Desperate for relief from severe nerve pain around stoma

Hello.

I have incredible pain around stomach 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 scarring. 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 scarring 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 prednisone? 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 DuoDerm and it has helped calm the inflammation. The skin isn't as hard or raised. I buy the 4x4 patches on Amazon 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 Hydrocolloid, which helps a bit if the skin really hurts. I do have some hyperplasia as well, but that doesn't hurt. All the dermatologists keep trying topical treatments, 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. You're 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 the 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 the 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 too much.
Thanks for your thoughts!

How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister

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 work 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 I 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 in 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 of ideas what might be going on, but I don't want to just throw stuff 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 the doc. So it really didn't help. I tried Lyrica and Gabapentin, both made me so tired I couldn't function even at the lowest dose. I do use lidocaine and it helps at night, but I have to use a hydrocolloid patch to cover so the bag stays on. The docs at this point think probably it's inflammation causing nerve stuff. Hoping the shots work. Thanks for the 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

Please try to pay attention to your diet and the foods you eat. See a professional dietitian. I have this problem in the process.