Throughout my teen years I had problems with diarrhea and other gastrointestinal issues. But I was very athletic -- it was rare for me to only play one sport at a time -- and I was involved in other school activities, too, so my attitude was that I didn't have time to be sick. But because my health issues were bathroom related, I was too embarrassed to tell my parents. I never said anything about it. At the same time, in my senior year of high school, a rather large bump developed my shin. I had it surgically removed, but nobody was able to tell us for sure what it was.
A few years later, I lost twenty-five pounds while pregnant with my first child. I knew there was something wrong at that point. My OB doctor ran stool studies and did blood work, and while they couldn't do a colonoscopy because I was pregnant, they diagnosed me with ulcerative colitis. For the next decade, my GI doctor assured me that I didn't need surgery to address my condition. My husband played a huge role in helping me find my voice and advocate for myself, and in January 2014, another GI doc I went to for a second opinion finally diagnosed me with Crohn's. That doctor also determined that I did, in fact, need surgery. Badly.
Oddly enough, I also learned that the bump removed from my leg when I was in high school, all those years ago, was likely related to early symptoms of Crohn's.
My dad and I were, and still are, very close. He coached me throughout my sports-playing years. He was a football coach, and my sister and I sort of grew up together on the sidelines watching football. We took naps in the weight room while his players were working out. We'd fall asleep listening to Metallica. We grew apart as we grew older, but today we're as close again as when we were little kids.
My mom passed away in December 2014, but through the years my parents were always there for me. It seems so stupid now, looking back, that I never wanted to talk to them about my illness. I guess I just didn't want to admit that I was sick. But maybe an even bigger reason is that when I was 16 or 17 years old, how was I going to start that conversation? "Dad, I'm having diarrhea all the time. Oh, and by the way, there's blood in it. Now what do I do?"
If there's a funny part to any of this, it turns out that I'm far more attentive -- maybe too attentive -- to what my two daughters might be going through. I'm constantly asking them, "Okay, let's have it. What does your poop look like today?"
The medication I'm taking these days appears to be keeping me from getting worse, but I'm certainly not getting any better. I am in constant pain, and I have the arthritis that comes with Crohn's. I have to see an RA doctor for that. There are days that I get out of bed just to get my kids to and from school, and other than that, it's a day spent in bed. It's very, very hard.
But you know, this disease is so different from one person to the next, and that makes giving any specific advice not only difficult, but sort of pointless. I know that some patients end up going to their doctors with a particular concern because, for example, someone in their support group had a frightening symptom come out of nowhere, and they want to know when they should expect to see that happen to them. As annoying as this advice might sound, you really do have to just take things one day at a time, and pay attention to your body and your symptoms. You can't predict what's coming next.
Stay hydrated. Stay on top of your medication. Never miss your doctor appointments. Make sure you go to the scopes you're scheduled for. Believe me, I know it sucks -- I have to get them three times a year.
Finally, if you don't feel one hundred percent confident in your doctor or your entire medical team, keep looking. I was with the same doctor for 10 years, and he kept saying everything was fine even when I had a feeling, deep down, that my condition was getting worse. I like him as a person. He was very nice. But he was wrong. I was right.