Since I last wrote I've been busy spending time with my friends. One thing having a chronic illness has taught me is the importance of time, of being with those I love and telling them every moment how much they mean to me. You never know when it might all end.
As promised in an earlier post, here's how it all began. It started when I was about 14 with stomach problems. Now, when I say "stomach" what I really mean is "gastrointestinal issues" ....you get the drift. It started in high school about the time my parents divorce was in full swing and I was admittedly pretty screwed up. The doctors all said it was nerves, or related to my period. I'd have terrible, painful bouts of diarrhea. Yuck. They decided to call it irritable bowel syndrome (IBS), although they never did any testing to see if it was anything else. The medical establishment often says "you're too young for it to be anything too serious." Yeah, right. By the time I was around 20 it was still bad, and I went through a series of testing for both lower and upper GI issues - sigmoidoscopy, barium enemas, colonoscopy....I lost track of everything they checked. They eventually decided it was ulcerative colitis. Unfortunately, I was apparently in a bad space and either didn't remember what they said or it didn't mean anything to me. So I did nothing about it.
So, as expected, I was still sick off and on - well, more on than off I'd say. I'd often chalk it up to stress, or hormone issues, or something I ate, or.....the list goes on. I eventually listened to a doctor I had that was trying to case manage all of my issues and started a calendar. I wrote down every day how I felt, what I took for it, what I ate, what I drank...everything. I did this for six months. When I looked at the information, I could clearly see patterns around certain kinds of food, certain times of the month, that seemed to make it worse. This was a HUGE step for me. It finally gave me some control over it, some idea of what I had and how I could manage it myself. I wish I had done it sooner, but better late than never. This was a big step in the right direction. Unfortunately, it would take several more years for a diagnosis. Because I had also been diagnosed with endometriosis several years prior after two laparoscopies, as well as interstitial cystitis after the birth of my son, it wasn't easy for the doctors to determine what was doing what to my body. It became a process of elimination.
The first thing to go was the uterus - actually, it was a full total abdominal hysterectomy (TAH)...that means the uterus, ovaries, cervix, and anything else fun that they find. They did it abdominally in order to clean me out as well as possible. Endometriosis can sit in a variety of places in the body, and in my case it was on several organs. They also found out when they got in there that my uterus has collapsed onto my colon. Apparently this is all genetic, but I didn't know it at the time. So, out it all went. I was 33.
I was good for about a year after the hysterectomy, then the stomach issues started again. This is when I began the calendar I mentioned earlier. Then there was more testing, and another colonscopy with multiple biopsies, resulting in the diagnosis (again) of ulcerative colitis with indeterminate crohn's disease. This is also genetic in my family - which I also didn't know until my uncle mentioned it to my mom right after my diagnosis. This finally led me to finding the correct treatment...well, after the first doctor put me on the wrong meds (dipentum, which is for upper colon) and another doctor got me on the right ones. It's been about five years now on the new meds (Asacol) and I actually feel like I have a life now. A big part of that remains managing the illness, how I feel, what I eat...all that stuff. I have to take the meds religiously - 9 pills a day. I thank the universe every day for my health insurance - the pills would be upwards of $1000 per month. I get them for a $5 co-pay.
Even when managing this illness, mostly what I think about is how grateful I am for every day I have. And, how especially grateful for those days when the pain isn't severe. As I look back on it, sometimes I'm pissed off at how long it took to get it under control, years wasted. The longer UC is untreated the greater likelihood of being surgical - that is, having the colon (or parts of it) removed. Maybe I just wasn't ready to know, or understand way back when. I do know that it's shaped my life, made me a better person because I don't take anything, not one second, for granted. In everything, there can be a positive - you just have to look for it.
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