Ileostomy problem

For the last couple of days my ileostomy has been giving me a bit of trouble; not just the usual high output etc, but instead it’s been generally “uncomfortable”, and felt “wrong”. I’ve been loathe to investigate because I’d only just changed the bag, and since my ileostomy herniated, getting bags to fit well has been proving harder and harder. So I’ve been putting off investigating until my next “regular” bag change. Which was today.

And when I changed the bag, I discovered that my stoma (the part of my intestines brought through my abdomen) has swollen significantly. It’s probably doubled in size in the last couple of days – which definitely isn’t normal. Worse, it’s done so while I’d been wearing a snugly fitting bag, where the flange of the bag fits quite tightly around the stoma. The result is that the flange of the bag has been digging right into the enlarged stoma, and “sawing away” at it as I’ve been moving. Since there are very few nerves in the intestines, and I’m on lots of codeine, I’d not really noticed any of this beyond the vague feelings of discomfort, but the result is a lot of abraded damage to the stoma, which (since it has a very good blood supply) has been bleeding quite heavily.

After cleaning up as best I could, and making up a new bag with a much bigger hole through the flange, I called up the stoma care nurses at my local hospital, who called me straight in for an examination to find out what’s happened and why. I love the NHS at times like this – they’ve always been fabulous whenever I’ve felt like I really needed them.

Fortunately it turns out that despite how it appears, it’s not a serious problem. The swelling is just “congestion”, where fluid gathers in the stoma. Apparently it should go down of its own accord over the next few days. Similarly the damage I’ve done to the stoma with the bag looks a lot worse than it really is, and will also heal fairly quickly. In fact, it should stop bleeding now that I’ve removed the cause of the damage, namely the now-too-tightly-fitting bag. There’s no definitive view on what initially caused the congestion though; it could be my chemotherapy drugs, or irritation of the stoma by my waistband/belt, or (the current most likely cause) a further worsening of my hernia around the stoma.

The suggestion for now is to monitor the situation daily, and manually adjust each bag to fit the stoma as it hopefully reduces in size back to normal again. In the meantime I’m back to wearing baggy trousers and braces (the epitome of style, eh?) and taking even more care not to do anything that might further aggravate my hernia.

Roll on November when I finally get rid of both the hernia and the ileostomy.

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