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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A run to Horsetooth Rock: a day of ups and downs (feat. new video)

When I got out of the car and looked at the trail slicing across the hillside, I was intimidated. It started out steep right from the start, and I knew it wouldn’t ease up until it reached the summit of Horsetooth Rock. I didn’t have much faith in my ability to do a run of this magnitude since my longest run to date after my ileostomy operation had only been around 3 miles on flat terrain. This trip would be 5 miles with over 1,400 feet of elevation gain. Normally, I would have built up to a run like this, but we had decided to do this on the spur of the moment. In fact, the trip was so spontaneous that I didn’t even have any of my usual trail running gear such as my CamelBak water pack. Fortunately, Doug’s parents had a water-carrying waist pack to loan us which Doug carried.

Running, even on flat terrain, had been one of the harder fitness activities for me to get back into. Since starting up again last summer, I always became fatigued and seemed to be progressing at a turtle’s pace. As I started to run up the hill, I fully expected to get extremely tired. I don’t know if it was the gorgeous scenery or the fact that I was elated to be doing my first real trail run since surgery, but I  felt amazing as I ascended the trail and didn’t want to stop. I bounded over roots, up rock stairs and just kept going. I did get some rests because the trail was very icy in spots, which necessitated some walking to negotiate the terrain. However, had it been dry, I think I would have been able to run almost non-stop. I felt that good.



The last 200 feet required scrambling up rock, and then we were on the gorgeous summit. I had made it! The descent was tricky due to all the ice, and I ended up scooting down on my butt in a few sections that were really dicey—or on my belly like an otter just for fun. I was so happy when I got back to the car. I could not believe what I had just accomplished.

My feeling of elation was short-lived however. When I got home, I logged into my Facebook account to see if anyone had commented on a post I had made about the run right before I left. I also checked my friend Charis’s page to see what she was up to. She had had permanent ileostomy surgery in September, and had just made a list of New Year’s goals that she was excited about accomplishing with her renewed health (read more about these experiences at her Facebook page and website.) I was anticipating an update about a workout she had accomplished or something else cool that she had done, but instead found a post sharing bad news.

At the exact time I had written on Facebook before my trail run departure, Charis had written a post about waking up with intense abdominal pain. In the time I was jubilantly running up the trail, she had realized she likely had an obstruction. As I got back to the car and then headed back home satisfied with the morning, my friend was in her vehicle traveling to the ER and facing fears and uncertainties.

The news sent my emotions reeling and the tears welled up. One of Charis’s resolutions for 2012 was to not have to go to the hospital, and here she was spending the second day of the new year in that exact place. I couldn’t believe this was happening. I wished so hard that she could get out of that hospital fast and get back to doing the things she loved. However, as the days progressed, my friend discovered that the obstruction, which had since passed, had happened because her bowel was narrowing and possibly had a twist. She had to head back to surgery to get it resolved. I was so angry that she had to go through this all. It wasn’t fair. She had already traveled such a long and difficult road with this illness.

I guess not one of us knows what lies ahead with our health. All we can ever do is live life to the fullest and celebrate during those moments when we are feeling well, and stay positive and brave through the times of pain and uncertainty. Charis is a shining example of this. She is one of the strongest people I know, and her positive attitude and fortitude during trying times is inspirational. I know she will get through this latest surgery, heal up and work towards her goals at a feverish pace. As she does, I will be right there cheering her on through all the ups and downs.

Healing the mind as well as the body

I was talking to a good friend on the phone the other day and he was commenting on how happy I look in my Ostomy Outdoors videos. He is absolutely right! I am completely elated to be doing all the things I love again. Some days it seems like I walk around immersed in a complete sense of wonder over how good I feel. To be ill for years and then get a second chance to be healthy again is an amazing thing, and the resulting smiles, laughs and even tears of joy are the real deal.

However, when I was recovering from surgery, there were some times that those smiles were nowhere to be found. About five weeks after my operation, I got lost in a mental funk. I had some complications that had sent me back to the hospital a couple of times after the original surgery, and I had started to worry about all the additional things that could possibly go wrong. On top of that, I seemed to be spiraling into sadness in general. I had trouble sleeping and completely lost my appetite… one morning it took me two hours to eat a hard boiled egg. I didn’t feel like talking to my friends and would lie in bed in the morning, dreading the thought of getting up and starting the day. Usually a motivated person with a gazillion projects on the horizon, I became listless and had little interest in doing anything. Longing for the days before UC, I would curl up in a ball and sob until I couldn’t cry anymore, only to repeat the emotional breakdown a few hours later.

These feelings completely caught me off guard because I was sincerely happy with my decision to have surgery and was completely pleased with the results. I had no regrets whatsoever. Yes, I had gone through some complications, but I knew that the most important thing — my actual ileostomy — was functioning perfectly. I had so much to be thankful for. I had the best surgeon imaginable, my stoma was a gem, my pouch stuck wonderfully, I had only experienced one appliance leak due to wound drainage getting under the wafer, and food was traveling through my ileostomy without a hitch. How could I be so satisfied in one sense but still so sad in another? It made absolutely no sense to me.

Continue reading “Healing the mind as well as the body”

Part five in a series: I am thankful for Remicade

I am thankful for Remicade

“What?!” my friends and family might say upon seeing Remicade on my list. “But you hated that drug!”

Sometimes it turns out that the things we are most thankful for are the same things we didn’t much like when we were experiencing them. So it went with me and Remicade, or Remi, as Doug and I nicknamed it.

I’ll be honest. I wasn’t excited to take this drug. When my GI doctor at the hospital said my options were Remicade (infliximab) or surgery, I was leaning towards the surgery. I found the thought of getting regular infusions of such a strong biologic medication for the rest of my life daunting. But I knew my doctors were right in their advice: I was in no shape for surgery at that time, being very sick, weak, under weight and on high doses of steroids. The plan was to take three infusions, and if all went well, heal up a bit. I would regain some strength and come out of the flare, and then I could see a colorectal surgeon to discuss possible surgical options.

So my short relationship with Remi began. And wow… was it great in the beginning! Within 5 days of my first infusion, the horrible flare that I had been battling for over a month came to an end, and I was able to leave the hospital. But there were signs that things were not going to be so rosy with me and Remi. The day before I left the hospital, I developed really intense throbbing back pain. I had an x-ray which revealed nothing, and I went home thinking it was just pain from being in a bed so long. Over the next week, things got much worse as the pain began to migrate to different joints one at a time and left me incapacitated and literally crying in agony for hours every day. It was crazy-bad and I knew it was nothing I could ever live with. And so, my relationship with Remi ended as abruptly as it began. My future infusions were cancelled due to the reaction, and the pain began to subside as the drug drifted out of my system over the following weeks.

But even though my memories of Remicade are a little traumatic, I know it was paramount in returning me to health. It is the one thing that kept me out of emergency surgery and bought me precious time to heal, taper off the prednisone a bit and see Dr. Brown, who I mentioned in my last post. My story might have turned out so differently without it. I know there are many thousands of  people with IBD and other diseases who rely on this drug and that it has changed their lives for the better. So yes, even though Remi and I didn’t end up getting along, I am extremely thankful for our short time together.

Part four in a series: I am thankful for my surgeon

I am thankful for my surgeon, Dr. Craig Brown

How could I possibly be laughing? I had just been wheeled into the sterile operating room, had scooted over onto the operating table and was now gazing at the big round lights looming above with doctors and nurses in masks poised over me. Wouldn’t anxiousness have been a more appropriate reaction to this scenario than this sudden case of the giggles? And no, it wasn’t medication or nervousness causing me to crack up; it was Dr. Brown’s sense of humor. The room was freezing and he had just said something hilarious about this being my third surgery and how it was supposed to earn me a free cup of soup. Dr. Brown could always tell the funniest story or joke at exactly the perfect time to make me smile and erase my worries for at least a few minutes. And when you are feeling awful and terrified, even small moments of laughter are a big deal.

Dr. Brown’s sense of humor was just one of the many things that made him the best doctor I have ever had. Anyone with a medical worry can relate to the unbelievable sense of relief that comes with simply hearing your doctor’s voice on the phone advising you on what to do next when you are anxious about something. Dr. Brown was always there to help me out with concerns and is the most accessible doctor I have ever worked with. When I had problems, I didn’t talk to his nurse– I talked to him. He called often to check in both at the hospital and when I was back at home… sometimes even on the weekends. The speed at which he returned calls was unbelievable. He even squeezed me in for quick office visits at the last minute when I was concerned about something. I know he had many other patients, so I am still not sure how he did it. Maybe he is really a superhero?

Dr. Brown is most definitely a surgical one. His knowledge and skills are impeccable and I developed absolute trust in his judgment. A month out of surgery, I was having some issues and Dr. Brown sent me over to the ER to get a CT scan. After I had the test, other doctors came in and told Doug and me about the next steps. They did a fine job, but I still couldn’t wait for Dr. Brown to stop back to discuss the results and plan. Somehow it put me at ease to hear about it all from the doctor that I trusted the most.

Much of that trust came from Dr. Brown’s amazing bedside manner. He had the exceptional ability to be both direct and honest in his communication, but also compassionate and kind. He took the time to get to know both Doug and me, and treated us as friends. One day he called up to my hospital room just to recommend that I stroll to a nearby park because it was nice outside.

What do you think?  That was one of the things Dr. Brown said often. He really took the time to listen and get our opinions. He empowered Doug to be a partner in my care and spent just as much time answering Doug’s questions as my own. I can remember sitting on the couch and hearing the two of them talking on the phone about how to carefully pack gauze into a small tunnel that had developed in my abdominal wound. I loved it because Doug had never done anything like that before, but really wanted to do the best job possible. Dr. Brown was always so encouraging and confidence-inspiring.

When I was in the hospital with my final UC flare, my GI doctor told me that if I wanted to pursue surgery, she wanted me to have my operation with the best. I will forever be grateful that the referral sheet she gave me had Dr. Craig Brown’s name on it.

Part three in a series: I am thankful for my family

I am thankful for my Family

“I think it is going to bust open,” I cried in a panicked voice. A small gap in my incision had formed the day before, and I had just lifted up a dressing to discover that it was now twice as long, much deeper, and oozing copious amounts of drainage. As always seemed to be the case when things went awry for me post-surgery,  it was the weekend which meant I had to wait a couple of days to get in to see my surgeon. Fortunately, my mom, who had flown in from Washington to help me out, was there to keep me from going crazy with worry.

There is nothing like having your mom close by when you are hurting, and her presence comforted me to no end. My mom and I have always been close, and during her visit, it felt just like the old days when we spent a lot of time together. In the two weeks she was here, we managed to have lots of those mother-daughter chats that I miss so much. We also took trips to the mall so I could get my post-surgery exercise and try on fun clothes to help me feel confident about my brand new ostomy. She cooked for Doug and I, and even made a just-out-of-surgery-safe Thanksgiving dinner. Even though I felt poorly, I have the fondest memories of her visit. When she left, I cried because I missed having her here.

My mom and I right before she headed back to WA after helping me out for two weeks post-surgery.

I know my dad wanted to be here too, but he was not able to make the trip out from Washington state with my mom. That was okay… his love was with me. I also knew he was sitting back there worrying about me every second like dads always do. He called every day to check in and let me know he was thinking about me. I was grateful for the sacrifice he made in being without Mom to keep him company for two weeks. I know it must have been a very difficult and lonely period, especially the timing being right over Thanksgiving which is normally a time to be close to your loved-ones.

Still, my family is used to being spread out over great distances. Not only do my parents live all the way out in Washington, but my older brother lives in New York City and at the time of my surgery, my younger brother was living in B.C., Canada. He now lives in New York City too. Though they couldn’t be near, my brothers called often to give me support when I was making tough decisions about surgery and to cheer me up after the operation. It was fun explaining to them what it was like to have an ostomy. I am sad that I hardly ever get to see them, but I feel their love with me all the time. Usually when my brothers and I finally meet up again, even if a year or two has gone by since we last saw each other, we start talking and hanging out like barely a day has gone by. I love that.

Doug’s parents were there for me as well. When I was in the hospital with my UC flare, my doctors would allow me to go for walks outside as long as I was with someone and it was during the daylight hours. Doug couldn’t always get off from work during those times, so his parents would come visit often and take me on strolls outside. Those days in the hospital were so long and monotonous, and I appreciated their visits so much. Once I could start eating regular foods again, they brought gluten-free pretzels and cookie treats to my  hospital room to help me start gaining the 25 pounds I had lost. While I was later recovering from surgery, Doug and I would go up to his parent’s house in Fort Collins on the weekends where I could rest while also getting a change of scenery. In between short walks outside, I would curl up on the couch and watch football games with Doug and his dad, usually dozing off until a loud HOORAY would wake me up and alert me to changes in the score. To this day, whenever I am up at their house, it feels like a place of refuge. I look at those couches and just want to cuddle up in a blanket. So much healing happened there and I am so thankful for the love and support of Doug’s family.

When the incision I mentioned did end up opening due to my body being uncooperative in its healing, I found myself heading back to surgery to have it repaired. The hospital had signs posted that only a couple of family members were allowed in the pre-op area at once, but due to the evening hour and things being slow, the staff made an exception. There around my bed were Doug, my mom and Doug’s parents all cheering me on. I knew my dad and brothers were thinking of me too. At that moment, I felt the incredible love of my family so strongly. They were there for me then and always are.

Celebrating my first year as an ostomate

Today is the one-year anniversary of my ileostomy surgery. I thought about climbing a mountain to honor the 0ccasion, but decided to celebrate by enjoying a normal day. After all, as much as I love getting outside to challenge myself, it was the simple everyday things in life such as being able to go to work, eating a regular diet, and hanging out with friends and loved ones that I most longed to do when I was sick and then recovering from surgery. So, today I woke up and enjoyed my drive up to the park where I work. On the way, I could see the freshly snow-dusted mountains of the Continental Divide in the distance and was grateful for such a spectacular commute. At my job, I contentedly worked on an kid’s owl night hike that I will be presenting soon. After work, Doug and I had dinner with some friends. We joked that we should have a party with stoma-shaped cookies and a commemorative all-liquid dinner, but we opted for pizza and beers instead. It was a wonderful day, and it was the perfect way to top off my challenging yet life-renewing first year with my ostomy.

Enjoying pizza and beer on the 1-year anniversary of my surgery.

Last year, the day of my surgery was full of much different experiences, but was also a celebration of sorts. I remember waking up in the morning and breathing a huge sigh of relief. As we drove to the hospital at 5:15 a.m., I was scared and nervous, but also felt a profound sense of peace as I rested my head against the window and gazed up at the stars, pondering what my life without the sickness and pain of ulcerative colitis was going to be like. I checked into the hospital and made my way to pre-op, finally feeling secure that nothing was going to get in the way of my surgery.

Continue reading “Celebrating my first year as an ostomate”