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Hello everyone, hopefully everyone is okay?

I want to give an update about my recovery. Yesterday it's been a year since my takedown and 2 years since I got sick. During my recovery, this date was always a kind of lifeline. Everything will be fine after 1 year ... right?

At the moment I go to the toilet about 5/6 times. I use 6 immodium and a teaspoon of psylium fiber for dinner. I still don't eat vegetables and I am very careful about what I eat.

If I compare my current health with 12 months ago it is really going well, but honestly I am still not satisfied. I only had UC for 1 month before my collectomy and never had any problems with my gut. This sudden change in my life is still very difficult to accept. That's probably why I'm still not satisfied, although there are really noticeable improvements.

The main problem at the moment is that the pouch is not stable enough. Every day is different. One day I feel great and then boom..a relapse. For example. 3 days ago I only went 4 times. The bm's went smoothly, the jpouch was empty and i didn't feel a thing. Yesterday i went 10 times, had itch all day. These disappointments are sometimes difficult to cope with and make you tired and sad. Especially because i don't know the reason why it's happening.

I still often feel uncomfortable because I feel something is in my anal canal. I just feel it too much and therefore can never really relax because it's always there. Do not get me wrong. I know where i'm coming from and I am greatfull but pfff sometimes i just don't know it anymore. I will just continue with the recovery and see how it is after 2 years.

Some advice for those who want the surgery. Recovery is difficult both physically and mentally. You have to be mentally strong to accept a relapse in the recovery and deal with the disappointment. It's never a straight line, but there are going to be improvements over time.

Sorry about the rant. Stay safe.

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Don't feel sorry about the rant at all..i just vented a few days ago on here also..i am 7 months in from my take down date. I am a emotional wreck sometimes...I like this forum because I can vent and somebody here understands. I go about 5 to 6 times a day on a good day I can get it down to 4 times.. i wake up in the middle of the night at 3am every night. Which causes me to be tired daily 😴.  I have mixed emotions also about the whole surgery thinking maybe I should have tried the meds before allowing them to remove my large intestine. The 8 months of colostomy bag was very life changing. I will say not having UC and no GI mess is awesome. But on the other hand the J Pouch has its upside and downs...And it is not perfect by far but having a place like this forum and a great support system we can all work together to make it through.


Congrats on reaching the 1 year milestone!

I had my takedown on March 4th, so it has been almost three months now. I never took imodium, lomotil etc, and tried metamucil for a few weeks, but decided to drop it, as I wanted to see how things would be without it.

I am wondering why you use so much imodium and psylium fiber? Maybe it could be easier to empty without them?

I think you might try having more variety in your diet. I eat a lot of fruits and a lot of well cooked veggies, and I feel the pouch works better with large amounts of soluble fiber. I try to see whether I can handle foods that may cause gas, so I eat all types of beans, legumes with Beano. Sometimes I get little gas, but nothing terrible. I never had gas pains or cramps so far, probably thanks to Beano. I also eat nuts and dry fruits, which are supposed to be "no no". I chew them very well and I had no problems so far with them.  I have to say I had a few nights that were not so easy, but hey it has been only a few months since takedown, and in general, experimenting with food did not make me suffer. The only thing I avoid is mushrooms and corn, because I fear getting blockage.

So, I would suggest you to be a little brave with food, maybe at the weekends while you can stay at home.  It might make things get easier.

Hey Elif, Thanks you for your response. I think everyone is trying to find the right balance in diet and medicine to live a normal life as possible. I only started using Immodium after about 3 months because I wanted to give my body time to adjust and only used 1 Immo for a long time. Because of the loose stools and bb I slowly started to build up. First 4 and now 6.1 for breakfast, 2 for lunch,1 for dinner and 2 for sleeping. I also tried to reduce it again but that didn't go well so this works best for me so far.

You're right about food but I just want to feel good right now so that's why I haven't expanded and experimented on my diet yet. if I notice that it is going well for a longer period of time without problems, I plan to experiment again. Maybe I will even try a beer . Good luck in your recovery. 

greeting Alex

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