These are my experiences and although you may have similar ones, do not expect this all to happen to you or your loved one. Each case is different and requires the attention of a specialist, but I'll be happy to answer questions about myself or just talk.

Friday, April 28, 2006

It Begins With Symptoms: 1994-1995

The exact date when I first started to show signs of Crohn’s disease is uncertain, but I do know it happened sometime during my 8th grade year, I was 13 years old. The only reason I remember having symptoms back at that time is because I was worried about having an accident at school, and being in a building with unmerciful adolescents is not the place to have diarrhea. I was having a hard enough time trying to not be labeled as a dork for wearing glasses, being lanky, and smart. I sure as hell didn’t need people to know that I was having chronic diarrhea problems. From fear of people finding out and the possibility of having accidents, I stayed home a lot. Not so much from school, but I avoided hanging out with friends. I missed out on a lot of things that I shouldn’t have because I was living in fear of what might happen. I regret that a lot and this won’t be the only time I let Crohn’s get in the way of living my life. I’ll get to those times when they come up, though.

The diarrhea was the first symptom that I ever had. When it first started I just took some Pepto Bismol, Imodium or a similar anti-diarrhea product and that seemed to help for a day. At least, it did at first. After awhile the diarrhea would come back sooner and I was taking more and more. During this time I was keeping it quiet from everyone I could. I was a very private person, still am to this day believe it or not, and really didn’t want anyone to think there was something wrong with me. More importantly, I didn’t want to know something was wrong with me. The only reason my family found out about my stomach problems was because the medicine was going so fast. I can’t remember how many times I was going a day back then, but I do know that I was able to get through the school day without having to use the restrooms there. The ride home on the bus wasn’t very comfortable, but I was able to make it home nonetheless.

Towards the end of that school year I might have started having some slight pains. Again, that was a little over a decade ago as I’m writing this so I’m really not sure. What I DO know is that blood started to appear in my stool before the year was up. I know this because I was tempted to ask a biology teacher about it. Not flat out, just one of those, “I have a friend…” questions that no one believes. I didn’t do it though because I could never think of a good way to phrase the question. Anyway, the first few times I saw the blood it was a small amount each time and I wasn’t sure if what I was seeing was blood or not. Then when I realized what it was and that it wasn’t going away I panicked. I quickly ruled out that it could possibly be the beginning of my transformation into a young woman because I have a Y chromosome and that just doesn’t happen for those with that special set of genes. So the first thing that came to mind was cancer. The big C. And although I was smart enough not to ask that teacher one of those “I have a friend…” questions, I was dumb enough to keep this a secret like I did with the diarrhea problem. I really didn’t want to know if something was wrong with me now. “Cancer?!? At my age?” I was a firm believer then that “ignorance is bliss” and would rather have it go undiagnosed than to know I have cancer and have to endure surgeries and chemotherapy.

After school was over for the year and I was still having problems I finally went to my doctor about it. No one knew about the blood yet though, and I kept the doctor in the dark too. Now if you’re wondering how it took me that long to go to the doctor, or more specifically why my parents didn’t push me into it, here’s why; in my dad’s younger years he had some pretty consistent stomach problems and doctors had told him that it was simply a nervous stomach. Since I was dealing with junior high and getting ready to move on to high school where the ridicule could only increase because of the higher number of students, it seemed like it was a good reason to me. That was before the blood showed up of course. Since school was over and I was still having the problems it became apparent to my folks that it was something more than nerves that were causing me gastric distress. The first few times that I went to the doctor about it he just sent me home with some Imodium, maybe it was something a little stronger, and perhaps some antibiotics in case I had some kind of infection, because I didn’t tell him anything other than my problem with chronic diarrhea. I was hoping that was enough and he’d just telepathically figure out the rest. He didn’t unfortunately.

So summer passed by and I was now into my freshman year of high school. The diarrhea and the blood stuck around like an annoying little brother wanting join the ‘big boys’. I’m not quite sure what changed my mind, maybe I was tired of dealing with it everyday or maybe I was having more pain, but I finally broke down and told my parents about the blood. Once they heard about it it didn’t take long for me to go back to the doctor and tell him. I played it off like the blood had just shown up when I told everyone though. I wasn’t sure how they’d react when they found out I’d kept something as serious as that from them for so long. Guess I’ll figure out when they read this, hehe. Anyway, once the cat was out of the bag my doctor barely hesitated before he told me that I should probably see a specialist.

I went to my first gastroenterologist sometime that fall. And my second and third, thanks to those handy HMOs. I only had one meeting with the first and second, but I at least had my first tests set up through that second doctor. I had some X-rays taken, for which I had to drink a lot of barium contrast and something that was like pop-rocks to get me to have gas. I also went through CT scans, MRIs, and ultrasounds. All of those came up with the same result. The results showing that I had some narrowing of the small and large intestine. The narrowing appeared consistent throughout my intestines, hard to tell with all the layers of guts to look through, and to my horror the C word was mentioned, along with two diseases that I had not heard of before; ulcerative colitis and Crohn’s disease. It wasn’t until January 1996, nearly a year and half (maybe) since I started having symptoms, that it was suggested that I have a colonoscopy to figure just what the heck was going on inside of me.