W-Pouch Failure – Richard’s Story

June 18, 2019

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 Richard

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. Please meet my friend Richard Harris from Gutless Dick.

Richard is a former youth worker from Peterborough. He was hit with Inflammatory Bowel Disease in 2005 and has had multiple operations as a result. Richard enjoys playing video games, writing poetry, cooking, climbing and badminton. He resides in Chippenham, Wiltshire and works in the Children’s Services department of Wiltshire Council. He is also a director of a Community Interest Company, Care About You CiC.

Q&A with Richard

Q: When were you Diagnosed with IBD? What medications did you try?
A: I was diagnosed with Ulcerative colitis in May 2005. I was given Mesalazine suppositories and thought that was it and it would clear up. I then had a flare 3 months later, had a weekend of prednisolone foam enemas. I was then admitted to hospital, where I had IV steroids, then cyclosporin to try and bring things under control. After about 3 weeks, my colon was removed in emergency surgery and an end ileostomy was created.

Q: How did you get to the point of surgery (for your j-pouch)?
A: As I was young-ish (24) at the time of my emergency surgery, the stoma nurse mentioned to me about the internal pouch option. I was referred to a colo-rectal surgeon who assessed I was suitable for the surgery and it was booked in. Mine was actually a W-pouch rather than a J…

Q: How many surgeries did you have (for your w-pouch, specifically)?
A: I had the pouch formation surgery in August 2006. I very quickly had issues with pain and bleeding from my rectal stump. I had multiple trips back to the hospital and flexi-sigmoidoscopies to try and see what was wrong – these were very painful but the pouch appeared healthy. An Examination under anaesthetic then identified the issue with the rectal cuff. The proposal was to do a pouch advancement procedure, where most of the rectal cuff is removed, and the pouch is hand stitched to the last remaining bit of cuff just above the anus. My pouch had been stapled, which is done as it reduces time under anaesthetic but leaves more rectum. My surgeon referred me to his teacher, and pioneer of the pouch Professor R J Nicholls for this procedure.
Once this was done in February 2007, I had my take down in June of that year.
Q: Did you feel like your w-pouch gave you any relief in the beginning?
A: After the advancement, things were good for a while. However, the remaining rectum was still inflamed, and although it was only a small area, it was painful. I was able to have a cycle of Infliximab, but only one, and then was given Prednisolone Foam enemas for a prolonged period. I moved to another part of the country and was started on Humira, but started to get leakage.

Q: How long did you have your w-pouch before it failed?
A: I don’t think there was a definitive date when it failed–it was more gradual. However, the operation to defunction it was performed in January 2015, so I had an active pouch for seven and a half years.

Q: What caused your w-pouch to “fail”?
A: An abscess formed in my buttock. This was drained and a seton stitch put in place. This eventually led to a fistula. MRI scan showed that there was a collection behind the pouch, presumed to be from a small leak at some point. Ultimately, this was the cause of the failure. My team in Bristol presented 3 options, but wanted me to get a second opinion from St Mark’s Hospital in London, a world centre of excellence for pouches and IBD – Prof Sue Clarke there said the pouch had failed, and would need to be defunctioned, likely removed–she was right.

Q: In my research, I have found that patients who DO have a rough time with an internal report an improvement in their quality of life since being diagnosed with IBD. Would you say that this is true of your experience?
A: My IBD journey was short lived–one big flare and then colon removed. There was a period of time when I thought the internal pouch was better than the stoma, but I was happy to go back to it in the end.

Q: How was the w-pouch failure resolved?
A: I had surgery at St Mark’s to defunction the pouch, with a hope that resting it might allow everything to settle, and the collection to clear–it recurred, and I was still getting leakage, so it was then excised, and rectum and anus removed a year later. Because of the infection (I think) the healing of the rectum excision (Barbie Butt) was over 2 years to filly heal–and I still sometimes get some discharge/ bleeding from that wound.

Q: If you had to do it all over again (the w-pouch surgery), would you?
A: I think if I knew what life would be like with a poorly functioning one, then I don’t think I would, I would have stuck with the ileostomy and bag.

Q: Do you regret getting a w-pouch?
A: No, I don’t regret trying it–I was, I am told, an unusual case…

Q: Were you told that surgery would “cure” you?
A: No, it was presented as an alternative to a bag, but I ended up with the bag anyway.

Q: What would you say to patients who are considering the j-pouch as an option to treat their IBD?
A: Find a specialist centre with a surgeon who regularly performs the operation–you want someone who has done lots of pouches and has good outcomes. This may be easier in the UK than elsewhere in the world, but check it out.

Q: Is there anything else you think that patients should know about you, your w-pouch or w-pouch failure?
A: I guess I was unlucky, in a series of events that were not related to each other. I should have been more honest with my doctors when things were bad–I think I was hiding it. Don’t be afraid to speak up–be it about side effects from medications, leakage, discharge. Seek specialist advice–if you’re having an internal pouch, you want it to last. You can read more of my story on my blog (Gutless Dick).