J-Pouch Failure – Tina’s 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.

Q: Did you feel like your j-pouch gave you any relief in the beginning?
A: I remember waking up the morning after takedown surgery and having the urge to defecate after months of using an ostomy to do so and I remember thinking what a miracle it was. I was just in such an awe of what modern surgery could for patients’ lives and quality of life. And yes, it was a relief in the very beginning. I felt like a normal human being for the first time in over a year even though I have a gaping wound in my belly staring at me lol. But here was the issue: I had pouchitis from the get-go even before takedown surgery so when I was antibiotics, I felt great and when I wasn’t, the pouch ended up being just as bad if not worse than my colon in terms of number of bowel movements, urgency, gas, abdominal cramping and pain, etc.

Q: How long did you have your j-pouch before it failed?
A: Sadly, I was on antibiotics on and off since before takedown. I’d say within 4-5 months of the takedown, I was put on Cipro-Flagyl chronically to treat chronic pouchitis. And we had to keep rotating the antibiotics to give me relief. It went on like that from mid-2009 to I’d say mid-2011 when I was diagnosed with Crohn’s and was put on Humira, which didn’t work. In mid-2011, I developed extraintestinal manifestations of erythema nodosum and significant inflammatory spondyloarthritis which were precursors to fistulizing disease in late-2011. So, I think it is a relative question of when my j-pouch failed. One could argue before takedown, others could say once I began to use antibiotics chronically, but I would likely say once I developed my first fistula 3 years into my j-pouch journey.

Q: What caused your J-pouch to “fail”?
A: Constant inflammation, significant ulcerations and fistulizing disease. Within a month of my first fistula, my j-pouch was diverted and I was given a temp ileostomy again to allow for healing.

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, I definitely had improvement with my j-pouch but especially with the use of antibiotics for some time. I kept the j-pouch for 6 years and while it was manageable the first couple years and upon diversion, it became unbearable after some time.

Q: How was the j-pouch failure resolved?
A: We tried diversion in early 2012  to see if the pouch would heal and during that time I used several enemas to keep inflammation at bay to help heal the pouch. That was a grueling experience especially since it didn’t end up working. We tried more biologics as I developed more 3 fistulae during diversion. None of the biologics worked sadly and during this time, I developed pyoderma gangrenosum, Sweet’s syndrome, hidradenitis suppurativa and the worst arthritis I’ve ever had in my life.

I was rushed into surgery in Dec 2014 to have the j-pouch excised, which went well, except I was back during Christmas time with 4 abscesses. I spent a couple months on and off in the hospital with recurrent abscesses and a chronic rectal wound that required debriding in the OR. When that didn’t work, I went to the Cleveland Clinic where I was told I had pieces of j-pouch and rectum left behind so this wound could technically never close as is. Upon closer examination on MRE, the doctor found a massive 9cm pelvic abscess that had a fistula emanating from it heading for my tailbone. I was told it could paralyze me and that I needed to be put on 3 different IV antibiotics as I had sepsis. I was told to have surgery immediately to correct it. The Mayo Clinic corrected it over 3 re-excisions and a wound vac that was left in for about a month. It was all a very horrifying experience as many surgeons I met didn’t want to touch me due to the complexity of the situation.

Q: If you had to do it all over again (the j-pouch surgery), would you?
A: At the time, I was 24 and my family and culture were telling me no one would marry me with an ostomy even though I was perfectly happy with it because it really did save my life. I think if I had proper education and had known I could actually keep the ostomy and that the j-pouch was elective surgery in UC, I may not have gone through with it. I was always really on the fence about it since I felt so much better with my ostomy. Why break something that’s not broken, you know?

Q: Do you regret getting a j-pouch?
A: I don’t regret it per se. I just wish it was made clear to me that a j-pouch is not a cure as often said. I also wish it was made clear to me how involved and complex j-pouch excision surgery is and how high the risk of surgical error and a chronic rectal wound is. I was always told, “oh, if it doesn’t work out, you can always have the j-pouch removed.” It’s not quite that simple. This is a long, hard decision one has to make and I think knowing these factors may have led to a different decision on my part. I could have potentially saved myself years of anguish and medical/surgical interventions. But I wouldn’t call that regret; I would just say I wish I was told more to make more educated decisions. Nowadays I think patients have much better resources (like Colitis Ninja, for instance). There was nothing on the internet about this years ago so we relied on our physicians to give us the scoop.

Q: Were you told that surgery would “cure” you?
A: Yes, and that is such a loaded statement because even many patients I’ve met with well-functioning j-pouches have a lot to adjust to (e.g., 6-8 bowel movements a day, irritable pouch syndrome, etc.). I think we can call the j-pouch a treatment option for UC patients but certainly not a cure. It is very misleading and gives false hope to patients.

Q: What would you say to patients who are considering the j-pouch as an option to treat their IBD?
A: Something I always tell patients is to make sure Crohn’s is absolutely ruled out. I mean, there is no absolute guarantee of it not rearing its ugly head but my docs did everything to ensure it wasn’t Crohn’s and it still was. I also do share my experience not to scare them but to keep them informed that while my case is very extreme, this can happen and don’t be fooled by the word “cure” when it comes to j-pouch surgery. I also do share positive experiences that patients have had so that they can make their own informed decision and go into it knowing all the possibilities. In my mind, education is key for us patients; this has to be a shared decision between the doctor and the patient.

Q: Is there anything else you think that patients should know about you, your j-pouch or j-pouch failure?
A: I don’t think 99% of cases are as extreme as what I faced with my j-pouch. Many patients have very positive experiences and very minor episodes of pouchitis if at all. Most patients go back to living their lives and developing careers, getting married and even having children, so don’t let my experience scare you. Just know in the back of your mind, UC can sometimes actually be Crohn’s so go into your surgeries being as informed as possible.

At the first sign of issues with the pouch though, don’t hesitate to visit your IBD specialist. They often called j-pouchers the forgotten patient; don’t allow yourself to be forgotten. Make sure your issues are handled and don’t let any issues linger. The more proactive you are, the quicker you can get back to your life.

Something I often like to end with on my blog is a positive message: “So, own your Crohn’s, own your j-pouch, and work with your team of specialists to become educated and well-versed in j-pouch symptoms and terminology to make shared decisions in your care with your physicians and families.”

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Wow, Tina, what a beautiful story you have. I love your positive attitude. THANK YOU again for being willing to share your story. 

Read more j-pouch stories by clicking on the links below!