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L

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

Replies sorted oldest to newest

Scott FScott FMember

A couple of things that might be worth a try to get better sleep: 

1) Try Lomotil instead of Loperamide. I requires a prescription, but it works better for me at bedtime.

2) Try a small, fatty snack at bedtime, like a spoonful of peanut butter. Some people swear by it.

3) Experiment with dinner time. Some people really have to eat early to be done with it by bedtime.

4) Some of these might work well in combination with that single loperamide that seemed not to work. A thing that doesn't do the job by itself may contribute to a solution.

5) You might adjust to two loperamide at bedtime if you stick with it longer, perhaps a week or so. If you can stand the adjustment period.

Good luck!

Scott F
Jan DollarJan DollarModerator, RN, retired

I agree that lomotil might work better for you than loperamide. This is because loperamide is known to increase rectal sphincter tone. This is a good thing if you are prone to nocturnal leakage. But, some people find that it leads to difficulty emptying and even a "dragging" sensation in the pouch. 

As far as the peppermint capsules go, I have not experienced the burn you describe. Sometimes I can feel a bit of the "candy cane up the butt," but it does not rise to the level of a burn. Perhaps if you take it with food, rather than on an empty stomach, as recommended, you'll have better results. Maybe you are just sensitive to it, and you'd do better with peppermint tea (which did nothing for me).

So far though, lately my pouchitis is chronic and I need antibiotics in rotation to avoid the rumbling gut, urgency, etc.. l've been on a number of biologics for enteropathic arthritis, but they did not heal the pouchitis. So, I will be starting on azathioprine and Remicade in about six weeks. It could be sooner, but I wanted to get my shingles vaccine between treatment regimens.

Jan

Jan Dollar
Paul HPaul HMember

Hi Liz,

As Jan said try the peppermint caps with food, for me I get the same burn but twice a day with a good amount of food it's good. Beano also works well for me if I'm eating windy foods. Like you I'm up 3 or 4 times per night but have experimented & the only things that work for me are eating a big meal at lunchtime & just a snack in the evening (but even that means 1 or 2 visits) or Codeine Phosphate, I took 30mg last night & slept through (heavenly). Unfortunately it's addictive & I can only get it OTC with 500mg Paracetamol (Tylenol or acetaminophen I think in the US) but every now & again is how I will use it. I can't get Lomotil here in Catalunya.

Good luck! Paul

Paul H

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