I was diverted from my j-pouch to a permanent ileostomy and still had j-pouch problems so I finally had it removed. 

It sounds like your pouchitis is still flourishing. Can you treat it with antibiotics or whatever you were treating it with? 

Thanks for replying! I hadn't considered that it could be pouchitis, but that makes sense now. I haven't had any issues in the last 18 months; it just started suddenly overnight two days ago. I have an appointment with my doctor on Tuesday and will talk about meds I was hoping to be done with that, as we all do! 

What were your symptoms? What made you finally want to have the pouch removed? Was your pouchitis constant after the end ileostomy formation?? 

How long did you have it done?  Also do you have a loop or a permanent ileo?  Temps can still allow some stuff into the bowel, at least that was my experience with my new ileo prior to connecting the pouch up.

When you have the JPouch formed but are still on ileostomy, it's common to pass discharge as the bowel is still there, functioning and cells renewing.  You had bacteria in your pouch (good and bad) that are still there and still multiplying (a lot of fecal matter is actually excess bacteria being excreted)

The above is true for new poucher, so imagine it's true for someone who suddenly stops using their pouch. 

Hi Bobish,

i had my original j pouch surgery in 2011, and I had problems consistenly. 18 months ago I had the end ileostomy formed. They left the j pouch in saying it was too diseased for them to remove anyway. 

I have never had an issue until a few nights ago. I'm already feeling a bit better. My partner had a virus, and I'm wondering if these symptoms were how the virus could have manifested in me? And my immune system went haywire for a bit?? 

Thanks for your reply and help! 

I continued to have cramping pains, like labor pain. I just didn't feel better. My surgeon wanted to remove it all when I was just diverted to a perm ileo. I should have have listened to her. It would have saved me a surgery! My pouch had many problems and failed from a combination of them.

I'm glad you are feeling better 

Te Marie,

I'm sorry for your troubles. I hope the removal of the pouch has been good for you! Thank you for your replies and story! 

Hi, I had J pouch disconnected in February as had a twist and it wouldn't rejoin so had an end illeo, since then have had poop coming out the rectum, happens every few weeks and is painful. I use glycerine suppository and that clears it and doesn't happen again for a few weeks, a big relief!  The surgeon told me that no new poop will come down, so I assume it was left in the pouch, which is still there but disconnected

Hopefully there is an end in sight to this, cos it sure is painful when it happens

Heather

Hi Kirtymusic, 

I also have a disconnected pouch .. I have always understood that some leakage is normal as the lining of the bowel produces mucus, and that needs to be discharged. If it is bloody, and you are in pain then something else may be going on. Common issues with disconnected pouches include diversion colitis, strictures, or cuffitis. I think cuffitis is more likely associated with blood than the others. Might be good to see your doctor. Goodluck. 

TE Marie posted:

I was diverted from my j-pouch to a permanent ileostomy and still had j-pouch problems so I finally had it removed. 

It sounds like your pouchitis is still flourishing. Can you treat it with antibiotics or whatever you were treating it with? 

Are you feeling better now TE Marie with pouch gone ? I remember you had a tough time for a while.. 

My 2 cents. 

I read now why my surgeon wouldn't give me an end ileo without the removal of my pouch.  I'm glad it's gone. I think it would have continued to cause problems as I read some of these replies. Good riddence. I have zero issues. 

Well. One but not worth bringing up! 

Richard. 

Thank you for your replies!

My surgeon wanted to leave it in because it was so inflamed. He wanted to give it time to heal. From your replies, I think I had a little cuffitis, but it is gone now (fingers crossed). I am seeing my doctor in August and will have her take a look. I'm hoping suppositories will help if it continues to be an issue. Antibiotics haven't done much for me in the past, and I worry about being on them.

I hope everyone continues to have good health!

Thanks SAFF. I am doing a lot better without my j-pouch.  I had it removed 6 months after I had it diverted to an end ileo. The pathology report showed chronic pouchitis was still there. It hadn't gone away while it wasn't being used.

 I should have done as my surgeon wanted and had it removed when it was diverted. It would have saved me a surgery!

Hi!

I have a diverted J pouch with a loop ileostomy since 10/15. I have just been dragging my feet about the final step/decision which will most likely be j pouch removal/permanent ileo. My j pouch itself wasn't my problem per se, but 2 nasty fistulas in my rectal area led to my diversion. I have some sort of rectal discharge every day which is good and bad. When the leakage stops, I don't feel well (abdominal and rectal area pressure) and then I have a lot of discharge a few days later and all goes back to my normal of some discharge every day. Every time I have been on antibiotics, it has been a nightmare for me-either increasing the leakage from my rectal region or leakage from the part of my stoma that connects to the rectal region. I haven't experienced any pain or bleeding...yet! I realize we are all different but that is how life is for me with my diverted J pouch. One day I won't have to have toilet paper shoved up butt...I hope...hahaha. Good luck!