Hello
I have incredible pain around stomacon skin. They determined it's nerve pain. The skin is hard and raised and inflamed. Nothing works for any relief. I've tried every bag, cream etc even had two nerve blocks. I'm doing scar massage as they did say it's dermal scaring . Last resort is a steroid shot next week. Has anyone had anything like this?
No, never even heard of anything like that. Sounds terrible. So it's not the stoma itself, it's the adjacent skin on your abdomen that's not happy? Normally for dermal scaring they use dermal fillers.........but I don't think that would apply in your case. I'm thinking that using an astringent, like aluminum acetate, would help........but I wouldn't try it until you cleared it with your dermatologist. Have you considered topical predisone? Meaning tablets ground to powder with a mortar and pestle and then applied as a paste when mixed with water? Seems that would be less systemic than injections. Sorry to not be of much help........but do keep us in the loop as they treat you..........this is a new one on me.
;O)
bob
I had something like this happen to me, not as bad as you described but a wound care nurse recommended Duo Derm and it has helped calm the inflammation and the skin isnt as hard or raised. I buy the 4x4 patches on amanzon and cut them up to fit the area that needs it.
Yup tried that too.the only one that I can use is simple safe hydrocolid which helps a bit if skin reall y hurts. I do have some hyperplasia as well but that doesn't hurt. All the detmalogist keep trying topical which don't work plus I can't keep the pouch on. It's very frustrating!
I'll let you know. I have tried the pred powder but no help. I use vinegar or hydrogen peroxide when skin hurts but the pain is internal. Your right the scar fillers don't work either. I don't have any areas that are irregular either. The reason they believe it's nerve pain is due to the extreme sensitivity. Even when bag is off the burning and sharp pains are bad. You can't touch the area at all without wanting to jump out of my skin. The surgeon doesn't want to go in and see what's up as she's concerned about making it worse. Same with regards to moving it. The stoma is perfect . The whole area under Bag is hard and purple. UCSF is really good but the shots are the last thing then I don't know. I know I can't live like this for 20 plus more years. So I'll need to keep after them. The non adhesive bags are a thought but the ring hurts to much.
thanks for your thoughts!
Did the nerve blocks help for any length of time (even hours)? If it is nerve pain and local anesthesia helped, try lidocaine jelly( not sure if wafers will stick). If it is nerve pain ask about Gabapentin or Lyrica(drugs that works on nerve pain). ideally they would find out why you are having pain but these drugs may help the pain you are having now. Good luck
I have had nerve pain for years ( not from my stoma) but from a rectal abscess. The pain was excruciating. The only thing that helped for me was a medication it took about a month to work but haven't had it since. I have heard a lot of bad things about it though but the pain was unbearable. I now take lyrica but on small doses and it's a nerve pain medication. You could also ask for Botox injections …my surgeon tried that first abscess it works for most nerve pain. I hope you find some relief soon
Hi nut,
Ok, thanks for the additional info. I've got a couple ideas what might be going on, but I don't want to just throw shit out there without better understanding your condition. Could you send me a pic of what your skin looks like? You don't have to post it here, you can send it via personal message or I can give you my email address. Seeing it makes it much easier to identify. Is the area under the bag actually purple....or is it black? Makes a big difference. Also, what's the history of this......meaning did it start out in one small area, or did the whole area get red, then redder and then purple? What's the underlying condition that caused the ostomy.......if you already mentioned it I can go back and re-read. We need to get you straight.......and fast!
;O)
The block couldn't reach the area according to doc. So it really didn't help. I tried lyrica and gabapentine both made me so tired I couldn't function even lowest dose. I do use the lidocaine and it helps at night but I have use a hydrocolid patch to cover so bag stays on. The docs at this point think probably it's inflammation causing nerve stuff. Hoping the shots work. Thanks for suggestions!
I had bladder cancer. The issues started 2 years after surgery and have been going on for 2.5 years now. I've had allergy testing and that's not it. It's purple all around under where the bag goes. Again no itching etc just sharp shooting burning pain. No matter what I use it hurts especially when sitting or bending. If I time it right in the morning I can get a walk in but if any sweat is under it I have to take it off . The surface skin hurts but it feels like it's coming from inside.the only relief is laying down . The entire area isn't painful only under the skin that's hard from scar tissue. They think it could be adhesions and/ or nerve entrapment. Surgery is one method of fixing but due to the stoma etc they don't want to nor can they say it would help. If nothing works soon I'm going to need to find a really good surgeon who could move it. But again there's no guarantee it will work. Super aggravating and depressing to think it may not get easier!
Hi nut.........thanks for the info. I did some digging and made a few calls........and came up pretty empty. I remember doing this once before when my Mom had permanent nerve damage to her face from Shingles. Seems nothing much has changed since then........except for one possible solution that made me raise an eyebrow. Years ago I would have laughed and forgot about it........but I'm going to throw it at you and you can do with it what you want.
Acupuncture
Yeah, I know.....seems like a bad joke. But I've come to respect such things rather than dismiss without actually trying them first. I'm reading that acupuncture is a very valid way to reduce skin nerve damage and pain. Obviously never tried it myself......but I have seen them do some pretty amazing things with acupuncture. Might be worth a discussion with some acupuncturist that knows their stuff, and there should be a lot of them out your way. I mean what have you got to lose?
Sorry I don't have more answers for you.
;O(
bob
