a tv with a please stand by signal with a j-pouch on it

What's a j-pouch failure?

J-pouches are complicated! They are created out of loops of the small intestine, being cut and stitched back together to create a storage area to replace the rectum. Basically, the small intestine is doing a job that it was never intended to do.

Why does a j-pouch failure happen?

There are many reasons that a j-pouch might be deemed a failure. It can be a mechanical malfunction, which might mean that it has folded over, twisted, or has narrowings, which means it can’t be emptied properly or causes waste to back up. Sometimes, it’s the structure, so it might not be able to hold enough volume, which results in constantly needing to empty, urgently. In some cases, these things can be fixed, but if they can’t, the pouch will be declared a failure.

Sometimes, it might be a case of misdiagnosis, and Crohn’s disease can often cause issues with a j-pouch. Crohn’s with a j-pouch can cause the same issues as it did before the j-pouch was created, so issues like abdominal pain, bloating, inflammation, ulcers, and fistulas can develop. Again, this may be treatable with the medications used for Crohn’s, but if it can’t be bought into remission, then the j-pouch will be deemed a failure.

What is pouchitis?

Then, there’s pouchitis. Important to note that pouchitis is much more common in people who have a j-pouch due to inflammatory bowel disease than it is in people who have one for other conditions/diseases.

More on this topic

Pouchitis can be caused by many things too. Bacterial overgrowths can often be treated with “standard” pouchitis treatments such as antibiotics and probiotics. If they don’t help, then it becomes antibiotic refractory pouchitis. There are different protocols of how this is treated depending on where you live. I live in England, and treatments still differ between areas of the country! So, other treatments will be tried, which may help get the pouchitis under control. If the treatments available don’t work, this is when the j-pouch will be considered a failure.

Not all pouch failures result in a permanent ileostomy. In some countries, continent stomas, attached to a pouch called a Kock pouch may be an option. There also might be a possibility of creating a second j-pouch. It all depends on multiple factors; the circumstance, the patient, and the surgeons.

My experience with a j-pouch and inflammation

My j-pouch didn’t really work well from the start. In fact, I had inflammation in it before it was even connected to the rest of my intestine! In the end, I had antibiotic refractory Pouchitis, which eventually also became steroid dependent.

I tried azathioprine (Imuran), which did give me a brief period of remission. When my pouchitis flared again, I had to go for a scope to confirm active disease before I could move on to infliximab (Remicade). During that scope, a stricture was identified, and my IBD team wanted to discuss removing my j-pouch.

I said I really didn’t want a pouch excision, and if I wasn’t going to have a choice, I didn’t want the same surgeon doing it that I’d had for my last four surgeries anyway. So, I was referred to a different hospital to see a new surgeon, in the hope that balloon dilation would be done there.

Finding a reason for the pain

I wasn’t surprised by the finding of the stricture, because I had been complaining of pain for over a year. I had stated over and over again that I was certain it wasn’t in my j-pouch, it was higher up, in my small intestine. It had got gradually worse over time, so the painkillers I needed to take to simply get out of bed in the morning and to get some sleep at night had got stronger and stronger. So, as much as I was certain I didn’t want surgery, I was at least relieved that there was finally an identified reason for my pain!

When I finally got to see the new surgeon, more tests were ordered. Those tests showed two strictures, one very long and tight, and one shorter, but also very tight. The surgeon had called me while I was at work to give me this news, and he said that this meant dilation was not an option. They were too close together, and so I needed to be admitted for emergency surgery. Could I do it in 5 days time?!

I had the surgery and ended up with a temporary stoma because my pouch had been revised while they were in there. The long stricture turned out to be a twist, so it was a good thing that they didn’t try to dilate it really! The smaller one had been an abscess, which was removed.

Five months later, I had my j-pouch connected back up. It wasn’t long before the pouchitis returned, and my IBD team wanted me to go through all of the medications that I had tried in the past that hadn’t worked before because the pouch had rested and might respond better this time.

Removing the j-pouch was the right decision for me

None of them worked, so three years after having my j-pouch reconnected, I was finally back to where I was before the last surgery, having the tests required to access infliximab! Infliximab didn’t help either so, I was referred back to the surgeon to discuss removing my j-pouch. I flirted briefly with the idea of a clinical trial, but ultimately decided to just go for the excision. I had been sick and not able to live my life for far too long. I was so unhappy and desperate to be able to go out and do things again.

The surgeon offered to leave the j-pouch in, in case I wanted to try again in the future. I didn’t. I’d had enough of it. I didn’t want to be chained to the toilet. I didn’t want the constant pain and exhaustion. With no guarantee that disconnecting it would even resolve the issue, I was adamant I wanted it gone. I wanted my ileostomy back and my j-pouch taken away all at the same time. I wanted it to be the last surgery.

The excision happened in October 2018, and I am certain that I made the right decision for me!

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