Prometheus IBD diagnostic

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.


Some Boring Updates...

The last month or so has been very low key and quiet.  Work is only now starting to pick up with the anticipation of spring.  I work in construction so the ebb and flow of work follows the change in seasons.  There is a new energy in the air with the first taste of spring.  People are happier and it feels good to go home and eat dinner while it's still light out.  Before you know it, we will all be complaining about the heat again.

About a month ago I contracted a mystery illness that landed me in the hospital for several days.  Although I should have gone way before I actually submitted myself to the fact that I was fucking sick.  I'm so familiar with the hospital routine, with waiting in ERs for hours, with feeling like all you want to do is lay down but instead you have to talk to what seems like a million people before anything finally feels better again.  I resisted and resisted throughout my work week and by day five the boyfriend peeled me off the bed with puke bucket in hand and drove me to the ER.

Doctors never really gave me a definitive diagnosis.  It wasn't Crohn's but there were some Crohn's-like symptoms.  Essentially nothing stayed in my body for more than ten minutes.  So after days of that, I was in bad shape.  What made me feel like I could push through it was that I had no fever and no abdominal pain.  NONE.  Tests at the hospital confirmed that I had neither a virus or bacterial infection, however, those same tests were also showing that I was extremely sick because my white counts were elevated as though I did have an infection.  After one day in the hospital on fluids and antibiotics, I was already itching to get out of there but they kept me a couple of days until all of my levels stabilized.

The worst part of the whole experience was the fact that nurses, doctors, and IV techs had an extremely difficult time administering IV fluids and extracting blood.  Apparently I have a lot of scar tissue in the bend of my arms and other areas where I was frequently prodded in my symptomatic days.  I was going through three or four IVs every night.  They were trying to avoid putting a port in my neck or leg but if they had known how much trouble it would be to administer medicine to me they probably would have done it right away.  Anyway, I left the hospital with a lot of bruises but I felt like a million bucks.  The best part? Knowing that I have amazing health insurance and I don't have to stress about hospital bills and ER copays.

In Crohnsy news (that's what the boyfriend calls it) I am going to have an IBD diagnostic blood test done as soon as I get the clearance from my insurance.  Doctors in the past never really felt like it was necessary because symptoms are ultimately how they base their treatment decisions.  My diagnosis was never really solid and it was always uncertain which type of IBD I had.  However, I am seriously considering some options in the future to determine if I am a candidate for continent ileostomy surgery, which hopefully this test will support.  More to come on that.