Ostomy care for sensitive skin

My skin is sensitive to many adhesives, solvents, and fragrances. So it's been a challenge to keep my skin happy now that I have an ostomy again. I had lots of problems with itchy rashes and irritation with my previous ostomies and during the first couple months with this one, but now I've come up with a routine that keeps my skin happy.

I change my wafer every 6 to 8 days. It hurts to pull it off, so I soften the adhesive my smearing petroleum jelly on the fabric mesh area an hour before I shower. I let it soften up more with warm water while I do my usual showering. Then I slowly peel it from the edges and help it separate from my skin and body hairs by wiping the interface with a soft facial towelette. I typically use sensitive-skin Dove or Oil of Olay towelettes, the kind that are packaged dry and get sudsy with water.


After the wafer is off I let any residues soften up with a couple minutes of warm water over the area. I don't let the water get too hot, though, because I figure that the exposed colon is more delicate than skin. So I try to stay close to body temperature. After the previously covered area has had a good rinse, I get a fresh washcloth soapy with unscented Dove and gently rub the skin to get off all the adhesive and petroleum jelly. I also run the edge of the washcloth along the base of the stoma to remove any residue that built up there.

After a couple of good washes and rinses, I stay in the shower a few minutes longer to let the skin relax and breathe. Then I dry off and dab the skin in the area with another clean, dry washcloth. My new stoma is a couple inches long and hangs down when I'm standing, so I move to my bed where it's in a better position to apply the new wafer.

I like to let the skin air dry for at least fifteen minutes so it's not too pink and raw when I put on the new wafer. I have the wafer opening already cut and then I apply the Adapt paste around the inner edge while I wait. I apply enough paste to cover the few millimeters of exposed skin between the stoma and the semi-rigid wafer. The paste protects the skin from the colostomy output, but the solvents in the paste can also irritate my skin. So I let the paste air out for ten minutes before putting the wafer on.

When the skin is dry and the wafer is ready, I carefully position it to center the stoma in the opening. If the stoma hits against the edges then it'll be uncomfortable as it changes size when stool moves through. And if the gap is too big then skin will be left exposed. I try to keep my belly at a natural position as I stick on the fabric part of the wafer. If I suck in my gut too much then it'll pull when my belly gets full. And if I stick it out too far then the fabric will wrinkle and come loose when the skin contracts.

This routine has been keeping my skin happy and the wafer secure for at least a week at a time. I can usually feel the edges of the fabric and the inner semi-rigid parts loosen up when it gets close to the next changing time. It would probably stay on for longer, but I don't think it's a good idea to leave the area covered and uninspected for much more than a week.

There are various protective skin gels and powders that the ostomy suppliers sell, but every one I've tried has given me a bad and worsening rash. So I find that the best method is to be slow, gentle, and clean. The one exception is when I have a surgical wound or ulcer under the wafer. Then I cover it with Aquacel Ag, a soft fabric that acts like an artificial scab and lets the skin heal without getting further damaged by the wafer. At those times I changed the wafer more often, every 4 to 5 days, to prevent the Aquacel from stewing too long and to check on the healing.

Surgery

I had surgery to remove the tumor from my colon on August 17, 2004. The surgeon said it was likely that the remainder of my colon could be reattached and function normally, but there was a chance that instead I would have to wear a bag to replace the function of my rectum. Eww, I thought, but I felt confident that the surgery would go smoothly and I wouldn't have such a fate.

I was scheduled to go into the operating room in the morning, but due to delays with other patients I didn't get out of the waiting area until late afternoon. I was feeling pretty weak since I hadn't eaten solid foods in two days and had nothing at all since midnight. It was so late that after I was taken to the preparation area there were no more nurses or attendants around. Eventually my surgeon came looking for me and had me moved to the operating room. Things were not going smoothly.

The next thing I remember was waking with terrible pain in my abdomen. I heard my mom talking to the nurses and pressing them to give me more pain medication. Eventually they gave enough to take the edge off -- apparently many common pain killers don't work well on me and I need unusually high doses to get relief. The anesthesiologist had also managed to knock the crown off my front tooth while removing the breathing tube. Again, things were not going smoothly.

Once I was more comfortable my mom asked if she could go back to the hotel since she was very tired. It was around 10pm by now, but it seemed strange that she wouldn't stick around for a little while. I suspected that the news from the surgery was bad and she was having a hard time hiding her reaction from me.

I don't remember whether I got the news that night or in the morning. The surgeon removed the primary tumor but it had already ruptured the intestinal wall and spread dozens of quarter-sized tumors throughout my abdomen. He said tumors like that were beyond his power to remove. My only hopes were chemotherapy and a radical new surgery being tried at the National Institutes of Health.

He had also been unable to reattach the good part of my colon back to my rectum. So the end of my colon was now routed out near my belly button and emptying into a plastic bag. I was not ready to deal with that. The hospital sent an ostomy nurse to teach me how to care for the site but I couldn't watch. Fortunately my mom was there and learned enough to guide me after I was sent home.

My recovery was painful but rapid. Dealing with the ostomy was icky, tricky, and embarrassing. But two weeks later I was able to tour around DC and get drinks at the Sculpture Garden with my sister. Then I flew to Michigan for a couple more weeks of recovery before starting chemotherapy.