Tag: remicade

Ring around the stoma: my best defense against leaks

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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.

Part five in a series: I am thankful for Remicade

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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.

Celebrating my first year as an ostomate

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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.

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Permanent ileostomy or j-pouch: that was the question

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One of the questions I get most often from readers of my blog is why I chose to have a permanent ileostomy instead of trying j-pouch surgery. Though I have mentioned a few of the reasons in other posts, I decided to address this topic in a little more detail. The point of this post isn’t to tell you that one surgery type is better than the other. They are both very good options. My goal in this writing is to share the thought process I went through to make my choice.

In the course of my illness, all my symptoms, colonoscopies, and genetic testing pointed to Ulcerative Colitis and not Crohn’s. This made me made me a candidate for either surgery type. At age 38 during the time of my surgery, why would I choose to live with a “bag” for the rest of my life?

It wasn’t a decision I took lightly, and I gathered all the information I could. This began when I was still in the hospital, facing the possibility of emergency surgery. The very kind and helpful general surgeon who would have done my surgery had I continued to decline, visited my room almost every day to check in and patiently answer my seemingly endless questions. He introduced me to the words “ileostomy” and “j-pouch” and gave me a great foundation of information to build on.

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Here’s to 500 views!

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I had to do a double-take when I looked at my Ostomy Outdoors blog counter the other day and saw that it had hit the 500 views mark after only a couple of weeks. I never expected to have so much interest in the site. Thank you to everyone who has read, commented on, or included links on their own websites or Facebook accounts regarding the blog and videos.

I know firsthand the importance of hearing other people’s stories when facing ostomy surgery. The whole experience is a complex stew of hope, fear, excitement and worry. One needs help sorting through these feelings while trying to make sound decisions… usually while feeling very ill on top of it all.

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Welcome: the story of my outdoor adventures as an ileostomate (feat. new video)

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Yesterday was my sixth-month anniversary of my permanent ileostomy surgery, so it seems like a fitting time to start my Ostomy Outdoors blog. I have been active in the outdoors since I was a child, and one of my biggest fears about ostomy surgery was that I would no longer be able to take part in the outdoor adventures that I love, like rock climbing and backpacking. Through writing and short films, this blog will document my return to these activities after having my colon removed due to ulcerative colitis (UC).

My battle with UC began in 1999. It started out very mild but worsened over the years, with 2009 and 2010 bringing my worst symptoms yet. My abdominal pain increased, and I constantly bled, making it hard to keep my iron levels stable, resulting in fatigue. I would sometimes have small accidents and began to put pads in the back of my undies when hiking, just in case. Of course, I was also a little embarrassed about all of this, and except for my husband and parents, never talked to my friends and family about it. I was a master at covering it up. There were a few times my cover was almost blown. I remember once when I was out hiking, my friends got ahead of me on the trail when suddenly I had to go the bathroom. Without any time to inform them of my situation, I ducked behind a boulder to dig an emergency cat hole. They couldn’t see where I had gone, and thought I had disappeared! Needless to say, they were very relieved when they saw me walking towards them again on the trail. Urgency is one thing when you are hiking; it is another matter up on a rock face. Often if I was feeling ill with UC, I would cancel my climbing plans. Still, most of the time I managed to lead an active life with the disease by ignoring the pain and not letting it stop me.

Continue reading “Welcome: the story of my outdoor adventures as an ileostomate (feat. new video)” →