Ileostomy Bag Pain and Stoma Size Changes

Does anyone feel uncomfortable pain when they fill their bag? My stoma has reduced in size from 44 mm to 26 mm in 2 years.

Nope. Pain when discharging into the bag? Like stoma pain? Nope.

No, never mind. It's a bit bigger than yours at 30mm. What has your consultant/stoma nurse said is causing the pain?

Frank, can you describe the pain? I sometimes feel some muscular discomfort around my stoma when output comes out, but it's momentary. You may want to check with your medical person regarding the shrinking of your stoma—maybe that is related to the pain.

Ok, from what I understand, ileostomies do shrink from the time of surgery, but usually only over a matter of weeks. They settle down to a size and then remain that size.

The only pain I get is if the skin around the stoma is inflamed and needs barrier cream. I think a couple of times I had a slight blockage, and the stoma has really temporarily shrunk as the muscles are trying to push the output out, and it goes very hard and tense.

But I've found that laying flat on my back and slowly taking deep breaths has settled that out, and it's relaxed it.

The only other thing I can think of is, do you wear an anti-hernia device like a wrap or Velcro belt? If not, maybe contact your stoma nurse and ask them to examine it for a hernia. Most likely it isn't, but it's good to rule it out.

I've once, since having the ileo, eaten spring rolls from a Chinese takeaway, and they really didn't agree with my stoma, causing very watery output and then a lot of undigested bean sprouts.

I find sometimes a little gentle pressure around the stoma can release any trapped air in the small intestine and sometimes relieve some pressure, which has really helped.

And for reference, my stoma started out at about 38mm, and now it's about 35mm and has been about 35 since about a month after surgery.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Has there been a sudden reduction in size, or has it just happened over time? I'm like eefyjig; I'll get momentary pain sometimes that is just the muscle contracting, just before output is released. Pain shouldn't be constant, so something doesn't seem right. Has anything else changed? Are there different products you are using or something?

Terry

I was told all from about 20 I had IBS. I had a camera and a biopsy. So I was basically in pain for 30 years. Then, 2 years ago, I thought my appendix had burst. When I had keyhole surgery, they found my large intestines had a blockage and an abscess burst into my stomach. They then said I had diverticulitis. I lost three and a half stone before I went down for another surgery. Then I woke up with an ileostomy stoma bag. Unfortunately, I have a physical job as a multiskilled joiner. So I find myself better than I was, without having to go to the toilet multiple times and the pain that went with that. But I can't overdo it when I eat. I find myself without an appetite. I can't eat big meals because when I do, it's really, really uncomfortable when my bag fills. My stoma is in good health on the outside, but it's only 26 mm. Most nights, it wakes me up through the night.

Boy, you've certainly been through a lot for a long time. It sounds like you're saying that you're just really uncomfortable when you eat too much. I have that, too, but it depends on the food. I can eat tons of popcorn and be fine, but if I overdo chocolate, I almost have to lay down. It's like our bodies just don't like the excessive work they have to go through to process large amounts of food. Like after that big family meal where everyone talks about how delicious the food was but how stuffed they are. That happens to us with much smaller meals.

G-Day Frank,

I don't have pain as you describe, but my stoma went from 30 mm down to 18 mm. That seems small, but it's working well.

Regards, IGGIE

Popcorn was one of the foods I was told definitely not to eat. Thank you for the reply.

For me, I was told green veg, anything with skins like baked beans, peas, sweetcorn, no seeds, popcorn, etc.

White bread, not whole meal.

The 26mm is probably the size of your stoma at rest (quiescent state). During output, your stoma (life investment) expands. If you have eaten a lot, it expands more when outputting. Perhaps your barrier/wafer/flange opening is too small. If that's not the case, you may need to contact your doctor to schedule a CT scan or MRI to see what is going on. I'd hate to speculate further.

— Proud owner of lifesaving ostomy, vintage 2023, V6 colostomy engine.

What's the MPG on that motor?

Rather... gpm... (gallons per minute) 😆...

Your references to engines make me think you are reading Hot Rod magazines these days...

More like mpd (milliliters/day) 😉 I burn up about 500 ml/day — equates to about an average octane output. The high octane users burn up greater than 1.5 liters/day — whew 😱

I have actually started to put the statement at the end of all my personal emails. I have been reading posts where so many ostomates are despairing about what others would think if they knew they had an ostomy. 😲 I was once one of those persons. The only reason I have one is that I have a wife and two daughters that I didn't want to abandon — if I had been single, I would be dead now because I would not have had the colon resectioning that started me on the path to a colostomy.

I have fully embraced my colostomy and have studied thousands of pages from books, trade journals, and medical trials on ostomies and the GI tract. I realize the only way the stigma of an ostomy goes away is that many of us who have them begin to embrace them. Professional athletes have begun to say that they need to be more open about their battle with mental illnesses in order to fight against the stigma, so that athletes who need help will not be ashamed to seek help. I know of no one personally who has an ostomy — mainly because it isn't talked about.

I have decided to be more open about my ostomy; therefore, everyone who knows me will be able to say they know someone with an ostomy. If my daughters one day need an ostomy, hopefully, they will no longer feel the despair that I felt because ostomies would be no more disparaged than prosthetics.

Not every ostomate can be an advocate, and that is okay. But "Travelers" 😉 can certainly advocate during our travels. There will always be a need for silent advocacy and support; we have a big tent, but I intend to enlarge the open/vocal tent. I have ordered some tee shirts that have printed on them: "The night an ostomy saved my life. 🎶"

As for the engine reference, my dad was a drag car racer 😉

Good sharing my thoughts with you, my friend; the world definitely needs "Warriors." 😊