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I had my takedown in Jan 2013, and lived with my j-pouch for eleven months. I had constant problems with pouchitis and cuffitis, and none of the medication prescribed to treat the symptoms had a lasting effect. I was barely sleeping, hardly ever socialising, and really not enjoying life. The final straw was a trip to the south of France with friends that summer, when I should have been enjoying the sunshine, scenery, and delicious food and wine, but in reality spent all my time thinking about the next trip to the toilet. I came home and straight away made an appointment with my surgeon to talk about my options.

In November 2013 I had surgery to disconnect my j-pouch and give me back my ileostomy. And since then life has been wonderful. Friends can’t believe how healthy and happy I am. I’m now eating and drinking whatever I like, going to the gym, going to gigs, enjoying life again. I’ve even started dating an amazingly gorgeous guy who couldn’t care less that I have a ‘poo bag’ (as I call it) stuck to my tummy.

I’m not writing this to brag, or to convince others to give up on the j-pouch. We’re all different, in body and in mind, and just because it didn’t work out for me, doesn’t mean it won’t for the next person. But if, like me, you have the feeling that the j-pouch isn’t going to work for you, I guess I want to reassure you that you do have other options - good options. My friends and family were pretty shocked that I was giving up on the pouch so quickly, and I had a real struggle convincing them that this wasn’t a ‘rash decision’, that I shouldn’t ‘give it a few more months’ or ‘maybe see a counsellor first’. All well-intentioned advice, but I’m really glad I followed my own ‘gut’ instinct and went ahead with it as soon as it could be arranged. The best decision I’ve ever made, and I don’t think anyone who knows me would now disagree.

So there’s my story, for what it’s worth. Hope it’s helpful! This site has been a huge source of comfort to me over the past few years, and it’d be nice to give a little bit back in return for all I’ve received.
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Gee, I don't think your decision was soon at all. 11 months is a good long time to give your pouch a chance. It is not as if you were having typical adaptation issues, but constant pouchitis and cuffitis that were not responding well to treatment.

The whole point of the j-pouch is to restore some quality of life, and if you don't get that, plan B makes perfect sense.

I am very happy for you!

Jan Smiler
This post is very encouraging! My father is only 6 months and is ready to go back to the bag. He gave it his all but the j-pouch just isn’t working and he has no quality of life and is getting too thin. He has heard that the surgery is tough getting the pouch out and pulling out the stoma. Did you find that that be the case? I know it is no walk in the park but is it a lot harder than the step 1 surgery?
Good for you!!
I spent ten years after my j-pouch surgery in 1990 dealing with chronic pouchitis and multiple complications before I went back to a "temporary" ileostomy in 2000 to give the pouch a break. Got some relief initially but the pouch continued to deteriorate despite not being in"use". My surgeon at Cleveland clinic said the pouch couldn't be removed at that time..it would just cause more problems. That was in 2000. I was in pure agony for eight more years..my rectum throbbed..severe chronic pouchitis..in hospital with sepsis often. Finally in 2008 my surgeon said they could remove it and changed my loop ileostomy to a permanent one. The recovery was long, but I also went into the surgery very debilitated. I am so happy to see that people are able to have the pouch removed so much sooner if it is just not working for them. People literally did not recognize me as I recovered! I look 20 years younger!! I still have some occasional complications from having 6 major abdominal surgeries but it is nothing compared to my experience with the j-pouch!! It just doesn't work for everyone. Wish mine could have been removed after trying it for a few years. I would love to have the 18 years I spent struggling with that pouch back!! I love my ileostomy...and having a life!!
Last edited by Jubilee1962
what great stories of life after the jpouch..i was never able to make that jump to remove jpouch over course of 6 years with chronic pouchitis diagnosis ..in my case i had struggled for 2 years and than rotated antibiotics for4 years which made life more tolerable..than antibiotics seemed to have reached a dead end for me but new diagnosis to sibo had me try just diet change or elimination of foods and i was good to try again..if in my case i removed jpouch (which appeared healthy?) but troublesome i might not have discovered other reasons for my issues..so i guess its just an individual thing..but most importantly you folks who have made that leap have clearly said there are other options besides suffering and when we are through putting up with suffering there is another choice..thank you for posting life after jpouch maybe some other of our suffering friends will choose another path to life..
Thanks a lot for all your replies - this really is such a great, supportive community.

Ki - I forgot to mention that I actually still have my j-pouch. My surgeon was intending to take it out, but once he got me open he realised it was going to be a huge job, involving "chiselling" and plastic surgery - I didn't ask him for precise details. So he just disconnected it and formed an end ileostomy. I do still get some discharge from it,and sometimes have to wear a pad, but nothing too troublesome. I was in hospital for 4 days, and off work for 4 weeks, but recovered pretty quickly.

There is a chance I could develop problems with the pouch in the future, and will have to have further surgery to remove it, but we'll cross that bridge when we come to it....

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