Painful stoma - seeking advice and guidance for ileostomy

I don't have a clue because I've really had no one tell me how a stoma is supposed to feel. Mine has always been painful. I've told my doctor for a year now when I visit. Is it almost always painful with an ileostomy? I had my husband take a photo today of it clean after a bag change. Is mine supposed to look like this? I don't know if I'm supposed to add a photo of it here directly or not? For suggestions, let me know. Please. I'm worried and don't know what I should do. In the beginning of this ordeal, the hospital didn't give me a specific ostomy nurse or anything. Basically showed me once how to change the appliance and sent me on my way.

I have an ileostomy which, in itself, is not painful. What can be painful/stinging is the surrounding skin area of the stoma, which can be damaged if you have a leak or have a hernia local to the stoma. I'm surprised that you have not been advised about access to a stoma nurse. They normally know a lot more about aftercare for stomas than most doctors.

It's like no one at this hospital or town has even heard of an ileostomy before.. No one. Before any of this happened to me, my stomach had been hurting for months. I went to the doctor and she gave me nausea meds and something to calm my stomach.. I'm telling her it was much worse than a stomachache.. 2 months later, a soccer ball-sized cancer tumor ruptured, leaked, and burst through my large intestines along with acute appendicitis. I went to the emergency room and woke up several days later with a coffee-sized wound on one side and an ileostomy on the other... It's been over a year nightmare.. I'm just trying to get through this until I can get a reversal.

I don't think they even have a stoma nurse in either hospital in my town.

You can post a picture here.

I've had an ileo for almost 20 years now. It's not painful in and of itself, but if there is an issue with the skin surrounding it, there can be stinging pain, or if there's an issue with the intestine behind, there's painful pressure. But generally, there's not any pain.

You might have luck searching for an ostomy nurse through UOAA or via telemedicine. You can find more info about those services here: https://www.ostomy.org/find-an-ostomy-nurse/

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Let's see what you got, we'll figure it out.

Hi Ren,

No, your stoma should not be painful. Period. The skin around it is a different matter, but I think you're asking about the funny red thing poking through your gut, not the skin around it. If your stoma is painful, it's a sign that something is wrong. You need to get in contact with the folks in a large teaching hospital to let some people who know what the hell they're doing check you out. You could very well be risking your chance of ever getting a reversal if things get progressively worse.

I find most smaller hospitals are reluctant to send patients to other areas or hospitals for fear of getting a bad reputation of not being able to deal with any issue. So they deal with folks like you as best they can and hope for the best. That's a terrible recipe for success. Just FYI, cancer doesn't "burst through" the intestine, it grows through it. I don't even want to speculate what's going on inside your gut, but you need to get it figured out ASAP, and hopefully it's just something minor. Luckily, today you can set up online tele-appointments with docs anywhere, and most will easily agree to talk with you if you're not close. They can also let you get scanned or imaged locally and have the data sent to their radiologists for analysis. They'll probably want to see you at some point, but I find they're incredibly flexible nowadays. So first make a list of the places with the specialists you want to see, whether that's Gastroenterology or Oncology or what. Pick some places that do it all, as you don't know which direction this could go. Texas has loads of good hospitals, with U of T's MD Anderson in Houston and U of T's Southwestern in Dallas coming to mind. Baylor has hospitals in both locations as well. So it just depends where you are in the great state of TX. So check with your insurance company and see who's in network, or however they deal with that, and start making some tele-appointments. Depending on what's ailing you, time may not be your friend here. Now GIT! girlie!!

;O)

Bob

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Hi Ren, if my skin looked like that, I would be climbing the walls. Only the stoma should be red and the surrounding skin pink.

Yeah, that doesn't look right at all. Is the yellowish stuff output? How long has it been red like that around your stoma? It almost looks like open flesh.

Ren, here's a picture of mine recently. Notice how the only red part is the actual stoma.
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Are you cutting the hole in the base plate too big? Next time you change, when you peel the plastic backing of the base plate, place that over your stoma. If you can see skin and the red inflamed skin, the hole is being cut too big. When poo from ileo gets on your skin, in basic terms, it eats your skin. Always aim for a nice snug fit around your stoma with the base plate.

I use pre-cut Convatec with moldable. Thank you for your help.

Yes. I see now. Thanks.

I don't know. Like I said before, my hubby changes it. I spoke to my wound care nurse this morning while at the hospital for PT. She suggested I get the paste and stoma powder and try that. This is the first time I've actually seen my stoma. I'm very squeamish. I think I'm still in shock about this even though it's been a year now. I recently finished chemotherapy in July because I had to wait 7 months for my tumor removal wound to heal, which was larger than a coffee cup. That was a huge wound. I couldn't even look at it for 7 months. I guess I'm a weak ass person.

No, not weak, just being yourself. Personally, I'd go with the stoma powder around your stoma in the red area and then barrier wipe/spray to help build up a crust to help that area heal. And like I've said before, if you can leave your bag off for a bit and let it get some fresh air, that'll help. Then, let it dry well. Put some stoma powder on and blow/shake off any excess and then apply a barrier spray/wipe and let it dry before applying your bag. I've never tried the barrier paste so I can't say yes/no to using that but I use a barrier ring.

Hi Ren. Well, a pic is worth a thousand words!! What you've got there is pretty classic irritant dermatitis. It's from exposing too much skin around your stoma to your output. Your ostomy nurse should be right on top of that, as it's easy to fix. The hole in your barrier needs to fit tighter to your stoma and your problem will go away.

I put a link on here a couple times to a fantastic book all about things that go wrong with stomas entitled "Abdominal Stomas and their Skin Disorders" by Dunitz (edited by Lyon and Smith). It's a great color picture book with just about everything one could be experiencing with their stoma. But since this site doesn't have 'stickies'.......that info is lost to time. But it is online, so if I can find the link again I'll re-post. It was originally a very expensive book, but since very few bought it (go figure!)........or looked at it in the library......you can typically find copies of it online for just a few bucks. I encourage anyone with a stoma to pick up a copy to have on hand. The ISBN is 1-8537-896-9. But if you're squeamish.........you might want to have hubby read it!!

;O)

Bob

Before you put your base plate on, use a washer that fits snugly around the stoma and then put the base plate on over the top.

Well. I ordered samples of powder and paste. Next day arrived and we changed out my bag and tried it. Oh my Lord... stopped pain within 1 hour.. Thanks people!!!!! That was Friday. Yesterday I felt so much better for the first time in a year.. I went to church. Overdid it a little. Started stinging a little so we'll change bag and repeat this again. Hoping around the stoma will start to heal. Thank you again.

Good for you.

The VA tried to supply me with Convatec moldables... I had the very same problem because the hole was too large for my stoma. I believe you would benefit from a cut-to-fit system. When they switched me over to a Hollister cut-to-fit system, all of my skin excoriations rapidly healed. I also recommend stoma powder... it's worth its weight in gold IMHO