Hello all, I have posted this before, but my husband is still experiencing incredible burning through the stoma every night after he eats dinner. We have adjusted the nutrition up, down, and everywhere, have gone back to the surgeon who says that nothing is wrong, and are having a hell of a time getting to a stoma nurse because they just don't seem to exist unless you go in the hospital. After he eats, I give him hot tea to help move things along, and sometimes it works and sometimes it doesn't, but he can go for five to six hours of burning every single night as the stool is coming out. Does anyone have any ideas as to what we can do to help ease this? We've gone with Pepcid and other products to hopefully reduce the acid in the stomach, but we just are at wit's end.
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Good Evening Bob and All,
I checked my email and saw new postings. That's when I usually visit the site. I've recently met a few others who have developed UC and have made contact with them. I've directed them to this site. I also use the site to look up concerns they or I have. This site has been unusually helpful to me. I have seen questions and concerns of others posted. After I scroll down and see similar comments that I would make, I don't comment. As for social media interest, I have a Facebook account (due to work). As of this date, I have one Facebook Friend (and don't even know how that happened). I find the content here more relevant to my life. Then again, I'm old school. If I want to see how a friend is doing I just make a call.
Stay Safe and Sane all. Back to the hockey game,
SharkFan
Are you sure he isn't leaking? The stoma itself has no nerve endings, so it should not hurt. The skin adjacent to the stoma has lots of nerve endings and will hurt like crazy if output is getting on it.
Getting back to basics, are you using a barrier ring? There may be a small gap between the stoma and appliance that is allowing output to get on the skin. A barrier ring will help if that's the case.
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Using stoma paste for no leakage.... Using the right bag, it stings as the poo comes through. No one can figure this out. Also, he is undergoing chemo right now. He is in the other room screaming every night!!
Drop the paste unless he has uneven skin like a scar interfering with adhesion. Paste is best used to fill these uneven areas to prevent leaks. But it is extremely difficult to work with and can lead to gaps and leaks. It might be part of the problem, but maybe not. Regardless, there are better products for whatever you are using it for unless you are filling an uneven area.
Get a barrier ring. There are multiple brands, but they all work in a similar way. They absorb output to prevent it from getting to the skin. Most or all will swell as they contact liquid, helping to close any micro-gaps. The rings are moldable. I suggest cutting one side and molding it tight against the stoma. It will not hurt the stoma like a too-small wafer hole, so make it as snug as possible. I think most of us agree that barrier rings are awesome and should always be used. If you don't like one brand, try another.
It is tempting to blame the chemo, and if the stoma had nerve endings, I would agree. But it does not.
I didn't get my colostomy until after chemo, so I can't imagine how bad this is for your husband. I hope he gets some relief soon.
Great response, Susan.
Just want to add, if your husband's ileostomy is a loop ileostomy, don't put the ring tightly around the stoma, blocking the second hole; this would cause a lot of trouble and pain. Make sure to put the ring around all the bowel rather than tightly around the stoma. If he has an end ileostomy, follow Susan's advice.
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I know when I went through chemotherapy and radiation, it hurt like crazy to try and poop normally. I'd about pass out to get one rabbit-sized piece out. Then, five minutes later, everything came out with no issue. 🤷♂️
G-Day MC,
Totally agree with Susan, get a few different seals and have them nice and snug up against the stoma. As for the wafer or bag, whichever you're using, make the hole on that about a millimeter larger; the seal will make up the gap. I never liked paste and had problems when using it.
Regards, IGGIE
Pancaking…. Sorry, I was in a hurry on my response - I have a loop ileostomy and output is typically not thick… sometimes (for me) if output is thick and clothing is tight, the output will build up on top of the stoma… (also known as pancaking). When this happens, it is painful. jb
P.S. The “perfect fit” is very elusive - for me, the barrier ring was key for burning painful stoma (actually surrounding area). Some put the barrier ring directly on the skin area… this did not work for me. Instead, I mold the ring to a perfect fit around the hole in the pouch and make sure the edge of the ring and the edge of the pouch are sealed to each other….
Maybe it's something to do with the chemo? I know from someone else that chemo can literally burn you. My other question is, does this only happen at night after dinner? Or at other times of the day too? If it only happens at night, there must be some variable you are overlooking. Something unique to the nighttime. Or the evening meal. Or the tea. What is in the tea?
Mcberman, I will tell you I truly believe that he feels it burning coming through the stoma. I know what they say about no nerve endings and all that crap. I myself can feel things on my stomach, feel the plastic from the bag when it runs on her head. So I believe you, and I know it's frustrating when you get doctors trying to say otherwise because it's not common. So I wanted to come out and say I believe you. I wish I could explain the burning feeling when he is having output. The only thing I can think of is the chemo. I have seen firsthand weird side effects. My nephew's tears turned red. But have you talked to his oncologist about it? He could be having a reaction or side effects from it.
I agree with nerve issues. I have issues with feeling burning around my stomach but also outside of the flange area, and it's a crazy radiating burning. No leaks. Nothing under the flange. It's neuropathy issues. Does he experience constant itching in places, such as the legs or back, or radiating sharp pain in places besides the stoma…?
Thank you.... no, he doesn't. He mostly starts the burn at night, and I too believe it may be chemo-related.
Thank you... We have spoken to the oncologist, and she has no idea why this is happening. We are waiting for the stoma nurse referral to come through, and we are going to see a gastroenterologist as well. No one knows what to do about this, including the doctor we saw today. She is referring him to get a CAT scan to see if something is underlying.
It can start mid-day, it can start at night as well. The green tea can calm it down as well. We are getting a cat scan, have a referral coming for a home nurse for the stoma, and will see a gastro doctor to try to get to the bottom of it. Thank you for your response.
Thank you. Unfortunately, my husband's stoma does not stick out much, so the barrier rings cause leakage even with a convex bag. The paste started working better, especially when he retracts. As I sit here writing this, he is in excruciating pain again. This is horrible!
Thank you. Unfortunately, my husband's stoma does not stick out much, so the barrier rings cause leakage even with a convex bag. The paste started working better, especially when he retracts. As I sit here writing this, he is in excruciating pain again. This is horrible!
She doesn't think that the chemo could be causing the burning? I see you live in California; do you live in southern or northern California? I ask because I was born and raised in California and was going to suggest going to Loma Linda Hospital. I will give you a heads-up warning: a stoma nurse isn't going to know. They are there just to give advice on bag systems, which honestly you are better off without.
I feel so sorry for him… it's horrible to be in such misery… hoping you will be able to resolve this - good to hear you are going to consult additional sources (Gastro doc).
Keep us posted… hugs to you both… jb
OK - Maybe you need to ask questions of your husband's oncologist ..... The burning of which you speak may be an allergic/severe reaction to one of the chemo drugs.
As an example - I had chemo - a mix of very pernicious drugs - and one of the mix actually caused my fingers to burn - literally felt they were on fire [even when putting my hands into very warm [hot] water brought no relief] - The particular drug within the mix was replaced - and I resulted in no more burning - just a thought. BTW we are all different and chemo treatments are so various - I am not holding up my own to be in any way relevant, specifically, for your husband - so please do not misunderstand how I have used the 'example' by way of a related reference to promote you to ask questions of the oncological team - as although this thought struck a possible chord with me - it may be irrelevant - but worth an 'ask' in the case of your husband .... so perhaps don't dismiss the 'possibility' by specifically asking.
Be insistent with your oncologist - for this can be rectified - and the knocking out of the carcinogenic cells will still happen [so don't be timid out of fear - for the chemo will still function] - but where there is a severe reaction the chemical cocktail may be adjusted - I urge you to check this out without delay - directly through your lead oncologist's secretary - You will find it is not unknown - and there is help for a 'remix'.
Good luck - Do let us know how you get on.
And Mcberman - NEVER SAY NO ONE - for there IS an answer out there - just need to access the appropriate route.
Stay with it.
Never give up.
And don't settle for a brush off -
Insist on a multi-discipline team thought if your concerns are dismissed - although I feel they won't be - Just be direct and specific
Best wishes
~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~
Jayne
I used a barrier ring last night, and he was leaking within 5 hours. With his ileostomy so close to his skin, it seeps right past the barrier. They don't work for him, and I have tried several. Back to paste!!!
Southern Cal....yeah I have found no one has a clue. Getting with a gastroenterologist and going to have imaging done....also an iron study through blood. This community is great, I get more suggestions than from doctors.
Tried another barrier ring last night, and because his stoma is so close to the skin, they don't work.... poo goes right under it every time. Lasted 5 hours. Been down this road for a year, and with the paste, it all stays put.
Yeah, California is notorious for that. They couldn't figure out what was wrong with me for over 15 years in Cali, and I went to over 30 different doctors. It took me moving out of state before I found out what was wrong. The problem is, and it's found everywhere no matter where you live, is getting them to listen and believe you. If it's different or odd and not common, doctors have a tendency to push it under the rug instead of trying to find out the issue. So, the best advice is to keep pushing and don't take no or "I don't know" for an answer. Also, do your own research too. He doesn't deserve, nor does any patient, to just get an "I don't know" and the push-off to someone else for you to go around in a circle. Sad but true. We have to be our own advocates. Have you guys tried Loma Linda?