Don't let your Crohn's win. Beat the Crohn's.

Wednesday, December 18, 2013

A Second Chance

Over the last ten and a half years I have struggled with my disease both physically and emotionally. When doctors heard that I was "only" having 3-6 bouts of diarrhea, they got so excited about how "well" I was. In my teens, was I already doomed to always being worried about where the closest bathroom was? For the rest of my life, would I need to carry around a spare change of clothes for those unavoidable accidents?
In October of 2012, I entered in a clinical study. At first, I was a non-responder and I was getting rashes after some injections. It seemed as though once again, a drug was unable to bring me into a complete remission.
In 2013, I began to run. The beginning was excruciating and I wanted to give up so many times. But I stuck with it. Several months later, I was able to run more than a few miles. Normally I'd go to the bathroom a few times per run, but I was doing it - I was fighting my disease.
As it got colder, I realized I needed to start running inside. I dreaded that first run - I love being able to take different paths and being outside. Running on a treadmill has allowed me to hold myself to the speed I want to be running. In the last two weeks, I have taken about two and a half minutes off my mile time. It seems as though I will be able to reach my next goal.
This next summer, I want to run a marathon. But I don't just want to run a marathon; I want it to really mean something - I want to be able to run it in under four hours. This seemed like an impossible feat. However, I have been pushing myself to achieve this goal.
I look at how far I have come in this last year. Through diet and exercise, I am making and achieving goals I once only dreamed about.
For the first time, I would consider myself in a real remission, not just a I'm-doing-better remission, but an I-got-my-life-back kind of remission. I'm planning on taking my spare clothes out of my backpack and no longer needing to scope out the bathroom situation.
The clinical study and my new lifestyle have given me a second chance at having a real life. Not everyone is given this opportunity and I don't plan on wasting it.

Tuesday, December 3, 2013

Crohn's and Colitis Awareness Week

Considering it's Crohn's and Colitis Awareness Week, I thought it'd be appropriate to finally write another post.
Things are going really well for me - my last colonoscopy showed only mild-moderate ulceration in my neo-terminal ileum and some moderate ulceration at my anastomosis. It was probably my best colonoscopy discluding the one performed shortly after my surgery three years ago.
I know I should be very grateful to have such a good colonoscopy, but the only reason I had one was because I was having 10-12 loose stools a day. My doctor ruled that as caused by some bug, but we said that it was sketchy that I have such up and down periods of symptoms.
Now that I know my intestines look well, I'd like to make it my goal to reduce symptoms. I want to stop running fevers and having diarrhea and having pain. Maybe that means finding the right amount of exercise and diet.
I think maintenance is extremely difficult. On one hand, doing certain exercises and eating completely healthy would probably mean a lessening of symptoms, but I was miserable eating only rabbit food. As well, I like to push myself - even though that means some workouts will end early because I'm in pain.
A patient advocate told me about a woman who was diagnosed with Crohn's disease in the '60's. She said that if she avoided everything that ever caused her pain, there would be nothing to eat or do. Sometimes, she eats things that she knows is going to cause her pain, but that's because she wants to live.

That's about where I am. It's time to start figuring out how many symptoms I am willing to live with and what kind of lifestyle that keeps me happy will put me there. Although being symptom-free would be my ultimate goal, it looks like we're not quite there.

Happy Awareness Week everyone! Hopefully we all can find the happy medium of living our lives with minimal symptoms.