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3 replies

fistula resulting from pouchitis

E EPMember
Hi
I wondered if anyone else has been diagnosed with a fistula in their J pouch as a result of pouchitis?

I have had chronic pouchitis for a long time which was treated with antibiotics. The fistula resulted in significant infection which spread from the pouch into a large area of tissue of my butt cheek, tracking down to form a lump at the top of my leg. Although I had pain there was nothing to see for a while until I developed swelling and my skin became very red and hot to touch. Very painful and I felt extremely unwell. There was no focal point like an abscess so nothing to drain.

2 GP's fobbed me off with my symptoms, one saying the lump which was hot to touch was a DVT and sent me for a DVT scan (I had a lump at the top of my leg!) and the other asking if I had cut my leg shaving!! I even asked if it could be a fistula and they said no I would be more unwell and I didn't have a temperature. It was only when I saw my usual GP she did something about it and my surgeon admitted me the same day she saw me. She tried IV antibiotics which didn't work and I ended up having to have a loop ileostomy. I only had a temperature once during the whole thing despite my inflammatory markers being very high and being septic and unwell. I ended up spending 7 weeks in hospital including high care and needed a further 3 months off work. A repeat MRI showed the fistula is starting to heal but I still suffer with some pain and feel very exhausted.

Its definitely not crohns (they double checked and repeated biopsies). Apparently there are now 3 of us at my GI centre who have fistulating pouchitis after having a pouch for U.C. My surgeon contacted St Marks (national gastro hospital) and they said that they are starting to see this in patients 8-10 years out from having a pouch formed due to U.C. There is currently no effective medical treatment available in the UK and the only option was for an ileostomy.

I consented to a loop ileostomy rather than have everything out, as I just hope there may be some treatment in the future which will mean I can have a reversal. At the moment no one is willing to take a chance and reverse me as the risk of further fistula and sepsis is too high and potentially life threatening; I even went to St Marks to beg them but the refused.

I feel devastated by the surgery and traumatised by being once again very sick. Getting back to work and trying to have a life is extremely hard even though its about 8 months or so since my surgery. I hate having a bag again and find life very difficult with it. I would love to hear from anyone else who has this and if there is any chance of a cure?
Thank you.
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n/an/aMember
I find this an interesting post - I have never heard the term "fistulating pouchitis", but it's something I thought about concerning my pouch-vaginal fistula.

I had my pouch for a total of 21 yrs now. It was somewhat problematic from the get-go, but livable, for sure. About 10 years in, I suffered from symptoms that my surgeon dealt with incredibly conservatively - as a result, I suffered for years from serious pouchitis/cuffitis. Also had very high inflammatory markers, felt very unwell - probably septic. Was at my rope's end and suggested that I could have an abscess/fistula to my surgeon, he laughed at me, said that if I had one, he'd be able to see it.

And ... I developed a pouch-vaginal fistula in 2010. None of the subsequent doctors/surgeons I saw commented as to whether long-term pouchitis and/or cuffitis could be the blame (I specifically asked). They postulated Crohn's, although there's never been any pathology evidence of such.

I am very sorry you are going through this. Quite frankly, I have done tons of research and nothing jumps out at me as being a "cure" for these fistulas. The loop ostomy can indeed be difficult to live with. I'm not sure what your doctors are considering now regarding your long-term plan. In other words, how long will you have your loop ileostomy? Have you and/or your docs considered pouch removal, or disconnect?
E EPMember
Thanks for your post and support. It can be a lonely place going through all this and I don't think you can really understand how hard it is living with chronic disease unless you've been there.

When they did an EUA to see what was going on they struggled to find the actual hole in the pouch (I think there was quite a lot of inflammation in the pouch which didn't help) and there was no actual abscess to drain, just lots of infected tissue spreading from the pouch right up to the surface of the skin; sounds like you may have had a similar problem. It just shows we need to be confident in our symptoms and thoughts about our bodies as all too often we are right - the tricky bit is getting anyone to listen! Having said that once I got to see my consultants I had excellent care - both my gastro and surgical consultants were very compassionate and sought advice from the leading gastro hospital in London as to treatment options, with the only option being an ileostomy.

I always associated fistulas with crohns and never imagined I would get one as I had UC - they've checked the EUA biopsies which showed pouchitis and double checked the original histology from when I had my colon removed which was definitely UC. Part of the reason for posting is to maybe help others as I think this is something being newly diagnosed. I wonder if its something we will hear more about and who knows perhaps there might be a medical treatment at some point.

I don't know how long I will be able to go on with the loop and pouch in situ. Psychologically I can't cope with the thought that this might be it and stuck with a bag for the rest of my life. My consultant has touched on this and I know there will have to be some sort of conversation at some point about further surgery. Feeling pretty low having gone through a lot of surgery and treatment for both UC and endometriosis over the past 25 years since I was a teenager. Would be nice to have a bit of a break from my body - guess I'm not the only one whole feels like this!
n/an/aMember
Yes, you are definitely not alone who feels like this!

I just read a post from Elaine in another thread who had her pouch removed and is doing well, and her fistula has dried up. There are others as well who have turned to pouch removal and seem to be doing quite well. Just something to keep in mind as you and your consultant mull your options.

I am 57, so the thought of a bag for the rest of my life is not as psychologically difficult as I am sure it is for a younger person. Going through multiple surgeries, however, is something I really can't consider at this point in my life.

I just read a post from Elaine in another thread who had her pouch removed and is doing well, and her fistula has dried up. There are others as well who have turned to pouch removal and seem to be doing quite well. Just something to keep in mind as you and your consultant mull your options.

Hang tough, keep us all updated as to how you are doing and any decisions that are made down the road. I wish you the best.

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