Last Sunday I went with Doug and his dad to run the Journey Quest 5k in Fort Collins, a fundraiser for the Shared Journeys Brain Injury Foundation (SJBIF). The organization provides programs that help people with acquired brain injuries regain independent, satisfying and productive lives. This was my first 5k race since my ostomy surgery 16 months ago. The overall time I achieved in this run would determine my wave for the 10k Bolder Boulder, which I plan to run on Memorial Day.
I started running again last summer, but have mainly been working on endurance by going on longer runs. Since I have not been focusing on speed, I wasn’t sure what to expect my finishing time to be for this race. I have never been a very fast runner. My speed has been in the nine-minute mile range in just about every 5k or 10k I have done. Therefore, when I set my goal for this run, I simply hoped to at least match my time from the last 5K I did prior to surgery, which I completed in 29:43.
I felt fairly strong and crossed the one-mile mark in nine minutes and then the two-mile mark at 18 minutes. Despite the decent start, I really struggled in the final mile. There were a few times I had to tell myself that I needed to ease up because my lungs and heart felt like they could barely keep up with what I was trying to make my legs do– I simply could not breathe. I relaxed the pace a bit, crossed the finish line and realized that I actually shaved a handful of seconds off my last 5k with a time of 29:19. I was happy with the result, but could not believe how hard the race felt. I have never been so utterly exhausted during or after a 5k. Doug and his dad met me at the finish line after running great races too (Doug came in second in his age group, 40 to 49), and I couldn’t even talk from lack of breath. Doug’s mom caught us each on camera as we ran the race.
This race made me realize that if I want to get faster times, I must change my training strategy. I really like going out for long, slow runs, especially on the trails, but I need to mix things up and start including some speedier runs in the mix if I am going to match my pre-surgery time for the Bolder Boulder 10k. I have always finished that race in just under an hour, but based on how I felt on this run, that would be impossible right now. Time to put some more miles on the running shoes.
I am also glad to report that my ostomy caused no issues during the race. The event started at 10 a.m., so I ate my normal breakfast of a protein shake, a banana and a bowl of oatmeal at 6 a.m. I emptied my pouch before heading to the start line and was good to go for the entire time. There was a party following the race and I refueled on some chili and a few cups of popcorn. Yes, I said popcorn! I find I have no issues with this favorite treat of mine if I chew it well and drink plenty of water (24 ounces in this case.)
Speaking of water, I have never been a fan of the hydration stations at races where one stops to slam a small cup of water. Even before surgery, I always got a gassy bellyache from gulping the water down… that is if I didn’t choke on it first because I was breathing so hard. Most of the time I would just drink a little and toss the half-full cup onto the ground or skip some of the water stations altogether. With my ostomy, I am even more conscious of avoiding things that cause me gas pains. Not to mention that I need to drink a lot more water during activity to prevent dehydration. I usually carry a CamelBak hydration backpack on my runs, and decided this would be a good strategy for the race as well. I filled it with just the amount of water that I would need for the race so that the pack was light. This worked well because I could sip small amounts of water through the hose as I ran to stay well hydrated and didn’t get a bunch of air in my stomach.
One less-than-ideal thing I had to deal with during the race was trying a different wafer than my favorite one. Typically, I reserve sampling new supplies for times when I know I don’t have something big going on in my schedule. However, I have recently had some skin issues under the tape of my wafer: little red bumps that are insanely itchy. My stoma nurse is working with me to try to troubleshoot the cause, but in the meantime, I decided to try a sample of a tape-less wafer to give my skin a break. The 5k was on day four of wearing this new wafer. I was worried the sweat might make it fall off during the race, yet I didn’t want to risk irritating my skin by removing it early. By the morning of the race, my wafer was already starting to peel up on the edges. However, with a few little pieces of 3M Medipore tape in strategic places, the wafer held on just fine. Whew!
All in all, the race went well, and I am excited to push my running to the next level. I look forward to adding a few more races to my schedule in the coming months. And I still have my sights on the CCFA Team Challenge Half Marathon in December. I am hoping the shorter races will help prepare me for that big distance. Most of all, it feels great to discover another favorite activity that is once again possible thanks to my ostomy surgery.
Ostomy Outdoors 
That is a great achievement Heidi, congrats. Good luck with your future training.
Denise
Thanks Denise. Planning to get out for a trail run tomorrow morning. The weather has been so nice! Hope things are going well for you.
-Heidi
Congratulations, Heidi! I’m so glad for you that you did the race! Especially, that you had a popcorn and didn’t have problems after it :). Because of my son’s UC, we didn’t had it in our home for more than 5 years.
I have a couple of questions:
If there any specific reason you prefer CamelBak to Nathan for running?
Did you ever try stealth Belt: http://www.stealthbelt.com/?gclid=CLrG8-Kv-64CFSMHRQodeBJBxA
It has an impressive website and good reviews on the internet, but it’s expensive and any new info wold be helpful.
Thank you,
Wish you lots of Good Luck in everything you do!
Hi Anna,
Thanks!
Popcorn was hard on me with UC too. I know some people have problems with it after ostomy surgery, but many don’t. I barely even notice a change in my output when I eat it. I have no issues at all with popcorn or most other foods.
Running with a Camelbak over a Nathan is just a matter of personal preference for me. I tried running with a handheld water bottle several years ago and got severe tennis elbow from it. Then I tried a waist pack, but something about the way I ran made is slowly spin around on my hips which was annoying. This bugged me even more with my ostomy. I finally tried a Camelback and love the way it stays centered on my back and out of the way. It is very light and I can throw my asthma inhaler and a few other supplies in it. I also find it easy to sip water through the hose when I run.
I have not tried the stealth belt. With that belt you have to turn your pouch sideways. I find wearing my pouch vertically works better for me. Several people in my local ostomy association have the Stealth Belt though and really like it.
I know some of the ostomy garments, belts etc. are very expensive. It is so hard to know if one is going to like an item before trying it, and there are seldom returns allowed on ostomy clothing. I have things that I bought and then decided didn’t work well for me. Preferences with ostomy supplies, clothing, products etc. are so individual. Still, I figure money used to make my life with my ostomy more comfortable and confident is well spent even if I get a few things that I end up not using much.
Thinking of you and your son as you get ready for his surgery.
Take Care,
Heidi
Way to show bravery of heart and strength of mind, Heidi. Way to go! Proud of you. I anticipate a grand finish in December’s 1/2 marathon. With your heart, mind, and spirit, it will be a day you’ll celebrate for years to come. Here’s a tip that may help: I use Tegaderm by 3M to frame my tapeless wafers each time I change my appliance, which is each Sunday. Tegaderm is used to cover IV and central line sites in hospitals because it’s clear (for observing site), waterproof, non-allergenic, doesn’t peel off or harm skin, and is as thin as anything on the market. It lasts me the whole 7 days, isn’t affected by showering or sweating, and just works so much better than any tape available (I’ve used so many kinds of tape as a doc and a patient, you wouldn’t believe). D gets it from the hospital, but I expect you can find it online, Edgepark, or maybe a drugstore. I can send you some if you want. Anyway, great pics — good to see you again! Many Spoons ~O~O~O~O~O~O~O~O~C~
Thanks Cary! Hopefully my joints will make it to the marathon:) My hip was bugging me last week and the day of the run, but then miraculously cured itself the day after. Maybe running helped it:) As I am working with my personal trainer, I notice aches and pains come and go as everything is getting rebalanced.
Thanks for the tape tip. I am till not sure what my skin issue is. I have been working with my stoma nurse through email and she felt it sounded like a yeast infection, so we were treating it with anti-fungal powder and then skin prep under the wafer. That wasn’t doing much, so I decided to also try the tapeless wafer which is a little smaller than my other wafer and exposed more skin to the air. My skin was finally clearing up after a week with the tapeless wafer, so I went back to the tape wafer to see if the rash comes back. This might indicate an allergy. I really hope that isn’t the case as I love how secure my regular Convatec wafers are and they work so well for me. Another possibility I was thinking about was that my outermost layer of skin gets damaged every time I remove my wafer which perhaps made it susceptible to a fungal infection or bacterial infection of the hair follicles? Time and troubleshooting will tell what I am dealing with I guess. If I end up having to go back to the tapeless wafer, the Tegaderm sounds like a great option. I have to change my appliance every three to four days though. My output erodes my Eakin ring around my stoma in that time frame, and if I go longer my parastomal skin suffers. Would taking the Tegaderm off every three to four days hurt my skin, or is it easy to peel off with adhesive remover (I use Niltac)?
Thanks again for the help.
Cheers,
Heidi
I know hip pain. Can be intense. Got mine after losing so much weight that I had no padding while lying on my side. I would awake in pain, likely due to lack of blood flow to the hip joint from extended pressure and stasis. Took a good hour walking for it to resolve. If you have an acute injury that causes hip pain for a day or two, you might contact your doc to prescribe a medrol dose pack, commonly used for acute muscle, ligament, and tendon injury. I’ve used it for back pain and tennis elbow. It’s also commonly used by pro athletes. Pain usually resolves with medrol in a day or two.
Tegaderm comes off my skin easily without Niltac, which I use liberally to allow my wafer to release itself under the weight of a 1/4 full pouch during changes. I always use stoma powder, then Silesse to dampen the powder and provide a protective layer over the whole wafer area. After the Silesse air dries (20 seconds) I apply my wafer with a thin ring of paste already on it. Before I started using Trio products, I would be sore the rest of the day, probably because wafer removal and multiple passes over the skin to clean the residue took layers of epidermis off, leaving my skin red and irritated. So, if you don’t have a yeast infection or allergy, liberal use of Niltac (I use the spray for wafer removal and the wipes for residue removal), Silesse, and stoma powder may be the solution.
I was planning on videoing my change this morning, but decided to save time for a bike ride instead. Good thing as I ended up hemorrhaging from my stoma after lifting it to apply powder. Seriously, it was pumping blood for 3 minutes then calmed to a run for another 5 minutes under pressure. It finally stopped after saturating 4 paper towels–the good news, other than it stopping before I passed out, is that there was no output, TG! And you know how they say that there are no pain fibers in one’s stoma? Well, they certainly didn’t ask me! Maybe I’ll do the video next week–if all goes well, it takes me about 5 minutes after everything is set up. We’ll see.
May your stoma be plagued with good health.
Spoons ~O~O~O,
~C~
Cary,
I took a look at your video. Nice job covering your changing method. I use a lot of the same products. Just ordered some more Niltac and decided to order the Silesse too to see how that works compared to the barrier wipes I now use. Like you, I also use the Safe and Simple wipes.
My hip is still acting up so I am going to the doc to have it checked out next week. I am guessing it is just another muscle imbalance and that perhaps I will need some more specific physical therapy to remedy it. Of course, there are always the fears in my head that it is something worse… especially due to the high levels of prednisone that I was on during the final stages of my disease.
The wafer rash is still perplexing me. I went back to the tape wafer and things were great for a couple of weeks, but now it is acting up again. I plan to try the Tegaderm with tapeless wafers as you suggest, but for now I am trying to not change too many variables at once so I can figure out what exactly is helping it or making it worse. I do spray the heck out of my wafer with Niltac, so it doesn’t seem like I am traumatizing the skin too much as I remove the wafer. I do notice the condition is worse during the weeks when I have done a lot of activities where I stretch and move like climbing and yoga. I wonder if my skin is irritated when it wants to move, but the wafer doesn’t stretch with it? Fortunately it isn’t a horrendous rash. It looks a bit like razor burn in a few patches under the wafer and it itches. I plan to pay a visit to my stoma nurse soon. We were trying to tackle it over email, but she probably needs to see it in person.
Hope your stoma is healed up!
-Heidi
Concerned about your hip, the prednisone and all. Really hope the doc finds all benign and tells you to ride your bike to avoid all that pounding from running! At least for awhile. I’m still dealing with plantar fasciitis from jogging in December. It’s unbelievable! Just shows the damage running can do.
Once I started Silesse, the itching and burning decreased dramatically, as did the redness I found each change. Rarely do I have those problems anymore, and the healing was complete by 2 changes using Silesse. The other great quality of Silesse is that, as a silicone, it dries in about 10 seconds, so no need to wipe it off.
If the problem occurs more with activity, moisture trapping under the barrier reacting with the adhesive could be the culprit. In that case, once all else is ruled out, a different manufacturer may be necessary. Simplicity and stomas just don’t seem to mix.
Keep me in the loop just incase an outside view might be helpful.
All the best,
C
HI Heidi, I also want to congratulate you on your achievements, you are setting an example for us all. I have a couple of questions, one physical and one mental-wise. The first one concerns the use of belts or other kind of garment to prevent herniation, particularly when exercising. My operation was five months ago and I would like to resume some form of physical activity that goes beyond walking at a fast pace and stretching, but to tell you the truth I do not feel confident enough as yet. I have heard about some Ostomy armor and wonder if some one has used it and has something to share about it. As to the mental side, after being released from hospital, moving from Spain to New York, finding an apartment, settling down and resuming work all in the last couple of months I must confess that now I feel quite down. It is as if all my energy was concentrated on the day to day and now that I have reached a certain stability the prospect of living with an ileostomy for the rest of my life is haunting me. I know that we all have to accept it and make the most of it, as you do, but I wonder if some kind of specific therapy is available. I seem to recall that in one of your blogs you referred to some form of mental training you underwent at some point during the process. If so, could you refresh my mind?
Thanks and Best,
Luis
Hi Luis,
I’ve used Ostomy Armor. The man who makes it is great to deal with. I don’t use it much anymore because the waistband of my pants fit just below my ostomy so that when I put them over the armor, they would always slip off the faceplate of the armor and end up below the plate cutting off flow to my pouch. The armor also decreases the pouch capacity considerably but does protect one’s ostomy well, especially from seat belts. It’s also difficult to conceal unless you are wearing a jacket and after an hour or so I found the belt to be uncomfortable. Now I just use an Ostomysecrets wrap to hold my pouch outside my pants. Keeps the pouch from moving around during activities and doesn’t decrease capacity. Much more comfortable too. Clearly the armor provides protection and the wrap doesn’t, but I’ve yet to need such protection. My experience–hope that helps. Happy to answer any questions.
Hi Luis,
Good to hear from you again. I have never tried Ostomy Armor, though I have thought of getting it. I bought this product soon after surgery: http://cmostomysupply.com/cm_html/p_stomspt.html. So far I have mainly used it to protect my stoma from a seat belt when riding in the car on some long road trips and once when I drove these crazy fast indoor go-karts and was afraid I might squash my stoma if I crashed or got hit by another kart. I haven’t tested the Sport Gard much because I really haven’t found the need to protect my stoma from impact for most activities, but may start using a stoma protector when I do longer rock climbs and have a bunch of metal gear hanging from my harness. The problem with these belts for me is that the waist belt always seems to ride up because I have a narrow waist, yet my stoma is more at my hip level. As far as parastomal and incisional hernias, I am mindful about the risks of developing one and do all I can to prevent that from happening. That is one reason my favorite belt is a six-inch wide Nu Hope Cool Comfort hernia prevention belt. It stays in place for me very well due to the width. http://nu-hope.com/beltlit.pdf. I wear it during any strenuous exercise (running, snowboarding, lifting weights, rock climbing etc.) Unfortunately, this doesn’t have a cover to protect the stoma itself. One product I would love to try is this belt from Comfizz: http://www.stomawear.uk.com/womens-stoma-support-belts-level3-72mm-aperature/. It is a wide hernia prevention belt that also has a cover that can come on or off with velcro. You will likely just have to experiment to see what your favorite products are.
As far as the emotional and psychological aspects of having a stoma, I saw a Licensed Professional Counselor (LPC) when I was having a rough time emotionally. It was helpful to talk to someone and get a different perspective. She also gave me some techniques and mind exercises to help me cope. The post where I wrote about my experiences can be found here: https://ostomyoutdoors.com/2011/12/09/healing-the-mind-as-well-as-the-body/. I wasn’t sure what type of therapist to go to, so I contacted my HMO health plan, and told them the things I was experiencing. They scheduled me with someone they thought would be a good fit and it worked out really well. The counselor even ended up being a climber which was one of those unbelievable strokes of luck. She helped me a lot and I am so glad I took that step to get my mind in a good place.
I know the time period you speak of where you are past the initial challenges of having an ostomy and begin to settle into “the rest of your life” with one. It was hard at first, but that was the time period I began to really focus on figuring out the systems and products that were going to allow me to do all the outdoor things I loved again. The new challenges of figuring these things out and having some outdoor activity goals kept my mind occupied and helped end some of the anxiety I had been feeling. Soon I began to realize that my ostomy was no longer at the front of my mind all the time. I was living my life again and my ostomy was just in the background of my thoughts. Soon the times that I wasn’t thinking about my ostomy at all became more and more frequent.
Also, I found that jumping in and doing some of the things that scared me with my ostomy helped too. For instance, I was afraid to go swimming at first, so I went out and bought a swimsuit and made myself go to the pool. When I did, I realized nothing bad happened. When I took a train ride into the mountains last fall, I purposely made myself go empty in the tiny bathroom while the train was bouncing down the tracks even though my pouch wasn’t full just to prove to myself that I could do it. I constantly push myself to explore what is possible with my ostomy. Each time I do something new and realize it is not a problem, I get more and more confident and feel better about my ostomy. It takes time, so hang in there.
Take Care,
Heidi