IBD Story: Diagnosis, Steroids, Biologics, IPAA Jpouch Surgery

IBD Story: Diagnosis, Steroids, Biologics, IPAA Jpouch Surgery

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I’ve experienced symptoms of Inflammatory Bowel Disease for years. I honestly cannot remember a time that I was not in some kind of pain. – High school was when it became unbearable. Accompanying abdominal pain, I experienced fatigue and constant blood loss / blood in stool. I knew something was wrong, but I couldn’t bring myself to mention it to anyone. I was scared and embarrassed. No other teens (I knew) were experiencing these issues so I chose to ignore them for as long as I could.

When I started high school my “stomach issues” became more and more of a burden. It wasn’t long before I was leaving class and eventually leaving school for the emergency room. – I went on like this for years. Different hospitals, different doctors, one rejection after another. Every doctor had a different reason for why I was experiencing the symptoms I was. My favorite excuse has to be the one about my backpack being too heavy. << In hindsight, it was a little funny.

This became my new normal. – Pain, blood, fatigue, emergency rooms, home. I did what any teen would do: try to live the most “normal” life I could. – At least until I couldn’t anymore.

Inflammatory Bowel Disease, IBD, Ulcerative Colitis, Jpouch Story

During the middle of my senior year I went to the bathroom and saw nothing but blood. I immediately called my grandmother who rushed me to the emergency room. They took us more seriously that time. – I never could decide if it was because I was discharged only a few days prior, or the upset grandmother demanding an answer. *Any-who* From that hospital I was rushed via ambulance to the Levine Children’s Hospital (in Charlotte, NC). After days, IV steroids, two blood transfusions, and a very tired me, we finally got a diagnosis! Inflammatory Bowel Disease, more specifically, Ulcerative Colitis. While not what I wanted and certainly not what I imagined, I was happy to finally have answers to the questions I’d been asking myself for so long. Moving forward seemed simple. Take steroids, get better! That’s what I thought at least. I was on steroids for years as an attempt to suppress my immune system and achieve remission. – Unfortunately, that never happened.

Time passed, medications and treatment plans failed. For a while I went without insurance entirely. My best days were spent in pain, dizzy from internal bleeding. I had no quality of life. I had no life at all. Everything was hard. College was made more difficult, working was made extremely more difficult. Eventually I would become isolated. Alienated from my friends out of fear of being judged. I was embarrassed of the life I was living.

Graduating with Inflammatory Bowel Disease, Ulcerative Colitis

By my early 20’s I was pretty sick and pretty fed up, apparently so was my job. One-day a manager told me I didn’t look well and advised me to see the doctor on staff. The doctor immediately referred me to the emergency room, but not before giving me the name of a friend. She said he was a good gastroenterologist. – One of the best she knew. She recommended I see him, especially considering that I hadn’t seen a GI (outside of the ER) since my pediatric doctor at 19. Later that same night I had my first emergency surgery. I became frustrated with my body and the life I was living. Something needed to change. I decided to give the gastroenterologist (recommended to me) a call. * So glad I did. * It wasn’t an easy road. I feel like we tried just about every medication in the IBD market! 5-ASAs, corticosteroids, biologics, you name it. It was frustrating. Devastating. After failing two biologics it was recommended that I begin considering surgery. My GI told me the basics and in early 2014 he referred me to a surgeon / friend of his. – I was happy with my doctor so I was pretty confident I would be happy with anyone he chose to associate with, but I was still very hesitant to make such a big commitment.

I pushed off my (surgery) consultation for months. I wanted to be informed before I stepped foot in the office. I did my research. I researched my surgeon, the surgery, the reviews, life with an ostomy, you name it. It was around Fall when I had my first consultation. I arrived with a pen and a paper with 60-something questions written on it. I was ready! – The surgeon and I went through the questions one-by-one. He was able to give a lot of good information and he seemed pretty confident that the surgeries would change my life. *Spoiler Alert* : They did!

jpouch surgery for ulcerative colitis

I scheduled my ileal pouch-anal anastomosis (IPAA), or j-pouch surgeries the same day. We originally scheduled my first surgery for early December, but of course when the time came, lucky me was sick again and had to push it off for another two weeks!

I had my J-pouch surgeries in 3 steps:

  • Removal of my colon and creation of my ostomy to remove waste
  • Surgically shape my small intestine into a J, while creating a new ostomy
  • Reversal of my ostomy

I’ll do a more in-depth post on J-pouches in the future.

Contrary to expectations, the first surgery was for sure the easiest. My first ostomy was confusing because it was such a new thing and so much to understand, but once I learned how to order supplies, change, ect. – It was pretty easy. I didn’t have any complaints about my first one *in hindsight at least*. I returned to work two weeks after surgery. Initially, I was worried about my ostomy making noise or people judging me. * Spoiler Alert*: It did make noise and people did judge me. – But I lived. I felt miles better than what I had and I was able to do things I hadn’t done in yearsss (if ever).

Ileostomy, Colostomy

My second surgery was hard. It was extremely hard. Don’t get me wrong, it was worth it. – But no one can truly prepare you for the second surgery. I’ve never felt that kind of pain in my life, but I also had a (somewhat) minor complication afterwards. In addition to my second surgery, my second ostomy / stoma was pretty difficult too. – I didn’t return to work after this surgery. Aside from the pain and complications, blockages, ect. My second ostomy was nothing like my first. My surgeon said it’s because he used a different part of my intestine, which makes sense, but I still hated it. While this was the most difficult point in my surgeries, it was also the shortest. I had this surgery at the end of April, my reversal was scheduled for July 1st. That’s no time!

ileal pouch-anal anastomosis, or j-pouch The third surgery wasn’t so bad. It’s complicated because It’s new, but I wasn’t in much pain and I had no real issues afterwards. You do, however, need to learn how to do / redo certain things. My doctor encouraged me not to use the bathroom as soon as I had an urge in order to stretch my pouch. – I appreciate this tip because I’m usually able to hold a lot for pretty long periods of time now. I’ve also had friends who said their surgeons said the same! It’s also a process to hold stool again…. No … literally. You may have accidents for the first month or so, especially at night. You can use pads or depends to help a bit with that.

IPAA J-pouch Surgery A J-pouch is amazing, but it’s still very different from living with a colon. It’s pretty different from anything you’ve experienced living with IBD. Like anything new, it takes time to adjust to, but eventually it will become the new norm. My advice for anyone at any stage with their condition is to just be patient, be open and don’t believe everything you read online. When I first had my surgeries, I didn’t see any success stories. I was so worried. Honestly the IPAA / Jpouch surgeries have a pretty good success rate. – Ultimately the outcome is going to depend on you and your body.

Jpouch. IPAA

Almost 3 years later and I’m still so happy and grateful to have the opportunity to have life changing and lifesaving surgery. I still have issues. I still have IBD, but I also have my life.

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