Today is a strange anniversary for me. Today, one year ago, I was admitted to the hospital due to a nasty ulcerative colitis flare. This was my first time in two years with the disease that I’d been admitted to the hospital. I had been “battling” this flare for a good four weeks and believed I could “get it under control”…
Yes, most of us know how this goes. No such luck. My poor husband had to sit by and watch me deteriorate – unable to eat, drink and spending my days either wiped out in bed or rushing to the toilet. During that last week before I finally agreed to go to the hospital, he would ask me every two hours if I was ready to go the hospital. And each time I would tell him that “I was getting better”…
When I think about this time, my heart breaks. It was only once I was healthy again did I realize the strain I was putting Marc under. The stress of seeing me so sick and unable to function was ripping him apart. The strange thing was that I thought I was helping him by telling him I would be okay – I fully believed I was getting better. A sign that I was sicker than I knew.
The good news is that after only one week in the hospital – checked in on Christmas Eve and discharged on New Years Eve – I was better. Thanks to the wonderful care from my Belgian healthcare team, my flare was gone and I was able to eat some food without fear of what would happen. I learned later from my doctor in Ottawa that if he had seen me with my colon the way it was – he would have removed it. So I’m lucky to have been here in Belgium when I got sick (of course this did end my season of cyclocross racing but perspective is an amazing thing).
I went through a roller coaster with medications and side effects of this flare for a long-time. My veins collapsed and I still have terrible scarring in my veins. For a week after leaving the hospital I couldn’t straighten my arms due to the tightness in my veins. I can no longer eat gluten, dairy or any leafy green vegetable. My circulation is very bad now so I spend most of my time in a permanent “chill”. Due to the Imuran a lot of my hair fell out and I became very ill (wiped out my white blood cell count).
But here I am – one year later – in a complete remission.
I do have the odd stomach cramp but I think this is normal for folks like us. I was able to start riding my bike again and start racing again. In fact I’m in Belgium right now – though my season has been cut short due to a crash that has left me with a fractured vertebrae in my spine. Yes, rotten luck – two unlucky years with health and injury.
Or am I lucky? Yes, I think I am. I am healthy. My ulcerative colitis is fully in remission. I still have my colon. I’m only taking 1600 mg of Asacol a day. I have my life back. Sure it is frustrating to be sitting here in Belgium and not being able to race because of this injury – but I could be in a much worse situation.
Perspective. Don’t every lose sight of this. I know for a lot of you, you’re very sick right now. But trust me – it will get better. This past year I started a support group in Ottawa for people with Crohn’s and Ulcerative Colitis – I’ve met some amazing people who have been very very sick and are no looking and feeling good. It does get better – I promise. Don’t get me wrong, I worry about going into a flare each and everyday – but this doesn’t stop me from living my life.
All I can say is that what is around the corner is worth pushing through your flare for. Accept the help from family and friends. Reach out if you’re afraid, sad, depressed and just feeling downright rotten. People want to help. You will get better. So whether you’re in a flare or in a remission – set some goals and figure out how you’re going to achieve them.
(You can stay up-to-date with my life on and off the bike over at http://ottawa.cx) (If you’re interested in starting your own support group – drop me an email at firstname.lastname@example.org or find me on Facebook – I’ll help you out.)