Living with Ulcerative Colitis
|July 17, 2013||Posted by Sarah under Health & Wellness, Ulcerative Colitis|
Over 10 years ago, I was diagnosed with Ulcerative Colitis (UC). It was a scary diagnosis. I had never heard of this disease and all I knew was that my digestive system was in serious distress. It seemed like I was just given a life sentence of discomfort and exile. How could I lead a “normal” life with a disease that had me constantly concerned with where the closest bathroom is?
If you’re not familiar with UC, it is a chronic inflammation of the lining of the large intestine/colon that causes small ulcers to form. The ulcers produce mucus and often bleed, which causes a fair amount of discomfort during what we call a “flare.” Sounds lovely right?
The most frustrating thing about UC is that there is no definitive cause. Research has shown that it is possibly linked to genetics, environmental factors, auto-immune disorders, you name it. But there is no concrete evidence to show one thing or the other or a combination of things. Because of this, treatment options aren’t concrete either. There is a lot of trial and error with various medications including steroids and immunosuppresants, all of which can have some pretty serious side effects.
And because of all of these things, I often feel like this…
Living with UC is no picnic. When I’m in the middle of a flare, I often feel lethargic, depressed and achy. Getting out of bed can be difficult, let alone working or exercising. I’ve been on a variety of maintenance medications over the years, some of which have led to serious side effects.
In 2007, I found myself hospitalized for 2 days because one of the medications caused acute pancreatitis, one of the most painful things I’ve ever experienced. I currently am on a combination of a 5-ASA anti-inflammatory drug and steroids to keep my symptoms at bay, but some days that doesn’t even work.
It hasn’t been fun and it hasn’t been easy, but unfortunately these are the cards I’ve been dealt so I’ve had to learn how to cope. And thankfully, I still have many days that I feel like this…
I wanted to share my story of living with UC and hopefully encourage more people to talk about it. For the first few years of my diagnosis, I very rarely talked about it. Frankly, I was embarrassed! Who wants to talk about their poop problems?? But at some point I just got over it. I needed to talk about it. I didn’t feel good and I didn’t want to make excuses for why. I wanted people to know the truth and also to educate people who might not be aware of UC. Over 700,000 people are suffering from UC, why is no one talking about it?!?
The real turning point for me was when I started running and exercising more frequently. UC plays a part in everything I do because I have to listen to how my body is feeling and not push myself too hard on bad days. It also means knowing where bathrooms are at all time, which is why training for races can often prove difficult and discouraging. I find myself having to map out routes where I will pass public places if needed. I also have to carefully plan out my pre-run meals and leave enough time before going out for things to work through my system. There have been way too many close calls! It is because of this that I often struggle with motivation and putting in the miles…it’s easier to just avoid training, but that is never the answer.
In early 2012, I found Team Challenge, the endurance training and fundraising program for the Crohn’s and Colitis Foundation of America (CCFA). Not only was this a great way to improve my running, but I was able to fund raise for an organization that is supporting research for UC! The group was amazingly supportive and they helped provide tips for exercising with UC. (Read all about my experience here.) I also couldn’t believe how many people came out of the woodwork during the fundraising process to tell me that they either suffered from the disease or knew of someone who did. It was empowering and opened up an amazing dialogue. Again, why weren’t we talking about this before?!?
One of my hopes with RAD Living is to create some sort of dialogue and also show people that a UC diagnosis isn’t the end of your life, it’s just a lifestyle change. You can still do whatever you set your mind to, it just might be in a different way or with some restrictions. I’m proof of that! I’ve completed a marathon (albeit slowly), 5 half marathons, and I can pick up 220 pounds. HELL YEAH! I might never be the strongest or the fastest, but I’m still doing it and you can too.
So plan on hearing about my ups, my downs, my bowel movements, my inflammation, and whatever else randomly comes to mind in the future about UC. I want to be honest about this hateful disease and I hope that sometime in the future a cure will be found. But until then, can you tell me where the closest bathroom is???
Do you have Crohn’s, Colitis or any other chronic illness that has made you make a lifestyle change? I want to hear your story!