Since my diagnosis over thirteen years ago, my illness has transitioned into a million different labels by specialists and surgeons. For the most part, doctors assign patients who suffer from Inflammatory Bowel Disease (IBD) as having either Crohn's Disease or Ulcerative Colitis. It is a necessary simplification of a complex disease. If you have Crohn's your whole digestive system, from mouth to rectum, is affected. If you have Ulcerative Colitis, then yay, you're one of the lucky ones! You only have a disease of your colon and rectum!
In the beginning, my illness presented itself as Ulcerative Colitis and for a while that's what I told people I had. Unlike its cousin Crohn's, Ulcerative Colitis flare ups appear as continuous inflammation rather than patchy. From what I can remember mine was always very active in my sigmoid colon. Bright, red bleeding was one of the first symptoms I had before I even felt sick. I played a three month field hockey season bleeding every time I shit, but I felt fine, and told myself as soon as the season was over I would address what I already knew was probably IBD.
It was after my first surgery that a biopsy told me I had Crohn's Colitis. What this meant was that yes, my small bowel was very healthy, but my large bowel mimicked the symptoms of Crohn's disease. The inflammation in my colon penetrated to the deepest layers of my intestinal wall and then I soon learned another term to add to my vocabulary: Fistulizing Crohn's Disease. I cannot go into detail because there is no possible word or phrasing of words to explain them. Fistulas fucking suck. Period.
So at my present state, when people ask, I tell them I have Crohn's disease. If my course of events followed a dictionary definition of Ulcerative Colitis, I would probably still tell most people I have Crohn's and leave it up to them to ask more questions. People don't know the words "Ulcerative Colitis", they seldom know "Crohn's Disease", but any idiot knows the word "disease".
There's a lot of reasons for bringing this up.
I've often echoed this sentiment on here before, but you never have any clue what someone else is going through in their life. I recently reconnected with a friend from high school who was just diagnosed with some serious medical problems. Nothing life threatening but autoimmune diseases, like mine. She told me about the trials of trying new medicines only to wait for months before doctors officially deemed their newest attempt as a failure. She told me how hard it is at work because she feels like people view her as lazy when she's late or has to leave early. She told me about all of the friends she has lost or cut out of her life. When you have a chronic illness, you simply have zero time for bullshit, and sometimes that means you keep a tight circle. Talking to her was like talking to myself at 20. She participates in message boards, goes to support groups, and reads every possible thing she can about her illnesses.
Another point that prompted this post was that you can see how complicated, how complex, how indescribable, how undefined IBD or any illness can be. I cannot tell you how many times within the first week or month of a job I've told someone I have Crohn's disease. Not because I thought they should know, but because they brought up some horrid generalization or blatant misinformation that kept me from being able to keep my mouth shut. I like to explain it like this; The digestive system makes up the majority of your abdomen. Intestines are something like 20 feet long (I'm guesstimating) and someone who is symptomatic at foot three of intestine is going to feel a lot different from someone (like me) whose disease was most vicious in my rectum. Everyone's disease is different, their treatment is different, and what works for one person doesn't always work for another, even in the chance that they do have similar clinical symptoms.
With that being said, right now three vials of blood are on a plane to San Diego where some person in a lab coat is going to do whatever it is they do to tell me once and for all if I have Crohn's disease or Ulcerative Colitis. I don't know how I am going to feel when I find out because I am healthy presently. It's important to know only for the fact that if it's determined I have Ulcerative Colitis, then I can move forward with the possibility of, at some point in the near distant future, having continent ileostomy surgery.
I could write so much more, but I'll leave it at that.
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