burning , stinging pain near stoma and need relief. Tried all the meds for nerve pain, radio frequency ablation, nerve blocks cortisone shots, cod oil, and spinal cord stimulator to no avail. Cancer urologist said stoma good and maybe from inguinal hernia repair, and surgeon said did not know what could cause pain. Cannot even find some one for second opinion. Thanx for any input
Hi.
Wow.. This is wired. I’m in the same boat. It’s been a long complicated journey that’s got me here. It goes. ulcerative colitis.. early bowel cancer.. heria.. heria repair with biological mesh.. another heria.. twisted intestine.. emergency op to move stoma to my left with bio mesh on right side (old site) ... pain on left starts ... mesh infection (on right) .. op to remove infected mesh ... pains go on.. no explanation.. speciation mayb adhesions but strange as majority of work on my right... if I have large portions the pains are worse and I find that if I take a laxative every day it helps (I think).. taking 2 x 150mg of pregabalin a day ... but I have no idea it makes a difference as it hurts like hell ... feels tender... burning... stinging... oh yes.. had a local pain relief injection on left a year ago (since pain started) and for 3 hours ... pain free... It was great... !!
Jon, Sort of weird both having similar stories, and have you heard from any one else. The only relief I get is when pouch is off, and use vinegar and water, calamine lotion, and my wife s idea of pulverizing extra strength exceeding to make a paste and apply to the skin, and just leave it as long as possible.tried cbd oil and no luck, and medical marijuana, wife is against. Hopefully, we may get some ideas from others here. Good to hear from you.
Earlier reply Bing moderated? And was 2 hours ago
Hello again..
My symptoms have changed over the years and too be honest I haven’t tried to find anyone else with similar symptoms recently. So are you pains due to surface issues .. internal .. or both?
Hey and good am, my pain feel looks it is on and in the skin. I have been changing pouches about every day, with the pain, and at this rate, will run out of pouches. This has really put a crimp on me, as I hate to go anyplace due to the pain. Sometimes I feel like it's hopeless , and other times I don't even know, and can't give in.
Does your pouch leak onto the skin ?
Is the skin around your stoma pretty flat,..
do you use a protective wipe..?
Usually the pouch doesn't leak and I use either cavillon or safe and simple protective wipes. Also use a wafer. My stoma has always been recessed, so I use Marlin convex pouch, and used coloplast convex in the beginning. My stoma is near my belly button, so I have to make sure the edge of the pouch adheres by the navel. I use brava wing strips for added protection to keep it adhered. The other side, a small dip in the skin by the stoma , and it's there I have the pain and about 1/2 inch from the end of the pouch. Any belt attaching to the pouch, adds pressure and more pain, so can wear one. Sometimes, I can wear the nu soft belt for short periods. Driving, sitting, and laying flat on my back , makes it much worse, and I sleep on my side with an ice bag for some relief. Wound care nurses haven't helped much. Tamale care and l
wanted to say take care and looks a few more days of heat and humidity.
So just to clarify.. It feels like the pain is in the skin .. (just under the surface) and the skin isn’t red.. sore or broken?
How long since the last relevant op?
The skin is not red or broken in any way. The 1area right next to my stoma , pain feels like just below the skin and the other outside of the adhesive of the pouch it starts with tingling and gets to the point that the hair on my skin and surface of my skin hurts when just touching the hairs or skin.
Last procedure was right inguinal lymph node removal 2 1/2 years ago, before that right inguinal hernia repair 3 1/2 years and think used some sort of mesh. Then, feb 2014, had cystectomy. I don't remember when the pain started, I thought soon after cystectomy, and my wife thinks after hernia repair
Hi,
Much of the kit you use is similar to mine. I use paste but it’s no good for daily changes as for 24 hours it’s like chewing gum.
For me sitting is the worse. Getting up after sitting is a lottery. It sometimes feels like someone if ungluing my insides. I’m pretty sure I’ve got at least 3 maybe 3 causes of pain. One is probably adhesions. It’s the others that I can’t work out. The pain to the left of my stoma feels different. Did you have titanium clips? .. Also .. did you have a resection? ..,I’ve always thought that my titanium clips are not right. (I had 150 inc a resection) ..
Sitting, driving, and laying on my back is the worst. I live by the jersey shore, and the cool , ocean water calms the burning pain a lot. Don't think I had titanium clips, and back in 2013 resection of bladder for ca. Hernia the following year was repair with mesh, and following year had the lymph node resection. Looking on the web last nite, came across dr. Mark zolland in much. Seems like he has a lot of experience with repairing prior hernia repairs. Not anxious for another surgery , but something has to be done. Have to think about it more.
I like in the UK .. Definately worse when hotter... I’d travel anywhere to get fixed but I’ve lost some of my faith in surgeons....
I’d need convincing!!!!
I am a retired podiatrist, so I realize that things can go wrong. Presently, all the docs say probable nerve pain, but no way to tell for sure. The cancer doc I saw back in May, seemed a bit annoyed or dismissive, and got the impression, not my fault..Have been to 3 pain mgmt docs, 2 neurologists, 1 internist, wound care nurses, and a general surgeon and no answers. If I could take something for pain, but there is opioid crisis here, so they are afraid to prescribe it, and my wife says no to medical marijuana. And, the cancer doc had been referred to us by wife s cousin, who is on staff at the same hospital. Seems like when things go wrong, nobody wants to get involved. Have gotten very cynical of the medical profession.
So now, I have been having another problem, leaking, which just started about 1 1/2 months ago. I think it may be the stoma has retracted in more and/or weight gain, as with the pain, don't walk much at all. Between the pain and leaking, wife not really happy. And can t blame her too much. What works the best for your pain.?
I find that if I eat less then the pain is less. Also less red meat helps. I think my portion sizes have halved. I’m down to 12stone. Lost about 1.5 stone. My pains are a bit better being lighter.