My Ongoing Battle With Sore Stoma Skin

Stephie December Blog

Sore peristomal skin (the skin that surrounds your stoma) is an absolute b!tch to contend with and right now it is the bane of my life …not even kidding.

Normally I experience sore skin at least once a month and that directly correlates with a big leak that has remained contained and sat on my skin for a while or high watery output.

They are usually easily remedied by stoma powder and barrier rings or shapes, until recently that is! I’m honestly baffled about what is going on with my skin at the moment. I would have attached a picture of it, but every time I look at it I want to cry because it is just so sore, raw and angry. A little bit of blood when doing a bag change is fine but pouring with blood (the skin not the stoma – if your stoma pours with blood please get yourself to a hospital quick) isn’t good. Now, I’m not saying it’s see-your-Stoma Care Nurse bad, but it is certainly to be kept an eye on. I’ll let my Stoma Care Nurse know about it in case they can offer any advice.

I’m still doing my normal routine of powder and barrier rings which is preventing it from getting worse, but it hasn’t started to help it get better.

I have a thought that it’s to do with the hypermobile Ehlers-Danlos syndrome (hEDS) I live with, which is a condition where the connective tissue becomes too flexible. It can affect different areas including the bowel and it may not affect everyone the same. For me, it means food digests ridiculously slow and is in hindsight why I suffered chronic constipation with my ulcerative colitis, and also possibly why my stoma is retracting further into my stomach wall.

It may be completely pointless, but I am trying to tone up my core muscles in the vain, miniscule hope that my stoma will stop retracting.

I am waiting on a phone consultation from my colorectal surgeon soon after being postponed due to COVID to discuss surgery options.

I am at the point now in my stoma journey (which is permanent just in case you were wondering) where I just want things to be going smoothly. Other than the hEDS it hasn’t been too difficult and it made me well enough to conceive which I am very grateful for, but the painful skin and leaks are becoming a bit too much to handle and I am finding it way too emotional to deal with on a more in depth level.

“I’m really struggling with sore skin around my ileostomy right now and am waiting to hear about more surgery. ” @colitistoostomy

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Are you struggling with sore skin and stoma pouch leaks? You should seek advice from your Stoma Care Nurse as soon as possible. You may also find this information about sore skin from our sister company, CliniMed, helpful.

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by Stephie Simpson

Stephie Simpson

About the author

I’m Stephie - a mum, wife and punk rock ostomate, blessed to be from North Yorkshire. I'll be writing about different campaigns that can help ostomates & general lifestyle posts.

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