I Can

Recently, a friend told me her theory that people age themselves by telling themselves they're too old to do something. Rather than enjoying life, people let their age define them.

"I can't"

This seems like a simple phrase, but it has the power to stop a person in life. Many of us fall victim to these two words. For the last year, I have let Crohn's use these words to define my life. 

In November 2013, I reached my first non-surgically induced remission. I ate healthy and exercised every day. I never felt so alive. Then, a study abroad program (which I'll never regret), caused my disease to spiral out of control. As symptoms worsened, I allowed myself to eat whatever I wanted (telling myself that anything would make me sick). As the binge-fest continued, I became more fatigued and symptomatic; the summer of 2014, I rarely worked out.

The fall of 2014 became the worst time for me. At 21, I needed to wear adult diapers. I never exercised. I had pain all the time. I told myself I couldn't work out. I couldn't eat healthy because it wouldn't help.

Then, I switched physicians and my new medical team helped me find a new treatment plan. By January 2015, I started to feel better. However, months later, I'm still trying to find the perfect treatment plan, causing me to still have regular symptoms.
Although I've felt better these last few months, I've let "I can't" rule my life. I can't run as fast or far as I used to - I'm easily fatigued. I can't lift as much as I used to. I didn't want to do anything because I knew I couldn't participate in activities for the same length of time, or at the same intensity.

Then, I thought about what it meant to age oneself. By telling myself I couldn't, I didn't go to the gym. Obviously I wouldn't become stronger by sitting around in my dorm room.

"I can"

The start of this attitude has helped give back so much of my life. Rather than saying how much I can't do in an exercise, I tell myself what I can do. I can go outside and run until I'm tired. I can try higher weight sets. I can try.

With this attitude, and the help of family and friends, I can slowly feel my strength returning. I have set many new goals and stopped looking at what I used to accomplish. I have more important goals for my future that only present me can start achieving.

A Second Chance

Over the last ten and a half years I have struggled with my disease both physically and emotionally. When doctors heard that I was "only" having 3-6 bouts of diarrhea, they got so excited about how "well" I was. In my teens, was I already doomed to always being worried about where the closest bathroom was? For the rest of my life, would I need to carry around a spare change of clothes for those unavoidable accidents?

In October of 2012, I entered in a clinical study. At first, I was a non-responder and I was getting rashes after some injections. It seemed as though once again, a drug was unable to bring me into a complete remission.

In 2013, I began to run. The beginning was excruciating and I wanted to give up so many times. But I stuck with it. Several months later, I was able to run more than a few miles. Normally I'd go to the bathroom a few times per run, but I was doing it - I was fighting my disease.

As it got colder, I realized I needed to start running inside. I dreaded that first run - I love being able to take different paths and being outside. Running on a treadmill has allowed me to hold myself to the speed I want to be running. In the last two weeks, I have taken about two and a half minutes off my mile time. It seems as though I will be able to reach my next goal.

This next summer, I want to run a marathon. But I don't just want to run a marathon; I want it to really mean something - I want to be able to run it in under four hours. This seemed like an impossible feat. However, I have been pushing myself to achieve this goal.

I look at how far I have come in this last year. Through diet and exercise, I am making and achieving goals I once only dreamed about.

For the first time, I would consider myself in a real remission, not just a I'm-doing-better remission, but an I-got-my-life-back kind of remission. I'm planning on taking my spare clothes out of my backpack and no longer needing to scope out the bathroom situation.

The clinical study and my new lifestyle have given me a second chance at having a real life. Not everyone is given this opportunity and I don't plan on wasting it.

Crohn's and Colitis Awareness Week

Considering it's Crohn's and Colitis Awareness Week, I thought it'd be appropriate to finally write another post.

Things are going really well for me - my last colonoscopy showed only mild-moderate ulceration in my neo-terminal ileum and some moderate ulceration at my anastomosis. It was probably my best colonoscopy discluding the one performed shortly after my surgery three years ago.

I know I should be very grateful to have such a good colonoscopy, but the only reason I had one was because I was having 10-12 loose stools a day. My doctor ruled that as caused by some bug, but we said that it was sketchy that I have such up and down periods of symptoms.

Now that I know my intestines look well, I'd like to make it my goal to reduce symptoms. I want to stop running fevers and having diarrhea and having pain. Maybe that means finding the right amount of exercise and diet.

I think maintenance is extremely difficult. On one hand, doing certain exercises and eating completely healthy would probably mean a lessening of symptoms, but I was miserable eating only rabbit food. As well, I like to push myself - even though that means some workouts will end early because I'm in pain.

A patient advocate told me about a woman who was diagnosed with Crohn's disease in the '60's. She said that if she avoided everything that ever caused her pain, there would be nothing to eat or do. Sometimes, she eats things that she knows is going to cause her pain, but that's because she wants to live.

That's about where I am. It's time to start figuring out how many symptoms I am willing to live with and what kind of lifestyle that keeps me happy will put me there. Although being symptom-free would be my ultimate goal, it looks like we're not quite there.

Happy Awareness Week everyone! Hopefully we all can find the happy medium of living our lives with minimal symptoms.

The Fall

Sometimes life really sucks.

It's so difficult to go from the high of completing an awesome goal of running the half-marathon to not even being able to run two miles. This morning I made myself go for a run although I wasn't feeling well because I told myself that I was never going to let myself give up just because of my Crohn's. By 1.5 miles, I was having bloody diarrhea outside, throwing up, and bent in pain.

I've switched to a soft/liquid diet because it hurts so much to go to the bathroom that I'm scared to eat solid foods because I know what's going to happen once it goes through my intestines. Over the last week, the fewest times I've gone poop in a day is 10 times.

School bathrooms suck. It's so awkward having Crohn's issues when there's a person in the stall next to you and two girls gossiping just outside your door. I always laugh a little, wondering what they would think if they knew what was going on just a few feet from them.

Next week is my next study appointment. Honestly, I have no idea what's going to come from it. Obviously I've been getting worse, but I'm supposed to be studying abroad in Jamaica next January - all I really need to do is survive until then. Switching medications could be a huge blessing - or I could get a lot worse. There's also the possibility of just doing a liquid diet until the end of January so I can just push through, but I don't know if the doctor will go for that.

How do you decide when you know that either choice could be really awesome, or lead down an even worse path?

Defying my Limitations

Veni

Cucurri

Vici

I came

I ran

I conquered

Today, I reached my first major goal in running. I ran 13.1 miles. They were slow; they were tough; but they have been completed for the first time.

My initial goal for the day was 11 miles. Normally when I go for a run, I look at how far I'd like to go, the pace I'm hoping to go, and then head out for my usual trail. Today, I took to heart what one of my friends said, "When you have good running shoes, every run is an adventure." There was no way I was going to stick to the same trails that I always use. My run today was absolutely gorgeous - I discovered new trails in the words and spent a couple hours running through beautiful fall trees.

There are no words to truly describe how I felt after meeting this goals - sore, tired, and worn out come to mind, but there was more to it than that. There was satisfaction in knowing that I didn't give up after poop #1 or #2. There was relief knowing that my Crohn's can't keep me down forever. There was pride in knowing that I have pushed my body farther than many people thought possible.

My new favorite quote reads: "Know your limitations. Then defy them."

I've always told myself that nothing was worth doing that would make my Crohn's give me a tough time. Then, I started running. There was no way I was going to stop running whenever I had abdominal pain; I never would have made it past two miles. This journey has taught me that I don't have to stop doing what I love just because Crohn's is yelling at me.

Sure, my time sucked, but I look at this first half-marathon distance as the starting point for me to become a much better runner. I have so much to work on - and that's very exciting for me.

I look forward to getting my half-marathon time under two hours.

I look forward to being able to run a marathon.

Most of all, I look forward to defying my Crohn's every time I wake up and put my running shoes on.

An Unhealthy Relationship

Most of the time, I have a pretty good relationship with my Crohn's. We have fun together - we go out on dates to CCFA events, go to camp together, and we have lots of great inside jokes about my digestion. On the surface, it seems like we belong together.

However, things are not what they seem in the private aspects of our relationship. Crohn's can be very abusive - from the gut-wrenching pain to the early morning vomiting - Crohn's doesn't like to leave me be for very long.

But after a day of beating me up, Crohn's always apologizes. I get to talk with my awesome boyfriend who I met through Crohn's or I get to hang out with some Crohnies. I can never really be mad at Crohn's because I see all of the things that it has brought me.

Some weeks, however, it takes all of my strength of will to not want to break up with my disease. Days like today, where it holds me back from completing my running goal. The days where I can't walk because I'm in so much pain.

Some days, Crohn's is just a huge pain in my ass. It won't let me sit for long periods of time. 

And don't get me started on the abuse it wreaks on me when I have to go to the bathroom! When I have poop running through my intestines, Crohn's gets really mad and starts to become abusive again. It's getting to the point where I'm scared to eat because I know Crohn's isn't going to like me going out and putting that stuff inside of me.

Lately, my runs have been testing our relationship. At first, Crohn's didn't like them, but after months of begging and pleading for Crohn's to understand the importance of running, it decided to let me reach for my goals. Nowadays, Crohn's isn't being so supportive. It's a bit jealous about the time I'm putting into my runs and has decided to start complaining whenever I head out. 

It's not a healthy relationship - but it looks like we're in this for the long haul.

Beating the Crohn's

Starting to run was probably the hardest thing I ever did. I got sick all the time and felt like Crohn's was laughing at me the entire way - telling me that I was never going to be able to run like everyone else. All the times I pooped my pants or had to squat next to a tree, hoping that no one would run by and see, seemed as though running was going to be a continuous reminder that my intestines hate me.

The last two days have started me on a race that no longer allows Crohn's to hold me back. For the first time ever, I have not needed to race to find a suitable place to poop for more than one run in a row. Running actually felt good. 

There was no pain, no regret, no wanting to give up.

There was just the trail and myself.

Crohn's doesn't have to be a pain in the butt when in comes to running. Yes, it has taken me nine months of experimenting with different food and pushing myself to the point of throwing up, but I will beat Crohn's, and it is never going to take me down the road of wanting to give up.

 

The challenge for everyone else is simple:

Don't give up on your dreams. No matter how big, small, or seemingly impossible. You can and will, eventually, complete them. Who cares if it takes a few years? All that matters is that nothing can stop you from being everything you want.

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.