Butt Cramps with Ileostomy and J-Pouch: Seeking Advice

Hi there friends and a belated Merry Christmas and Happy New Year to everyone XOXO

Now to my problem. For several months now, I have been having the nasty, painful problem of cramps in my butt!!

I have no colon and only remnants of a rectum, just a stump. (Ulcerative Colitis and Ileostomy with a de-functioned J-Pouch). My rear exit has not been closed, so I get bits and pieces of "stuff" coming out there, I understand that. What was worrying me is the cramping pains just where the stump is.

It feels like there is a fist gripping what's left of my rectum. The feeling is like that fist is squeezing and tugging at my rear, trying to pull everything inside. That is an awkward explanation, but I'm sure you get my drift.

This bothers me most at night but also happens during the day. I was given an ointment which has Nitroglycerin in it. My doc tells me that the cramps stem from a low blood flow to that area which constricts blood vessels. Just as with a heart condition, the Nitro dilates the blood vessels and relieves the cramps but only for a short time.

I use a steroid called Colifoam when I can safely squeeze the three-inch nozzle in far enough to get to the area involved. It has been too constricted to use this. I am using the other ointment

(Proctogensic) instead. It tends to give me headaches which is normal with this.

I just wanted to hear from anyone who has had this cramping in that area. Preferably someone comparable.....no colon with an ileostomy and a de-functioned J-Pouch.

Other than that, I'm doing pretty well. I have requested an MRI because a scope just will not go in there without much pain and a risk of a fissure from the device.

Thank you all for any info provided.

Happy New Year all you Abnormals!!! From Mayoman AKA Eamon.

Hi! I have spells of a very similar kind of pain too, though not in recent months, thankfully. They are particularly prone to waking me at night, but almost always go away if I sit on a toilet and relax my anus. Just occasionally it takes a hot bath to get rid of it. (I was going to say 'Who are you calling abnormal?' but having read what I've just written, maybe I won't bother....!)

Hi Chris, thank you for your comment. The abnormal was tongue in cheek, of course. It is much worse at night. Colifoam works really well when it is relaxed enough to get the nozzle in there. I was worried about something else going on in there?? Getting an MRI to check it out, will post again if I get more info. Magoo.

Hi there. Yes, I have that problem and I get a dragging pain in my abdomen. I found that I still, after 18 months, have the barium paste they put up the anus before a defecogram. I wasn't able to pass any despite a lot of effort. I have a permanent ileostomy and have had my anus sealed, but my return is still there, unfortunately, because it detects fecal loading despite not having the motility to expel the goo. The nerves that drive it go into mega push. I can't tell you what relieves it because I haven't found anything effective, and if you have only a partial rectum, it's not a good idea to use any kind of internal anal preparation. Sorry I couldn't help, just thought you wouldn't feel so alone.

Hi

Lorraine, you have my deepest sympathy: I had never heard of a defecogram, but having Googled it I have made a note to avoid one at all costs! I'm sorry to hear you are still suffering as a result of one though - and it does sound like you get a similar feeling to the 'butt cramp' one.

I like how you named it, I have always had a problem trying to explain it to the doctor. I have a full ileostomy, I wear a pouch, my rectum was removed and sealed, there is just a tag or little stump there now. I had the surgery when I was 10 years old, now I am 60 and the cramp crops up every so often at annoying times. To me, it feels like I have to go, but am straining very hard to hold everything in. Doctors have told me that they think it is something like the invisible arm thing that amputees often have, where they can still feel their arm even though it is gone. The nerves are still there and sometimes they start firing off and you get the cramping feeling that you might have had before when trying to keep control. If it helps, I find that it will often show up if I am stressed, or I am leaning forward in my chair at my desk. It helps if I go to the toilet and let it strain as though you were trying to pass something. It also helps to lean back, often way back in my chair to try to relax the muscles. Sometimes destressing exercises help like deep breathing. Since you have a little anus left, getting the MRI is a good idea, just in case. After 50 years, I have learned that sometimes you are stuck just living with these things, and it is often a good reminder why you had the surgery in the first place, because butt cramps once in a while sure beats the butt cramps I had every day when my colitis was chewing up my insides and the bathroom always seemed like it was a mile away. As a long-time ileostomy wearer, I can tell you that life gets better and better.

Hi. I have had my rectum and large colon removed over 40 years ago as a result of Crohn's. Now, I am 60. For the first few years, I had a lot of problems with perianal fistula. At that time, my surgeon used to cure it. Eventually, he advised that we leave it alone and that I should have several sitz baths daily and that eventually it would heal. It did, and I wasn't bothered with it for over 25 years, until now. It started at first as you say with a cramping feeling around that area. But now, it feels more like there is something there, and I think I have another fistula. It's not unbearable, but it is concerning why all of a sudden this has cropped up again. I am doing the sitz baths again, and they help to make me feel more comfortable for a few hours. Thank goodness, the discomfort is not waking me up at night. I wouldn't want to try to strain myself. As a matter of fact, I am thinking this might have started after I was lifting some heavy boxes around Christmas time. I am hopeful my situation clears up soon, and I will hold off seeing a doctor unless it becomes a real problem.

I also have butt cramps. I call them spasms, some are excruciating. I am in some kind of pain all the time now, anywhere from mild to moderate and then those spasms hit. I was supposed to have an MRI (2nd one) yesterday but cancelled due to the weather. Have seen several docs. One wanted me to see a back dr. The pain is not in my back. It is affecting the quality of my life. My pain is worse when I stand so I don't go anywhere. It used to help if I sat down. But now I have pain sitting (like right now) also and even in bed. It starts in the rectum area and spreads through the right cheek. The scary part is a couple of times I have just started having pain in the left cheek. My rectum is sewed shut and I am not sure, but think I just have a stump. It is almost 3 years since my surgery. This started out soon after as just little twinges of pain and was told it is phantom pain and would go away. Well, it did not go away and keeps getting worse. My PCP wants me to go for physical therapy but I don't see how that would help. I am so glad I found this post. I have not been spending much time on the computer because of the pain when sitting. Unfortunately, these posts are not very encouraging that there is a cure for this.

Your story sounds just like mine. I have had a colostomy bag for 14 months. I have been going through the same excruciating pain as well. Went to my surgeon last week and she wants me to go to physical therapy and to a therapist for my mind. She said I have been through so much this year maybe that might help. I also am getting an MRI just to check and make sure there isn't any fluid in there. I had stage 3 rectal cancer and had part of my large intestine and my rectum removed and sewn shut. This pain is ruining my life, I do work part-time three days a week for 3 hours a day. Then all I can do is go from my bed to my chair. I feel so bad I can't enjoy my family, friends going out, it's awful. My surgeon thinks I'm having muscle spasms in my pelvic floor, but of course without an anus she can't check. Anybody else feel like this?

I have had an ileostomy for three years. I have about five inches of rectal stump, but not a J-pouch. I have had similar cramps over the last three years. Most times, I excrete some mucus and it goes away for a week to a couple of months. The doctor said it was proctitis. This is because the wall of the stump is built to protect from stool bacteria and toxins by producing a protective mucus layer. Since there are none, the body still defends against this and it creates mucus. This is what causes the cramping sensation in my stump. My doctor gave me a suppository that was supposed to act like the stool. I did not use it. Just let the mucus out when it builds up.

Hello all, I had my bowel and rectum removed with a stump in the rectum remaining. I am 5 months after surgery. I don't have cramps but a sore backside all the time. I am passing mucus lately, maybe 3-4 times a week. It feels like a pressure on my back passage, but only a small amount comes out. Will this go away or get worse, or is this part of what happens when you have a colostomy?

Did not have a sore backside until I started yoga and martial arts this summer. I am noticing some lower back pain. My chiropractor said it could be the membrane that holds the intestines in. Apparently, the membrane attaches at the top of the pelvic bone above the gluteus maximus (rump). Discomfort only on my left side. Ileo on my right side. Been 3 weeks now. Waiting to see if it subsides. Not much mucus in the last 3 months. Used Protofoam a while back. Hope this helps some.