Have any other fellow Ostomates experienced this pain?
1. Have had Crohn's Disease for 45 years since high school.
2. Had a resection 30 years ago where they removed all my large intestine except for a foot.
3. Finally, approx 7 years ago after no longer able to take the pain (in the rectal area where all my pain always was) I had a permanent Ileostomy.
4. Six months after my surgery, I began having skin pain, approx 1/4" immediately around my stoma (like a sharp, 'open wound', redness, kind of pain).
5. I put up with the pain for a number of years, but it got so bad, and after seeing my surgeon, other doctors, Stoma nurses, and even Pain Mgt doctor (Hydro's, Oxy's, and Fentanyl patch didn't help), I went to a research hospital (IU in Indianapolis), and an angel from God suggested I try a different wafer (skin barrier) which, instead of having a more rigid edge (that a typical wafer has) that presses against the stoma, was moldable with a much softer 'turtle-neck' effect (Convatec Durahesive).
6. After 1 week with the moldable barrier the pain was gone--I was virtually pain-free for 3-4 years!!!!! Life was good.
7. Fast-forward to Feb of this year--the same pain is back---nothing has changed, I'm using the exact same products, etc.
8. I've found one 'common denominator' that makes the pain worse and that's if I eat a lot of fresh fruit, but the pain still occurs, more often than not, mostly every day-again that sharp, open-wound kind of pain.
Can anyone offer any advise, or have similar situation?
Appreciate it--thanks.
Ostoman
Pain immediately around stoma
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Re: Pain immediately around stoma
Have you tried 3M’s Cavilon barrier spray? Without that im in your shoes in about 1 day. With two thin Cavilon coats i go a week on a wafer.
Re: Pain immediately around stoma
Hi Ostoman
Convatec has wafers with two kinds of adhesive: Durahesive and Stomahesive. I am using the Stomahesive with good results. You can call Convatec and they will go over the types of wafers/pouches with you. I am using a two piece system, the wafer is #416719. Our skin can develop an allergy even after several years of using the same system. This causes PAIN. I used Hollister for six years, now I must use Convatec Stomahesive. Good luck.
Convatec has wafers with two kinds of adhesive: Durahesive and Stomahesive. I am using the Stomahesive with good results. You can call Convatec and they will go over the types of wafers/pouches with you. I am using a two piece system, the wafer is #416719. Our skin can develop an allergy even after several years of using the same system. This causes PAIN. I used Hollister for six years, now I must use Convatec Stomahesive. Good luck.
Olive
Crohn's. 2 stomas. Permanent ileostomy, mucous fistula
"I yam what I yam." Popeye
Crohn's. 2 stomas. Permanent ileostomy, mucous fistula
"I yam what I yam." Popeye
Re: Pain immediately around stoma
I get that kind of stabbing pain on the rare occasion when I don't drink enough. Next time it happens, try sipping an electrolyte drink. Can't hurt and could really help. For me, the terrible pain vanishes surprisingly quickly.
2nd time Ileo '08, IBD since '93, still lovin' life
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