Seeking Relief: Severe Stoma Pain and Care Tips

Hi all,

I want to thank everyone who attempted to help. It was a difficult day and I was alone. I wrote an update below.

***Original post following***

I have an ileostomy, and I have been entirely unsuccessful in getting my output to be thickened on a regular basis. It tends to be watery no matter what I've tried. And... it tends to be acidic. Lately, that's been pronounced, and I've had blood come off the ostomy when I dab at it during my bag changes. Now the pain is severe, and I can't find any products meant to put ON the stoma, only AROUND it. I know that it's a tender thing, I am used to that since I've had this for about 4 months; this is unbearable.

Someone please help me? It takes two days for the wound care/ostomy nurses to call back and I'm in tears. I'm in pain. A lot of pain. I'm REALLY hoping someone here has a solution because my search for ostomy products is not producing anything that is designed to help.

Thanks in advance! ~Chelle

Try eating carbs like pasta, potatoes, and such; it should thicken it up...

 

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I don’t see anything in this advice aside from taking omeprazole for acid reduction (which I have to do anyway, because I had 20% of my stomach and 1/3 of my small intestines removed, among many other things). I’m on chemo for stage four cancer. Please, the problem is NOT the skin around the stoma (I have that fully under control), it’s the stoma itself! It’s bloody and extremely painful. 

Hi Chelle,  I'm having a hard time understanding what exactly is happening here.  For one thing, your stoma has no nerve endings, so the stoma itself shouldn't be hurting.  Secondly, it's extremely easy to cause it to bleed, just a light touch trying to remove something from it, if you are using anything other than your fingers, or water, will cause bleeding, but it also isn't really a cause for concern and will heal quickly.  Your stoma, in the case of an ileostomy, is simply a piece of your small bowel, and it's natural for it to be in contact with output, whether it be acidic or not.  That should not cause bleeding.  If you are in the kind of pain you describe, you should get yourself to the ER and find out why.  Sorry I can't be more helpful, but I'm just not getting why you would be in so much pain.   Good luck and let us know how it works out for you.

Terry

Living with Your Ostomy | Hollister

Chelle, since you say it’s the stoma itself, not the skin around it, and since the stoma has no nerve endings - could it be a hernia behind your stoma? I don’t know if this causes pain but I’m just throwing it out there.

Hi Chelle,

The situation as you describe sounds like something for which you should be seen at the ER, or at minimum, your doctor. I wish I had better advice, but I am not in the medical field and have not experienced what you described.

 

I did a Google search:

If your stoma itself is burning, not the skin surrounding it, this could indicate a few potential issues, most likely related to irritation from the stoma appliance or the type of output you are experiencing, and it's crucial to consult your stoma care nurse immediately to diagnose the cause and find the best solution.

 

Possible reasons for a burning sensation on the stoma itself:

 

Poorly fitting appliance:

If your ostomy pouch doesn't fit properly, it can create friction and irritation on the stoma itself, causing a burning sensation.

 

Stoma prolapse:

If your stoma is protruding too far out, it can be more susceptible to irritation from the pouch.

 

Stoma granuloma:

These small, raised bumps can develop on the stoma and cause discomfort, including burning.

 

Chemical irritation:

Certain medications or foods can change the consistency of your stool, potentially causing irritation to the stoma lining.

 

Infection:

In rare cases, a burning sensation could be a sign of a stoma infection, requiring immediate medical attention.

 

What to do:

 

Contact your stoma care nurse:

They are the best resource to assess your situation and recommend appropriate management strategies.

 

Check your appliance fit:

Ensure your pouch is the correct size and shape and is adhering properly to your skin.

 

Monitor your output:

Observe the consistency and volume of your stoma output, and discuss any changes with your nurse.

 

Gentle cleansing:

Clean the stoma with warm water and mild soap, avoiding harsh chemicals.

 

Consider alternative products:

Your nurse might suggest trying a different type of pouch or barrier depending on your needs.

 

Important points to remember:

 

Do not ignore the burning sensation:

If your stoma is burning, it's important to seek professional advice to prevent further complications.

 

Describe your symptoms clearly:

When talking to your nurse, be specific about the location and nature of the burning sensation.

 

Be proactive in managing your stoma:

Regularly monitor your stoma and skin around it to identify any potential issues early on.

 

Just off the cuff... acid... where does it come from in a normal person?

I'm thinking stomach. Ulcer. A leak... finding its way out through the digestive tract.

You have a complex medical history. No doubt treatment could be affecting your health and recovery. I'm sorry I can't help. Sometimes one has to think outside the box.

 

Good thinking. Often overlooked... so simple too because a stoma is basically a hernia.

Look at your diet and get rid of the acidic foods and drinks. I get the same if I eat or drink acidic things. It will wear on your seal too. Lots of melting and yes, it causes irritation. I was told ileostomy output is already acidic anyhow.

Sometimes I'm bad and do it anyway, but then I regret it.

U gangsta,  bad gurl. 😁

As it turns out, there was some output that had gotten under the paste...and the pain was referring to the top of my stoma so I was not tracing it to the source until this evening when I finally decided to change the bag early.

I'm going to show my biology education now and hope I don't step on any toes or make offense to anyone...The statements here, that there are no nerve endings in the stoma or intestines, are incorrect. There are a prodigious number of nerves in the gut...so many, in fact, that the gut is referred to as the “second brain” by research neurologists. What's actually missing is standard pain receptor nerve endings. For some reason, some people do in fact have intestinal pain. I am one of those. I have even had a few “gut migraines,” something that is usually only seen in children. I have also had a lot of gut pain since my diagnosis with stage 4 goblet cell appendiceal cancer, especially since my extensive surgery ending with the HIPEC procedure. My hospital stay after surgery was so difficult and painful that they called in the palliative care doctors to help develop a pain management plan just so they could get me out of the ICU. The primary pain was in the stomach and small intestines.

I want to thank everyone who attempted to help. It was a difficult day and I was alone.

Glad you found the source and hope your pain diminishes now. You're correct about pain - I have pain occasionally after I eat, sometimes minor, sometimes pretty bad. Doc said my brain processes the gas as painful (?). It started about five years ago. 

And Marshmallows and jelly babies

I am so sorry you're alone dealing with issues!  Sending a hug!