Sunday, June 19, 2011

Ostomy on the Run

When I was preparing for surgery, I was desperate for information from a running ostomy person. I really couldn't find anything detailing how anyone managed running with an ostomy, so I've decided to outline some of what I do here. Keep in mind, different things work for different people as far as appliances and set-ups...but this will at least give you an idea of one possible way of doing things. Here is a run-down of my appliance and accessory set-up as well as running gear:

1) Basic appliance: I am still using the Hollister 2-piece Lock n Roll drainable pouch I've been using since I left the hospital. I wear a convex wafer and have switched from the Adapt ring to Stomahesive paste in an attempt to address some leakage issues I was having. I don't think there is anything special about my appliance in regards to running, this just happens to be the one I use. I would personally think a drainable bag is better than a closed end system for distance running because you can stop in a port-a-potty and empty if needed rather than changing out pouches.

2) The next item I use is an Adapt ostomy belt. This is just a thin elastic belt that attaches to the tabs on the pouch and goes around my waist. It helps keep the pouch close to my body and provides reinforcement as it fills so the weight doesn't pull it down. I basically wear one of these belts 24x7.

3) The next step is probably one of the most important in my being able to run with confidence....Sure Seals! I have just discovered these and all I can say is, if I ever meet the person who came up with them I'm likely to kiss them full on the mouth. If you don't know what they are, it's a piece of clear, thin, super sticky adhesive film that goes over the wafer and extends out onto your skin beyond the borders of the wafer tape. They make the wafer water proof which is really nice for swimming and showering. The big, fat, huge bonus to them though is the fact that they will contain pretty much any leak you might experience. I've heard amazing things, but it wasn't until I got to experience this aspect myself that I realized why people rave about them so much! Yesterday between sweating through my super humid four mile morning run, and also walking around an outdoor festival for several hours in the heat, I ended up losing the seal around the bottom of my pouch. It was a sizable leak, but the Sure Seal kept everything inside---no smell, nothing on my clothes, nobody knew and I had the time I needed to get my supplies together and get changed without worrying about trying to avoid a further mess. I was so happy! I will definitely keep using them and wouldn't want to run or swim without them at this point. If you are an active person and haven't tried them, then you definitely should!

4) The next layer of my ensemble varies depending upon how far I'm running and whether I am on the treadmill at home or outdoors. If I'm on the treadmill at home it's typically shorter distance and I can stop anytime if I need to fix anything, etc. In this situation I like to wear a regular pair of underwear plus my running shorts with the built in brief. The built in brief provides enough support for the pouch while the two layers keep the bag off of my skin. If I'm running longer, or running outdoors, I like to wear a regular pair of underwear plus my belly band (the maternity type). Then I pull on whatever shorts I want to wear or a running skirt. The belly band holds the pouch really flat and close to my body and provides a lot of support to keep it from bouncing around.

5) Hydration, hydration, hydration is the mantra they drum into our head as ostomy people. This is doubly important when running long distances in hot weather like I am doing right now. So far I've been able to get through my runs with a 20 oz. hand-held bottle (I like the one from Amphipod). My training group sets up water stops every 2-3 miles and I make sure to fill my bottle up at each stop. I start out with Powerade Zero and will add the regular Powerade they supply at each stop. If I get tired of Powerade, I will start adding water to cut it down a bit. At the end of the run, I make sure I drink at least one bottle of plain water. I make sure to take a drink from my bottle at the start of each new song on my iPod, or more frequently if I feel like I need it. I did purchase a 4 bottle Fuel Belt which I plan to start wearing as our runs progress. Though I know the water stops are out there, I want to make 100% sure I have the fluids I need at any given point. I think it's my responsibility to avoid a dangerous situation, so I will carry the water I need for any emergency that might arise. I do plan to start taking salt tabs as our runs push past the one hour mark as well. That will be an experiment because I've never used them before. I tend to lose a ton of salt anyway when I run, so I think it's best that I supplement so I don't end up low on electrolytes.

6) I needed to work out a way to carry an emergency pouch change kit with me on the trail. I ended up buying a large size pouch from Fuel Belt that I could add to my bottle belt or race number belt. The pouch was just the right size to put a wafer (I pre-cut it to my stoma size so I don't need to carry scissors), folded up pouch, Adapt ring, and a couple of disposable wipes inside. I skipped the adhesive remover thinking if I get into a situation where I need this on the trail then the adhesive from the wafer is probably compromised enough that I can remove it easily. I also skipped the stoma powder because of the bulk and I can make do without it for a day or so if needed. I really hope to never need any of the items in this pouch, but carrying it makes me feel much more secure. I do keep my full on the go change kit in the car with more extensive supplies.

7) Last, but not least, is my Road ID elite identification bracelet. I went with the Interactive version that not only gives my name and emergency contact information, but it allows me to maintain an online profile with my medical information, surgeon's contact information, etc. This will ensure that any medical personnel can access the specifics about my medical condition in the event that I need assistance and can't speak for myself. I've always run with Road ID, but it's doubly important now that I have this type of medical history that must be communicated to first responders. I actually now wear my Road ID elite bracelet all the time just as a precaution so I know I'm covered in any situation where I might need emergency medical attention.

So, there you have it....how one ostomy runner makes things work for her. I'm happy to take any comments or discuss other products or tips that other active people have found useful. Just leave your questions or tips in the Comments section. Also, if you are into backpacking, hiking, or snow boarding you should check out Heidi's blog Ostomy Outdoors for some great tips and inspiration for getting back into outdoor adventures with an ostomy. I love the videos she has posted there, and I'm sure you will as well. The main thing to remember is to not be afraid to try new things. We only get this one life. Get out there and live it!

5 comments:

  1. Thanks for spreading the word about my site. I am so happy to be running again too. I hadn't thought of carrying an emergency change kit. Sounds like a good idea for my longer runs away from home. I am going to look into the road I.D. bracelet too. Thanks for all the great tips!

    -Heidi

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  2. Good tips. It's great to see other ostomates who love running and maintain an active lifestyle.

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  3. Thank you for this blog. I recently had to get an ostomy, thankfully it is only temporary. I am just getting back into working out and running. I am not running long distances right now due to this and having to have surgery in another couple months to remove it. I didn't know anything about the Sure seals. It's a bummer about the price though..everything I get goes through a different company. I use the belt as well though, and have always wondered how to prevent the bag from boucning. I have been tucking it into my pants for the time being.

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  4. Thanks for sharing your experience with all of us. You can take the help of a specialist or gastro surgeon if you find it really difficult. You can also use the different type of technically designed cloths like the Ostomy Lingerie, the Ostomy swim wear etc. they are designed so as to support the Ostomy bag attached to your stomach.

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  5. Thanks for sharing . People who find it really difficult to live life normally after Ostomy may also take help from the Ostomy bag that you can wear inside your cloths so that you can wear the dresses of your own choice without any tension.

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