Hi guys,

i know this is an old topic, but i think I'm experiencing something similar...Im 2 months post takedown, around Afternoon/evening time i get these uncomfortable cramps/spasms, which i can only explain as my pouch filling up. I have to squeeze my anal muscles tight otherwise stool will come out. They come in waves every five minutes or so. Really uncomfortable for that 10 seconds then it passes. I would love to take something for it, as i understand it could just be an adaptation process. Im going to give my colo rectal nurse a ring Monday. Any input from my fellow pouchies would be great.

Thanks

Anthony

Hi Anthony,

just wondering how you are doing and what you have found out. I am suffering with the same issues I believe. It is really hard to deal with. I am 2 and a half weeks since take down and it's pretty uncomfortable. I think I would feel great if not for these spasms. 

I ammoraying that it will just get better with time. 

Thanks so much!

steve 

Yes, please post an update as I have the same issue. Anthony describes it exactly. It's really frustrating at night since it wakes me constantly. 

Hi guys,

Yeah I can say now I no longer experience these spasms at all. It's now more of just a pressure feeling. I'm sorry to say there wasn't really anything I took to make the spams go away, I presume it's just an adapatation process. Keep up with your loperamide, and try using low fibre foods.

it does get better though, just have to bite the bullet I'm afraid

Thanks for your reply Anthony!

its sure appreciated. 

If I may ask, how are you making out now?

Did those spasms just stop on their own?

thanks so much for your help!

steve

Hi Steve

im doing great thanks. Had the odd bout of pouchitis which clears up with a doseage of cipro. And when people wonder what pouchitis is. It's basically more of a hinderance than something that will stop you doing anything in life which UC done.

dont count how many times I use the bathroom, but just use it at my convenience. Can hold for hours if needed.

yeah the spasms just went on their own

Hey Dunninator,

Just wondering how you're making out?

what issues have you been having and how are you feeling at this point   

I love the info from Anthony, thanks! It gives me some hope that these spasms will pass and I will be able to sleep maybe. 

Anthony,

sorry to keep pestering you,,,

what kinds of things are you eating these day? Did you eat differently after your take down? My Doc told me to eat just as I was with the ileostomy, I was having no trouble with anything. 

I really hate these spasms! They start in the evening and do keep waking me up. At least it's not painful I guess. 

Thanks so much for your help!

Shaney, I got an rx for flagyl and within a day felt sooooooo much better. I didn't realize how off everything was until taking the meds.  Guess it must be pouchitis. Hope you find relief soon. 

Dunninator,

thanks so much for your reply. Did you ever think that you may have pouchitis? I don't feel like my symptoms are what other people say it is like. I get a spasm I guess all over that area that lasts a little bit and then passes. How did they diagnose this for you? How long have you been using your pouch? I have had this feeling wishing a couple days of being hooked up. It's only gotten worse

thanks for your help!

I am about 3 mos post takedown. I was doing well, but noticed an increase of this immediate urge at night and thought it was just a one step forward 2 back type of thing. Then it crept into the day hours more and more. After 3 days of it not improving (and going out of town for the weekend) I called the dr. Since I could not see him because we were leaving he rx'ed flagyl to see if it would help. So, no pouchitis dx. However, I am starting to wonder if it is a buildup of bacteria causing  gas. when I get that urgent feeling it seems like if I could pass gas I would be ok, but I know if I do I'll do more than gas. I can only pass gas laying down. Since flagyl kills bacteria it can help with gas producing bacteria (so I would feel better) I am going to start looking into other ways to combat that. Gas stopping meds don't work at all for me so I will explore probiotics, peppermint and diet. 

I am very relieved to see others are having the exact same issues I am having. I was persistent in telling my doctor something was going on, so he finally did a pouchoscopy. He found there was a staple left on my cuff, so he removed that. He thought the symptoms I was having was due to that. I was relieved to have a diagnosis...cuffitis.  But the symptoms have not gone away. That diagnosis was at the end of June. I am considering getting a second opinion because I am in a lot of pain and cannot seem to get relief on my own except with pain medicine and I don't like to take it. Do y'all see your colon/rectal surgeon for these issues or your GI?

well, felt great on my course of flagyl for about a week, then my symptoms returned. Next is trying cipro. Anyone know what the next step is if cipro does not work?

Dunninator,,  that stinks!

I've not taken either one yet so I can offer nothing. Sorry, wish I could. What symptoms have come back?

Marystrawberry,

Both of my Docs, GI and Surgeon are tied to an Internet program that allows me to ask them questions, kinda like email and they respond within a day. What I am saying is I would ask them both as I Really trust them both. My Surgeon is a God to me sonIbwould probably lean on her. Sorry, I know this is no help. Good luck!

Dunn, if it's pouchitis then the Cipro will probably work. If it doesn't then the next step might be to reexamine whether it's really pouchitis. There are other treatments for pouchitis, best used when the diagnosis is reasonably certain.