J-Pouch Takedown Anniversary
Next month is my 5 year takedown anniversary for my j-pouch. I have stated many times that the j-pouch has a 94-96% success rate. But you don’t hear many success stories on the internet because most of them are out there living their lives and not boasting about it on the internet. Because you don’t hear a majority of the success stories out there, I feel compelled to keep sharing my own story of life with a j-pouch.
Success & Failure Stories
I have given a lot of thought to how I would address this year’s takedown anniversary. I thought it might be helpful for you to hear stories of other successful j-pouchers that you might be encouraged should you ever find yourself facing the prospect of surgery. Then I thought I’d be doing you a disservice if I only mentioned the successful stories. That’s when I thought it might be good to shed light on not only the good stories, but the not-so-good stories. You also need to hear about the j-pouch failure stories.
Introducing Marisa
Marisa was diagnosed with ulcerative colitis at an early age and has had 14+ operations since. Like many patients, Marisa has seen her fair share of hospital visits due to various complications. In the beginning, Marisa bottled everything up and didn’t talk about her life with IBD. Some friends of hers encouraged her to share her story and now she sees the importance of sharing with others what we all face on a daily basis and having support from people who’ve been there. She wants to help those who are suffering, and let people know that they are not alone. Read more about Marisa at JournalingIBD.com.
Q&A with Marisa
Q: When were you Diagnosed with IBD?
A: I was 13 years old.
Q: What medications did you try?
A: Asacol, prednisone, steroid enemas, 6mp, and Remicade.
Q: How did you get to the point of surgery (for your j-pouch)?
A: Remicade worked amazingly well for me but unfortunately, I started needing it more frequently as time went on. This was in 2002 so it was still very new to the IBD patient world at this time. In fact, I only was able to receive it and have this medication covered by insurance because my diagnosis at that time was indeterminate colitis (as opposed to ulcerative colitis.)
Once I began needing it more frequently than every four weeks, my Gi recommended surgery.
Q: How many surgeries did you have (for your j-pouch, specifically)?
A: I had this particular surgery in a one-step. My GI recommended the head of pediatric surgery to do this surgery, instead of a colorectal surgeon. While the general surgeon was very kind, he had only done about 30 in his entire career and it was hardly his specialty.
The possible benefits and downsides about doing it in a one step procedure vs two or three was never explained to my parents and I. While my medical team made no absolute promise, my parents did put enormous pressure on him to only do one surgery. I was 15 AND it seemed like it would allow me to avoid a temporary ileostomy. I later learned the reason why J-pouch surgeries are [
normally] done in two or three steps.
Q: Did you feel like your j-pouch gave you any relief in the beginning?
A: I had complications right from the beginning so it is hard to say. The day following my surgery, I developed a massive wound infection that required them to re-open my incision at my bedside to allow some of the infection to come out. I then had a huge hole in my stomach, which required a weekly visiting nurse and a lot of care. I also never felt well, which my doctors always attributed to the stress of the wound infection. After months of trying to get my doctors’ attention, it was finally discovered that my Jpouch was “riddled with fistulas” (I vividly remember their wording on that) and I had a tremendous amount of abscesses and infection throughout my body.
SO, long story slightly shorter, while I noticed I wasn’t losing blood anymore which was a huge deal for me (obviously) and I did know my diseased colon had to come out, I would say I felt more emotional relief once I had it done. Not really physical.
Q: How long did you have your j-pouch before it failed?
A: About five months following my initial Jpouch surgery, I had another operation to give me a temporary ileostomy. The hope was that diverting stool away from the infected Jpouch, plus antibiotics and multiple drains, it would allow the infection to clear and my Jpouch would heal.
Q: What caused your J-pouch to “fail”?
A: Fistulas that caused abscessed and widespread infection.
Q: In my research, I have found that patients who DO have a rough time with a j-pouch report an improvement in their quality of life since being diagnosed with IBD. Would you say that this is true of your experience?
A: Yes in terms of the total colectomy; not specifically the J-pouch.
Q: How was the j-pouch failure resolved?
A: The Jpouch was removed, along with my rectum and anus.
Q: If you had to do it all over again (the j-pouch surgery), would you?
A: Yes.
Q: Do you regret getting a j-pouch?
A: Not at all.
Q: Were you told that surgery would “cure” you?
A: Yes. I was told they would remove my diseased colon, make a new colon out of my small intestine and I would go back to life exactly how I was before UC.
Q: What would you say to patients who are considering the j-pouch as an option to treat their IBD?
A: Please, please (if possible) seek the opinions of experienced colorectal surgeons. You want, need and deserve the best care.
Q: Is there anything else you think that patients should know about you, your j-pouch or j-pouch failure?
I think I said a lot 🙂 Happy to talk to anyone about it, though! (Find Marisa on her website:
JournalingIBD.com.)
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Thank you so much, Marisa! It’s always a pleasure talking to you.
Check out other great j-pouch stories at the links below!
