A while ago, in December (I think) I posted on this site about how my ulcerative colitis was back after only a few weeks of respite. What started off as a typical flare in early December, quickly became something that I simply couldn’t handle. I ended up getting very very sick. More sick than I’ve ever been before. It was strange. I was on some new steroids and taking Pentasa (similar to Asacol) and I was just waiting for the medicine to kick in.
I would have days of extreme energy – well extreme being that I could go out and get groceries…. But most of the time I simply lay in bed or on the couch. This was new for me. In the past I’ve been able to continue with my bike racing training through my flares. And I’ve also been able to eat food still. Not this time. This time was different. But I didn’t realize it. Guess this is part of being sick.
Finally on Dec. 23, my husband insisted on calling my sports doctor here in Belgium (I’m Canadian living in Belgium where I race my bike professionally in the winter….) – this ended up with me going to the hospital in Herentals on Dec. 24 for a colonoscopy. By this time, I basically hadn’t had anything to eat or drink for three days. Anything I put in my body was coming straight out. My body was having uncontrollable gag reflexes – apparently because I was so dehydrated. I basically lay in bed only moving to make the dash to the bathroom. But I was still convinced that I would be “okay” – I didn’t want to go to the hospital – I told my husband I could get through this flare like I had every other time….
Well, I didn’t make it through on my own. I ended up staying in the hospital for one week – from Christmas Eve to New Year’s Eve. Before the doctor even did the colonoscopy he said he was going to admit me. I guess I looked pretty bad – pale, weak, my lips were so dry and cracked they were literally flaking and my normally bulging veins had all but disappeared. After an attempt at a colonoscopy – my colon was so inflamed the doctor couldn’t get the camera in, I was admitted.
This is the first time I’ve ever been admitted to the hospital for my ulcerative colitis. As much as I didn’t want to be there, I realized it was the only place for me. I was immediately hooked up to an IV which dripped various fluids into my body as well as antibiotics, steroids and other medicines. The worst part about this was the IV – my veins had all collapsed so every day the nurses had to literally hunt around for a new vein – my arms are still sore two weeks later.
Two years ago I was diagnosed with mild ulcerative colitis. I learned while in the hospital that my ulcerative colitis has “grown” or “spread” and is now considered to be at the top level of severe and this disease had consumed my entire colon. I wish I knew why this happened. One of the mysteries of the disease I suppose.
Previously I’d been using steroids to treat my ulcerative colitis. I was taking Budesonoid and had just tapered off it at the middle of November and then all of a sudden two weeks later my ulcerative colitis came back… My new gastro doctor here says this is because my ulcerative colitis does not respond to steroids and that this cycle will continue to repeat itself. He did have to put me on steroids again in the hospital to help get things on the healing path again but I’m now weaning off of them again. The big change for me is that I’m now taking Imuran. So far so good – well I’m only two weeks into this new drug, but the blood samples and general body response have been pretty positive. I’m crossing my fingers that the Imuran works. I’m also taking VSL#3 and Pentassa.
So where does this leave me? Well, my cyclo-cross season is over. I lost 7 kilos during this ordeal (I’ve never really lost weight during a flare before). I’ve lost a lot of strength and energy. I feel like this disease has started to “define” me a bit. It has made me really look at my life and consider what is most important to me and how am I going to guarantee that I keep this things front and center. So ulcerative colitis is “defining” me but not in a negative way.
I’ve changed my diet – moving to an 85 per cent vegan diet with no gluten or dairy (I have the flexibility to eat meat, fish and eggs when I want). I’m trying really hard to keep my stress levels down. And I’m really just trying to keep things in perspective. I have a lot of unknowns right now. I’m worried about how my body will react when I’m finally finished tapering off the steroids. I don’t know if I’ll be able to regain the muscles and fitness I’ve lost. I’m really scared of the next ulcerative colitis flare. But these are things I’ll just have to deal with as they come along.
It has taken me a long time to sit down and write this blog post. I think because I’m just so tired of talking about, thinking about and being sick. I kind of want to “pretend” that I’m not sick. But now I realize that I am sick and I have to admit this. My ulcerative colitis is not something I can take lightly. In the past this was the case – my life was generally uninterrupted by this disease. But not now. It took over my racing season – effectively ruined it, prevented me from doing my job, put me in the hospital, caused tremendous stress and fear for my husband, parents, brother and family. I have ulcerative colitis. The question remains what do I do with it now?
One thing is definite – I’m going to continue to be public and speak out about this disease. We all have to work together to raise awareness and really put a public face on this disease. Through it all, we are not victims. We have this – it isn’t fun but life goes on and we need to show people that we are all living “good lives” with ulcerative colitis. So this is where I’m going to leave this blog post with a question for you:
How are you going to put a positive public image on ulcerative colitis? What are you going to do in 2011 to help show others that ulcerative colitis does not control you?