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Hi All,

I know I sound kind of repetitive but can someone please give me hope that these terrible spasms go away. I had them so bad in class I couldn't even concentrate on the subject matter. What is a "new normal" anyways. I'm so sick of that term i'm only 27 and i'd love to be able to go on a date with a guy without having to worry about pooping my pants. I'm trying to stay optimistic but how can you, when you can barely live? Any j pouchers who had UC please send some positive stories and hope my way.

Thanks Everyone! I don't know what I would do with out his site seriously.

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Yes, they will continue to reduce in frequency and severity. I don't know how long ago you had your takedown, but if you look back 4 weeks ago, you will realize that you are better than then. Improvement is very slow post takedown except for a few lucky ones. You have to measure your progress in weeks and months, not in days. You will get there. Just hang in there. Many teen had the same surgeries, and they are married have kids and enjoying their life. Most are enjoying so much that they don't have time to be on this site, which is a good thing. Not criticizing them, rather happy for them. I am one of them. I only visit every now and then, but I had so little issues that I don't have much experience to share. Good luck.
B
Hi Chrissey. I had my takedown about a month after you. I still have spasms too. They have definitely gotten better than they were right after takedown but it does feel like some weeks it is worse, then better, then worse again.

Anyway, for me I think it is because I have been expanding my diet and eating a lot more than I did before. So even though my pouch is adapting and improving, I'm also throwing more "challenges" at it and that makes it seem like it isn't getting better... if that makes sense.

Anyway, you can definitely try anti-spasmodics like Levsin. They didn't do anything for me. The spasms aren't associated with eating for me. They basically come on when I have a lot of gas in the pouch or when I really need to have a bowel movement. The best defense for me is to limit vegetables (sadly) and to simply eat less food. I have had days without spasms where I felt 95% normal... they're few and far between but I know it's possible and I think over time they will get more frequent.

Anyway, good luck!
P
That is about the same time when my spasms were the worst. But I was able to treat it with bentyl and levsin.

If I were you I would eat a lot of oatmeal and eggs for breakfast. They are easy foods. Peanut butter, potatoes and cheese should help as binders. 4 months out is not that long, I think things really got better for me at the 9-12 month mark in terms of butt burn and spasms fading away.

The body is an amazing thing. It adapts. But you have to help the adaptative process. Good luck.
CTBarrister
Last edited by CTBarrister
Hey Chrissey,

I'm 27 also but I've had my jpouch for 9 years now. Even though it was that long ago, I can still remember how hard those first 6 months were. I was having to empty my pouch very frequently, and everytime I did it became sore. Had really a bad spasm in my lower abdomen and jpouch for a bit as well.

I know 3 months seems like a long time to be dealing with these problems but it does get better. Your pouch is adapting to it's new role, and it's also stretching out. I found taking probiotics early in gave me a lot of gas, which in return filled my jpouch, giving me pain and spasm. I did kegel exercises which seemed to help a lot with me being able to hold it longer.

I know you won't start believing it will get better until it does, but it will. It's just something you have to go through to be able to live happy and healthy with your new jpouch Smiler

-Nolan
Subsky
Hey Nolan,


Thanks so much for the inspiring words. Some days I just feel so exhausted and unable to function properly and get very frustrated. I am going back to school for nursing after my experience, I want to be able to help others out who have to go through what we did. Even taking 3 classes is extremely difficult for me sometimes. I want to go back to the gym, do you know when I will be able to attempt this or have any words of advice?


Thanks again!
C

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