UOAA Discussion Board

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

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.

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.

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.