Skin sleuthing

No more itchy-scratchy. I recently healed a rash under my wafer that had been plaguing me for about four months. In the process, I discovered that figuring out the cause and solution to ostomy skin problems can take some serious detective work. Solving my stubborn case involved some help from my stoma nurse, medication, a wacky new wafer method, and a touch of inspiration from a childhood memory.

I grew up with two brothers, and sometimes we would get into spats. When these unfortunate events happened, I could handle hair pulling, pinching, being kicked and even getting spit at. However, there was one method of sibling warfare that I absolutely dreaded: the snake bite. This involved having my forearm gripped with two hands while the skin was twisted in opposite directions at the same time until a painful sting ensued. A well-executed snake bite would leave my arm red and throbbing.

On several occasions since getting my ostomy surgery, I was certain that my wafers were giving me snake bites.

When I was healing up from surgery and researching ostomy appliances and sports, I read that some people have trouble with their wafers sticking in warm weather due to sweating. As I got back into outdoor activities, I fully expected that this would be the main wafer issue I would have to deal with when doing active sports. However, this ended up not being the case at all; my wafers adhered well through any activity. Instead, I was faced with an entirely different problem related to my ostomy appliance and strenuous sports.

When I was hanging out at home in the months after surgery, I had absolutely no issues with my wafers causing any skin issues. However, once I healed up I started biking and hiking, it seemed like my wafer would get pulled in one direction as I moved, while the skin underneath wanted to move in another. The Coloplast wafers I wore for the initial months after surgery were made out of a fairly non-pliable plastic, and would leave a circle of painful blisters on my skin right around the outer edge of  the wafer from this tension. I decided to experiment with a different brand.

I tried Hollister and then Convatec and found that the Convatec ones seemed to move the best with my body contours and movements. I had no further skin issues with my wafers for the first 10 months when I was mainly hiking, snowboarding and biking. Then in January, I started to do activities with more extreme movements, like yoga and climbing, on a weekly basis. All of a sudden, my wafers felt like they were giving me snake bites again–especially near my hip bone.

I have a narrow body, but my stoma measures 1.5 inches at its widest spot. This forces me to use larger sized wafers. When I put a wafer on, it extends past my midline incision scar on one side, and over my hip bone on the other. As I would do high steps while climbing, and twists and bends in yoga, my wafer would pull at my skin at the top of my belly and also near my hip bone. At first I tried protecting my skin with various brands of skin prep, but none made any difference. I tried to stand up while putting on my wafers and made sure I wasn’t pulling the tape part too tight while placing it on my skin. Neither of these things helped. As I was experimenting, I soon realized I had a bigger problem: a very itchy rash began to develop under the tape in the location where my skin had been pulled. Over a matter of weeks, the rash spread to other areas under the hip-bone-side of my wafer.

It was time to seek some help from my stoma nurse. After hearing about my symptoms, she felt it could be a yeast infection and recommended anti-fungal powder. I tried this for three weeks with no improvement.

In the meantime, I started to wonder if perhaps I had developed an allergic reaction to the tape part of my wafers. I really hoped this wasn’t the case. I didn’t want to have to change my ostomy system. I loved the way my wafers stuck so well through sports and swimming, and all my hernia belts and pouch covers were designed to work with my system. I thought an allergy was unlikely though, since there was no rash under the entire left-hand side of the wafer. If I had an allergy to the tape, I assumed it would show up under the entire tape part. Just to rule it out though,  I decided to try Convatec’s tapeless wafers for a couple of weeks. My skin did not clear up and continued to get worse.

It was around this time that I recalled another memory. Several years ago, long before my ostomy surgery, I had a nasty, itchy rash that started on my knee and soon spread to my arms and legs. I went to a dermatologist and was diagnosed with bacterial folliculitis. The doctor felt that I had probably nicked my leg shaving and had some hair follicles get infected which eventually spread to follicles on other areas of my body. It took a while, but it finally cleared up with antibiotics.

The rash I was dealing with under my wafer looked exactly like that rash. To top it off, I now had a little area of rash on my stomach far away from my wafer. My stoma nurse recommended that I talk to my doctor to get a prescription for antibiotics. My doctor agreed that it looked like folliculitis, and I began to take Keflex. Within a week of starting the antibiotics, the rash that I had been dealing with for several months completely disappeared. Finally the mystery had been solved! I deduced that the pulling of my skin under the tape had damaged it and allowed a bacterial infection to set in. Without the Keflex, I am positive my rash would not have gone away.

The problem was, I soon felt the familiar sting of my skin being pulled under the tape when I would bend. I knew I had to change the way I was doing things, or my skin would be damaged again and the whole cycle would start over.

To attempt to solve the problem, I tried something a bit unusual. I continued to use my regular Convatec wafers, but cut off all the tape on the right half. The inner circle of Durahesive material seemed to stick just fine without the tape part, but I reinforced it with little strips of 3M Medipore tape in a few strategic spots for added confidence. My skin has always liked Medipore tape, and it is very stretchy so the strips did not place tension on my skin. When I was done, my new tape and wafer method looked a bit like the sun with rays of tape sticking out.  I nicknamed it the “sunburst method.” I have now been using this method for two months and it has been working great. My skin is super happy with no more tape snake-bites and no more rash! It has held on perfectly through rock climbing, running a 10k, swimming, and even a recent three-day backpacking trip in warm weather.

This photo shows my new “sunburst method” for attaching my wafer. I trim the manufacturer’s tape away on the hip bone side of my wafer and replace it with strips of 3M Medipore tape. You can see the shine mark where my hip bone is. This new taping system completely avoids this area and my skin is no longer irritated under tape when I climb, do yoga or take part in other sports with a lot of stretching and bending movements.
Two months after starting this new taping method and my skin is still healed and happy. Unfortunately, I never took a photo of the rash. Picture hundreds of tiny red raised bumps under where the wafer tape would have been on the left side and you will get the idea.

From eating to product selection to skin care–when you first get an ostomy, everyone tells you that your situation is going to be unique and that you will have to experiment to figure out what works for you. I am only now beginning to realize how unbelievably true this. I wouldn’t be surprised if my sunburst-wafer method was a disaster for someone else even though it worked for me. The point is, make sure to try different things. Don’t settle for supplies and methods that aren’t working well for your individual needs. Keep sleuthing and find the solutions that make living with your one-of-a-kind body and ostomy comfortable.

When I was a kid I didn’t like snake bites, but I did like Nancy Drew books. Nancy would just finish solving some tough case when a new and interesting one would come her way. I have felt a bit like her lately. Now that I have solved the mystery of the itchy rash, what case is next? Last weekend while changing my appliance on the backpacking trip I just mentioned, I noticed a 1/4″ white ulcer-like depression on the side of my stoma about 1/2″ from its base. It looks just like a canker sore. My surgeon and stoma nurse both think it is trauma related, so I am experimenting with cutting my wafer differently to see if it helps. Hmmm–s0 far I haven’t noticed much of a change, but maybe if I try…..

Let the sleuthing fun begin!