Realizing that today is the Winter Solstice and has the shortest daylight period of the year, it is a fitting time to write about my recent nighttime jogging adventures with Doug. Just about every evening after work, we have strapped our headlamps to our noggins and hit the wide dirt trail near our house. Running by headlamp is a unique experience. There was one night that we saw four glowing eyes in the distance, and I froze in my tracks thinking they belonged to a couple of mountain lions coming down from the mesa near our house. As the animals approached, I was relieved to see that they were happy canines out for an evening stroll with their owner. Another night we saw a coyote trot across the trail, forming a silhouette against the dusky sky. We went right over to examine the tracks he left in the snow. Last night I got dizzy as giant snowflakes were illuminated by my headlamp, giving me the feeling that I was moving forward through outer space. Whether the sky is moonlit or pitch-black, temperatures are balmy or frigid, or clouds are misting rain or dumping snow, we will be out there. Lately, running and other exercise has taken on a new importance.
A couple of months ago, I went for my yearly physical. Because of my prednisone use over the past few years, my physician scheduled me for a bone density test. Within a week, the results came back showing that I have osteopenia, which is weakening of the bones and can be a precursor to osteoporosis. My doctors at the hospital last fall had warned me that this would be a possibility since I had been on such high doses of steroids while trying to get my flare under control, so this news wasn’t a huge surprise to me. Still, it was not something an active person like myself wanted to hear.
I first discovered the amazing healing powers of prednisone about a year after being diagnosed with ulcerative colitis. A bad flare had led me to the ER where I was prescribed a 40mg taper of the steroid. I couldn’t believe how fast it worked. Within 4 days my symptoms completely cleared up. I was even able to climb the 14,255-foot Longs Peak two weeks later. However, foreshadowing what would happen when I took prednisone in the future, my symptoms returned when I got down to 10mg. My doctor added another tapering dose which finally ended the flare up. Over the years, it seemed like each time I needed prednisone, it became less and less effective. During my final flare, even high doses did little to control the severe ulcerative colitis.
As surreal as it can be to run the trail near my house a night, it is even crazier to think that such a small period of time on steroids could have had such a long-term effect on my body. I can’t remember the exact dosages and times I was on prednisone over the years, but the following list provides my best recollection:
- July 2007- a 40mg taper over about a month’s time and then a few more weeks added when the flare returned
- August 2008: a 40mg taper over about a month’s time
- April 2009: a 20mg taper over two week’s time
- August 2010: started a 40mg taper and ended up being on varying doses of oral and IV steroids for the next 3.5 months, with the highest dose being 80mg
After tallying these times up, it turns out that 6-7 months of my 39+ years of life was spent on varying dosages of steroids. It doesn’t seem like much in the grand scheme of things, but was enough to effect my bones. I know that each of those doses was necessary to get my disease under control at the time, but I am glad that, barring any other health issues, I will not need to take prednisone anymore.
This brings me back to the topic of running at night. Because I am no longer on steroids, my physician thinks that my osteopenia might be reversible with calcium and vitamin D supplementation as well as at least 30 minutes of daily weight-bearing exercise like running. In three years I will be tested again and hopefully it will show less bone weakness. In the middle of the winter when days are short, running at night provides a convenient way for me to get exercise. Though heading to the gym is also a possibility, I have always enjoyed the simplicity of grabbing my running shoes and heading right out my front door.
In years past, I would come up with all kinds of excuses as to why I couldn’t stick to my workout routine in the winter… it was too cold, too icy, too dark and my schedule too busy. But those rationalizations no longer sit well with me. Excuses do not strengthen bones.
Ostomy Outdoors 
That pic is awesome!
How do you keep your pouch in place while running? And how do you time your eating to keep output low during exercise? I also have an ileostomy and am having great difficulty getting enough calories for exercise (early satiety due to chronic abdominal pain, worsened by eating), so what high calorie low volume foods give you the energy to exercise so much? You are amazing!
Cary,
Thanks for the great questions. The 2-piece Convatec Sur-fit Natura wafer/pouch I use sticks really well for me, and I have never had one budge during any exercise. Over this I also layer my Nu-Hope cool comfort flat panel hernia prevention belt and then a pair of Comfizz boxers or briefs on top of that to hold everything in place. It seems like a lot of layers, but I find the combo really comfy.
For hiking/backpacking, peak climbing or snowboarding all day, I eat as I go and don’t worry about trying to keep my output low. I find that trying to think about what I eat all the time is too difficult. It is much easier for me to just eat what (and when) I want and then deal with whatever the resulting amount of output might be. If it means emptying a few more times or swapping out pouches more often if I am using a closed-end system, I just do that instead of trying to regulate what I eat. However, this might not work for you since it sounds like you get some chronic abdominal pain that affects what you are able to eat and the timing. That would be really hard and I can see how you are faced with some extra challenges.
For running in particular, I like to go on a empty stomach so I don’t get a belly ache. Generally I run after work so my stomach is empty anyway since I haven’t eaten since lunch time. I might eat an energy bar a hour before I run so I am not super hungry. My favorite bars are the Think Thin protein ones. I don’t know why they are named Think Thin because they have 230 calories in each bar and are great high calorie, low volume food. As far as output, I drain my pouch before a run, and am usually fine for the entire time until I get back home.
Some high energy food that I do eat often (especially on hikes) are Think Thin Bars, Lara Bars, cheese or peanut butter and crackers, nuts (as long as I eat them in small amounts, chew them well, drink lots of water and mix them with other foods, I tolerate them well), chocolate, mini-cookies or animal crackers and pretzels. I usually start my day by drinking a large whey protein shake with a banana blended in and a bowl of oatmeal. Sometime I also eat a couple of hard boiled eggs a little later in the morning which keeps me fueled for a good while. I love Greek yogurt too. Though it is not high-calorie, it is packed with protein.
I do notice that I get full much faster with my ileostomy, and I get a bit nauseated if I overeat. I now tend to eat more frequent, smaller meals than I did before surgery. My weight has been stable in the year since getting my ileostomy. I haven’t gained a whole lot but I haven’t lost any either. Another interesting thing is that when I am doing really strenuous exercise, like hiking big peaks, my system can shut down for a while and I won’t have to empty for a long time… even as long as 7 or 8 hours. Then it all comes out later when I am relaxing, and I have to empty numerous times in a very short time period.
Anyway, I hope you find something that works out for you. Everyone is so different in the way their ostomy functions regarding output consistency, frequency, food tolerances etc. I found I just had to keep experimenting to see what worked best for me.
-Heidi
Heidi, thank you so much for answering, which is very helpful & hopeful. You are such an inspiration to me. Does the Nu Hope belt restrict flow into your pouch? Also wondering how much you have to awaken to empty at night and how often you change your appliance. I jogged yesterday for ~ 10 minutes. It was tough and very slow going but thinking of you and what you are accomplishing … I had to give it a go.
Cary
Hi Cary,
I know how overwhelming this can all be, and I am incredibly happy to hear that the site is helping you and giving you hope. That was my main goal in creating the blog.
The Nu-Hope belt does not restrict the flow. It has an opening in it that the pouch fits through. Even when I wear my Comfizz briefs or boxers over the hernia belt, the flow still is not restricted. There is a good visual of my layering system in my rock climbing Outdoors video found in the Adventure Videos link at the top of my page.
I can usually make it through the night without emptying (about 8 hours). When I do wake up in the morning, my pouch is about 1/3 way full of output, but very full of gas. It looks like a blimp attached to my belly. I think I must feel it with my hand in my sleep, because I always seem to wake up just in time to go empty it when it does puff up like a balloon. I also use a product called the Osto EZ Vent. If I do wake up in the middle of the night and see that my pouch is full of gas but not very much output, I can simply sit up in bed and carefully release the gas out of the vent and then lay back down to go to sleep without having to get up. I wasn’t able to go the whole night without emptying until around 6-months post-op when my output slowed down significantly. Right after surgery, I had to get up several times each night to empty.
I change my appliance every 3-4 days. If I try to go longer than that, my output starts to erode my Eakin Seal and I get irritation right around my stoma.
Running is hard! It is the activity that I have found most difficult to work back into. I can do very long hikes with much elevation gain, but even after running again for a while now, a 2-3 mile run on relatively flat ground still wears me out. I am gradually improving, but I am still only able to run roughly 30 minutes very slowly at this point. Hang in there! 10 minutes is a very good start.
-Heidi