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Pelvic pain and back pain

Mon Dec 27, 2021 12:36 pm
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Hi Folks

I have had an ilieostomy for almost 50 years as a result of Chrohns. 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 MRI for anther 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 gastrointerologist appointment in 3 weeks. Thanks for your help.

Tue Dec 28, 2021 3:04 am

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  

MeetAnOstoMate - 26,431 members
Tue Dec 28, 2021 9:43 am

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

Wed Dec 29, 2021 2:19 pm


ron in mich wrote:

Hi Re i had what you described as my stoma was recedeing 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.

Wed Dec 29, 2021 7:53 pm

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, appt 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.  

Thu Dec 30, 2021 10:15 am

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 then the back pain that I have experienced before. Also, its funny and grateful that the pain isn't all the time and doesn't happen when I exercise or walk. I'll let update you when I see my doctor.

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

Tue Feb 08, 2022 9:04 am


Bill wrote:

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 ...

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 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 ilieostomy. Her only suggestions were for me to find a physio thereapist 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 for 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 Esomeprazle Magnesium similar to Nexium to control acid reflux. So, I stopped taking it and unbelievably, the pain went away.

I am seeing an endocrynologist 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

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