surgeons connected it to my rectum. However it was a 360 degree twist right before the anastomosis. When the doctors at Mayo cleared the blockage with the balloon dilation the twist moved away from the rectum and opened up but it formed a crease where it had flopped over. So then my body tried to heal the crease and in the process was closing up the anastomosis connection. A GI doctor at Silver Cross tried the less evasive approach to see if another sigmoidoscopy/balloon dilation would open up the anastomosis connection but it was to the point it was pretty much almost completely healed shut and the procedure only lead me to more massive amounts of pain and the tubes were removed immediately. By then it was more days of no bowel movements and my small intestine was becoming inflamed and the pain was getting worse. I was put back on a morphine drip to make me "comfortable". It came down to it that another surgery was the only way to fix it. I was given Dr. Bass who was a wonderful surgeon. On March 2nd, he went in to do laproscopic surgery but ended up having to do "open" surgery to be able to see and fix things correctly. He removed the twisted area of the small intestine as well as the original anastomosis connection that was closing shut. He then created a new anastomosis connection that flows with my body and has a larger diameter. The small bowel no longer twists as it connects to the rectum. It now flows with the correct curvature to allow bowel movements to flow the way they are suppose to with less chance of a recurring blockage. In a sense he fixed my plumbing :) He also removed a small cyst on my right fallopian tube while he was in there that I was not aware of. I was released to start my recovery process all over again on the evening of March 6th. To say the least I was mentally and physically put through the ringer. I have even had quite a few mental breakdowns of depression during my recovery process but I pulled through. Since then I have been dealing with post operative sporadic chest pain attacks that they think could be bile reflux.They cause me to miss days at work and leave me incapable of doing anything when they happen. They feel like a heart attack and are incredibly scary. The day after it feels like someone had punched me in my chest and it takes me a few days to finally feel normal again.
* June 12th, 2014 - I was rushed to the ER at Silvercross again. I was having a chest pain attack that was worse then any of the ones I have had since my surgery. It shot across my chest and even down my back. After blood work, xrays, ultrasounds and gi cocktails they discovered I had pancreatitis and gallstones. I am on medication for nausea, spasmatic pain and anxiety (as needed).I have scheduled an ERCP with Dr. Ayub and gallbladder removal surgery with Dr. Bass. I have re-set my GoFundMe goal to reflect the new upcoming struggles.
* July 15, 2014 - Went into the hospital to have my outpatient ERCP done by Dr. Ayub. He went in and cleaned out my bile and pancreas ducts and got all the gallstones out of them. He also put in 2 metal stents. One for the bile duct and one for the pancreas. What was suppose to be outpatient landed me hospitalized for 5 days. At first they wanted to keep me to monitor me overnight because I was having trouble waking from anesthesia. Then when I finally woke up I was in a lot of pain. My pancreas became inflammed from the procedure and I formed pancreatitis again. The stents were also causing me additional sharp shooting pains in my side. I was released to go home on July 19, 2014.
* August 1, 2014 - I had my surgery to have my gallbladder removed. Dr. Bass was able to do it laproscopicly. He said that the surgery went well and that when he took my gallbladder out it was distended and larger then a normal size gallbladder. He is confident that the gallbladder has been causing my chest pain attacks for the past year. I was released to go home and was doing great until about 1am. I went to lay down in bed and was in so much pain I could not move. This was not typical incision pain or discomfort. Frank had to rush me to the ER. I was admitted back into the hospital for pain management and monitoring. Apparently I was experiencing muscle spasms as well as ileus (my bowels were not waking up fast enough). I was released to go home a few days later. I was on more unpaid medical leave to recover. My digestive system is trying to adjust to not having a gallbladder on top of already not having a large intestine. I am scheduled to have my stents removed on Sept. 9th, 2014. I have re-set my GoFundMe goal to reflect the new expenses.
Thank you to everyone who helped us so far. You don't know how much Frank and I appreciate all of your help. We could not have gotten through all of this without all of you.
It has been quite the journey and I am still dealing with my set backs but I am happy and grateful that I moved forward with my surgery. I actually forgot what it felt like to be empty and thank my lucky stars there was an answer for me. I do not experience constant stomach aches, bloating to the point of looking pregnant, my clothes fit and are actually too big on me and for the first time in 8 years can go to the bathroom. It's not an easy recovery process and the complications have been scary as hell but it has been worth it. I also know that had I given up and not tried over and over again to finally get a diagnosis I would have ended up on the ER table having this surgery done on me anyways (and hopefully the right one). So for those still looking for answers don't be discouraged by my journey! Keep looking for answers and don't let any doctor tell you it's "just IBS" if you feel it is something more then that! TRUST YOUR GUT!!!
With Much Love and Appreciation,
~ Nicole Garcia ~
Living Dead Girl Nicole (in the art and horror movie community)
ng1031 (in the Inspire.com digestive forum community)
** Please note that there is no charity tax donation account set up for this. Anything donated is considered a monetary gift from family and friends **
I will admit I will forever be haunted by my missing organs. The rest of my system reminds me every day of how much harder it has to work without them around. I just try to remind myself of how much harder it was when those slackers were in there not doing their jobs. There are good days and bad. There are missed days off from work, ER visits, panic attacks, constant diet changes, blockage scares with bouts of liquid diets and turning down social events. I guess you can say every day is a new adventure because I never know what my body is going to do and how it’s going to react. I learned to accept that this is my life now. It’s not perfect but I remember when it was worse. One thing stays the same. Saying goodbye was the scariest decision I ever made but it had to be made. It is also one of the hardest things I have ever gone through both physically and mentally (I still get depressed sometimes and even have some PTSD like symptoms) but I am alive to tell others my story. I am also blessed to have an amazing and very patient husband who has been my rock through all of it. Family and friends who care enough to check in on me to see how I am when I am not feeling well and to make sure I am able to eat when we are able to actually get together.
For those who still follow this because you are living with the same issues I had or a similar idiopathic digestive motility disorder don’t give up! When a doctor closes a door, open another one! I opened and closed 14 of them! Don’t allow them to tell you it’s just IBS or GERD like they did to me. You know your body better than anyone. For those contemplating a total colectomy with anastomosis surgery, I am not going to lie to you. It won’t be easy. You know because you’ve read my journey here. It’s far from easy. You may or may not have complications the way I did. You may not develop adhesions the way I have. But the one thing that is for sure is that you will need to learn to cope with the hard recovery and accept the whole new body you are given. The reward is that you get to sit on the toilet thanking your lucky stars that you can take a dump and most importantly are alive to tell everyone about it! Ha Ha!
I can honestly say that I am doing well. I have my occasional stomach aches that set me back a day or 2. This can cause me to miss out on work and other things but I know how to manage them. My heating pad will forever be my best friend and it my life now and always will be. I accept it and tell myself to never look back because nothing can be as bad as it use to be.
A few months ago I had to go on an all liquid diet for over a week. I missed quite a few days from work and we were close to heading to the ER. However thanks to my specialist at Mayo for always being there for me (even miles and miles away) I was able to get answers. Due to the symptoms he believes I could have adhesions from the multiple surgeries. This can cause blockages, nausea and the loss of appetite I experienced. After the liquid diet was over with he put me on this low fiber diet and I now have to avoid some of the foods I was getting use to enjoying again. I have gained a little weight now trying to adjust to it. You would think it would be the other way around but it's weird being told not to eat raw veggies and whole grains when it's been forced in our minds that they are good for us. A salad was my go to when I couldn't get anything else on a menu. Well... not anymore. I now have to eat as if my system could get a blockage alot more easily. Nothing that can clog up the system including ruffage. All my veggies have to be cooked or blended which is not as convenient. I am learning though. More smoothies and roasted veggies are becoming staples. I just have to figure out how to balance everything else out so I can lose these couple of lbs I tacked on. As many of my followers on here know... adjusting to diet changes/restrictions suck. So being told to completely look at my diet differently when I was doing really healthy food choices has been one of the hardest ones I have had to do yet.
So there you have it... my 4 year update. This is for all of you who are wondering how I have been and for those who follow me because you are living with this or a similar idiopathic digestive motility disorder. As always thank you to all of you for being the greatest support system a girl could ask for. Here is to a healthy and happy 2017 for all of us!
So Sunday evening I experienced a sharp shooting pain above my belly button that came suddenly and then went away. That was until 3am. It went across my whole abdomen and I was having issues standing up straight to make it to the bathroom. The results were me passing nothing but water and experiencing intense cramping during the process. I finally was able to get back to bed with the help of my heating pad. I awoke many times in the night to go again. Needless to say I didn't get any sleep and assumed it was something I ate that just irritated my plumbing. Which happens from time to time.
I took Monday off work as it continued to happen and to give myself a day to re-coop. Whenever this happens to me it usually takes a lot out of me (no pun intended). At one point I felt like I was feeling better and was finally ready to eat again. I ate a sandwich (which normally I limit bread but needed something to bulk things up). I kept it to fresh ingredients including light lettuce, some tomato and pickle and had low fat turkey. This normally works well for me. However it didn't and I continued to feel lousy. I didn't have any appetite the rest of the evening and just continued passing water over and over again. I started to wonder if maybe I had a stomach virus.
Tuesday morning I was exhausted but decided to go to work anyway. I played it safe because I had no appetite and my stomach was doing this on again off again cramping through out the day. I lived off bone broth, water and saltines all day. That evening I tried to make myself eat another sandwich but this time literally just bread, cheese and turkey. I was able to finish it but still no good results.
Wednesday was the same thing except by the time the end of my work day I was freezing. I had a small hoodie on while sitting outside in the sun waiting for Frank to pick me up from work. This time no appetite at all and nausea coming and going more frequently. I got home and put on comfy clothes, my robe and curled up in 2 blankets with my heating pad. This is when I started to think ok maybe this is a stomach bug. I really haven't had a stomach bug since my surgeries and really don't know how my body would react to one. Frank got me some Vitamin Waters so that I could get some electrolytes in me since I was loosing fluids and not eating. I somehow was able to keep down fluids without feeling sick which was also confusing if it was a stomach bug. Usually stomach bugs make it so you can't keep anything down.
Thursday was the same thing. I thought I was hungry at lunch time and got a sub from Subway and could barely take 3 bites from it without feeling sick. We had tickets for a movie premiere that night and I decided to go. It was close to home and the despite how I was feeling I didn't lose any energy from any of this and the symptoms would come and go. I have experienced such worse stomach cramping in the hospital that I was actually able to function. Later that night the cramps became more persistent and I noticed that every time it would happen my stomach would gurgle really loudly and then I could feel my intestines actually moving. It was a bit alarming and kept me up all evening.
I stayed home from work on Friday as I was not sure if I was going to need to go to the ER. Normally for me a blockage consists of me suddenly unable to go to the bathroom, nausea/dry heaving, the intense cramping, gurgling and my stomach extremely bloated. The fact I was still going (even if it was just water) and had pretty average bloating I wasn't sure what to do. I decided to contact my specialist at Mayo before considering the ER. He immediately got back to me (god bless him). He told me just from what I described to him that he believed I could be experiencing a subacute obstruction due to adhesion. I looked it up and the symptoms were spot on. He made me feel better by telling me I could skip the ER for now unless I get the full blown blockage symptoms I am use to having or begin to run a fever. He also told me when I have a flare up like this that I should do a liquid diet for 4-5 days until it passes. He told me the bone broth, water, vitamin water and even the saltines were ok but the sandwiches especially the veggies on them were a big no no right now and I was to avoid anything that the body can't digest. Her further explained that I should not be eating raw veggies and salads regularly like I have been. As a matter of fact Sunday before all this happened I ate a really big salad for dinner. He explained to me how raw veggies, lettuce etc don't break down in our systems and causes them to overwork. For people like me it can put me at a higher risk for a blockage. He said I was smart for regularly avoiding the foods they told me to avoid right after surgery (celery, popcorn, seeds, corn, pineapple etc). He was happy I added steak and hard to digest meats to my list. He said right now they would be completely off limits if I had not already been avoiding them. However apparently I should have been told to avoid lettuce and raw veggies as well. No one ever told me that I should only eat my veggies COOKED! Hence the reason for this post.
When you have a total colectomy surgery they literally give you a hand out with foods to avoid for a few weeks and then you can gradually start eating things before you can start eating "anything you want". That is total BS! Not only have I gotten sick from foods on that list but I have had blockage scares from eating "anything I want" and I am not alone. If you have this surgery and you are not sure if you should eat something ask. If you eat something and learn the hard way avoid it. Do not think you can "eat anything you want!" your plumbing is not the same as everyone else. You are missing 5 ft (10 ft for me) of large intestine. You also have had your intestines cut which makes you at a high risk for blockages! Everyone can get blockages but anyone who has had their intestines worked on are at a way higher risk and need to be cautious of this. It is not so cut and dry like they make you feel on that handy not so dandy sheet of paper.
Well lucky for me Frank stocked our fridge with every flavor of Boost available at CVS so I can try to have a variety of stuff to "eat" this Labor Day weekend while I continue to heal. He even treated me to a Strawberry Banana smoothie last night for dinner. At least I might lose a lb or 2 while everyone else is over indulging ha ha. Happy Holiday everyone! Trust your guts!
I was recently really inspired by a little girl named Safyre Terry. Her story gave me a whole new perspective on the struggles of physical health. I made her a "Super Survivor" hair barrette and mailed it off to New York a week ago. I included a letter telling her how incredibly inspired I was by her. How I went through a depressed time struggling from my situation, how I too had lost a parent and that her bravery had a powerful impact on me. That little girl has gone through so much at such a young age but continues to fight! If you get a chance I encourage you to look up her story and make sure to watch her talent show video (it brought tears to my eyes just how strong she really is). She is AMAZING!
With that said, this won't be a sad post about how scared I was or all I went through because all of you have read my updates along my journey. Instead I am happy, proud and thrilled to say that I was able to stay out of the hospital during all of 2015!!! To some that is everyday life but for me that is an accomplishment. I will admit and I did not post each time this happened that I did have quite a few scares through out the year. Things I felt could've possibly been blockages that cleared themselves. However with the help of Frank, my meds, time off work (my new job is so understanding) and my heating pad I was able to re-coop at home. I do from time to time have stomach aches from food. Something I ate before can out of nowhere just not agree with the new plumbing and such but I know that this is my life now. Living without specific organs means adjustments and I know that will never go away but it is a gift compared to what I was going through before my surgeries.
I will also admit that I have over indulged in food at times because "I can eat this now and I don't care!" Over the holidays I actually got really ill from it. It all caught up to me and I realized .... "it was fun while it lasted, but this is not worth it". What makes you all sick from holiday indulging is double for me.
So with that I am back on track again and I feel so much better. I actually just started to introduce Amazing Grass' Amazing Meal mixed with Almond Milk (and occasionally fruit) as my morning routine in replace of my multi-vitamin and probiotic. It has everything I need and more in liquid form which means I actually digest it (unlike hoping I do in chewable and pill forms). I feel so good after I drink it and it doesn't upset my stomach AT ALL! I am back to more veggies/fruit in my diet which always makes me feel better. I am also moving more. I have gotten lazy since surgeries. Just wanting to lay around the house as much as possible. I guess you can say I comfortable with the recovery stage. Well with some money I received from Christmas I purchased a therapeutic stationary bike. I have had PFS aka "theater sign" knee since high school. It is worse the more you keep your leg bent and there are times I can barely get up from the couch or my desk at work due to the pain. I have also been experiencing what I think might be early signs of restless legs in my ankles and lower legs (runs in the family) at times when I lay around and am really relaxed the sensations drive me nuts. On top of it, we all know the more you move the more your intestines stay awake as well. I have been using the bike (low tension, fast reps) everyday as well as the stretches I was taught in physical therapy years ago and have already felt a huge difference. If I lose a little weight from my "indulging days" that will be an added plus too. Either way I am doing whatever I need to try to stay on track and I already feel so much better because of it.
On a side note we are looking into Frank's back and hip issues again. That is our main focus these days. His hip seems to be getting a lot worse! Please keep him in your thoughts! He is my rock and now it's my turn to be his.
Please know for all of you suffering with colonic inertia, digestive disorders etc. that follow my updates that even though I am doing better I do experience hiccups and am always here to help answer any questions you may have! Don't ever feel afraid to reach out to me! You are never alone and there is hope!
Hi. I lost my entire colon during 9/11. talk about wake up call. It's a horrible thing to go through. Your body is never quite the same. But.. like you .. when you get tested.. is when you find out just how strong you really are. My small colon is now infected, and in hyperspeed. I am doing everything I can to heal. A few things I'd like to pass along..hoping you may avoid my past mistakes... 1. Just because you stopped bleeding does not mean you are not sick. I wish I had someone tell me this. I might of caught mine before it spread out of control. :( 2. Diet is just as important as stress lvl's. I am a complete vegan.. no gluten.. dairy.. I hate it.. but my body is here 28 yrs with Crohns. 3. Never let anyone tell you your life expectancy. Smile and laugh.. knowing You are the one who controls this disease. Not the other way around. As you can see from my picture.. I covered my surgical scars with ink. Every bit of my ink was earned.. hard fought in battle. Sorry you too are facing this. Know you are not alone. Love from someone who's been there.. and is still currently fighting. Be proactive.. not reactive. Wish I had....
How r u doing Nicole? Are you okay still? I had this surgery.
You are incredible Nicole, so glad you made it through all of this and are still an example to others who suffer. You give others hope and encourage them that there is a silver lining out there and to find it! Happy Anniversary sort of, glad you are with us to continue to share your incredible gifts, friendship, love and art!
Hi Nicole, I'm so sorry you had to change your diet again- I used t have a similar diet as well and I know that going back would be difficult. Keep your chin up. Hugs!
you look great and Healthy Nicole..so happy you are over the hump getting sick all the time..sorry you had so much pain but happy you are doing so much better! love you:)
Glad your not throwing up at the moment. I was going to say spew but that I didn't think was appropriate. Hope you guys have a safe trip home and wow 10ft that's like twice my height almost. Good luck on framing it. It's too big. Here's a weird thought. What if you put it in glass in a table. Weird but kinda cool at the same time. I bet no one has one of those tables.
I had been thinking of you all week. SO glad to hear that things are at least going well. The worste is over, but remember to be your best advocate. If something isnt working, let them know. Praying for you all the way out here in AZ!!! xoxoxoxo