Ileostomy site

Jayne

Hi, colorectal cancer friends - I've been having discomfort at my former ileostomy site for a few years now. Colonoscopy and CT scans don't reveal any problem but I still feel like something isn't "right" there. Could this be phantom pains or something? My reversal was 14 years ago so surely if there was something wrong, it would have been detected by now. Is anyone else experiencing this? My Oncologist wasn't too helpful or concerned on the topic. :-(

Cassie22

Hi Jane. My ileostomy site has been an issue from the moment it was reversed (4 1/2 years ago.) It is my very first indication of stomach upset, and still cramps up after exercise or after a good laugh. Was told it can take a very long time for the muscles that were cut to be 'normal' again, due to scar tissue. CTs are clear, so I don't think about it except as a way to know I've overdone it!

Jayne

Thanks, Cassi22 - me too, it was an issue when I had it and an issue when it was reversed. I also get a lot of cramping like you do, it's reassuring to know it's not all in my head!

JaneA

Mine's permanent so I don't know, but I believe that once you have a colon or rectum resection that there will always be some issues with cramping and just not like it used to be. Hope that those feelings resolve soon.

po18guy

I was diagnosed with "terminal Ileitis" in 2014. What it turned out to be was lymphoma. Once eradicated, it left behind only scar tissue. A neurosurgeon told me prior that I developed much scar tissue. To this day, I have occasional tenderness at the site caused by the scar tissue impinging on Iliac nerves. Since surgical removal of the scar tissue would only develop more scar tissue, I accept it as part of the "cost of living." I have been a chronic complainer all of my life. Cancer stopped much of that and reset my perspective. Now, I take note of the fact that one must be alive to have complaints.

Have you perhaps consulted with a gastroenterologist?

Jayne

Thanks for the responses everyone. Po18Guy - you are right, we do need to be alive in order to complain - I love that! I don't mind the cramping so much as the thought of something going wrong in there. I had an allergy the adhesive from the colostomy and ended up with an abscess, which just further traumatized that area. This must just be the nerves around the location as was pointed out.

po18guy

Noise. Every little ache, pain, irregularity, dip in blood numbers, rise in LDH or whatever, becomes noise. As it is with life, there are times which are noisy and times which are quiet. Noise is more disconcerting for cancer patients, but we have perhaps a greater appreciation than others for those times of quiet.

alivenwell

p01guy, then you must have been around a few people who mindlessly leave a few belches. I will never forget extreme gas after surgery of the colon. After one very funny visitor, I felt much better.

alivenwell

Could drinking more water help with some of the issues mentioned here? It helped me.