Friday, August 28, 2015

11 years a slave (to UC)

Yes, the title is a bit dramatic but I thought it might be helpful to share my history with this disease, so here it goes...

I started experiencing symptoms the summer before my senior year in college.  The first thing I noticed was blood whenever I went to the bathroom and, honestly, I didn't give it a lot of thought.  Sure, it was weird, but probably something completely benign.  Why would it be anything major?  I ate healthy, exercised, drank plenty of water, slept a lot, and was only 21 years old.  Plus, I never got sick!  I remember confiding in a close friend and she joked that my stomach was getting back at me for feeding it so much salad.

The internal bleeding persisted and I developed the other lovely symptoms characteristic of UC - frequent, urgent diarrhea, fatigue, discomfort - so, my mom insisted that we schedule a visit with a local GI.  The appointment was quick; the doctor said I "looked good" (mind you, she did not examine my GI tract; this assessment was made after glancing at me while I was fully clothed) and could fit me in for a December colonoscopy when I was back in town from college if my symptoms continued.  

No big deal, right?

Wrong.  I went back to school and attempted to continue to live a normal life, which for me  meant running cross country, going to frat parties and taking on a full course load across a very hilly, spread out campus.  My cross country coach was stumped as to why I could not keep up.  I was quickly dropping weight.  I could not focus during class; my mind was always drifting to my symptoms.  My head was throbbing due to all the blood loss and I was frequently dizzy and out of breath.  I had been modifying my eating schedule to avoid accidents, sleeping every chance I got to preserve energy, all the while thinking if I could just hold out until December, my GI would figure out what was wrong and treat it.  But in the meantime, I needed to get through this semester.

Well that plan came to an abrupt halt when I fainted while crossing the street on my way home from class.  Luckily my friends were nearby and somehow got me to the ER.  After drinking what felt like several gallons of golytely, undergoing a colonoscopy, and getting a blood transfusion (which finally helped me instantly feel a lot better since my hematocrit was in the low teens!), the GI broke the news that I had Ulcerative Colitis, a chronic inflammatory bowel disease.

The plan was to manage my symptoms using a steroid called prednisone and an anti-inflammatory drug called asacol.  I would only be on prednisone for a month and then begin to taper, since immediate cessation of steroids can screw up your adrenal glands and staying on the drug long-term can cause serious damage.  I could not wait for this month to be over.  Although prednisone quickly got my symptoms under control, I was very "roid ragey" as my housemates would attest, had trouble sleeping, my joints were killing me, and I developed what is known as moon face.  I would stay on asacol as my maintenance drug of choice.  

Once off the prednisone, I started to experience symptoms again, so I was instructed to bump up the asacol to the point where I was taking 12 pills a day.  But, it worked for me, so I accepted that reality and went about my life.  For about two years...

Then symptoms came roaring back.  This time I was taking rowasa enemas on a nightly basis, put on prednisone again, didn't respond quickly enough, and had to trade the Europe trip I planned with a friend for a 7 night stay in a shared room at the hospital.  I was pumped full of steroids and antibiotics, underwent another colonoscopy, received another blood transfusion.  This time as I was tapering the prednisone, continuing to take asacol and doing rowasa enemas every night and canasa suppositories every day, I was also given a prescription for mercaptopurine (aka 6MP), an immunomodulator drug formerly used as chemotherapy for cancer patients.   

This new (for me) med is designed to suppress your immune system and it is metabolized in the liver, so regular, on-going blood tests were needed to make sure my liver wasn't getting aggravated.  I was also told that I needed to have colonoscopies every year, whether or not I was flaring, to effectively monitor and treat my disease.  It was around this time when I started to feel a bit overwhelmed and curious as to what my life would be like with this disease long-term.  Although I did my best to hide it, I felt like I was already sacrificing enough to live as normal a life as I could.  I asked my doctor about surgery - up until then, it was mentioned in passing, like it was something I was SO far from wasn't even worth discussing - and my GI basically dismissed the conversation, urging me to take the 6MP.  

Truthfully, life on 6MP wasn't bad.  I could tell my skin was more sensitive to the sun and I didn't love having to go to the lab regularly for blood tests, especially because I am a difficult stick.  I have to give the drug credit though - it kept my UC in check for several years.  Then it became obvious that 6MP alone wasn't enough when I started a year and a half long flare which of course meant more of the same stuff - hospital stays, rectal meds, prednisone, IV steroids, colonoscopies, blood transfusions, etc.  After the scariest hospital stay of my life -   I was admitted after being non-responsive to four weeks of steroids and finally started to see slight improvement after 7 days in the hospital and being bumped up to the max dosage of IV steroids - it was now time to start layering on a biologic drug to my 6MP usage.

My first choice was Humira because I was under the impression that it would be more convenient for me.  A quick self injection in the comfort of my own home versus the 4 hour remicade infusion at the hospital made it seem like a no brainer.  But my loading doses were painful, my resulting headache extreme, and frankly, the drug didn't put a dent in my symptoms.  

My GI had me start remicade which started to work.  Again, until it didn't.  When my symptoms flared up again despite being on 6MP, remicade, and rowasa enemas, AND I developed remicade-induced psoriasis which made my face look and feel like sandpaper despite numerous topical creams prescribed by my fancy dermatologist, I knew it was time for surgery.  I could try two other biologics on the market - simponi and entyvio - but honestly, I'm tired of the medication roller coaster.  I've also noticed that over the years my flares have gotten increasingly more severe and when your body is not responding to constant administration of all drugs available and the highest dosage of steroids the medical community feels comfortable giving you, it starts to get scary.  Even as you recover from that kind of flare, you can't help but wonder when the next one will come about and if an emergency colectomy is in your future.  I'm ready for what I believe will be a better, more permanent solution for me.  

So, here I am!