Swollen Stoma and Pain - Seeking Advice

Help! I've never experienced this before. I have an ileostomy, a loop that was created so that it might be temporary, but when I decided to stay with the ileo, I kept the same stoma instead of having an 'end' one created. So my stoma is kind of an oval shape, and bigger at the bottom. I noticed lately that I was 'feeling' it more and more aware when it was working, sometimes there was quite a bit of pressure, which has now increased to pain, just before it starts working, but not while it's working. The bottom part of my stoma is really swollen and engorged looking. It is not a prolapse, had those, know this is different. The part of me that is swollen is just part of my stoma, not prolapsed bowel. When I lie down, nothing changes. The thing is, my output continues as normal, and I can get my finger inside the holes (I have two) with no problem, so I don't see how it could be a blockage. I had to change my pouch yesterday, and it was really hard because my stoma is so swollen. Even getting the old pouch off was difficult because it had to squeeze through such a small hole. Getting the new one on, by stuffing it in there was pretty tricky, and I'm not very confident in how good the seal is. I think I need to see an ostomy nurse, as this is not changing and it's been 24 hours now at least. Any idea what this could be? The pain isn't constant, but it's pretty bad and I certainly can't live with an ostomy that is this swollen. Something is not normal. Maybe I should have had my surgeon give me an 'end' stoma, but he seemed quite fine with keeping the same one.

Terry

Sometimes my stoma becomes swollen. It retracts and then will relax over and over again. It has not happened in a while and the swelling goes down in about 24 hours. It happens after bad diarrhea. I would be concerned about the pain too. Give your doctor or stoma nurse a call. It could be gas build up too.

Thanks, Maried. I thought of gas too, but I seem to be getting lots of gas out, so it's a puzzle. Mine is constantly changing size throughout the day, and often will look swollen, it's just never stayed this way!

Terry

I really don't know.

Hi Terry, could the other stoma be collecting output but not expelling it and it's hardening, kinda like an unused anus that's not been removed.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Terry, you might want to get it checked out to ease your mind. I hope everything is ok. Let us know.

Bit of an update. I managed to talk to my ostomy nurse this morning and she said any kind of gastro-intestinal issue can cause your stoma to swell, just as it could affect the bowels of someone who doesn't have an ostomy. I never even considered that, but it makes sense I guess. I realize that in the three years I've been dealing with ostomies, I've never been sick, no colds or viruses since Covid started....until a couple of weeks ago when Covid finally got me. So maybe this is all a remnant of Covid. She said it should ease in a couple or few days. Has anyone else experienced something like this with a flu virus?

Terry

You might have to cut your hole a bit bigger and see if that stops the pain and makes things more comfortable. I've had that happen before. But still contact your doctor.

Hi Terry

I must admit I had to do a double check because I've never seen you have any issues. If it's not settled down in the next 24 hours, I would have a chat with your doctor. Take care, my friend. XX

Thanks Caz. Well, I saw the ostomy nurse yesterday, and she is advising the same thing, see my surgeon, so I'm waiting for a call back with an appointment time. The ostomy nurse thinks this could be Covid related, and I did just get over it. It would also explain all the nausea I've been experiencing in the last ten days or so. She said the current variant is causing all kinds of weird symptoms, and nausea is common, as well as gastrointestinal problems. So Covid attacked my stoma?? I don't know, but it's still really swollen, and the pain I'm experiencing seems to be my intestine spasming. My output still isn't affected, but the pain is intense, and I have this hacking cough, also due to Covid, that won't go away, and it hurts my ostomy every time I cough. As a nurse, does any of this sound familiar to you? I'd love to hear your take on it. Thanks!

Terry

I wish I had some words of advice for you but I am clueless. However, your nurse is right, it could be COVID related. The cough and the nausea probably are. Hopefully, they will find out soon. All the best wishes.

When I saw the ostomy nurse yesterday, she put a new pouch on me, and cut the hole a lot bigger, and used a barrier ring. Unfortunately, it has made no difference.

Terry

Hey Terry, somehow I missed your original post. Have things improved at all? I hope so.

I wish I could say yes, unfortunately everything remains the same. Bottom of stoma very swollen and tender, and bowel spasms dozens of times a day, really excruciating pain. I'm waiting for my appointment with the surgeon on May 9th, which seems like a long way off, and trying to stay positive. Thanks for checking in. I do appreciate it.

Terry

Hi all, well, I'm almost afraid to say anything in fear of jinxing myself, but I think things are on the mend! The swelling of my stoma has gone down, not exactly to normal, but a lot closer, and the pain from spasming is less frequent and less severe. The last three days it has gradually improved each day. For lack of any better explanation, I am betting this really was Covid related, and my body is slowly fighting it off. The ostomy nurse seemed convinced it was due to Covid. I've noticed my Covid cough is getting much better too. Things are looking up!

Terry

!

I realized I hadn't updated this, for anyone interested in this thread. Things have gone back to normal, my stoma has shrunk back to its normal size, perhaps a tiny bit more of a bulge at the bottom, but no pain, and I'm back to wearing my normal pouch size, without barrier ring, and getting six-day wear time. When I saw my surgeon back in May, when it was still swollen, he said it was possible some bacteria had gotten in there (probably courtesy of Covid) and caused the pain and swelling. Everything is good now, I'm relieved to say.

Terry