Be Your Best

A wise woman once told me to always do my best. Sometimes, my best will be getting out of bed after a night filled with pain. Other days, my best will be running a marathon. No matter what my best is that day, my Crohn's should never stop me from reaching my full potential.

I have tried to live by this advice, but I will be the first to admit the difficulties in always being my best. Some days I just want to be lazy and quit, saying that I must have gone as far as I can, but deep down knowing I could really push a bit farther. Sometimes I say that I'm looking at the big picture; that if I push myself today, I couldn't possibly do my best tomorrow.

Right now, I ask myself, why can't I be my best every single moment of the day? I think the problem so many of us have is that we compare what we are doing every single moment with everyone else out there in the world. If I compare myself to people that have been running for years, of course I will always fall short. However, I have been working on reading my own body, and trying to become satisfied with my three mile runs, realizing that that workout was truly all I could give that day.

The human inside of me wants to be better than everyone at everything. The Crohnie inside of me tells me that I need to realize that there are some things I just cannot do. But my question to myself: why do I have to base myself on others or my disease? Why can't I just be me and just be happy with whatever I do?

My goal for myself for the upcoming school year is to be happy with myself. My goal is to not look at someone else and see myself as not good enough because I am not the same as them.

I am not just a Crohnie.

I am not just a Chemistry geek.

I am not just a runner.

I am an individual. I am a beautiful kaleidoscope of mismatched hobbies and ideas that make me who I am, and I am proud of everything I have and will ever accomplish.

I challenge anyone who reads this post, should you be someone I know or a complete stranger, to love yourself for every thing you are. There is not a flaw inside any of us because each of us is amazing. Just remember to always be your best, whatever that may mean for you personally.

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.



Never Give Up

I'm going to continue on my story about how I got into running.

As I said before, you need to set goals for yourself and you need to keep going, even if you have a bad day. For me, it was difficult to continue when I hadn't met my goals. I told myself in January that I would be able to run six miles by the end of May. By the time May was coming around, I was lucky if I ran 20 minutes without stopping. It was super frustrating to realize I wasn't even halfway to my goals. I had to keep telling myself that it was okay if it took another year to run a half marathon.

I then went to DC and didn't have time to run for about a week because I was unpacking from college and repacking to work at my summer job. I wasn't even sure if I was going to keep up with running. However, we have a two mile loop around the lake, and I figured it would be easy enough to run that.

Boy, was I wrong.

A week of not running and I had to walk the last half. It was very humbling to have to work my way back up to running a couple miles at a time. No matter how difficult it was, though, I kept running a couple times a week. Eventually I was able to make it the entire way without running. Then I was able to go a little faster. Then, last week I hit my three mile marker.

 

Throughout the rest of the summer I have plans to improve my mile times and make it up to six miles of running at a time, but I will be okay if I do not hit those goals. The important part is to keep running and keep aspiring to make those goals eventually happen.

 

Keep working towards your own, seemingly impossible, goals.

Running and IBD

Now that I'm really trying to get into running, I've started reading more blogs and articles on it. There's plenty of advice out there about how one should train and eat during runs. However, not a lot of places fit IBD into the picture.

Throughout the next few posts, I will share with everyone how I've gone from not being able to run a half mile, to consistently running 3 miles.

First off, I set goals. I cannot do activities unless I have a goal in mind that I want to reach. I started in January and told myself that I wanted to run a half marathon by the end of the year. At the start my running was terrible. I was constantly feeling nauseous and needing to poop.

 

My best advice for you Crohnies: try different routines until you find what works for you.

 

I don't care what all of those fancy websites tell you, they don't have a disease that makes the semi-bouncy motion of running make you need to poop every few minutes.

You might need to run at a certain time of the day, or a certain amount of time after eating. That was my problem in the beginning; I thought that there was a "right way" to run and it ended up being completely wrong for my body and my disesase.

 

Secondly, I didn't stop just because I kept having one bad day after another. Sure, there were days that I was done after a quarter of a mile, but I knew this was something I really wanted, so every couple I'd be trudging along.

 

Although you may think it is impossible for you to run because you have IBD, if you give yourself enough time and try out different times you run, etc. I know that anyone can start running.

 

Here's your challenge: make a goal for yourself, something you thought IBD made impossible, and make it happen.

Emergency Toilet Paper

I have learned the hard way that, no matter how good you are feeling, you should always carry around emergency toilet paper while running.

I'll admit it - I got a little cocky. Being able to actually run several miles has made me feel a little invincible. Because I'm feeling good enough to train for a half marathon, I have been feeling as though I don't even have Crohn's disease. Running through the woods with no bathrooms was a fun reminder of my disease.

I was just passing one mile when I could feel a poop brewing in my lower colon. Shoot. I was hoping I could finish the last mile and make it to the bathroom in a lower cabin. However, after another tenth of a mile or so I knew I wasn't going to make it. Unfortunately, most of my running clothes are neon, and a lot of people at camp like to run. There I was, waddling into the woods, trying to get far enough back so no one could see me. It ended fine and no one knew about it, but ever since then I have learned to carry my own toilet paper so I don't have to worry about which leaves are safe to use.

I thought that I wasn't going to be able to run because I was constantly needing to go to the bathroom when I ran, but I have now found my pattern. If I run, I either have to go in the morning on an empty stomach, or I have to wait until I poop once or twice (I determine whether my colon feels empty or not). If I'm biking, I don't need to go to the bathroom.

My upcoming goals are to figure how I'm going to do my marathon. You have to take in simple sugars at some point, but I have to poop badly if I eat before running. To me, it sounds like a disaster to eat while running.

However, compared to other issues I've had with Crohn's, trying to figure out how I can manage pooping while running a marathon seems to be a really tiny issue.

The Crohnie: Sick and Well Again

In a dorm in St. Olaf, there lived a Crohnie.

Rereading The Hobbit for class has been a great insight for me. During our plenary, the professor mentioned, "You can't have an adventure without first getting a little uncomfortable." At the time, I didn't think much of it, but I realize I'm going through my own adventure.

Since I was diagnosed with Crohn's disease, I have been bombarded with all of my can'ts and shouldn'ts. I can't expect to live a normal life. I shouldn't eat certain foods. I shouldn't participate in certain activities. As much as I have always resented these restrictions on my life, I realize that I have also been limiting myself. When something made me sick, I avoided it afterwards like the plague, which always made sense to me and is what my doctor told me to do.
Like Bilbo, I was happy in my comfortable ways, or so I thought. Just as the Took side in him wanted to go on an adventure, there has always been a part of me that is determined to live the way everyone else gets to - free of restrictions. Yesterday morning, I realized that for the past five months, I have been making my own voyage to the Lonely Mountains.

I have always had terrible sickness in the morning. The five or so years after diagnosis, I could not wake up earlier than six in the morning, or I would be really sick. I only ate cereal up through high school because eating anything else would make me queasy. If we were going to a pancake breakfast,  I had to wake early and eat cereal for breakfast so I could manage the pancakes later on. Everyone told me I just needed to accept that, so I did. I kept my morning routines so I did not have to worry about being sick.

I also did not do much for exercise besides swimming. Some medications were rough on my joints, and land exercise always seemed to bother my intestines. I had a disease - I couldn't be expected to do anything to aggravate it. Without realizing it, I allowed myself to live a routine because that was what I knew would keep pain and sickness away.

This year was a turning point. A friend helped get me motivated for the gym. I started out slow and didn't care for it much at first. I hurt and felt sick afterwards. Sometime around January, that changed - I actually enjoyed going to the gym. I enjoyed it so much, that when it worked better to work out in the morning, I decided to try it.

It took me two weeks to do an actual work out in the morning. The first day I went on the elliptical for five minutes and had to run to the bathroom to throw up. But I kept at it. Eventually I could do ten minutes before needed the bathroom. Before I knew it, I was completely my entire work outs in the morning! I still didn't realize how amazing of an accomplishment this was.

Then, I took it my mind that I wanted to run a CCFA half-marathon. I don't run - I've always hated it. And since it hurt my intestines to run, I was never expected to. My doctors told me that most people with IBD can't and it would be foolish to try. I started out slow and was only getting a half mile it. I kept at it; I just had to see if I could really do it.
Two weeks ago, I ran three miles, something I never had imagined would be possible. That was my goal for the end of the school year since I plan on running at the end of November/early December. However, I still didn't really understand what an accomplishment this was.

Yesterday morning, I ran/walked two miles. I combined two of my most dreaded pain-provokers, and I succeeded! I couldn't believe that me, a girl who refused to run or change her morning activities or run because of Crohn's, actually went for a run in the morning and didn't throw up!

As many times as this journey has absolutely sucked, I realize now what it has taught me - it doesn't matter that I have Crohn's disease, I can do whatever I set my mind to. Sure, it might take me five months to reach such an amazing accomplishment, but I can reach my goals.
No longer will I sit on the sidelines of life.

I have Crohn's disease, but that is not who I am.

I am a fighter.

My wish

Hey everyone - it's been a hectic time so I haven't had time to post lately. I originally started the blog to give advice to others, but lately it has become my place to vent about my feelings about IBD. I've gotten a lot of e-mails from people saying that they feel the same way, so I want everyone to know I really appreciate that you read this and care enough to reach out to me.

I really wanted to write about something happier - that I'm finally out of my rut and enjoying the life of a Crohnie again. As involved as I'm getting in the IBD community (through the council and MN Chapter), I feel like the past me would be super excited about everything I'm doing and happy that I have Crohn's because of all of these opportunities.

Lately, however, it's been so much more difficult. St. Olaf is always questioning, "What do you want to do with your life?" I've always replied that I want to be a doctor in a small town and just live a quiet life. I've realized that I've been lying to myself.

My dreams are to travel the world. I want to go to third world countries and hand out medical supplies. I want to see the wonders of the world. I want to swim in all of the oceans and seas (except for the really cold ones... maybe them as well). These are what I dream about all the time, and St. Olaf says these dreams are possible.

My Crohn's tells me otherwise.

My Crohn's says that I'm going to have pain after I eat, that I'm going to be tired all the time, and that I'm going to spend a good portion of my day in the bathroom. I know I should be grateful; I don't go to the emergency room as often and I don't absolutely need surgery. Doctors are always saying that people with IBD are not going to feel as well as they did before, even when they are in "remission."

I'm supposed to be okay that my disease doesn't allow me to travel? I'm supposed to be okay that I have to drive to Mayo every other week so I can help this big pharmaceutical company get their medication out on the market? Which they'll charge probably more than $10,000 an injection. I want to know why having a disease means that I have to accept these limitations as though it's a part of life.

I absolutely love camp and my Crohnies, but it is so so hard to know that I will probably never be able to fulfill my dreams because it just isn't practical, that I will have to always live near enough to a large clinic that will have all of the latest drugs for me to be on. I know there are tons of people that have it worse than me, but seeing my friends doing a semester abroad or doing research in another country is so hard. Several of the chemistry professors told me that they would be more than happy to give me letters of recommendation for any program that I want to apply to, but I had to tell them that I can't because of my Crohn's.
I know someday this will all work out, but it's so hard being at this point in my life.