Ring around the stoma: my best defense against leaks

In approaching the two-year anniversary of my ostomy surgery, I was looking back at an email I wrote to Doug from the hospital during my final severe UC flare. A few days before writing it, I had received my very first infusion of Remicade. It had worked wonders to get my symptoms under control, but I did not want to take such a potent drug for the rest of my life if it could be avoided. I was strongly leaning towards pursuing surgery once I got out of the hospital and wasn’t so sick and weak (a decision that became much clearer when side effects of the drug became more than I could bear). Even though I was quite confident that I wanted surgery, I was still scared of getting an ostomy due to the horror stories I read on the internet–especially the ones that revolved around leaks. I had just read a worrisome tale on the web when I sent this message:

October 2, 2010

Doug,

This all sounds so complicated and overwhelming. I DON’T want to be infused with drugs the rest of my life but this sounds so hard too. What if I can’t find a way to go climbing or backpacking without creating a leaky poopy mess? Are you confident we will be able to figure this all out together without getting fed up? Maybe it feels different when someone faces surgery in an absolute emergency, but I am choosing this aren’t I? Need some reassurance.

-Heidi

Despite the fears, I knew in my heart that surgery was the route I wanted to take to treat my ulcerative colitis. I met with my surgeon and was then scheduled to meet with my “wound, osotmy and continence nurse” (WOCN). I had lots of questions for her, including several about leaks. She assured me that once I found the products that worked for me, leaks should not be an issue. I liked that answer, but I wasn’t sure I believed it. From all the things I read, leaks just seemed like a given with an ostomy. After my surgery, I stocked my car with spare pants, put waterproof pads on the bed when I slept, and bought a collapsible wash basin to wash potentially poopy clothes on future backpacking trips.

It didn’t take long to experience my first leak. Shortly after I got home from the hospital, wound drainage got under my wafer while I was sleeping and broke down the adhesive. Though not a huge disaster, a little bit of stool did escape. I had been using a strip paste right around the opening, but it did not adhere to my skin well. I decided to set up an appointment with my WOCN to see if she could troubleshoot my problem. After hearing about what happened, she left the room and came back with something that looked like a flat donut made out of Silly Putty. It was called a barrier ring. She showed me how to put it on, gave me a few extras, and told me how to order more. I left the office hoping for the best.

So how long was it until the next leak? It has been almost two years since that appointment and I have yet to get another one. My nurse was absolutely right when she said finding the right products is crucial. For me, a barrier ring was all I needed to become confident that output would not seep out from under my wafer. Whenever people mention leaks, the first thing I ask them is if they have tried a barrier ring.

Barrier rings come in many different brands. The first one I tried was an Adapt Ring by Hollister. I used these for four months and liked them a lot. However, I later tried an Eakin Cohesive Seal by Convatec and found that they were more resistant to erosion from my output and stuck to my skin very well–almost melting onto it. Some people don’t like this because the residue is hard to remove. However, that stickiness is exactly what makes them work so well for me; nothing gets beyond the Eakin. I also tried a ring by Coloplast, but so far, the Eakin Cohesive Seals are my personal favorite. Everyone is different, so it pays to try every brand to see which is the best fit for you.

The other thing I love about barrier rings is how well they protect my skin. Wilbur, my stoma, is an active guy. He wiggles, dances and expands and contracts a lot. To leave room my stoma’s gymnastic routines, I cannot cut my wafer too close to it and need to leave about 1/8 inch of my skin exposed. A barrier ring swells up to fill in this space. At first I was a little shocked by how much the barrier ring turtlenecked around my stoma when it was exposed to moisture, but I soon realized that this is exactly what they are designed to do in order to protect the parastomal skin.

The following photos show my favorite way of attaching a barrier ring. This method minimizes the chances of getting the ring wet which allows it to stick to the skin very well. Along with using a barrier ring, I change my appliance every 3-4 days. Beyond that time frame, my Eakin Cohesive Seals erode and leave my skin exposed.

The barrier ring I use: the Eakin Cohesive Seal.
First, I stretch the hole in the ring to match the size of my stoma. Then I tear one side. (Yes, it appears a manicure might be in order… rock climbing is hard on the fingertips).
After drying off  my skin very well, I hook the ring around my stoma.
I then press the torn edge back together.
Finally, I place the wafer over the barrier ring. You can see the 1/8″ space around my stoma and how the ring fills it in. Within an hour, moisture will cause the ring to swell and turtlneck up the side of the stoma about 1/4″. This keeps output from seeping under my wafer while also protecting my parastomal skin. (See the Skin Sleuthing post to read about the taping method pictured).

Nowadays, the spare pants sit unused in the car (well except for the one time they came to the rescue when I dropped my tail and spilled output all over my trousers), the package of waterproof pads is gathering dust in the closet, and I have not had to do laundry on any backpacking trip. It doesn’t matter whether I am climbing in 95-degree temperatures, snowboarding in the frigid cold or swimming at the pool. I always feel confident that my appliance will not leak during any of my activities when I use a barrier ring. Even in the rare instances when my wafer has peeled up, my barrier ring has always held tight and maintained the seal.

So if you are having leaks and haven’t tried a barrier ring, I highly recommend getting a sample and giving it a go. If the ring doesn’t prevent your leaks, meet with a WOCN and see if they have any other recommendations. Talk with other people with ostomies on the internet or at local ostomy support groups and find out what they suggest. With the right products, leaks with an ostomy shouldn’t be a given; they should be the exception.

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The One Pass Ostomy Draining Device: a great product for the outdoors

Usually it is the big flashy things like climbing ropes, packs or tents that become my most coveted outdoor gear. Lately however, a much simpler and unassuming piece of gear has become one of my favorites.

A couple of months ago UPTT Inc. sent me a One Pass Ostomy Draining Device (OPODD) to try on my adventures. Due to my hip injury, I had to put off testing the device outdoors until a three-day backpacking in Rocky Mountain National Park in June. This, however, did not stop me from trying it indoors. The OPODD is an instrument with two flat rollers that clamps onto your pouch when you want to empty. With one downward motion, the device pushes all pouch contents swiftly out of the tail. Though it took a few tries to get used to the OPODD, once I had the hang of it I found myself reaching for the tool again and again. It is especially useful on those days when my output is thick and difficult to push out of the pouch. One quick swipe of the device and the output is forced out — no matter what its consistency.

I liked the device so much that I was soon using it every time I emptied at home. Though I usually leave the device at home because I seldom carry a purse, the slim design of the OPODD makes it easy to fit in a handbag or tote to be carried anywhere you go.

The OPODD clamps on the pouch. Emptying the contents only takes one smooth downward swipe.

After trying it out, I was convinced that the OPODD was great to use at home. Now it was time to take it into the wilderness with me. Ever mindful of my pack weight, I am very picky about what I choose to bring on backpacking trips. Something has to be highly useful to make the cut. It didn’t take long to realize how happy I was to have the OPODD along on my first backpack adventure of the season. In the middle of cooking dinner on our first night, the sky darkened and big heavy raindrops spilled from the sky. We swiftly donned our rain gear and dashed under the trees with our dinner. Despite being covered by tree branches and Gore Tex, my clothing soaked up the dampness and my teeth began to chatter from the chill. Leave it to my ostomy to decide that this was the best time to produce ample amounts of output. I had to make a trek to the camp privy in a full-on rain storm.

When I got to the backcountry restroom facilities (a pit toilet sitting out in the middle of the woods with no walls or roof), I quickly grabbed my OPODD, clamped it on my pouch, slid it down and had the contents emptied within seconds. Normally it would have been hard to manually work output to the tail-end of my pouch with such cold hands, but maneuvering the device was easy even with the chill-induced clumsiness.

Heading to the privy with my OPODD on a very chilly evening.

That night, the handiness of the OPODD proved itself again. When I do strenuous exercise such as backpacking during the day, my output often slows down or stops almost entirely. That means everything comes out later — often in the middle of the night. Getting up at 2 a.m and walking five minutes away from camp alone is unnerving.  Sitting down to empty my appliance by headlamp while surrounded by miles and miles of pitch black wilderness  spooks me out. It is one of those times when I swear twigs are being stepped on all around me, and I imagine mountain lions behind every boulder. Pulse racing and goosebumps fully engaged, I want to purge the contents of my pouch as fast as possible and get back to the tent. This particular night, I ended up having to endure this experience a couple of times. It was wonderful to be able to clamp the OPODD on my pouch, slide the contents out quickly and return to the comfort of my sleeping bag and the company of a snoring Doug.

My positive experiences that first day made the device completely worth its weight — and that is really the only issue with bringing the OPODD on outdoor trips. For those who try to backpack on the ultra-light side, the OPODD weighs in at 3.6 ounces. Not heavy by any means, but when one is trying to get their pack weight as low as possible, every ounce counts. Personally I feel that the extra weight is a small price to pay for the ease the device adds to emptying my pouch in the wilderness.

The only challenge I noticed with the OPODD was that it couldn’t slide over the Velcro at the end of my Convatec Pouches. This didn’t end up being an issue though. I would just push the output as far as the Velcro with the OPODD and then drain out the rest manually. This actually worked great because it prevents any output from getting on the device.

You can’t see my OPODD, but it is tucked in my pack as I head out on a backpacking  trip in the Mt. Massive Wilderness two weeks after the one in Rocky Mountain National Park. I plan to bring the OPODD on every wilderness excursion in the future.

As I continued to test out the OPODD, I  realized that it was going to become an indispensable piece of outdoor gear. Two weeks after the Rocky Mountain National Park trip, Doug and I were out in the backcountry again on a hike up Mt. Massive which included two nights of camping in the wilderness. This time the challenge was mosquitoes which swarmed around me every time I tried to empty.  One plus of having an ostomy is that you don’t have to expose your bum when emptying like you would when having a normal bm. Still, the skeeters were happy to attack the uncovered skin on my hands instead. The speed at which the OPODD allowed me to empty prevented me from getting many itchy bites.

From cold hands, to scary dark nights and blood-thirsty insects, the OPODD came to the rescue and allowed me to empty quickly and easily. I never plan to hit the trail without it again.

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!

Vanilla Blush ostomy underwear review

A few readers have suggested recently that I write about some of the products I use. I thought this was a great idea. Though everyone is a bit different in what products they prefer for their ostomy, writing posts on this subject would still help introduce people to some of the available products.

Just as I was thinking of doing this, Vanilla Blush, a wonderful ostomy lingerie company based in England, sent me some of their underwear to try out. The underwear they provided were the Grace and Beth styles, and those are the two models I’m reviewing here. Though this review describes their women’s styles, Vanilla Blush makes undergarments for men as well.

Right after receiving the underwear, I tried both styles out for everyday wear. Most of the time, I wear regular low-rise underwear and just let my pouch flop over the top of it because this is what I find to be comfy. If I am going to wear ostomy underwear, it must be as comfortable as my regular panties. After trying out the Vanilla Blush undergarments, I am so impressed! These undergarments feel great and are not too tight or restrictive. The fitting chart on the website is accurate, and the size I requested based on my measurements fit perfectly. One of the things I love most about these underwear is that they are not unnecessarily high-waisted.  They are exactly the right height to cover my pouch from bottom to top with no extra fabric. I love how I can see my belly button with the Vanilla Blush underwear.

The "Beth" underwear conceals my pouch from top-to-bottom without being too high-waisted. I love the sparkly fabric too!

The white “Grace” style is made out of a 93% cotton and 7% spandex fabric that feels very soft and is a perfect weight. The black “Beth” style is made out of a polyester/elastane fabric that is stretchy and comfortable. It also has some pretty sparkly threads on the front. Both styles have an inner pocket to hold a pouch. I happen to not use the pockets in any of my ostomy underwear or wraps. Due to the lower placement of my stoma, pockets tend to cause my pouch to bunch up more than if I just let my pouch hang freely in the underwear. Still, I don’t mind that the pocket is there. By not using it, I actually have a nice double layer of fabric over my pouch which covers it nicely. Whether you use the pocket or not, the underwear fit beautifully.

The Vanilla Blush underwear also holds my pouch in place and conceals it well, even under my tightest pair of low-rise jeans. The part of the underwear that sticks out above the waist band of my jeans is very flattering. If my shirt rode up as I went about my day, and the top of the undies were inadvertently exposed, I wouldn’t care. The bow and trim make them super cute!

The underwear work great under my low-rise jeans. They look so nice it doesn't matter if they stick out above the waistband.
The Vanilla Blush underwear hold my pouch against my body so that it is invisible under my most form-fitting jeans and T-shirts.

I knew I loved these underwear for day-to-day wear, but how would they perform during an outdoor adventure? I decided to give them a try during a day of rock climbing at the North Table Mountain climbing area in my home town.

As I hiked up the trail to the crag, the underwear didn’t ride up or bind and felt pleasant to wear.  The temperatures were really cooking on the south-facing cliffs, but the underwear was cool and breathed well.

Heading up the trail to the rock climbing area, the underwear are not restrictive and are cool in the hot temperatures.

When I do any strenuous activity, such as climbing, I always wear a six-inch-wide Nu Hope hernia prevention belt. Over this, I usually wear a pair of ostomy underwear to hold it in place. If I don’t, the hernia belt tends to ride up to the narrow part of my waist and does not provide the support I need. One thing I was a bit concerned about was whether these underwear would work with my hernia prevention belt since they have a lower rise than the ones I usually wear. Any ostomy briefs I wear for my outdoor activities must fit over the hernia belt.

When I put the Vanilla Blush underwear on, an inch of the belt stuck out at the top. However, this was not a problem. They still held my hernia belt in place wonderfully through the whole afternoon of climbing. It never shifted once, even when doing high steps and stems on the rock and hanging in my harness as I was being lowered on the rope.

Even though my six-inch-wide hernia prevention belt sticks out above the undies, they still held it in place well.
The underwear were comfortable while climbing...
...and lowering in my harness.

As late afternoon approached, I realized I had one more workout to complete. I bid my climbing partners farewell and drove over to the gym to do the core and upper body weight routine that was on my schedule for the day. I have been really disciplined in doing the workouts recommended by my personal trainer and only miss them if absolutely necessary. I knew I could still squeeze them in before the facility closed. As I did planks, stability ball work and lifted weights, the Vanilla Blush underwear continued to feel great.

Finally, it was time to head home. When I got there, I took off my hernia prevention belt and climbing pants and threw my jeans back on. From trail to cliff, and from gym to jeans, the Vanilla Blush underwear performed just as I had hoped they would.