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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