Hello
I had my pouch surgery in 2008. It was done all in one procedure. My aftercare has been somewhat lacking and I feel like I have been left to figure it all out on my own. I have been on this site from time to time and it has been a great help to me. I have discussed different treatment options with my consultant and I honestly believe that I'd have a bag now if it wasn't for all the information on here.
However, I still feel like I don't know what I am doing and that I am just "winging" it!
I now know that I had pouchitis pretty much straight after my surgery and suffered with that for about 5 years. It was only after I changed consultants that I had a proper diagnosis and received treatment for it. Once it was under control I was prescribed VSL3 and now take two sachets of that a day; one after breakfast and one before bed.
I've recently read on here that the effectiveness of VSL is now being questioned but it has helped me to eat a wider range of foods, the only one I can think of at the moment is cereal, which I eat more or less every day for breakfast.
My pouch function is a bit hit and miss; I have stopped counting my bowel movements during the day but I think this is because I recently changed jobs and the toilet facilities at work are much better than they were at my last place so it isn't a worry for me. I still get up two to three times a night which I am used to after all these years. I try not to check my phone when I get up and don't turn any lights on as I walk through the house and find this helps me get straight back to sleep when I get back in bed.
I've experimented with loperamide on and off over the years but I don't like how it makes my pouch feel. I've tried it again this week. I took the recommended initial dosage of two tablets just before bed. I slept really well which was amazing but I've had trouble emptying my pouch since then and I am more gassy than usual. Last night I tried just the one tablet before bed but this didn't do anything and I was still up twice during the night.
I have also tried peppermint capsules a couple of times but find they burn on the way out! It is difficult to concentrate at work with the after-burn and because of this I haven't tried it for long enough to see if it has any effect. Does anyone have any suggestions for this?
I have tried different diets and there is all sorts of information on here about the various ones you all live on. I honestly don't know which ones to try for the best! I have been referred to dietitians but they hadn't heard of my surgery before and could only give the general advice which I believe would be applicable to people with colons, so it didn't help me at all. I have tried the FODMAP diet but I don't think that made any difference to me. I had already eliminated a lot of "problem" foods and it didn't highlight any further ones.
For example, I only eat bread occasionally and I avoid white bread at all costs. I really miss having toast! I avoid fried food, pizza and takeaways in general but for some reason I am ok with a McDonalds. I don't have large quantities of milk or ice cream, strong coffee or leafy vegetables. This is because of the consistency of my bowel movements which I guess is personal preference and not because these foods make me ill. I don't have fizzy drinks anymore, although I am partial to the odd glass of prosecco and accept that I will be gassy afterwards.
All these years later I am still embarrassed by the noises my tummy makes after I've eaten and I hate using the bathroom at other peoples' houses. I'm presuming that will never go away.
I am very happy with my choice and my life has improved drastically since I had my operation. I have a very good job, albeit a stressful one, but I love it and I'm so glad that I persevered with my studies whilst I was ill.
I guess I just wanted to share my story with everyone and see if you can recommend any small changes that I could make to how I live which would help my pouch function and, more importantly, help me get more sleep!
Thanks very much
Liz
