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 will be Aug 27 and 4 days ago I was showing improvements and 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 everyday 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 skepticale 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.
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 arn'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.
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 definately a rare occurance, it is most likely nerve related. Tecnically, I couldn't try to repeat his explaination 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 surgeons 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 surgeons 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 crohns disease and is hoping with the remicaid 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 your 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 51/2 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 situataions. 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.
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.