Ulcerative Colitis Surgeries, Care & Expenses

In late Jan 2020 I definitely had Covid-19, even though there was no testing for it available in the U.S. at the time, and ever since my Ulcerative Colitis (UC) has been flared-up like never before. I have also been experiencing several other lingering non-Gastrointestinal (GI) symptoms that are unlike anything I've experienced before. At this point, I  been dealing with severe Ulcerative Colitis all-over my colon for half my life now, the severity of my condition began around the time I was 18 years old, I am 36 now. I never responded well to any of the regiment medications I tried for UC, and have extreme adverse reactions to what is usually prescribed. I typically did much better at managing my chronic condition in natural alternative care ways, through strict diet, supplements, and lifestyle. I found the most relief when taking Prednisone to control my worst flare-ups, which I’ve done on 3 occasions, including currently. Except this time, Prednisone is not able to control my flare, it is only being used now in helping to allow me a little time away from the hospital before my first surgery. No medications are effective or efficient for me at this point. My Ulcerative Colitis is now far too advanced and is in the end-stage of the disease, I am at a very high-risk of colon cancer and need my entire colon (lower intestine) and rectum removed as soon as possible. I will be getting a “J-pouch” surgery (redesigned colon/rectum using the upper intestine), so I won’t need to wear an ostomy (waste bag) forever if all goes well, which takes 2-3 surgeries to complete, most likely 3 in my case because of the severity. Each surgery includes hospital stays of typically 3-7 days, and are preformed 8-12 weeks apart. As with any surgery there is risks of complications involved, usually the potential complications arise within about the first 2 years after the J-pouch is complete; therefore, I will need to be monitored closely for awhile, and may require more hospital stays, more surgeries, or simply just antibiotics. It can take several months just for my body to learn how to use the J-pouch properly once it’s complete, and the J-pouch can fail or develop Crohn’s disease in the very worst case scenarios. My 1st of 2-3 surgeries will happen in about the next 2 weeks or by the end of this month, Jan 2021. I have a consult appointment with the Head GI Surgeon this week, on Thurs, Jan 14th so I should find out when it’s scheduled for then. This week is also supposed be my last week on Prednisone, but that could depend on exactly what day my surgery is scheduled for, I have to stop taking it 3 days before surgery so it doesn't contribute to complications.

Knowing that I'd be admitted to the hospital, I went to the ER on Dec 22, 2020. When decided I had to go my vitals read that I was experiencing Tachycardia (too fast heart rate) and Hypothermia (too low body temperature), but it took me a few more days to make the 10 min drive there. I could barely move or stand-up, was stuck on the toilet and needed to get my bowels under-control enough in order to handle being available in waiting room and being able to do whatever I needed to get done there. Besides, I also wanted to pack a travel bag because of a previous horrid hospital stay experience I had in the past, when I was initially very ill before my UC was diagnosed, which also contributed to making me hesitant to want to go to the hospital sooner, aside from feeling deterred by the Covid-19 Pandemic over-running hospitals as well. At this point, my overall health had been declining all of 2020, ever since the last week of Jan, somehow I managed it better May-July, but was on a worse downward spiral towards the end of July, which became progressively worse by Sept, then it was completely unbearable by Nov, and far worse by Dec. Aside from my GI issues, constant bloody watery diarrhea 20+ times a day, abdominal pain accompanied with back pain, nausea, heartburn, vomiting, dizziness, weakness, extreme fatigue, zero endurance, very easily exhausted, trouble having enough strength to stand for short periods and walk short distances, I had been also been experiencing  shortness of breath, rapid breathing, rapid heart rate, headaches, muscle and joint aches, fevers, chills, feeling too cold to move for hours while trying to heat myself, aside from having to rush to the toilet every 30 min to 1 hr, sometimes every 10-15 min, to release more bloody diarrhea, then the swelling in my feet and ankles I had been dealing with all year started moving up legs, all the way up through my vagina and into my lower abdomen. By Dec, I became like skin and bones on my upper body and extremely huge in my lower body from the intensely excessive swelling and inflammation, my legs were super thick and heavy and I became much weaker as well, causing me to have a very difficult time standing at all or doing anything, even the most simplest tasks were almost to utterly impossible at times.  In addition, I wasn’t able to sleep or rest properly whatsoever because of how frequent my diarrhea was. 

When I first got seen at the ER, on Dec 22, 2020, they did my vitals, drew my blood and had me provide a urine sample for lab work. I had to go back into the waiting room and wait to be called to back for each thing because of their strict Covid-19 prevention protocols, my thing was an EKG to monitor my heart rate. My EKG reading was abnormal, so they called me right back to do it again, and again got an abnormal result. Next was a CTscan, then I went back in for a chest x-ray, and more blood-work next and was met by a team of Surgeons to consult me on my abnormal CTscan findings.  They said that the CTscan showed that my Ulcerative Colitis was flared-up particularly on the left side of my colon, but also that my appendix was inflamed and enlarged but that they all didn’t think I actually had Appendicitis, that from a clinical standpoint there was no reason to remove my appendix because it was enlarged and inflamed due to my UC flare-up. Next time I was called, they started wheeling me to the back each time, it was very relieved to have them push me around in a wheel chair, and they did an ultrasound on my legs, looking for blood-clots, no blood-clots were found. Then, I went back again for another blood draw and I was getting really chilly at this point and my veins are very small so it was becoming very difficult to draw my blood, the lab technician only got about half the blood they wanted, and I tried using instant hot-packs to warm up my hands and see if they could draw some from a vein in my hand and it was unsuccessful, so I had to wait but before I went back to the waiting room again, I was met with who would be my treating Doctor during my in-patient  hospital stay. He told me that they were getting a room for me ready, that they were trying to get it ready in about an hour, and told me he didn’t at all think I had Covid but they were going to test me as a precautionary. I explained that I was sure I had Covid in the beginning of 2020 and after that is when my GI issues were flared and overall health kept declining, he said since I already had it then it was highly unlikely I’d have it now, aside that he strongly didn’t think so anyways. A Cardiology tech found me when I was still in the back and adhered a heart monitoring device on me that I was to keep on during the duration of my stay. Spent maybe a couple hours in the waiting room until was wheeled up to my room, thank goodness because I was still freezing and couldn’t wait to get under the covers in bed. In my room, I was given a whole Tupperware box full of goodies, all kinds of toiletries, bath wipes, socks, and even some instant hot-packs which I loved and was not all all expecting! Had the room all to myself, and it had everything and a even a shower in the bath room, very, very different from my past hospitalization experience, I almost couldn’t believe it. I was super impressed by this hospital and very comfortable! Then the RN nurse came in they gave me some potassium pills because my lab work shows my potassium was very low, then tested me for Covid and placed a catheter in my inner left elbow, a CNA nurse took my vitals taken again, then had more blood drawn by a lab tech from my other arm. The treating Doctor stopped by to tell me they were checking for infection in my blood. Only had a couple snacks in the ER waiting room and it was after hours, the kitchen was closed but the nurses were able to provide me with the most delicious ice water ever, bouillon chicken broth, and Snack Pack jello, that is all the nurses had access to with the kitchen being closed. They continued to take my vita at least every 2 hrs and draw my blood every 4 hours around the clock for the duration of my hospital stay. Early that next morning they started me on 4 hour infusions of IV antibiotics every 2 hrs, which also lasted around the clock during the duration of my hospital stay. I was only allowed liquid diet foods, which wasn’t much options of, especially with my intolerances to dairy and soy, so it remained mostly broth and jello for me but I couldn’t be happier to finally be getting the most efficient treatment I’ve ever had! Could not stop telling all the staff how wonderful they all were and how amazing that hospital is, mentioning my unfortunate past hospital experiences, and how they already did more for me in the first 1 1/2 days there, at the Henderson Hospital, NV,  than it took me going to the ER constantly over the course of 1 1/2 years at the Oakland County Hospital, CA, where I eventually became first diagnosed with Ulcerative Colitis. I was super thankful to finally be getting proper help! 

In addition to IV antibiotic infusions, I also got fluids, 2 blood transfusions, and steroids injected into my catheter. Was pretty much always having something pumped into my catheter, and my vein got messed up from my first catheter causing the fluids to go under my skin instead of in my vein. It was impossible for many nurses to replace my catheter,  my veins are tiny and were messed up from all the constant blood drawls, but eventually a new catheter was placed successfully using an ultrasound in a deep vein on the inside of my upper right arm; although, that vein was against something, like a valve or nerve so it was a lot of trouble to keep the infusions flowing, had to hold really still in certain positions and kept taping my muscle to the side to help hold the line open. They also preformed an ultrasound on my heart, and another ultrasound on my arms. No blood clots were found anywhere in my body, so that meant the intense swelling in my lower body was caused by all the inflammation from my Ulcerative Colitis. All the Doctors agreed that everything I’d been experiencing was all caused by how bad my UC got. I had a colonoscopy on Dec, 24th, Christmas Eve, which I’d really been needing, hadn’t done a colonoscopy since I was first diagnosed with UC. After the procedure they told me my Ulcerative Colitis was all over my colon, and I told them that was result of my first colonoscopy, was told it was severe and all over at diagnosis, so no surprise there.  The next morning, Christmas Dec 25th, the Head GI Surgeon gave me a brief visit to tell me, “it’s time”. He told me that I’ve been dealing with this for way too long, that my UC is advanced and in the end-stage, that medications are useless at this point, that I’m at a very high-risk of cancer, and I need to have surgery as soon as possible. He also said they weren’t sure yet if I could go home for a few weeks to a month first, or if they’d need to do surgery in a few more days.  I told him that I was actually thrilled to hear this news, I was more than ready to rid myself of this disease, it felt like a Christmas miracle! At the time I was hoping to go home first. The next day was the first day that they allowed me to eat more substantial  food items, they called it a GI Soft / Low Fiber diet. I was able to order things like plain pasta, white or sourdough toast, mashed potatoes, grilled chicken and salmon, steamed veggies, white rice, where as before the closest thing to food (non-liquids) I was allowed was Cream or Wheat or Cream of Rice, hardboiled or scrambled eggs, and peach or pear fruit cups. The GI Surgeon stopped by my room again that morning, and I told him how trilled I was to eat real food and that maybe I could produce a more sustainable bowel movement finally, he said, “good luck with that!” As if I shouldn’t count on it, being at the stage of UC I’m in. And yeah, he was right. The following morning, Dec 27th, I started to have a change of heart, wanting surgery in a few days verses being able to home first because I realized that I wasn’t able to managing my UC as well as I was hoping, even with going home on Prednisone. The GI Surgeons already had explained that I couldn’t stay on Prednisone long enough to possibly control my flare-up, that being on Prednisone especially for more than a few weeks could lead to complications with my surgery, so if I were able to go home first I’d only be taking Prednisone for 3 weeks and then I’d have to be off of it for at least a few days before surgery. I had a visit from the GI Surgeons early that morning, before they explained why they came to see me I told them of my change of heart, if they wanted to keep me and do the surgery in a few days I’d be happy about that as I realized how poor the quality of my life will remain in the meantime. They said that they were actually coming up to tell me that they think I can actually go home today, my Hemoglobin (red blood cells) were holding up, that they didn’t think I needed IV antibiotics anymore, and the steroids injections I’d been getting should be working, but that all the Doctors and Surgeons will talk before agreeing to release me. The treating Doctor visited me next, and pointed out that even though I still had diarrhea from eating more sustainable foods that the number of times I went to the bathroom per day had greatly decreased from before I was hospitalized, which was true so I was starting to come to terms with trying to manage at home until surgery. Then they all came up together, the treating Doctor, the team of GI Surgeons, and the Head GI Surgeon and confirmed that I could go home. The Head GI Surgeon told me that I need to walk 2-3 miles EVERYDAY, and when I asked him about diet, like if I should be on the same sort of diet they had me on, he said to eat whatever I think I can handle but that he’d really like me to have some dairy but knew that could be an issue because of my dairy intolerance. I told him that I could handle specific forms of it better, like raw cheese since there is natural enzymes in it so I’d at least incorporate that. Being able to go home felt very bittersweet. I was happy about trying to get my life and finances in order a bit before starting my surgeries, but I felt so taken care of at the hospital and was scared of how I’d manage on my own in the meantime, and if I could even get anything done at home that I was hoping to. I wanted to cry while being discharged but I held myself together and stayed thankful. I was very thankful for all their help, thankful to try to get my life in order a bit first, and thankful that I was doing well enough to have the opportunity to go home before surgery.

While reading my go-home paperwork, at home I discovered that I had been diagnosed with the following: 

Abdominal pain
Abnormal CT scan
Anemia
Colitis
Diarrhea
Elevated brain natriuretic peptide (BNP) level
Hypokalemia

I started 40mg of Prednisone daily the following day, first full-day at home. The swelling and inflammation in my lower body was already greatly increasing being on my feet and moving around much more than I was in my hospital room, which progressed and continued to be unbearable throughout my first week at home. My legs legs were very painful and felt like they were going to pop-open, they were so super thick and heavy it was hard to lift them at all and walk but I bought a cane and kept trying to move around as much as I could since I was supposed be exercising. I couldn’t actually start going out for long walks like I was supposed to because my feet were so swollen that I couldn’t put on any shoes other than my fuzzy house slippers. I tried ordering several pairs of wide-sized shoes and some in larger sizes than I’d usually wear, no luck, expect for one pair of sandals that worked okay after resting until the inflammation peaked more. The 2nd week at home I reduced to 30mg of Prednisone daily,  that first day my lower body inflammation finally started decreasing. I had an initial office visit with the GI Doctor the hospital had assigned me to the following day, that Tues, as I was instructed to follow-up with him in my discharge paper-work. It was awful! They didn’t tell me when I scheduled that the initial visit was $250 and had to be paid up-front. I cried because they wouldn’t bill me as I didn’t know as wan’t really prepared for this, but went ahead and paid-up to follow-through with the appointment as I felt like I had no choice. Then, my actual visit with the GI Doctor was even worse! He already hadn’t read my medical history, treatment notes or labs before my colonoscopy, in which was the only time I saw him at the hospital, while falling under anesthesia he introduced himself and told me he was going to send me home on Mesalamine, was like wait, what’s that?! Then fell asleep immediately, when I woke up after the colonoscopy and the nurse that was monitoring me told me that my Ulcerative Colitis was all over my colon, I asked her if Mesalamine was another name for Asacol and she said yes, and we both kinda freaked out as its clearly written in my notes that I have severe adverse reactions to that medication. I had several nurses trying to hound him down and tell him, but I suppose he didn’t get the memo or forgot because first thing he said to me during the office visit was asking about how the Mesalamine was going. I explained that no medications are effective or efficient for me at this point, as I’m at the end-stage of Ulcerative Colitis and that I am at a very high-risk of cancer, yet he still kept trying to offer me other drugs. Then he started lecturing me about how I needed to see another doctor about the swelling me noticed in my feet and ankles, I told him that was related to my UC being so bad, he continued arguing that UC doesn’t cause that, and I was like, um yeah it does in my case, the hospital checked me out very thoroughly and that was their findings. Then, he finally took a quick glance at my lab results for the first time ever, and was like oh, it’s all nutritional, you have absolutely no protein in your body and that’s why. I responded, yeah, if you read the rest of my lab results you’ll see I have none of the other nutrients in my as well and it looks like I already have cancer, which is why I need surgery as soon as possible. Then, while he was walking me back to the front desk he said, “let me know if you need any drugs.” Like, as if he still didn’t understand that medications aren’t really effective for me at this point, or at all efficient in the long-run. I don’t want to develop cancer trying to hold onto to my colon for any longer. I need surgeries, not drugs. I went ahead and scheduled a follow-up for 2 months out as instructed, but I seriously hope this GI Dr starts to pay more attention to my case and needs. If not, I am fully capable of directing him, directing my healthcare as I have been, but at some point I may want to switch GI Doctors if the carelessness and  communication issues continue. The following day I began having watery diarrhea, which has been the constant consistency of my bowel movements ever since. I’m currently into my 3rd week at home in which I reduced to only 10mg of Prednisone daily, it’s becoming  easier to sleep as higher doses of Prednisone make me really speedy and was only sleeping up to 2-4 hours per night prior, but I’m also only on my 2nd day into it (Dec 12th, 2021) and my diarrhea is becoming more active and more bloody. I’m happy to be moving around more easily and have been able to start going on actual walks since the end of last week, but I’m really starting to feel disadvantaged by my bloody diarrhea increasing and the pain and depletion associated with it. I haven’t got as much of my life and finances in order as I was hoping to at this point, and I’m just going to be suffering more and toughing it out until I can get help and get my surgeries. I have an appointment with the Head GI Surgeon for this coming Thursday, Jan 14th so I should know when my 1st surgery is scheduled for at that time.*

*I will keep updating here along my journey. 

I currently have no idea of how much funding I will need all and all, it depends on many factors that will be determined along my way of achieving good health. I definitely need help with my paying for my overall medical costs, as well as my living expenses from now until I am healthy enough to go back to working regularly. I can make payments to my hospital bills, other medical costs outside of that particular hospital are going to be due in-full upfront though, and my living expenses are are all always immediate and due in-full. I will not be able to fully function for quite some time as getting through these surgeries is going to be a huge process, even if all goes extremely well and there is no added costs and down-time due to complications. At first I was thinking about setting my funding goal to half of what it is now, because I just had no idea, but now after learning more about the surgeries and seeing my 1st hospital bill I doubled it, and I’m afraid that I still may not be asking for enough... (*Edit on Feb 2, 2021: I am adjusting my goal from $600K to $200K , even though I still have absolutely no idea of my total costs all and all. I can always re-adjust it again as needed. I am afraid my previous goal could have been intimidating to some.) ...Will see how it goes though, I believe I can update it as needed. Anything will help, seriously, nothing is too small, $1, $5, $10, $20 donations do add up! 

The total charges of my Dec 22 - Dec 27, 2020 hospital stay are $132,931.00 in which I am responsible for $53,172.40 total per the cash-patient (non-insurance) discount they’re giving me. I am expecting other separate medical bills related to that hospitalization, because some things are billed separately, for example if a Doctor sees me there that isn't usually apart of that hospital, and other sorts of charges related to certain procedures that are not included in that hospital’s in-house billing. 

It has taken a lot for me to open-up about my health condition publicly and ask for financial help. I don’t like asking for any type of help in general, I am very independent and used to toughing out harder times. But now is a different and difficult time for me, I never felt so helpless and I really can use all the help I can get!!! 

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Organizer

Sarah Booher 
Organizer
Henderson, NV
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