Burning, Stabbing Pain at My Stoma

It's been five weeks since my UC got the better of me and I had to have a permanent ileostomy. Really been doing well but three days ago I started having stabbing, burning pain at the stoma site. Doctor today tells me it could (probably is) nerve related. Means it too is likely permanent? OMG. What now? This pain is significant and comes with no warning. I'm not sure I can handle it. Does anyone know what, if anything, can be done? The doctor didn't seem to know. Said I might have to seek the help of a pain specialist. Help.

Same issue for me. I'm hitting 5 weeks post-surgery, which will be Aug 27, and 4 days ago I was showing improvements. Then my stoma site inside was just stinging and burning and so painful. I kept thinking it was my bag and was changing it out every day, but that didn't relieve it. I had my home visiting nurse look at it and said I looked great on the outside. I almost went to emergency; it was so bad last night, but then the pain calmed down enough to be tolerable.

I see my surgeon's PA tomorrow for my last (3rd recheck) visit and am skeptical they won't have answers for me. Lord, please don't tell me this is going to be an ongoing issue. THE PAIN IS SO BAD.

I'll be sure to check back in here after I see my doctor 8/28 and let you know what she says.

Julsxo88

Oh, how I feel for you as the pain can be unbearable at times, I know. I see my surgeon on Tuesday so we can compare notes and hopefully come to an understanding as to why? Or, maybe one of the docs will have an answer to end the pain? Best of luck, and I will anxiously be waiting to hear!

Well, I'm not much satisfied with my PA's answer to our pain we're having. She seems to think the two sore spots on my skin near the stoma are the reasons for my pain. I go back tomorrow to her office to meet with a stoma nurse to work on healing the open wounds that aren't really that significant but very small. So we'll see what the next week brings.

Looking forward to hearing what news your visit brings.

Julie

Hi! Sure hope things are getting better for you? Hoping the sore spots were/are what is causing your pain? I saw my surgeon today who assures me that whatever (will go into what he believes it is) is causing the pain, time will heal! He (surgeon) says that while it is definitely a rare occurrence, it is most likely nerve related. Technically, I couldn't try to repeat his explanation but he says it is nerves that wake up when they shouldn't. Does your pain come when your stoma is active only? Or at least immediately before it is active? That's when mine came on. If he is correct in what he believes is going on, there are medications to help. I was prescribed Neurontin. Not sure if it works yet as (knock on wood) I haven't had pain bad enough to warrant meds since I filled the RX. How are you doing now? Keep me posted and I will do the same. Not sure if we share the same problem but it sure sounds similar, doesn't it? I do know the pain (when it comes) could easily send one to the ER. I so feel for you and hope things get better. Let's stay in touch, huh?

Good news!!!! When I woke up yesterday, my pain had completely subsided from the stoma area. I went back to the surgeon's office to meet with the stoma nurse and she has me filling the open wound with stoma powder and wants me to change my barrier every 4 days and fill with stoma powder. My exit recheck visit for the surgeon's office was to be this week but thankfully she said she will see me again in 2 weeks.

She also had a technical name for my open wound which she said is caused by my Crohn's disease and is hoping with the Remicade treatments which I started last week will help in healing the open wound. Thankfully, the open wound doesn't hurt.

I have no idea why my pain just simply went away but I think what you're saying regarding nerves waking up makes so much sense. The pain was under my skin around the stoma and this morning (Wednesday) is my second day of no pain there. I'm on pins and needles wondering if it's going to come back. Sure hope not. So today 5 1/2 weeks post-surgery I finally feel like I'm making great progress since all abdomen pain is gone and stoma area pain is gone. I now just have like a heavy muscle/gut feeling inside my abdomen, lol. I have 5-6 more weeks off work and am confident I'll be able to do my 12-hour shifts as a dental assistant by then. I was lucky and was eligible for the Family Medical Leave that allowed me 12 weeks off with security for my health insurance and job position.

It's been so nice to be able to chat with you about this and our situations. I'm so glad you kept in touch and hope that your pain subsides too eventually. I don't have a membership here and wish I could private message you to keep in touch. I can try giving you my email at Yahoo julsxo88 and see if we can chat through email.

I never did catch your name.

Julie

I am having severe pain as well. I am 8 weeks out from surgery and I am experiencing horrible stomach pain. It was all across the top of my stomach and into the stoma area, now it is all localized on my right upper side and back. I thought perhaps I had a blockage but the stoma is putting out material. This is a crampy, severe, come and go pain and in between the area close to the stoma feels very sore and achy. I don't have a fever or vomiting or nausea so I haven't gone to the doctor or ER yet but I am wondering if I should.

Hi @anothernewbie....I'd love to hear how this turned out for you. I'm experiencing the same pain you described 6 weeks out from a revision. I thought it was skin issues, but now I'm convinced it's the nerve pain you mentioned. Thanks!

Hi! Not looking for exact location but..... I live near Oregon, IL. Are you in the state of Oregon? Anyway, on to your comment/question. I believe the pain I was (and I stress WAS) poor pouch placement. Being still new to application of the products, I think it was part of the learning curve? I found I was 'smashing' part of the stoma. It's much 'softer' than I imagined. When I would remove the bag, I would see small portions of the stoma were looking pancakish (new word). Flat, I guess. Very small areas and I think I did not see them in the beginning as I was still healing from surgery/stitches, etc. And of course, I was afraid of myself!! Afraid I might have output while trying to apply a new pouch. I am fairly certain I was my own worst enemy! To this day, if I'm not careful, I do the same thing. Now that I know what it is, I have learned to ignore it and at my first opportunity, I place a new pouch!!! The discomfort would only come when the intestine was actually being busy. Yesterday (in a hurry) changed, left the house, grabbed a Christmas cookie for a HEALTHY breakfast and..... oh no, the pain! Probably not smart to wait until this morning to put on a new one, but no time the rest of yesterday and too late for a supper meal so it waited until this morning! I will say that if left in place (which I do NOT suggest), the pain eases to almost nothing within a couple hours most of the time. If I really had things off center, not so lucky!!!! Hope this helps? Would love to know how things turn out for you.... Good Luck, Happy Holidays

Hi - yes, I'm in Oregon (the state.) Thanks for the reply. My issue is definitely not poor pouch placement. Still trying to figure it out. Doctor gave me some meds for nerve pain, but I don't think that's working. The top of my stoma is flush to the skin and we think the pain is from my skin near the opening being severely irritated from the output. The pain is sharp and sudden and goes away after my output comes out. I've used silver nitrate on the area and that appears to be working.

As for pouch changing...you'll get in a routine. After 27 years, I know in the morning my cup of coffee will cause some output, I wait about a half-hour, take a shower and then I'm good to go for a pouch change with no output. (But I'm a creature of habit. Wake up the same time every day and have my coffee the same time. I just know when my stoma is going to be quiet.)

Good luck! Happy holidays.