Hi, I've had my J-Pouch for 20 years with no problems until this year.  I have a branching fistula going in various directions with one opening where the J-Pouch joins the bottom and the only problem it's currently causing is a fistula opening in my left buttock.  I know there are lots of different treatments for simple fistulas but not sure about more complex ones, my next appointment isn't for a few weeks to discuss options hence wanting to have any info from those in similar situations.  I need surgery to remove an abdominal cyst/pocket if fluid anyway (unsure if this is directly linked to pouch or a separate issue / hydrosalpinx) - not worried about surgery and I didn't find my ileostomy too bad an experience.

curious if a temporary ileostomy is the best way for the fistula to heal or even removal of the pouch.  Can setons be temporary and can parts of abdominal fistula or parts of it be removed, i know it mentions opening them up, also can parts of fistula branches simply be showing on MRI but not active.

Thanks in advance for any info.

 

Original Post

Hi Sallyap. I got my jpouch 30 years ago. It served me pretty well during that time. However over the last 3 years I developed severe branching fistulas/ abscesses, super painful. I decided to have an ileostomy (surgery Nov19). Interestingly even though my GI said it wouldn’t happen, all my fistulas and abscesses are healed.  I’m not currently contemplating reattaching the jpouch as I think it would all become problematic again but it’s great to have all the pain gone. I also may not need to remove the (now retired) jpouch ( ie avoid the full Barbie Butt surgery) which would make me happy as I think that’s pretty major surgery.  I did try setons but they didn’t do a lot for me and were super uncomfortable. Good luck in exploring your options. I hope things improve whatever path you choose.

Hi LBA, thanks so much for taking the time to reply, since posting I have a seton, open wound and drain as a temporary fix on the track that's opened on my buttock until I have the main surgery.  My surgeon has mentioned there is the possibility of creating another pouch but I will be super cautious about considering this as don't want to be dealing with fistulas in the future.  I know I can carry on as normal having my ileostomy back where as I definitely have struggled dealing with the fistula surgery.  Out of curiosity where did they place your ileostomy, on the same side / scar or other as before.

Thanks again, I live in the U.K.

I hope the setons clear things up for you! Doing a whole new jpouch would concern me not only due to risk of fistulas coming back but also losing another foot of small bowel/digestion.
My ileostomy is on the right, same as 30 years ago.  I will add that there are tons of new products, both in the super wide range of appliances but also wraps, undies w pouches, stealth belts etc that make ostomies much easier than 30 years ago!

Sounds like you have a good mental attitude. If you say “ what’s the worst that can happen” and you can live with that, for me that gives me peace of mind and reduces stress.

All the best! Feel free to ask any other questions as you go forward. Happy to share whatever I can.

 

Thanks again LBA and yes that is another reason (losing more small intestine) not to have a new j pouch.  The seton is helping as less tummy pains but not going to fix the whole branching fistula.  I have a feeling that I would have had enough of surgery by then too to want another j pouch but trying to keep open minded.  I need to find out more about the surgery including sowing up by bottom of it comes to it.

i did look at stoma products recently and yes there are loads aren't there.

 

thanks, Sal

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