If you're living with a chronic illness, you're in the right place.

Monday, July 18, 2016

Déjà Vu

12:00 PM Posted by Tiffany Taft , , , ,
I've probably had Crohn's disease since high school - which was in the early 90s; I never went to the doctor because I never had major symptoms until I was much older.  I did have mind numbing fatigue and random joint pains through college, but I chalked it up to knee surgery I'd had when I was 14.  Even if it was in the wrong leg...I mean I must have been walking funny to favor the injured side.


It wasn't until I was 26, working more than full time hours in the corporate world, that I had blood in a bowel movement.  Ok, if I'm real about it the toilet bowl looked like it was full of kool aid.  It was a lot of blood and it was scary.  I talked to a friend of mine at work who I knew had some digestive problems and asked her what to do.  She had seen a great gastroenterologist at Northwestern and told me to go see him.

"Do you really think I need to go?  I'm going on vacation in a few weeks." This was my logic in response to filling a toilet with blood.  She cajoled me to go see my primary care doctor, at a minimum, since I could get in to that office in a few days versus several weeks.  So I did, and he told me I needed to see a gastroenterologist and that I should cancel my vacation.

Cancel my vacation?  Surely you jest, good doctor.

After I got home from Jamaica, I got in to see my first gastroenterologist and after a few tests was told I had Crohn's disease.  It took a matter of months, which compared to the 3 to 5 year average to diagnose Crohn's, I was pretty fortunate.  It was mild and confined to my small intestines, so I went on a drug called Pentasa.  Which, if you don't know, is - or was, 16 capsules a day.  Who thought that was a good idea?  I remember them to this day because they were a pretty shade of blue.  I'd pop 4 of those bad boys 4 times a day but after a month it didn't seem to be doing a heck of a lot.

Sixteen of these puppies.  Six. Teen.
So I was put on a milder steroid, budesonide, which ended up giving me headaches and high blood pressure.  The lack of response of my "mild" Crohn's disease to these standard, first line treatments put my diagnosis into question.  Not by me initially, but by my doctor.  I went from a quick, easy diagnosis into what I like to call medical purgatory.  And that messed with my head a long, long time.

Over the next year or so I had every test known to man it seemed.  Sometimes twice.  It was during this time I switched to one of the IBD specialists in the practice and he was pretty sure I didn't have Crohn's disease.  Great!  So why do my hips and knees hurt so badly, then?  Why am I still going to the bathroom 10-15 times a day?  Nobody knew.

The testing was maddening because of its inconsistencies and lack of definitive answers in one direction or another.  I had dangerously low vitamin B12, but after peeing in a jug for 24-hours to measure if I absorbed it properly, the test came back normal.  I took a blood test to look for IBD markers and came back positive for ulcerative colitis, not Crohn's disease.  These are the 2 that stick out in my mind, but there were many others.  Elevated sedementation rate but normal C-Reactive protein  (both general indicators of inflammation in the body) was my personal favorite.  I was literally about to walk away from it all - no more doctors, no more tests, I'll just live with whatever the hell this is when I developed my first fistula.  And that little tunnel in my body from my colon to my skin confirmed the diagnosis in my doctor's mind, without a doubt.

Calling Dr. Fine, Dr. Howard, Dr. Fine!
Unfortunately it didn't confirm it in my mind.  I lived in this parallel process world in my head with fear that they would tell me it wasn't Crohn's again, which meant I'd go back to all the testing and head scratching simultaneously with a vehement denial that I actually had the disease.  I was petrified that they'd take away a diagnosis that I didn't even believe I had.

As time went by, the diagnosis stuck. Nobody questioned it and I was put on a high powered drug called Remicade.  I only received 3 doses before I developed an allergy, but even in those 3 doses I felt better.  I've never gone back to less powerful medications since then (2004).  Thankfully the pharmaceutical industry has invested heavily in these types of medications (will refrain from cynical commentary about how much money they make from them) and I have options should my current medication, Cimzia, stop working.  Since 2004 I've only had surveillance testing, whether it's the every 3 year colonoscopy or blood draws every 6 months to make sure things are cool.  For the most part they have been, or if things went uncool there was a logical reason and course of action.

On Friday I met with my current gastroenterologist.  The IBD guy I saw at Northwestern moved to another state.  Plus when he got promoted he technically was my boss, and that was a little bit weird for me.  I really like and respect my current doc, but Friday gave me a bit of Déjà vu.  We talked about my endoscopy and how the eosinophil count only went down a little bit, and my esophagus essentially looked the same, so the diet didn't work.  In addition to removing dairy and egg from my diet and doing another 6-8 weeks of food elimination, she started talking about additional tests:  1 to measure the pH in my esophagus for 24-hours to see if acid reflux is a factor (Bravo pH test), another to measure if food exits my stomach in a timely manner (gastric emptying test), and another to take images of my esophagus by drinking barium to see if it's narrowed or has other issues that might be causing symptoms (fluro-esophagram).

A is a normal esophagus. B is narrowed due to EoE.  Not sure which I'm hoping for.
3 more tests, in addition to the next endoscopy scheduled for the end of September.  I cringed, for multiple reasons, but primarily because of what I wrote about above.  She's being thorough, I understand that, and if I didn't have those experiences in my past I probably would view this as a hassle at worst.  One source of amusement in all of this is the irony that the gastric emptying test requires me to eat some eggs, which I can't have because I've removed dairy and eggs from my diet to round out the top 8 most allergic foods.  So that one will have to wait.  Damn.

The esophagram is scheduled for a few weeks.  My cynicism tells me not to expect much.  After all,  I've been here before.

--T2