Thursday, May 19, 2011

For Those Who Suffer

Do you ever have that one secret you keep? You know, the one that if you shared it, it would either make you feel like a totally new person OR have horrible consequences once you let it out? Yeah, I've got that secret and have held onto it for over five years. And TODAY is the day I tell you. Will I feel new? Or will I regret it? To tell you the truth, I honestly don't care.

A little over five years ago - nine months after the birth of Piper - I was diagnosed with colitis.

All my life I have had problems with my colon, woohoo, fun stuff people! It started to progressively get worse when I was a teenager, but that solely had to do with "not being able to go" if you catch my drift. And I suffered through that with a few trips to the hospital and enemas that followed. It was awful, so I thought, but it was my life, and I accepted it. I tried all sorts of medicines - mostly laxative based ones that would curl me up in a ball, the pain was so terrible. They worked for a day and then I was back to square one the next day.

When I got pregnant with Piper, all my problems seemed to go away. It was the first time I was "regular" and man did it feel good. Then nine months after I had her, I started to get totally different systems then I had earlier. My stomach was always a mess, I could not keep anything in, and I started to lose weight. Now in the beginning, I admit that was not such a bad thing. But, after I continued to lose, even I started to get worried.

I went to the Dr and it revealed the colitis. To stop the symptoms, they put my on prednisone - a steroid based drug. I read up on the side effects of this and it scared the shit out of me - no pun intended. Reluctantly I started taking the drug and the symptoms seemed to clear up. I tapered off the drug for awhile and when I did my symptoms seemed to get even worse. I went back to the Dr and had ANOTHER colonoscopy done.

Side bar - People I am the queen of colonoscopies. I've had 6 at the ripe ol' age of 34. The only positive thing I can say about them is I sleep like a baby afterwards!

This test showed that my colitis had gotten progressively worse and turned itself into ulcerative colitis - meaning part of my colon and rectum was covered in ulcers/lesions. Isn't this fun?! My life really ceased to exist at that point. I could not go out to eat or out in public for fear I would not have enough time to make it to the bathroom. ANYWHERE I went I had to make sure that 1) I had not eaten several hours before or 2) There had to be a bathroom close. EVERYWHERE I WENT I had to know these things.

For those who know me, this was debilitating. It's an incredibly dirty and humiliating disease. You never feel clean and for me it made me feel horribly unattractive. I was and still am a very healthy person - on the outside. I'm very into fitness and eating healthy and with this disease, I couldn't comfortably do the things I loved to do. It consumed my every thought. I no longer had control over my body. My weight got down to 132lbs (and I'm 6' tall).

I remember telling Mark at one point, I honestly thought this disease was going to kill me.

Now people, I am stubborn - one of the most stubborn people I know. While I was sick and losing all sorts of fluids - namely blood, I still worked out. It made me feel like I had some ounce of control of my life. If you ask my ex-husband, he would say this made it worse. If you ask me, it helped me maintain my sanity.

I went through stages for about 3-4 years of being in remission to "having a flare-up". You learn these fun terms when you have colitis. "Hey, how are you?" "Great, just gotta minor flare in my ass, thanks for asking!"

I finally started to see another Dr and she gave me hope that things would get better. We started a new treatment - still taking the steroid at a higher dose - and added in a drug called Asacol. That drug, for me, has been a Godsend. I feel better than I have in a long time. I feel like I have got my life back.

Over the years, I have learned what foods to eat and what foods to stay away from - that will be a part of my life forever, unfortunately. But if you ask me, it's a fantastic trade off for feeling healthy.

In three weeks, I am going to run a half-marathon. This is unbelievably overwhelming and a huge accomplishment on so many levels. When I was diagnosed, I could not run for longer than a mile or two because it would jar my colon so much that I had to stop and run to the bathroom. I thought I would be deprived of doing one of the things I loved to do most in this world. Take that colitis and p.s. you can suck it!

I find myself getting upset with people who take their health for granted - people who have the ability to exercise and maintain their health, but chose to make excuses as to why they can't. I have little sympathy for that. I've become jaded in that regard and I'm afraid it's something I'll never get over. I get upset with family members who know I have this disease, but don't take the time to really understand what it's about and how hard my life has truly been for these five+ years.

On June 4, at 7am, I am running not just for me, but for all the people out there who suffer from some sort of disease that they feel they have no control over. And the people who will be there cheering me on are the people who have held my hand and seen me cry because I had almost given up hope of conquering this monster. I am most grateful for those handful of people.

1 comment:

prednisone said...

I luckily tapered succesfully off of prednisone, but this is certainly a beast of a drug. The side effects have not been easy to deal with, and most likely permanent.