I have read several stories on this wonderful site. I truly feel for everyone who has to deal with this disease. I seem to be different from most cases, anecdotally and statistically. I was diagnosed in September of 2010. I am in my 40’s. As it turns out, you have better odds of winning the lottery than getting this particular disease at my age. I still haven’t started buying lottery tickets since I figure this means I probably don’t have good luck.
It started in late August with urgency and frequency. Then it started to look like I was filled with little balls of white cotton because that is all I saw when I looked in the porcelain alter. When it wasn’t the cotton, it had mucous and blood. I had gone to my primary care physician who was actually an NP. They did some tests and asked me to try gluten free. Nothing improved. In fact it got worse. I told her there was blood present but I guess she didn’t really process what I said because they sent me home with a stool test kit that read, plain as day, not to use if blood is visible. So, 3 weeks of this has gone on and 1 evening the white cotton balls aren’t white anymore, they are now red. I panic. It is clear something is very wrong here. I had been looking up the symptoms all during the 3 weeks and found 3 choices: Crohn’s, Ulcerative Colitis, or (gulp) Cancer. So I used my trusty digital camera and took pictures, printed them out and showed up at her office the next morning insisting on seeing her. She got 1 look at those pictures and her eyes boggled. Now I had her attention! And a valuable life lesson… take pictures. So she had her assistant call to get me an appointment *stat* to have a colonoscopy and EGD with the GI practice in town. I saw the form they faxed. It really did read ***STAT***. That apparently has little affect. The appointment was scheduled for over a week later. So I go immediately to GI office to get the paperwork started. My obvious fear struck the person who processes the paperwork because she moved my scope up to 2 days from then and switched to a different doc that she liked better.
So, I show up for my scope with my pictures and my fears. I am holding back tears as best I can but when they take me back, I can’t really stop them. I had never really been sick before. I have never broken or even sprained anything. Everyone was very nice and reassuring. So I wake up from the scope and a couple of minutes later, the doctor comes in. You have ulcerative colitis.
I thought this wasn’t going to be so bad. I never had pain when it started. I was put on 3 different medications and all seemed to be going well. Alas, that was temporary. I have tried many meds and so far we still have problems getting it under control. I now know how painful it is. I start Remicade in a few days. I was supposed to have started before now but that is a long story. I used to fight the thought of meds but I am working on not thinking that way anymore. If I had cancer, I wouldn’t think twice about them using meds to attempt to put the disease into remission. Why am I fighting it with a disease that also isn’t curable and they don’t know what causes or cures it? I am still working on that mind you….. I did read an article in the NYT that made the most sense to me. The guest columnist wrote that there is a genetic predisposition that encounters an environmental trigger and, voila, the disease is now present. Unfortunately they have no idea what the trigger is. It doesn’t change the fact that they still consider it an auto-immune disease per the article.
Thanks to all those who have posted their stories.
One last thought:
“Where is the life that I recognize? But I won’t cry for yesterday, there is an ordinary world somehow I have to find. And as I try to make my way to the ordinary world, I will learn to survive” Duran Duran
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