My story? Man it feels like
such a long time, but it really hasn't been has it? Some of you
know it from the beginning, but here goes nothing...
I'm 28, from Chicago. I've lived here my whole life and will probably
never move anywhere else. I work right now as a computer
programmer, but will be attending graduate school this fall to (finally)
work towards my PhD in Clinical Psychology. The hiatus is over, so
to speak. I'd like to work with kids with chronic illness,
and do neuropsychological research.
I had a roommate in college who had Crohn's, and my parents had a
neighbor with it when I was growing up. So I knew what it was. I knew
what it could do to you. I also saw what resiliency was in those 2
people, so it sort of helped when I got the big news.
Since I can remember I've had a "nervous stomach". Like if I got upset
about something or really anxious, I'd get nauseated to the point
sometimes I'd throw up. I would also lose my appetite for weeks.
I'd get hungry, but then I'd take like 2 bites of food and be done.
Needless to say I'd lose a good 15 lbs when that happened. But for
whatever reason, this didn't cause me any alarm. I figured it was just
me and hey who doesn't like keeping their weight down? :) So I never
went to the doctor for it. I thought about it sometimes, but it didn't
really impede my life.
In October 2001, I came down with shingles. Which was odd for someone my
age to get from what I could tell. So I think that was signs that my
immune system was doing something goofy. Come the following March 2002,
I was at work, man I can remember this like it was yesterday. It was the
day that changed my entire life. Went to the bathroom, had some
diarrhea, and looked in the toilet like "what the ???" Full of blood. My
mind raced like "do I have my period? Did I forget to take my birth
control pill??" Unfortunately I had no good reason for it. And it wasn't
coming from the right end. It took me about an hour before I told
anyone. The first person was my boyfriend, who was my roommate at the
time. He told me to call my doctor because he had a friend who had that
and it turned out to be something serious. Great.
I have a fantastic PCP who will take you that day if you call with the
right story. So apparently this was the right story, and I was at the
doc that afternoon. The day of my first butt exam :) Man I was
mortified. He asked all sorts of questions, and ordered my first stool
test. YUMMY!
On my way home I called my friend, who has IBS and asked for a GI
referral. She knew of one at Northwestern, where my PCP is so I took
down his name for my follow up with the PCP. All my tests were normal,
so off I went to the GI. It was during this waiting period that the
first pains on the right side started. This is also when the
diarrhea started, around 4-5 trips a day with about 15 a day every other
week. I knew something was up since I never had this problem.
First test I had was a colonoscopy - normal. Woohooo! Then I went for
the first Small Bowel Follow Through. I got a call from the GI on my
voicemail at home, saying they found ulceration and inflammation in my
bowels, although mild. And that I needed to come in so we could discuss
it. He told me I had Crohn's at my next appointment in May 2002, and
gave me a pile of Pentasa samples and some CCFA booklets. I wasn't too
freaked out because I felt ok.
About a month and a half into the Pentasa I went back, and the stuff
wasn't working. So I got put on Entocort, which I wasn't too happy
about. I started getting low grade fevers around that time too. This is
about August of 02. A few weeks into the Entocort, the headaches
started. I found out at my 8 week follow up that the crap gives me high
blood pressure, so I was told to taper off of it. When asked how the
symptoms were, I said they were only a little better and that I still
had pains in my side. So I got my first CT Scan. Commence the next 10
months of diagnostic limbo.
After I was taken off the Entocort, I got put on cipro then flagyl,
which did nothing. My GI was thinking I had some sort of infection. The
CT came back normal, so now I was this enigma. And I was annoyed. I was
taken off all medication until they could figure out what the problem
was. "Maybe it's IBS". I knew it wasn't IBS. The first GI did a flexible
sigmoidoscopy to look for the fissure I had symptoms of (couldn't find
anything), repeated the colonoscopy (normal but then found the fissure -
ugh), SBFT (abnormal), Schillings Test, and ordered the Prometheus IBD
test (abnormal levels of pANCA). About this time the "ache" in my right
butt cheek started. I brought it up, and it was attributed to the
fissure I had, so I never brought it up again. Even though every day it
felt like I'd done too many reps on the Stairmaster until about February
03. After the Prometheus test came back weird, I asked the GI if he'd
talked with any of the IBD specialists in the group. He said he had and
that they said for me to do the capsule endoscopy. Something my
insurance didn't cover at the time, so I started the appeal process. I
also got moved to my current GI, who's a leader in inflammatory bowel
disease research and a wonderful doctor.
He figured out it wasn't IBS, it was something inflammatory, but what he
didn't know. He was thorough to say the least. More tests.
Repeated the CT scan, as he was thinking fistulizing Crohn's (which he
later turned out to be right). It came back abnormal. So they reviewed
the first CT scan, which in actuality was abnormal and showed the same
enlarged lymph nodes as the second one, just smaller and "easier to
miss". He started talking about exploratory surgery when my appeal for
the CE was denied by my insurance. This brought me to the absolute worst
test - enteroclysis. When that came back normal, I almost lost my mind.
I was so sick of tests, my symptoms were at their worst since I started
going to the doc over a year ago, I'd lost 15 lbs, and they had no
answers for me. The last test I did was an indium WBC scan, which came
back inconclusive. He was teetering on putting me on Imuran and
Remicade, but was worried about the long term commitment and "what if he
was wrong?" I understood, but wasn't very happy.
We're into May of 03 now. The ache in the butt was replaced by a small
bump. At first I thought it was a zit, but it never went away. Only
gradually got bigger. Ok so maybe it's a mole? It never hurt, so I never
brought it up to the GI. Then in August it developed a small hole and
started to leak. So I emailed my GI about it and asked if it could be a
fistula. He told me to get in to see him that week, and it took him
about 10 seconds to figure out that it was a fistula. Lo and behold my
quest for Crohn's was over. He sent me up to see the surgeon, who said I
had a lovely abscess with it, and that I had to have surgery. So Aug 14,
03 I was re-diagnosed, FINALLY diagnosed? with Crohn's. I had surgery
for the fistula on August 19th. I started Imuran Aug 20th.
In September, I began taking Remicade. The first infusion went off
without a hitch, and I felt better within days. It was a rather
dramatic change for the better, so I was stoked. I had my 2nd
infusion 2 weeks later, and again had no problems during it. After
the infusion, a few hours later, I started to have joint pains in my
arms and shoulders. This persisted for the next month. There
were days it really hurt to move those joints, but I was determined to
stay on the Remicade since it was working so well. My GI symptoms
were all but gone. During my third infusion I had a full reaction
during it, with a fever and hives, even though I was pre-treated with
prednisone. It took 9 hours to get through it, but we finished it.
It was highly discouraging to not be able to continue the Remicade
treatments since it seemed to be the only drug that truly helped my
symptoms. I could eat anything I wanted again - including the
dreaded popcorn. So my GI and I started to discuss other options.
Unfortunately there aren't many drugs left when Remicade fails and you
don't tolerate steroids. I began asking about a drug in clinical
trials - Humira. Having a friend who works at Abbott, I got more
information on the drug and went through another appeals process with my
insurance. This time to get coverage for Humira. My GI
jumped through hoops to work with them, but again I was denied twice.
My only option was to enter the clinical trial at the University of
Chicago, which I've since started. I received my loading dose of
Humira on February 12th, 2004. It is showing similar effects as I
had after my first dose of Remicade, so I'm hopeful. The trial
will continue for about a year, with an optional open-arm if I start to
do poorly later on.
Anyway, that's my fun story. I'm hoping
for some sort of break here. Considering the drama of the past year and
a half or so, I think I deserve one. :) It's definitely not as bad of a
story as others have had, and overall my life impact has been low. I can
still do most of the things I could before, I just hang out with doctors
a bit too much.
Thanks for reading!
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