Post-Surgical Neuropathic Pain Around Stoma: Seeking Advice

I had my ileostomy in 2016, and everything has gone fine. I have been wondering about something I experience at times, and I have never seen it discussed on this site. Sometimes I feel a burning pain or discomfort around my stoma, in the general area under my skin barrier. This usually occurs the next day after a bag change, sometimes two days after. It is definitely nerve pain, and I wonder if any of you have experienced it? My gastro doc said that sometimes it goes away, sometimes not. Any words of wisdom from any of you? You guys always know how to deal with ostomy issues. Please let me know if you have experienced this!

Thanks,

Little Lulu

I'm so glad you posted this question. I'm about 4 months post-op and occasionally experience the same discomfort. It seems to happen mostly when I first lay down in bed at night, and it feels better if I put a bit of pressure on top of the stoma area with my hand. It isn't happening as often now as it was earlier on in my recovery. I'm not sure what causes it.

I imagine this is caused by damage to the nerves during surgery. Sometimes nerves heal, and sometimes they don't.

I occasionally have this type of pain, but it's very infrequent. However, I take medications to control peripheral neuropathy pain, so it probably also keeps this pain down most of the time. I doubt it's worth taking pills three times per day to control occasional pain like you describe, but you could ask the doctor if you need relief.

I don't think this is the same as yours, but maybe it will help. I sometimes get a "stinging" sensation under my skin just around the stoma. It is because of something I ate, either a little too much roughage food, but usually when I eat some high-acid foods. It's the food that kind of burns, I think because whatever is causing the stinging is so close to the skin. It doesn't happen often to me and usually goes away after a few hours.

After several spinal and oral surgeries, I know from firsthand experience that damaged nerves can continue to heal long after what is commonly thought. During this healing process, because the regenerating nerve tissue is extremely sensitive and doesn't yet behave normally, one can experience intermittent or constant bouts of burning, electric-shock-like sensations, numbness, and pain (sometimes all at once).

These unpleasant sensations are actually a good sign, believe it or not. It means that the nerves are coming alive again and trying to function normally.

Doctors are extremely vague about nerve damage because it is so unpredictable. Plus, sometimes it can take many years to improve. In my case, the extreme nerve damage in my spinal nerves took decades. I thought I would never be able to sit and walk again comfortably, yet now I do miles on my treadmill.

I have also felt that sensation you described around my stoma on occasion, which might be caused by the stimulation to my skin when I change dressings (although I've only had my ileostomy for under two years).

Don't despair because it has been around nine years since your surgery. If the unpleasant sensations are being caused by surgical nerve damage, the ability for your body to continue to regenerate is limitless.

M
xo

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

Hi, I'm 2.5 years post-colostomy surgery. I occasionally get a burning sensation around the stoma when lying down at night after changing the wafer. I figured it was the M9 odor eliminator liquid seeping down to the skin and irritating it. It goes away, so I also just figured the skin got used to the liquid and stopped burning. I try to position myself so the liquid can't travel that far up, but who knows what happens when you fall asleep and roll over.

I had the same issue - nerve pain around my stoma. My doctor gave me a prescription for Tramadol, and it worked. So now and then, when that flares up, I take a Tramadol, and poof, it's gone.

I suffered through this feeling from the beginning of my ileostomy surgery in 2005 until two years ago. I went to a dermatologist, my ostomy nurse several times, searched on the internet, and had injections beside my stoma at a pain clinic, which did not help. I'd decided I'd just have to live with it. But one more time, I went to the same pain clinic to see a different doctor, and he immediately said that it was nerve pain. He prescribed Cymbalta. From the first few pills that I took, I no longer have nerve pain!!!

You might want to ask about Cymbalta. That was prescribed to me for peripheral neuropathy, and it has made a big difference.

I have no idea why it works, but it seems to help with nerve pain.

I still have those sensations under my wafer and have had a colostomy for 26 years. I have no idea why, but I wouldn't worry about it.