I have muscle cramps a lot, leg cramps, etc but I guess that's not what you meant o well

Hey Wisconsin, could you describe how you're feeling when you have these cramps because I'm wondering if we're experiencing the same thing. Tomorrow marks 4 weeks since my takedown. Things are going pretty well except the cramps, spasms, gas/bowel pains, whatever the heck you wanna call them. Here's what I'm feeling. I get these very uncomfortable moments of feeling waste moving down below. I have to squeeze my sphincter together as tight as I can so nothing comes out. It usually lasts about 5 to 10 seconds, then goes away. But then I'll feel it again about 2 to 5 minutes later and will continue until I go to the bathroom. I can sometimes get some gas out when I'm laying down which feels awesome, but othertimes I don't dare try and fart cause I know I'll have a surprise in my undies. This feeling wakes me up usually 3 times a night (that's if I can fall asleep). I have found that this is the hardest thing to deal with on my new J Pouch. If I didn't have to deal with this, the J Pouch would be awesome and I don't think I would have much to complain about. Let me know if this is close to what you're talking about and what your doctor tells you. Thanks!

One last thing to mention. I never had cramping, gas pains, spasms or even so much as a stomach ache with my ostomy bag and I wore it for 9 months.

I'm 5 weeks post take down and I am experiencing the same thing! It is driving me insane. Like right now I'm exhausted but can't sleep and my docs are so nit picky I'm afraid to ask for something they always say its something else! But they aren't experiencing the same thing as me.

Hi, this is my first post here and just thought I would add my experience. I am three months post takedown and have had the cramps you talk about from the beginning. I would be up a minimum of five times during the night. The cramps got progressively worse, and then I started to have aching joints and a general feeling of being unwell. The only thing that gave me any relief from the cramps and urgency was a combination of codeine and nurofen, however as soon as it wore off they were back with a vengeance! They have been driving me insane and making my life a complete misery! I went to my GP who is brilliant, and he did some blood tests that showed inflammation was present, so I was prescribed a course of Cipro. I am halfway through the course and have had immense improvement. Last night I only woke up once, and this was only due to the need to pass water. It was absolute heaven to have a night free from cramps and actually get some sleep for once! Today, so far has been good - I haven't yet taken any codeine, and have had a lot less urgency. I am hoping that this is the answer for me,and that once the course of Cipro is finished everything stays good. Hope you all manage to find some relief from these cramps, I know how miserable they are and if I had to put up with them for good I seriously don't know what I would do!

I'm 20 months post take down and have some advice for you all.

The cramping where you stand or sit still for 10 seconds or whatever is normal for several months after take down. I found if I waited a bit after going to the loo and stood up and then sat down again more BM would come out. Your pouch is getting use to it's job and is trying to send the BM's right through like it did when it was a small intestine - that's how I look at it.

Some say to hold it as long as possible to "train" your pouch and others don't agree. I didn't see the need to do the extreme any way or the other and I didn't have any accidents.

Sleep is going to be elusive, especially in the beginning. I found sleeping pills helped. In the beginning I was afraid I'd mess the bed so I slept with a big towel or pad, like they use in nursing homes or disposable ones, under me. I didn't have an accident but I didn't sleep over 3-4 hours in a row.

Digestive enzimes are very helpful with gas. I started out with "beano" and then progressed to better cheaper digestive enzimes that help with most all foods. Look at the health food store or where supplements are sold. I used a few different brands that were called "super digestive enzimes." I also used generic pepto bismol chewables several times a day. I think they help with the spicy foods and slow down transit time. I learned about Digestive Enzimes and pepto bismol on here so you might want to do a search for past threads discussing them.

Cramping all the time like when I had UC or labor pains can be caused my many things. When the Cipro helped made me think you might have pouchitis as Cipro helps it.

Many of us take probiotics to help with pouchitis prevention. There are also many good threads to search for on here concerning them. I use VSL#3DS as my insurance pays for it after I reach my maximum deductible. Others have good recommendations on here as well. My nutritionist said to use only the refigerated kind as they are live cultures. I found out about probiotics on this site as well and asked my Internist to write the prescription. Since she handles all of my prescriptions and monitors my vitamins and supplements.

I have fibromyalgia so have other aches and pains as well. It might be a good idea to see a rheumy for joint problems.

I tried taking an antispasmodic back then and didn't notice it helped with the cramps. I did take non NSAID pain medications. I also took a lot of warm baths, sitz baths and heating pads became my new best friend. They help with lower back aches and on the abdomen.

My surgeon did tell me to use Imodium and fiber. I took generic metamucil in caplet form as didn't like mixing it in fluid and drinking. Plus you don't need to drink as much water because we are using it to thicken. Some people like metmucil wafers and they have more calories.

You all sound like you are dealing with all of this very well. It's a long recovery.

Take care

Well, It doesn't seem to matter whether its night or day. They come and go at any time they please. My doctor said to eat a little less whole wheat over the next few days and I had been drinking a lot of Gatorade and he said to go to water only because the sugar might be causing problems. I am going in on Monday to check if I have a stricture of any kind that may be causing the pain as well. I did have a stricture while I had my temp ostomy, so it may have reoccurred.

To Blake: they seem to come in waves, which makes me think it has something to do with the movement of my intestines. It will be really painful for about 30 seconds, then subside for a minute, then another 30 seconds of pain, then subside. If it is at night it does make sleeping difficult, but It seems to be random as to when. They last between a few hours to 24 hours at a time. I have gone to sleep with them and each time I woke they were still there.
Imodium does not cause it, but definitely makes it worse, and so I have not touched Imodium since I started getting these. It may be excess gas that I can't get ride of, I will find out Monday.

Blake- I get the feeling you are describing too, though I used to get it more- the feeling you are describing has been less and less frequent. I think the 5-10 second cramps you are describing is your pouch just trying to empty and still acting like its part of the overall intestine. This feeling I think is different from what you are describing. Try noting the intensity and frequency you experience the feeling you describe. I have found it has decreased for me over the last few weeks.

Thanks Wisconsin, hope you can kick these cramps soon. Take care!