Seeking Advice for Pelvic & Back Pain with Ileostomy - Scar Tissue?

Hi folks

I have had an ileostomy for almost 50 years as a result of Crohn's. My large intestine and rectum were removed. Everything has been going pretty well but... I have been having lower pelvic pain on the side of my stoma that also transfers into my lower back. I have had the pain for almost 3 years. It is not constant. Several days ago, the pain was more concentrated closer around the stoma. This seems to happen when the stoma is eliminating. I had to have an MRI for another reason and the MRI showed that there was evidence of fibrosis which to me means scar tissue. Just wondering if anyone else here has experienced this pain and if anyone discussed a remedy with their doctor. The stoma looks normal and healthy. I have a gastroenterologist appointment in 3 weeks. Thanks for your help.

Hello Redondo.

Thanks for this post as I look forward to all the replies you may get. I also look forward to your updates after you have seen your gastro.

I have all sorts of pains, and they are mostly long-term recurring. However, as I cannot be bothered with doctors and even less with hospitals, I use this site for valuable information to inform my own guesses as to what might be going on.

Best wishes

Bill  

Hi Re, I had what you described as my stoma was receding and shrinking from scar tissue constricting my ostomy, and I had to have resection surgery a few years ago.

Hi. Thank you for your input. My stoma looks normal so I don't think it is that issue. However, I will check with my GI doctor.

Hi Red. Your story speaks true to what I've been experiencing. The first year after surgery, I was almost pain-free, but since then, horrible lower back pain reminiscent of before surgery, and pain under and around my stoma, especially when I'm on the treadmill. I haven't been to my gastro doc yet; the appointment is in March. I'm considering going to a spine specialist as well. Please keep updated if you have new info on your situation! I'd greatly appreciate it.

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Hi Gemini. It's terrible that we have to wait so long to see a doctor when we have pain. I booked my appointment several months ago and my appointment is in a couple of weeks. The pain I have sounds similar to yours. When I have the pain below or around my stoma, the pain goes into my back. The back pain is different than the back pain that I have experienced before. Also, it's funny and grateful that the pain isn't all the time and doesn't happen when I exercise or walk. I'll update you when I see my doctor.

Hope you have a Happy New Year and stay pain-free.

Hello. Unfortunately, my GI doctor wasn't much help. My MRI's, CT's, and ultrasound scans didn't show anything other than some fibrosis which may be the cause of the pain around and near the stoma. She said and seemed to indicate that I have been having pain for a long time and it's normal. I reminded her that I had pain in the last 3 years of the almost 50 years that I have had the ileostomy. Her only suggestions were for me to find a physiotherapist that might massage the area and possibly have the stoma scoped at some point. She never even recommended a follow-up visit, so I will be in search of a new doctor.

However, on my own, I figured out that what I have possibly done to make this happen in the last 3 years and determined that for the last 3 years, I have been taking daily Esomeprazole Magnesium similar to Nexium to control acid reflux. So, I stopped taking it and unbelievably, the pain went away.

I am seeing an endocrinologist for another problem, and I will ask him his thoughts about this when I have my next appointment in 2 months.

Just wondering if you or anyone else has had this experience and what you are doing about it?

Thanks for any feedback.

Connie

My gastro doctor did a CT scan and MRI to see if there was a reason for my pain. There was nothing, so it is determined that the pain is from scar tissue. The fix may create more scar tissue, so it's not recommended to do anything. She did give me a prescription of Cyclobenzaprine 5 mg and can take 4 times per day, but recommends only 2 because it can cause constipation. The medication is to help relax the bowel to ease the pain. It works sometimes.

My stoma looks normal. Just sometimes it seems to have a mind of its own and it recedes. I think it happens if I'm dehydrated.