JPouch Removal

Hey everyone, 

I am new to this forum and from the U.K. and looking for some feedback. 

I was diagnosed with UC in 2007 and underwent an emergency operation in 2017 to remove my large colon after it perforated. I was left with a temp ileostomy and my rectal stump was still left in place. Fast forward to January of this year and I had J Pouch surgery to remove the rectal stump and put a JPouch in its place. No temp loop ileostomy was given because whilst the surgeon tried to, everytime he stretched it, it would pull my pouch out of place. So I have been using a pouch which has been healing for the past 10 weeks.

I currently (after scouring the internet) have realised I have pouchitis. I am due to have a sigmoidoscopy on Wednesday of next week to confirm this but want to ask my surgeon if he will remove the pouch and give me a permanent bag now. My symptoms are that I haven’t slept more than 3 hours a night in the last 10 weeks, hardly eat (coming up for 2 stone weight loss) nightsweats when I do sleep, tailbone pain, dizziness, constant bowel movements and generally cannot leave the house. It’s totally affected my mood now as I was previously so positive and loved living life. I’ve hated everyday of the last 10 weeks and even lost my relationship.

My question is to see if anyone else asked for this so soon and if I’m likely to get it done so soon? I can’t even go back to work which soon will have financial implications for me if my surgeon doesn’t agree to do the operation for me to allow me to recover and get back.

Thanks

Original Post

M, it’s probably premature to consider pouch removal, if only because you haven’t had any treatment for pouchitis. In most cases it’s pretty easy to treat, needing just a couple of weeks of an antibiotic. It can make a world of difference.

People vary in how quickly they adapt to a J-pouch, and how quickly their J-pouch adapts to them. 10 weeks is still pretty early in the process, but about right for when it can become discouraging. You don’t describe your symptoms, and I don’t know if you want any help with them (beyond pouchitis treatment), but folks here are willing to help if you are interested.

I’d expect your surgeon to try to discourage you against pouch removal at this stage. Hopefully he/she will have some helpful alternative things to try first.

Good luck!

Thanks for the reply Scott. 

I just don’t want to keep a pouch at all. I feel like I had a life with a bag which is now gone and 10 weeks later I’m still housebound with no chance of it changing soon. 

I started ciprofloxacin which isn’t helping much (had some spare from a UTI). 

I feel like I’ve made the wrong decision and now I’m going to be “stuck” feeling this way with no life with this pouch now. 

My worry is that there are more problems than pouchitis and I don’t want to start getting fistula surgery and things, I’d rather just get a bag back and sleep and eat the way I used to again.

its discouraging to watch people who opted for bags after my surgery now back out there whilst I am still sat at home poorly. I just can’t see how this pouch is a good for me at all.

thanks 

M, many of us have been there.

 Are you taking prednisone?  That can cause sweating.  Lots of sweating…

 Antibiotics can be finicky things.  Try to get seen as soon as possible to be sure you are on an appropriate antibiotic.

 I needed about nine months before my pouch “Woke up” as my surgeon called it and I could have something that resembled a normal life.  About six months in, I was seriously thinking about going back to an ostomy.  Glad now that I waited.

 There are a lot of factors that can be in play here.

 I hope you find the correct solution for you.

 

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