Ileostomy + abdomen pain

SarahY 1 month ago

2 replies
109 subscribers
171 views

Hello everyone!

I was diagnosed with stage 4 colorectal cancer with liver and lung mets in July last year. I had stoma surgery, 12 weeks of Capox, 25 days of radiotherapy, liver resection, bowel surgery, and I'm about to start my final 12 weeks of chemo. Treatment has gone really well and my histology shows no living cancer cells left!

Two months ago I had an anterior resection and my colostomy was converted to an ileostomy. Now, on the whole I'm getting on really well with Kylie Ostomy and she's outputting absolutely fine. Sometimes liquid, usually porridge, but all good.

However, these last two months I have been having the most unpleasant pain in my abdomen. I THINK it might be trapped wind, but I've never experienced anything like it! It can appear anywhere in my torso, front or back, and it'll make moving so unpleasant that I can't think of anything else. It's not the worst pain I've ever experienced but it's really unpleasant! Does that make sense?

It's making it really hard to work (I'm an oil painter and art tutor, so love my work!). This is the longest I've gone without painting and I'm going crazy.

Does anyone with ileostomy experience have any advice to deal with this? I'd be so very grateful!

Kareno62 1 month ago

Hi SarahY and congrats on doing so well with your treatment. Could it be that your insides are still repairing from your surgery? Might be worth giving your stoma or colorectal support nurse a ring to run it past them? You could also maybe consider if you’re eating something that might be causing a blockage and then it’s clearing? If you do think it’s trapped wind then peppermint tea or cordial can help. Lastly you could try posting on the stoma board to see if anyone in there has similar issues.

community.macmillan.org.uk/.../ileostomy-and-colostomy-discussions-forum

Hope this helps

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Net77 1 month ago

Hi SarahY,

I had anterior resection with loop ileostomy back in January 2021, followed by an ileostomy reversal in March 2022 and recovered well.

However, from April onwards I had pains which came in waves and would then clear. That is until the end of May when I was admitted with a blocked bowel but cleared with gastrografin. This happened on a number of occasions until July when they found that the anastomosis had been leaking very slightly causing scar tissue to build up which eventually caused a complete block.

Mine presented as a bad pain coming in waves and unable to pass wind. However at the time I didn’t have an ileostomy so if you do have a blockage which keeps clearing it’s likely to present differently with you. I’d run it past your colorectal support nurse as Kareno62 suggests.

Keep us updated.

Best Wishes

Net77 x