Don't let your Crohn's win. Beat the Crohn's.

Thursday, July 18, 2013

A Decade of Crohn's

It is officially ten years since I was diagnosed with Crohn's disease; this is an anniversary that marks the day my life was changed irrevocably. As this day approached, I couldn't help but think about how different I am now compared to this day, ten years ago. For all of my family, friends, and even strangers, I would really like to recap my story.
~9 months prior - diagnosis
At first, I had no idea what hit me. I was walking upstairs to my room when I had to stop and sit because I started having such terrible abdominal pain. At 9 years old, I figured it was a tummy ache from something I ate. I kept on my business and didn't think about it again.
Fast forward a couple months and this pain was happening every day. I remember lying awake at night, crying because the pain was too intense for me to sleep. I would try to curl up as best as I could in my desk to minimize it. As well, I was starting to throw up and have more frequent, loose poops.
I didn't understand what was going on. Before this, I had never been sick with the flu, or even a cold. In my now 10 year old mind, I was convinced I was dying. My parents found out what was going either because I had had my first accident, or they saw one of the times that I couldn't make it up the stairs any longer without having pain. Sometime in the late winter/early spring, I was having the worst pain of my life, and it wasn't going away. My parents finally had enough and took me to some clinic (the urgent care or emergency room). After not finding anything through some basic tests, they figured I was either making it up, having a very stressful time in the 4th grade, or bulimic.
This continued on until I was no longer able to make it to school on time in the morning. Our routine was: wake up and all eat together, I go to the bathroom to the bathroom to throw up while my brother went to school, and then I went to school once I finally stopped.
The month or two prior to my diagnosis consisted of me no longer being able to walk because I had no energy. I then slept on our couch downstairs with all of the fans on and a cold rag because I was always running a low fever. One of my parents would always wake up and comfort me while I was either crying out in pain or throwing up.
Diagnosis (July 18, 2003)
Finally! I was diagnosed with Crohn's disease (unofficially). Although I had just had my first colonoscopy at the age of 10, the doctors were finally telling me that they knew what I had. In my mind, this meant that everything would be fixed. They started me on 18 pills a day and sent me on my merry way.
Elementary - middle school
During this time I was never as sick as I had been, but I was never close to feeling like I had before diagnosis. My doctor at the time believed that I should be able to go a couple weeks without pain or diarrhea, so I was switching my medication every 2-4 weeks in the search of the magical combination that would make me better. During this time, most IBD treatment was just guessing. It was still a bottom-up approach in smaller towns, so pills were the only treatment available to me.
Prednisone became my worst nightmare. Whenever I look back at pictures, I see a huge moon face staring back at me. I remember getting terrible mood swings that would have me laughing one second, angry the next, and then bawling my eyes out. Self-esteem hit rock bottom as people would tell me what a cute chipmunk I made (what every 13 year old girl wants to hear). Kids would call me fat and they teased me about my Crohn's, saying that I was going to explode because I couldn't poop. This so-called "miracle" drug is the reason for the worst depression I have ever experienced. As well, my joints always ached and it made me very tired.
At this point I learned the mantra that I should never push myself because I have Crohn's. I had to have a routine down that I didn't deter from, otherwise, I would get sick. I would have to wake up at a certain time and eat at just the right time or I start throwing up and I would be sick all day. Later on in life people would laugh at my routines and think I was weird, but it was learned during this time in which I had to stick to a routine or I would miss out on the day.
Freshman - junior year
At this point I refused to ever go on prednisone ever again (and I am proud to say I have stood by that rule). During this time of my life, I was never super sick, but I was never well either. I would always have some sort of sickness because of my suppressed immune system. I would miss a lot of odd times at school because of the flu, having operations from abscesses that would form, or because I was "Crohn's sick." I would have a couple loose poops every few days and have constant pain. I still never really pushed myself, but I wonder now if I could have risen to the challenge had I tried.
My life was based around my Crohn's. I would only do things if I felt it was safe for my Crohn's. Plans stopped being made because I never knew if Crohn's would make it impossible to follow through.
Around my sophomore year I started Remicade, an IV drug. I was doing slightly better than before, but in a couple months I felt as though the effect was wearing off. My doctor kept ignoring my complaints, saying that my blood work was fine. He kept saying that I was just going to keep doing what I was doing. Finally, he allowed me to have a colonoscopy, where we found lots of polyps, inflammation, and a stricture. My doctor said that there weren't really any other options, so we just had to stick with the same treatment.
Senior year
At a swim practice, I collapsed in mind-numbing agony. I couldn't believe the pain that was ripping through my abdomen. We went to the emergency room and were hopeful that this was what it would take for my doctor to finally do something.
We were wrong.
This was when I switched to Mayo clinic. Over 3 days I had a lot of tests done and it was decided that I would go on a clinical trial. It was really cool seeing how a clinical trial worked, but I was considered a non-responder to the medication, which the doctor figured would happen. He thought there was a good chance my stricture had scarred, which means that no medication could help it.
I finally had the surgery that would change my life and put me in my first ever remission. It was the best decision we ever made. Although it meant that I was still recovering over Christmas, my abdomen was a lot happier.
After fighting with insurance, I started Humira after my 18th birthday. We soon found out that I was allergic to it after I broke out in a full body, medicinally-induced psoriasis rash. After about 2 months of injections, I went off, and it took about the same amount of time for me to recover from the reaction.
I then stayed off medication since I was in remission. For a couple months, I was Crohn's free and medicine free. Although I was finally free to break away from my mantra that Crohn's came first, there was always that scared voice in the back of my mind that wondered how far away my disease really had gone. I may have not had many symptoms, but I was living my life as though I still did.
Freshman year - college
The stress awoke my Crohn's from its hibernation, and it sure was cranky after its long nap. I went onto Cimzia (the clinical trial I was on my senior year, although it was no longer a clinical trial since I had turned 18) and methotrexate. The medications were alright, but I had to do them on Friday because they would make me feel sick and I would need a day or two to start feeling better.
My freshman year of college was built around trying to adjust to college just like everyone else, and trying to deal with my first ever flare up after a remission. It was so frustrating and depressing to have everything pile onto me. Fortunately, St. Olaf is such an amazing school for accommodations and I was able to get special meals, get my own room, have a car, etc.
A lot of my professors either knew someone with IBD, or they were very willing to talk about my disease so they would understand what I was battling. My second semester, I even found a professor that also had Crohn's disease.
My friends were really amazing. Whenever I was sick, they would get things for me so I could stay in my room. One night I was having the terrifying pain in my abdomen, and one girl carried me down from the 4th floor (no elevators!) while two others drove and stayed with me at the emergency room. It was great to know that I could really rely on people. Over the summer, I had to go to the emergency room again, and it was decided that we would have to do something different.
Sophomore year - college
Another clinical trial was decided upon. I was in a very low state-of-mind after I was continuing to have all of these issues even though I was at Mayo. After the introductory phase, I was considered a non-responder, which was actually nice because now I know I am actually getting the medication.
Although Crohn's seemed to be tearing me down, it really brought me right back up. My professor with Crohn's suggested that I start a support group on campus. It ended up that about 15 people joined throughout the year, and it was really great getting to have Crohnies on campus.
I then joined a national council for people with IBD in college. Through that, I have met some very strong leaders who are having many of the same issues as me. I have met some important people in our country and within the CCFA community. I have been able to get more involved with CCFA and help out with the Minnesota chapter, which has been a blast.
This was the year that I decided to throw out the Crohn's-first attitude. I started to go to the gym and work on getting in shape. I also started eating better. It sucked terribly at first, but eventually I started feeling a lot better.
Although I went to the emergency room a couple times in the spring, I had a much better outlook on life.
Here and now
Right now my life consists of camp, camp, and more camp. However, on my two hours off a day I have been running and trying to prove to myself that I really can push myself. Now, I can regularly run 6 miles, a feat that I had not thought would ever be possible. I have my sights set on a half marathon, a full marathon, and maybe even farther.
Sure, my Crohn's isn't perfect. Until this week I had had three weeks of non-stop diarrhea. I have had several accidents in the last month and I have needed to take pain medication.
But I will not take any of this without a fight.
I have realized that one symptom, or even a week of symptoms, does not mean that I have to stop being active. I didn't stop running after my accidents, and eventually I have formed stool again. Some days I can only make it through 2.5 miles (which to say that is the only amount I can run on a bad day is fantastic), but other days I can do more. Now that I have given up my mantra that I shouldn't push myself because I have Crohn's, I have been able to go so far. I hope that I can reach my dreams and inspire other people that they can as well.