Backpacking for long stretches gives you the opportunity to think about a lot of things…even with a 35-pound kid on your back talking and singing in your ear. On a recent backpacking trip, thoughts of my colon kept entering my mind…maybe because soon I will be going off the meds that have kept me healthy for the past 4 years, maybe because I felt like a badass flicking my Ulcerative Colitis the finger (wow, that was a bit of a powerful statement wasn’t it?!)
I experienced my first UC flare-up almost 20 years ago and rode on a roller coaster. I went from trying to still bike to my college classes to getting a handicap permit to getting a blood transfusion. One of the first people who talked to me about the disease was a well-meaning woman who had me in tears by the end of the conversation. She talked about surgery and how wearing a bag wasn’t that bad. To those recently diagnosed with UC, this post is for you!
A bit of background. My doc says I have a moderate-severe case of UC. When I flare-up it tends to be severe and twice I landed in the hospital but I still have my intestines 
I have run through most all the treatment options from natural diet changes (even going so far as a chicken broth diet as a vegetarian!), to steroids, Imuran and Asacol, and now to Remicade infusions every 8 weeks. As a person who eats almost all organic foods, uses vinegar to clean almost everything, avoids plastics, and generally spends a lot of money and energy living as natural as I can, relying on chemotherapy basically sucks. But it works and that is pretty darn important. Soon I will have to go off Remicade because of serious side effect possibilities - I won’t run through the list of them. I will be preparing my body for the fight to stay flare-up free. Perhaps I will create my own combination of the miracle cures out there like Jordan Rubin (chicken broth man!) and Elaine Gottschall (have the book, haven’t full embraced the diet yet). I’ll keep you posted.
Oops, I really wasn’t trying to scare you! What I really wanted to do was share with all you recently diagnosed folks, or folks that are struggling right now, that you don’t have to limit yourself because of this disease. It’s not all hospitals, medicines, and bathrooms. Here are some things I have done with UC.
Backpacked and traveled around Costa Rica at the tail end (ha ha, if UC is new to you, get used to the jokes) of a flare-up. Hello moonface!
As a field biologist I have spent many occasions working and camping out in the woods during flare-ups. Look close at the pic below and you will see a moonface again.
Road tripped to Maine with my 6-month old, camping out or staying at other people’s houses and sharing a single bathroom with lots of people. My favorite story from that trip is the emergency time I had to use one of my daughter’s diapers because I couldn’t climb down the ladder and get to the bathroom in time…darn, I don’t seem to have a picture of that…
Nursed our daughter for 3.5 years…even through a 1-year flare-up and sometimes taking care of both of our needs at once…
Nursing on the Pot. Exposure expertly altered by Dale Johnson...
Probably the most dramatic is Project Remote. For the past 4 years I have been documenting the remotest location of each state with my husband and young daughter…including a 3-day boat trip during a flare-up and several backpacking trips carrying 50 pounds on my back! Sometimes flare-up treatments can be tricky on the road…
Flare-up Treatment in the Truck Loft
All of this is just to say don’t freak out, sometimes the road is rough but it’s not impossible, attitude is EVERYTHING! A lot of the bad stuff is just temporary anyway, and all the things that may seem so difficult now will become the new norm and not a big deal. Be it a complicated medicine regime, always being aware of where the nearest, sound-proof bathroom is, or dealing with the side effects of medication…
You can still go out and climb whatever mountain you wish, literal or figurative. Besides, its much easier to find a private ‘bathroom’ outside than it is in town!
Climbing the Continental Divide
You’re still as awesome now as you were in college. Well, maybe even more so! You have a wonderful attitude … Definitely as inspiration
Thanks Colleen!!!
That is an inspiring story for anyone with a challenge in their life. It is easy to let it get you down, but a story like this empowers and beings in the best healing medicine, humor. XXOO
I feel ya, Rebecca. Have you been following recent research on the most natural treatment for UC? http://opinionator.blogs.nytimes.com/2013/07/06/why-i-donated-my-stool/?_r=0
Interesting that it could all come down to simply not having the right gut flora…
This is an awesome article! Have you heard about eating parasitic worms? http://www.scientificamerican.com/article.cfm?id=helminthic-therapy-mucus
I love you Rebecca
I’m getting ready to thru hike the AT. I’ve had UC for about a year and just got out of the hospital for pancreatitis caused by the UC meds. I was’t told it would/could last forever. I kept thinking it would just clear up. Go away. Any day now. And I’d go hike. But I can sit here and bleed or go out there and bleed. I’m going out there. Good to know it’s not the worst idea in the world!
Right! You can’t just wait around for the flare-up to stop…get out there for sure but be smart about it and make sure you listen to your body! I definitely wouldn’t embark on a through-hike while flared up — there are major health concerns (too much blood loss can require a blood transfusion and sometimes that needs to happen ASAP) but also its just not that much fun to be sick and backpacking! Take care of yourself, help yourself heal, then go after your dreams!