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I spoke with my surgeon today, after 8 weeks of progressive drainage from the pouch, I asked him what my options are.  I currently have an ileostomy and also jpouch.  My pouch is very distended and chronically inflamed.  There is also a bottle neck area of GI just above the pouch, and also a camera pill that has been rattling inside since 2009, that my current surgeon has tried to locate with scope but unable.  

My current issue is the chronic drainage from the pouch that has been as bad, well almost as bad as when I had pouchitis.  I'm currently on cipro/flagyl and it is working butI feel this is a chronic issue that will return, just like previous cases of pouchitis.  

I'm so tired of being sick.

I'm seriously considering removal of the pouch and my surgeon agrees that that would be something I would have to face down the line regardless. 

My question is who on here has had their pouch taken out?  And how did the surgery go?  Did anyone have a distended pouch or excessive scar tissue?  How long did it take to heal and return to normal everyday life?

Any insights would be appreciated.


Last edited by JoelSmith
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Joelsmith, I only have a few minutes before leaving for work but wanted to respond to your post. I had my jpouch removed in January of 2015 and have a permanent ileostomy. Doing very well. There are several of us on here who have had our jpouches removed, some replaced with kpouches, some with BCIR, lots of posts under "Ostomy And Skin." I'm sure you'll get responses here but you're sure to get lots of info there in the meantime.

Lambiepie gave some good advice. 

No point repeating everything.  We have it documented in many posts.  You are more than welcome to search my posts.  My pouch period and post pouch period.  Removal. 

I didn't have mine as long as you.  But there are other options.  Alot to read here and absorb. 

Personally I don't regret getting my cursed pouch removed.  It never worked and my ileo works fine and I am happy again.  In fact I am sitting here after a change of appliance with a heating pad to get a good stick.  Lol. 

Good luck on your journey.  It is a tough decision.  It is for all of us.  But there is hope on the other side. 

Take the time to read some posts. 


Thank you for your responses, I did look at the other posts and they did answer some of the questions I was wondering about.  I've scheduled my surgery for this coming Thursday to remove the pouch.  I was taking some antibiotics to help with increased output, and it did help but once I stopped taking them, the issue returned.  Its been exhausting.  There's a slight difference from pouchitis, mainly that it isn't actual stool but rather mucus but still... it totally drains my energy.  I'm hopeful removing the pouch will help me get back to daily life.  

A couple questions I still have; did you have any bladder issues after the surgery or ED?  And also, my pouch is very distended wondering when it is removed how will that void be replaced?  I meant to ask my surgeon about this, he told me that there is scar tissue and that the bladder might have some of that attached to it so there is  a risk but from what he told me it was in the single digits, along with the risk of infertility.  Just wondering if anyone experienced any problems with that.

I didn't get a chance to ask him about the void the pouch will leave, like I said it is really large and it is supporting the organs around it... wondering if anyone had any thoughts about it...

In the meantime, staying positive!

Good answer, Scott! A "void" is a scary concept. Truthfully, the whole prospect can be stressful. Joelsmith, my jpouch had adhered to my bladder after four years. It took an extra hour and a half in surgery to unattach it. I had no issues afterward but was made aware of the risks by my surgeon. You have to just want your jpouch out enough to go with the trust and skill of your surgeon. Wishing you the absolute best of luck, the speediest recovery possible, and no more feeling drained from your jpouch! Come here with any concerns. We've been through this and are here for you.

Hi Joel,

I went pretty much strait to a K pouch (no j pouches back then) worked for me...removal is an option but if you wish to keep the door open for future options like the K pouch or BCIR then consult the surgeon beforehand. There are things that they may need to do while in there to assure that the transition is possible once the remove the pouch.

I wish you luck with your decision, I know how hard it is.


Just an update - I had the j-pouch removal surgery back on the 29th of September.  It was pretty tough.  The removal went well but there was internal bleeding and they had to go back in on the 2nd day and find the source and then restitch and restaple.  There was also problems with the epidural, by the 4th or 5th day it slipped out and they decided to take it out.  They increased my Fentinal to compensate which started to give me side effects, hallucinations and anxiety, had a nervous break down.  The only other pain med they could give me was demoral, because I've become allergic to everything else.  On the 6th day they found there was an abscess in the spot where the pouch was, I had to have a drain put in.  After a 12day stay in the hospital I was finally discharged.

I'm home now, feeling better, somewhat, but still have the drain in.  The infection they found was a strep infection.  I was on a 12 day course of penicillin but there was still stuff draining after I finished the meds.  And there is still stuff draining today.  Also, I've been having pain on my left side, it feels like a sharp stabbing pain if I press on it, and sometimes after I eat I feel it more, this has been going on for the past week.  I mentioned all this to my surgeon and he scheduled an MRI tomorrow.  I'm not on any pain meds, really for the past week I haven't taken anything other than tylenol, and really I've stopped that since Friday.  Wondering if the pain is just my body healing...

I did have night sweats pretty much every night since the surgery, until last week. Been finally able to sleep without sweating through my clothes.  

Energy is also getting better.

Right now the main thing is this infection, hoping the MRI shows that its cleared and I can have the drain taken out.  Wondering if the pain on the left side is associated with the infection, maybe effecting the spleen or pancreas... the output from the ostomy has changed somewhat, theres a strange odor, almost a non-odor, kind of mineral smelling, like freshly pealed raw potatoes, not iron-y like blood but mineral-y like earthy... wondering if my pancreas is producing to much bile or the infection is somehow affecting it.  Hope to get answers on Wednesday.

Last thing, they found the camera pill, intact.  I'll post a photo of it soon.  

Hi Joel, glad your surgery is over and done but, whew, sorry for your unexpected experience and all the stress that must have come with that. My surgery was in the winter and I remember still sweating. I just chalked it up to all the meds working their way out and my body recovering from the trauma of surgery and trying to heal. Sounds like you are very observant of your body. Keep good notes for when you see your doc and you can ask questions and be as specific as possible in order to get good answers. I hope you can get to the bottom of all of this and that everything clears up so you can put all of this behind you, and you will.

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