Originally published by Amber of Colitis Ninja on June 12, 2019: https://colitisninja.com/2019/06/j-pouch-failure-tinas-story/
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 TINA
Over the next few weeks I’ll be sharing several stories of those who have a successful j-pouch as well as stories of those who have lived with j-pouch failure. This time, I want you to meet Tina.
Tina Aswani Omprakash is a Crohn’s patient and health advocate for the chronically ill and disabled. Via her writing, social media advocacy and public speaking engagements, she spearheads public health causes, including those proposing research for and creating awareness for inflammatory bowel disease (Crohn’s and Colitis), life-saving ostomy surgery and initiatives supporting health concerns for women and racial, ethnic & sexual minorities. Tina is based out of New York City and is currently a student of Public Health at Mount Sinai’s Icahn School of Medicine. She maintains a blog and social media advocacy platform called Own Your Crohn’s in which she shares her own experiences in addition to others’ stories to empower patients to live their best lives possible. Tina’s aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives.
Q&A WITH TINA
Q: When were you Diagnosed with IBD?
A: 2006 but was having IBS and GERD-like symptoms with joint pain for years prior. I was diagnosed with UC (ulcerative colitis) initially but once I got the j-pouch, things quickly went south. My diagnosis was changed in 2011 to Crohn’s.
Q: What medications did you try?
A: Everything under the sun from 5-ASA (both orally & rectally), steroids (both orally & rectally), immunosuppression (orally & even Tacrolimus rectally) and 4 different biologics. I even tried alternative therapies, including naturopathy, Ayurveda, homeopathy and Chinese medicine. I found that instead of helping, many of these alternative methods likely made me sicker.
Q: How did you get to the point of surgery (for your j-pouch)?
A: After waiting to get Remicade due to step therapy, I tried an onslaught of alternative methods to treat my UC. I only got sicker and sicker. Once I got the Remicade, it was too late; it only worked for a week and the second dose not at all. I was 85 lbs, living with TPN feeding me through a PICC line and my doctor told me I was dying. I was rushed into emergency colectomy surgery on the 4th of July, 2008, and the surgeon and his chief told me they were unsure I’d survive. I did but barely and the recovery last several months.
Q: How many surgeries did you have (for your j-pouch, specifically)?
A: I’ve had over 20 surgeries total in a period of 7 years. I had 4 surgeries leading up to the j-pouch since I was very weak and couldn’t get it done in 2- or 3- stages. And I think most of the rest related to my j-pouch in some way shape or form whether it was diversion or treatment of fistulae because all 5 of my RV fistulae came from my j-pouch and near the ileoanal anastomosis site. Even my rectal mucosectomy was done to help preserve the function of the j-pouch. And when my j-pouch was finally excised, the 7 surgeries following that were all to close a chronic rectal wound and remove bits and pieces of j-pouch and rectum that were left behind and had caused a massive pelvic abscess. So really everything in my case was somehow related to j-pouch issues.
To read more about how my j-pouch failed and how things were finally corrected, please visit Colitis Ninja’s website: https://colitisninja.com/2019/06/j-pouch-failure-tinas-story/
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As Amber of Colitis Ninja mentions, the majority of j-pouches are a success. In some cases, things don’t turn out well. It’s always important to do your due diligence and remember that j-pouch surgery is the gold standard, yes, but it is still an elective surgery.
~~LOVE, LIGHT & PEACE ALWAYS~~
As always, I love to hear your comments. Feel free to leave feedback and/or ask questions. Knowledge is power 🙂
