woman with her boyfriend and friend at the beginning of a half marathon

I have to admit – when the Crohn’s & Colitis Foundation asked if I wanted to speak at this year’s Team Challenge inspirational party the night before a major goal race of mine, my first thought was: What if I have to poop in the middle of my speech? At least I was in a room full of people who could probably point me in the right direction.

I was diagnosed with ulcerative colitis when I was 14 years old. It happened like it does for so many of us. So much diarrhea and blood, cramps, exhaustion – the list goes on. I don’t remember the exact sequence of events, but my mom says when my pediatrician heard the severity of what was going on, she walked over to the gastroenterologist and urged him to see me as soon as possible. One sigmoidoscopy and colonoscopy later, the verdict was in: I had ulcerative colitis.

We were able to get it under control almost immediately, so I was fortunate to have a pretty normal high school life. I ran cross country and track, I went to the bathroom a regular amount and really no one knew I had inflammatory bowel disease. I graduated as a four-year varsity athlete with a handful of cross-country course records, one state meet berth, healthy as an ox and ready to tackle the next adventure: college.

In 2005, I moved into the dorms at UC Santa Barbara, and like any good student, I had a total blast my first year. I felt great – so great, in fact, that I started to skip my medication. Since I experienced zero symptoms in high school and didn’t understand anything beyond just having to take some random pills, I thought, What the hell? Yeah – big oops.

Summer 2006 came way too fast, and I started experiencing some familiar symptoms – diarrhea, cramping, fatigue and blood. Within a matter of days, I was in bed, then in bed some more, then not eating, then going to the bathroom more than 40 times a day, then trying not to vomit and poop at the same time, then watching reruns of CSI Las Vegas. (My mom still jokes to this day that Gil Grissom saved my life that summer.) I was in my very first post-diagnosis flare. I was 19 years old and learned quickly that this disease is not a joke. It’s here to stay, and I need to listen.

I tried a few different things to get better as I struggled through the summer and headed back to school, including the dreaded steroid route for close to a year. There were times when I felt like I would literally never eat anything again other than Saltines and Ensure. There were times when my parents probably thought the same thing. For those of you who have been there, I totally get it. The helplessness, the fear, the anger, the confusion. That was me at 19, at a low weight and waking up just to roll over and go back to sleep.

After two quarters back at UCSB and dealing with a flaring gut and the emotional toll of accidents in public places mixed with peers who weren’t understanding of what was happening to me, I made the choice to skip my last quarter that year to get better at home.

During this time, I obviously was not running. I was barely going outside. The first time I did leave the house before heading back to school, my boyfriend at the time drove me to the beach. As we slowly moved down the ramp toward the bathrooms, I told myself, Just make it to the water and back. This goal meant being more than a few steps from a toilet, something I hadn’t done all summer. I was petrified. I remember feeling the cool, fresh air on my face and shuffling my fragile frame with his assistance. I was so freaking winded – it feels ridiculous looking back now! – but I remember I was determined to get my feet wet. I don’t recall how long we stood down there or how long I spent in the bathrooms afterward, but I still remember that fresh air…that same fresh air I feel when I go for my daily run today.

I like to say that Team Challenge, the endurance training and fundraising program for Crohn’s and ulcerative colitis research, saved my runner life – but really it saved my whole life. By September 2007, we had found a treatment that worked for me, and I’m grateful that it’s still working for me 10 years later. I found out about the program at a foundation symposium when I was desperate for answers about my own body. They were participating in their first national event– the wine country half in Napa in July 2008. I was still in college, and I had never run a half marathon before. I trained remotely and met up with the rest of the San Diego team on race weekend. I was immediately adopted by a group of girls who still remain some of my closest friends today. And let me add that I had just turned 21 a few months earlier, so having your first Team Challenge event in wine country wasn’t so bad!

woman running a half marathon

There’s nothing quite like completing your very first race – especially if you’re wearing those honored heroes on your back and that orange Team Challenge logo on the front. From the second I crossed that first finish line in Napa to now, I knew one of my purposes in life would be to show people that you can thrive – not just survive, but thrive – with this disease.

For me, that means exploring what running means to me as an adult with UC. For me, that meant going back to school for a summer session to graduate on time with my friends.

For me, that meant training to qualify for the Boston Marathon at my marathon and accepting my symptoms not as setbacks, but as reasons to keep moving forward. I qualified in 2015, and crossing that finish line in Boston last April meant that no dreams are too big and no steps are too small to get there.

For me, as I crossed the finish line of my seventh race with Team Challenge last month, that meant respecting my body’s limits but not being afraid to test them. I ran for a personal best, and I achieved it by three minutes!

Wherever you are with your own inflammatory bowel disease, you are so not alone in your steps toward your goals, and we all know remission does not equal cured. Just getting out of bed is still a step some days, while other days it might be walking to the end of the driveway and back. That’s how I started anyway. These seemingly small things are steps toward your tomorrow – a day that, 10 years ago, I learned always comes.

My story is my story, but it’s also the story of so many I know who are also fighting the fight against their own body.

It’s the story of the son who’s been battling Crohn’s since he was a kid and is now an active advocate for the cause at just 14 years old.

It’s the story of my big bro’s wife who has been in and out of the hospital and still can’t wait to get back on her bike. (She makes us all look bad!)

It’s the story of the daughter who can’t attend family trips because she’s too sick, so her mom comes out to walk in honor of her.

It’s the story of two guys, one diagnosed years ago and one recently, who still came out to talk IBD nerdy with me on our training runs.

It’s the story of the daughter who has literally made it her job to end this thing, working full-time for the foundation, sometimes from her hospital bed, and this year I was so lucky to call her mom my teammate.

woman with her boyfriend and friend at the beginning of a half marathon

I ran for many as I covered the 13.1-mile journey at Rock ‘n’ Roll New Orleans, but the one at the top of the list is myself – to celebrate that moment two months ago, following a colonoscopy, when my gastroenterologist said, “Everything came back clear.”

Every time I choose to throw the middle finger at IBD, I hope one more person with inflammatory bowel disease thinks, Yes, it is possible.

Because yes, it is always possible.

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As I reflect on my first year dealing with ulcerative colitis, I look at all the good and bad experiences I’ve had. Most of the time, while you go through a bad time in your life, you can hardly picture that something positive might come out of this. As the memories of last year are brought back to my head, I can now see every little positive thing I have gained this year. One year ago, my 15-year-old self couldn’t have even thought about something good coming out of this. I thought my life was about to be painful and hard, even though I was glad I could put a name on my symptoms. Today, to celebrate my first year coping with IBD, I want to share with you some of the positive things I have learned.

1. I’ve learned enjoy every little moment in life.

When you are perfectly healthy, it’s easy to take your health for granted. I myself never thought in a million years I would get this sick in high school. But when it happened, I immediately told myself that, when I got my health back to normal (well, a new normal considering the UC), I would never miss an opportunity to have fun and enjoy life. I would try to enjoy every minute of my days, and teach those around me to do the same, because most of them are perfectly healthy.

2. I’ve matured a lot.

I’ve had to grow up fast. And by fast, I mean racecar fast. I now need to watch what I eat, go to the hospital at least once a month, make decisions about what pills I think would be best for me and many more. I also need to take care of myself on a daily basis so I don’t run out of energy. It is hard sometimes, because you want to go do normal teenage stuff with your friends. But you simply can’t. Most people don’t have to do such things at 15. But you know what? Life happens. And it’s not because I’m young that I can’t be sick. It doesn’t always happen to others. It sometimes happens to you. And knowing that is the most difficult thing to process.

3. I’ve learned to manage my stress.

Before I got sick, I had a lot of anxiety. But I noticed that from the day I got diagnosed, my stress level lowered a lot! I personally think I just now had realized that stress made my symptoms worse. And because I didn’t want to have cramps 24/7, I unconsciously stopped worrying about every single thing in my life and just let life go on as it always should have.

4. I’ve learned that I’m strong.

Before I was diagnosed, the worst medical thing I had ever had to get done is a shot or two. And even though shots are really not that bad, I was always afraid to get them. So you can imagine that when I had to do my first blood test, I was petrified. And the fear didn’t stop there. About four days after that blood test, I had to get a colonoscopy, which was way worse. But that was the first and last blood test I was scared of. Twelve blood tests, three iron infusions, one colonoscopy and a year later, I can now proudly say that I feel very brave. Not only on the physical side, but on the mental side, too. I became much more calm and I don’t let my thoughts scare me as much anymore.

5. I’ve learned not to worry about others’ opinions.

Yes, people are going to think you are lying. They often think that when you can’t see someone’s illness, it’s fake. But when you see so many faces judging you and thinking you’re fake, you learnt not to care about what people think anymore. Whether they say that you could’ve done something to prevent the disease (which is totally untrue) or they think they can cure you with their magic wand, don’t listen to them, they’re not worth it.

6. I’ve learned who my real friends are.

You may lose friends. Most people don’t know how to deal with a sick friend. Especially not when you’re a teenager. My best tip would be to let go of these people. If you don’t, they might disappoint you on the long run. Concentrate your energy on building strong relationships with people who really want to be part of your life. They are the ones who are worth it. You don’t need to have a ton of friends, just a couple good ones will do. Trust me.

7. I’ve learned to be more positive.

I early on decided to have a positive attitude towards my UC. I find it a lot easier to fight this disease with a smile on my face rather than lay down and cry. Of course I can’t be positive all the time. Sometimes I do lay down and cry and just want to find a reason to the “why me” question. But because there really isn’t a reason why, I just figured that I would have a better life if I started to have a positive attitude early on.

8. I’ve learned to listen to my body.

Most importantly, I can now “read” my body. I know that some days, I have a little less energy than other days. And I know what to do on those days. I see the difference between a UC cramp and any other cramps that my body experiences. I never could have done that a year ago and find it very cool that I now know my body very well.

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Thinkstock photo by BalazsKovacs

From the age of 6 to 16 I had a ileostomy bag and was on home TPN. Although I was very lucky to have strong parents who raised me to not let my illness get in the way, there were obviously things I couldn’t do with a bag and a peripheral line.

At the age of 16 I was extremely fortunate to have the bag reversed and come off TPN, and once recovered from the reversal I set out to do things I’d always wanted to do.

This list wasn’t going to be easy, however, as I still had ulcerative colitis, opened my bowels about 30 times a day and had anemia and extreme fatigue so I still had obstacles in my way. But as my mum taught me, I was dammed if they were going to stand in my way.

All my childhood I always wanted to train in martial arts and had been a huge boxing fan. Once I’d recovered from the ileostomy reversal I joined a gym and a martial arts class. I was doing things I never thought I’d be able to do. My strength was getting up, from a weak skinny kid on TPN, I was now a teenager lifting my body weight and over in the gym, I was sparring at martial arts and living it. For the first time in my life I looked and felt like I was in peak condition and it was amazing.

I competed in national tournaments, granted some years I got banged up in the ring and yes technically I shouldn’t have been doing it, but this was a man whose mum took him swimming with a peripheral line when the doctors had said a pool was out of bounds. I’d never let my illness hold me back and I’d often pushed the boat out beyond what I should have to live my life to its fullest.

Although as a teen I’d been to France twice with family, taking my TPN supplies with me, I’d always dreamed of going to the U.S. I’d been saving since I started working and at 23 years old I decided to go on tours around the east and west coast of the U.S. on my own.

This was the craziest and bravest thing I’d ever done. I had a serious illness, opened my bowels loads of times a day, an illness that people I’d met were nervous about getting on a train with, and I was about to fly to the other side of the Atlantic alone.

This is the best thing I’ve ever done. Flying was fine, after all there’s a toilet on board. America is a fine country for someone with health problems and for a English tourist — no language barrier, fine public toilet facilities, fantastic health care if it was needed, which put my mind at rest and kind, laid-back, understanding people who don’t take any notice of anyone. I felt so comfortable and confident in America with my illness even less embarrassed than in England.

During my time in America, I saw pole dancers in Las Vegas, went on the boat into Niagara Falls, and chilled with a hot dog in Washington, D.C. looking over the White House. I had the time of my life and this experience matured me and gave me so much more independence and strength. And the fact that I went all around the east and west of this amazing country with my dodgy bowels taught me this illness is only a obstacle if I let it be.

I am now planning to take my wonderful fiancé who has anxiety to the States. It will be the first time she’s even been abroad. I am hoping she gains from the experience as much as I did.

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Thinkstock photo by anyaberkut

They tell you to be happy about the little things. A random smile from a stranger, three green lights in a row, getting the chance to pet a dog, sun peeking from behind the clouds…Make your pick. In my case, one of the few little things to be happy about is making it out of the grocery store without having “an accident.”

It is said that happiness is only real when shared, but try to tell someone not involved in your suffering. “Hey, I didn’t crap myself at the supermarket today!” This reaction would probably not be met with much enthusiasm and empathy. Yet for me, it is a small victory every single time.

Going to the grocery store, or any other store, is one of the triggers that cause panic and anxiety, and therefore brings the risk of losing control over one’s bowel movement. It is a vicious circle, and while I am aware of it, it is very tricky to break it and leave the place in once piece, preferably with a checked shopping list.

Why supermarkets? Unless you are in a huge store, there usually are no bathrooms anywhere close. You might not be in urgent need of a bathroom, as long as there is one nearby. However, the moment you change your location and need to spend as only as five minutes in a place without one, the panic sets in. You could do your best and try to stay calm but at the same time, you are controlled by fear and shame of what could happen. And usually, it is the fear that wins. You have to put your basket down, accept your fate and head home to take a shower.

You can probably imagine, how frustrating this is. Sometimes you have to turn around as soon as you enter the store. Sometimes you make it halfway and sometimes you are standing at the cashier, hoping nobody will notice anything. So, making it out without any complications can really brighten your day.

I’ve been fighting my fight for more than three years now, and while I also have tried to get my groceries delivered, I don’t want to give up. I like to pick my fruits and vegetables myself. Here are a few things I have been practicing that “save my ass” (pardon the pun) in most cases.

1. Try different paths in the store. Instead of doing your usual route, go grab some items from the end of your list. I have found that the same way habit is created, the brain has a set of places and triggers where the panic starts. By changing it up, you gain some time and “confuse” the usual panic reaction.

2. Avoid cooling sections. If possible, or wear an extra layer of clothing. Change of temperature is usually a mean trigger.

3. Breathe. When the panic comes and there is no bathroom nearby, put your shopping basket down, change the aisle, stop and focus your stare at one spot. Breathe deeply and try to slow down your heartbeat. Keep repeating to yourself that you are in control. Do not let yourself give up.

4. Wear an adult diaper. Seriously. It might not save you from having to take a shower afterwards, but it will give you some time to finish your shopping, compared to wearing no diaper or night time pads, in which case you would need to go and change immediately. Do not let yourself rely entirely on the diaper, if possible, practice calming yourself down and being in control.

5. Carry a bottle of water and a little snack. Especially during a flare. We get dehydrated much faster due to the increased loss of fluids, and this can lead to exhaustion when carrying a heavy shopping basket or walking for way too long. At one point I thought it would be a good idea to eat and drink lightly before going to the store. Wrong. Once I collected all I needed, I reached the queue, started seeing black, got ringing in my ears and came crashing down. I was lucky enough to have strangers bring me water, but it’s always better to avoid coming to this point in the first place.

6. Take it or leave it. Indecisiveness might lead to panic if you are standing in front of two items for five minutes. If you can’t decide on the spot, leave. It might come to you later, it might not, but it isn’t worth whatever calmness you are able to generate at the moment.

7. Listen to music. Focus on the lyrics, the melody, mouth the words if you like, imagine you are in your own music video, doing your little dance, walking down the aisle. So what if someone thinks you are looking weird. Do whatever takes your mind off of a possible accident happening.

8. Carry an emergency package. If you don’t have an option to go back home right away, an emergency package consisting of spare pants, underwear, wet wipes and antibacterial soap is going to be a lifesaver. You can easily change in a restaurant bathroom or a public one.

What I find most important, if these things happen to you on a regular basis, do not let it get to you. Yes, you might feel like an utter failure coming home and needing to change your pants several times a month, but it is imperative you walk out of the situation with your head held high.

You have a complicated illness that is a mixture of physical and mental conditions, and you are doing your best. Let go of any feelings of shame and embarrassment. These won’t do you any good. If it happens, it happens. In the end, it is nothing a bit of water and tissues can´t solve. Staying strong and staying calm gives you a bigger chance to make it next time and celebrate another little victory.

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Thinkstock Image By: Ingram Publishing

My first experience in a hospital was my sophomore year of college. I had managed to go 20 years without a broken bone or serious illness, so when I was assigned to do my music therapy clinical at a children’s hospital I was completely non-empathetic toward the needs of a hospitalized child.

My supervisor was very informative. She constantly emphasized the importance of choice, so I listened and always brought multiple colors of every instrument and an array of songs from every genre so the kids could have full control of the music-making experience. These options were supposed to give them some control of their surroundings and their condition. I knew choice was important, but it took losing control of my own body to understand why.

I got diagnosed with ulcerative colitis a couple of months after my hospital practicum ended. I could write a whole book on the way colitis changed my life, but for this essay the important fact is that life as I knew it was taken from me. I was newly 21 and instead of going out for cocktails with my friends, I was taking a cocktail of vitamins and steroids then going to bed early. I went from being an athlete and active member of student organizations to a frequent attendant at the doctor’s office and a two-time colonoscopy champion in the course of one semester. I was robbed of my energy and my only option was to keep listening to my doctor.

During my weekly outpatient hospital stay (iron infusions, ftw), I was trying to study for finals when a volunteer with a cart came to my chair. She asked me what I wanted for lunch and listed for me all the sandwich fillings I could choose from. The variety of choices was exciting and a pleasant change of pace from my usual hospital conversations. As I chose my filling she reached into the cart and then asked one more questions “white bread or whole wheat?” I was overcome with emotion as I held my whole-wheat egg salad sandwich because someone was actually asking me what I wanted to put in my body, down to the type of bread.

After that I understood the value of choice. When you are sick you have no choice in how your body is going to act. You have some choices in treatment options and those become narrower when looking at insurance coverage and risks. But you can choose what color maraca you want to shake with the music therapist, and you can choose your sandwich, and sometimes those seemingly trivial choices are what you need to gain a say on something in your life.

From that point on, I went through my remaining semesters of college making every choice in my power. I chose to sleep when I was tired, to celebrate when I had energy. These choices empowered me and eventually I chose to not just listen to my doctor but have a discussion. I chose to question treatment options and seek a second opinion when I wanted more options to better suit my lifestyle. As cliché as I am for saying this, I did choose to take my life back because a sandwich showed me that my diagnosis can only take what I give it the power to take.

Three years and a college degree later, I am choosing a life that fulfills me. I took a job as a music therapist where I can give clients choices every day. While everyone has a different diagnosis and story, I know from experience that inevitably every diagnosis comes with the sense of loss of control, and I can proudly provide options to give that control back every day. And that’s my silver lining and the reason I will be forever grateful to colitis.

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Thinkstock photo via DragonImages.

One of my biggest challenges hasn’t been learning how to deal with the gory symptoms of my ulcerative colitis – nor has it been the extreme tiredness I face after a morning of running errands. I’m doing OK with the stomach cramps and joint pain, and I am slowly accepting the ways in which my life has changed since my diagnosis.

Instead, I’m struggling to find the right way to talk about my condition. Half of me is desperate to scream about it from the rooftops, the slightly more considerate part of me realizes that most people have no interest in hearing about the blood I lose when I go to the toilet or the meal that made me think my insides had gone into civil war. Despite that, I know more than anything that talking is one of the best ways of managing, dealing or coping with our circumstances.

So I started small and told my best friend, my immediate family and my boss. Then eventually, I ran out of excuses for everyone else and realized I had to say something when I stopped meeting up with my friends and hadn’t seen my gym buddy for two months. The conversations always went a bit like this:

Me: “Sorry I didn’t make it. I’ve been diagnosed with an inflammatory bowel disease and I’m flaring up pretty bad right now.”
My friend: “Oh, like irritable bowl syndrome? My uncle has that — you should stop eating pizza or something.”

Me: “I have ulcerative colitis.”
My friend: “Ulcers? Like a stomach ulcer? I had one once, but my doctor gave me antibiotics and I was fine so stop worrying.”

Me: “Yeah I’m sorry I couldn’t make it. I was in hospital on that day.”
My friend: “What? You’re still not well? You look totally healthy though – you’re probably much better by now, right?”

The list goes on, and I get it. I had never even heard of ulcerative colitis before my trip to the gastroenterologist, so I definitely don’t expect my friends to understand the ins and outs of my colon. However, I can’t help but feel even more demotivated to talk openly when everyone has an assumption, or preconception.

So what am I proposing? Don’t jump to conclusions. Work hard to find the balance between offering support and suggesting you know it all. Educate yourself – if a friend or family member is going through a diagnosis, understanding the symptoms and triggers will make things easier for everyone.

Listen, too. Listen before you give your thoughts or feelings. In return, I promise I won’t shout the next time someone suggests I cut dairy and gluten from my diet (seriously, don’t even consider telling me to stop eating cupcakes). I promise to take a deep breath and teach you something about my disease. I promise to answer questions – as invasive as you fancy! I also promise to keep talking, even when I feel discouraged and disheartened, because talking to the best way of managing, dealing or coping with our circumstances.

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