Help Needed: Managing Severe Stoma Burning After Meals

When I was on chemo, they had me on a full serving of Miralax every morning (they actually prescribed it) because the chemo was causing constipation. I also have an internal kink in my intestines that means I need to keep my output the consistency of toothpaste. I'm now down to 1/4 serving of Miralax, and the output is staying manageable. My stoma is retracted, so my skin took the brunt of the waste coming out, and chemo made my skin even more sensitive. The leakage was a huge problem for me and caused enormous discomfort. It took me a while to figure out that my skin was also reacting to the adhesive on the device, though not as severely - it would start to itch as soon as I put it on! I now am using a convex Convatec bag that is made for my kind of stoma and my kind of belly (yes, I have a big belly), and it is working wonders for me. It is basically one big circle of adhesive, and I cut the hole in the middle to fit me. My skin tolerates this adhesive much better, and if some output does get under the adhesive, it burns, and I replace the device. Because my stomach is also kind of soft, some movements (like twisting) can loosen the adhesive attachment. For example, I discovered that vacuuming might be something I need to be careful about because of the twisting involved, though I'm also not supposed to be lifting much of anything. I hope some of this is helpful to you!

Hi, my name is Kerry. I experience the same burning sensation, and I get cramps and contractions. My stoma, too, is not far from my skin, and I can definitely feel pain and burning. I use a barrier ring and a two-piece bag. I don't suffer leaks very often, and it doesn't seep past my ring, but it still burns. I, too, am waiting for a gastroenterologist appointment. I already had a scan and MRI; no blocking or obstruction, so I'm not sure either what I have going on, but good luck xxx

No, I'm not even sure where Loma Linda is. We are in San Diego.

Hi,

I just read everything everyone said.
Now, although many people say that the stoma has no nerves and it should not hurt when your stoma output comes out, I regularly experience burning sensations that sometimes last for hours, and I am not having chemo or anything. I can't eat solid food, and I have absolutely no idea what causes it. I haven't asked anyone either because I daily have to deal with lots of acute and chronic pain that, for me, seems such a minor thing. But I tend to produce quite a bit of over-granulation, or proud flesh, and I suspect that this is the culprit for myself....
But I certainly feel fairly helpless when it comes to thinking about what your husband is going through.

I did Google it so that I could understand a little better.

I basically found this:

A burning pain inside a stoma when ileostomy output comes out, especially in a patient receiving chemotherapy, could be caused by several factors, most likely related to increased acidity of the stool due to chemo, irritation from a poorly fitting ostomy pouch, or a potential infection around the stoma; it's crucial to consult a healthcare professional to diagnose the exact cause and receive appropriate treatment.

Chemotherapy-induced changes in stool consistency: 
Chemotherapy can significantly alter bowel movements, making them more liquid and acidic, which can irritate the sensitive stoma lining, leading to a burning sensation when output is expelled.

Poorly fitted ostomy pouch: 
If the pouch opening doesn't properly fit the stoma size, it can create pressure points and cause discomfort or burning when output flows through.  

Stoma irritation from leakage: 
Leakage around the pouch can irritate the skin and potentially cause a burning sensation around the stoma. 

Stoma infection: 
In rare cases, a bacterial or fungal infection around the stoma can manifest as burning pain, especially if accompanied by redness, swelling, or discharge.

Granuloma formation: 
Small, benign growths (granulomas) can develop around the stoma and sometimes cause pain when touched or irritated by the output.  

What to do:

Consult your healthcare team: 
This is crucial to determine the cause of the burning sensation and receive appropriate management strategies.  
 
Review your ostomy appliance: 
Ensure your pouch is properly fitted and sized, and consider trying different barrier options if needed.  
 
Dietary adjustments: 
Depending on the cause, your doctor might suggest dietary changes to manage stool consistency and acidity.  
 
Stoma care practices: 
Maintain good hygiene around the stoma, including gentle cleansing and proper drying.  
 
Medication management: 
In some cases, topical medications might be prescribed to soothe the irritated stoma area.  
 

When to seek immediate medical attention: 
Severe pain or discomfort 
Signs of infection like redness, swelling, or pus around the stoma 
Significant changes in stool output or consistency 
Fever or chills  

When my late dad was still undergoing chemotherapy, he had a lot of digestive issues and pain from the chemo treatments. He'd regularly have explosive diarrhea attacks and would wake up in a bed covered in it. And he did not have a stoma bag. There were a lot of foods he could no longer eat, and he could no longer drink alcohol (my father was an alcoholic who refused to admit that he needed help for his drinking, so to me, it sounded like karma gave him the opportunity to stop drinking completely).
His oncologist constantly had to change him to a different chemotherapy treatment as the side effects were so bad that it made his symptoms even worse.

I wish your husband, you, and your family all the best, and I hope and pray that someone can find an answer to why he's getting so much burning and stinging pain.

Greetings from New Zealand,
Gracie

Please keep me posted as I will do with you!

My Ostomy Journey: Kimberly | Hollister

Thank you so much!!! We see the gastro next week, so hopefully we will know more!!

Just read through all this. Best of luck and prayers that your husband will get answers and relief!

I am surprised you haven't heard of Loma Linda; it's one of the best hospitals. It's about an hour and a half from San Diego. I say this as they are very good. They are the only place that would listen and found my nephew's cancer; every other doctor and hospital brushed him off and said, "I don't know." Just an idea for you guys, another option.

That is fantastic! I hope that he or she will be able to figure out what is causing this awful pain.
I will keep your husband and you in my prayers!

Let us all know how it goes - as you can probably tell - a lot of us are very invested because we care.

Good luck. I hope your husband can get some relief soon. I can empathize with what he's going through; I certainly had my moments when I was hospitalized with all my complications, and having love and support from family and friends got me through the worst parts of it. You will too, and you have lots of others wishing you and your husband healing thoughts and prayers.

I feel things coming out of my stoma on a regular basis, not burning but more like a tickle or itchy sensation when it outputs into my bag, plus the burning/itching sensation if the effluent leaks onto my skin around my stoma. I recall having immense burning sensations when they had to give me potassium via IV, which took several hours per dose - it was like hot lava burning into my veins. They had to add ice packs to my arm to help relieve the burning sensation; it was awful.

Thank you for your support. Now today's stinging is DEFINITELY what he ate at an 11 am breakfast. I think he wants to eat what he used to at times but can't! Poor guy!!

I'm actually impressed that he can eat like he used to. When I was on chemo, I couldn't keep anything down that wasn't bland. I lived on rice and gravy and lost about 50 pounds.

Perhaps try a BRAT diet for a couple of days and see if it improves. If so, add back other foods slowly.

How much longer does he have on chemo?

I'm actually impressed that he can eat like he used to. When I was on chemo, I couldn't keep anything down that wasn't bland. I lived on rice and gravy and lost about 50 pounds.

Perhaps try a BRAT diet for a couple of days and see if it improves. If so, add back other foods slowly.

How much longer does he have on chemo?

Your husband is very fortunate to have you as his advocate. A burning sensation through the stoma itself is something I haven't previously heard of.

Because you are certain that this is not simply skin irritation around the stoma, but pain from the stoma itself, then you did the right thing by calling this situation to the attention of the medical profession. Having chemo (and/or radiation) can really wreak havoc with one's senses.

I have had chemo and radiation and have been left with tinnitus (a constant ringing in the ears) and a dry mouth that won't even tolerate mint toothpaste. This burning sensation is way out of proportion to the appearance of my mouth. But just because the tissues look healthy does not mean that they are functioning properly. I now use a children's toothpaste and mouthwash, and it has been over 4 years since I had chemo.

In your husband's case, please do not give up hope for better days ahead. You will find the answers, and you will find a workaround in the meantime.

M

xo

Marjatta… although this response is unrelated to the original post… I have never had radiation, but I do get extreme dry mouth at night that even water does not help… you mentioned toothpaste, and I have suspected that bedtime brushing with many varied toothpastes has caused this issue. What I believe may be my answer is that I use only baking soda to brush at bedtime. It seems to help… we are all victims of various chemicals… making resolutions extremely frustrating and insurmountable… jb

As an oral cancer survivor who underwent surgery, chemo, and radiation back in 2020, I still find that any type of minty or menthol toothpaste burns my gums. I simply can't tolerate it.

Currently, I use PreviDent 5000 PLUS toothpaste, which comes in a fruit-flavored variety that doesn't set my mouth on fire.

I also swear by my Waterpik for rinsing my teeth after meals. In the evening, I also use a non-minty, alcohol-free, kids' mouthwash after brushing.

I know that once I am sleeping on my back and the tension in my jaw is released, my mouth becomes slightly ajar, which further adds to its dryness, especially during the winter months.

Using over-the-counter dry mouth (artificial saliva) lozenges just before bed has helped somewhat, but they don't last forever. I might still wake up in the middle of the night, needing to take a sip of water.

I can understand your use of baking soda as a toothpaste; I used to rinse my mouth with it often. It's a great neutral cleanser that does its job exceptionally well - but as far as a treatment for dry mouth, I'm not sure it's optimal.

Whether the cause of your dry mouth is a lack of humidity in your home or the end result of cancer treatment, it remains very, very frustrating if you can't find a solution that works for YOU. Keep on trying different things (for example, artificial saliva lozenges) until you find the best solution for you.

M

xo