Being a Big Ol' Pain in the Butt

After months of planning and excitement, we are THRILLED to share with you 'The Butt Campaign' - a campaign of passion, courage, and most importantly guts.

Pledge to be a pain in the butt with us here. Together, we will be pains in the butt until there is a cure.

Not The Same Thing

In order to avoid having a mental breakdown, I shall choose to be constructive in writing this post and explaining what is bothering me so much. DEEP BREATH - okay, here goes:

Let us begin by going back to elementary school. Circle and square: not the same thing. Dog and cat: not the same thing. Being five or thirty-eight: not the same thing. Being hot or cold: not the same thing. Now let’s see if you’ve clued into the pattern - Crohn’s and another disease/illness: not the same thing.

I know someone who had pneumonia a month or so ago and continues to recover. I hadn’t seen her in a few weeks because I’ve been having problems with my stoma - which, to note, is hard to explain because I’m not sick, but having a localized issue - and she somehow thinks that these are the same thing. I’ve never had pneumonia and can’t comment on what it’s like - but that’s the point, I don’t know so I can’t say anything. But it does not stop this individual - on and on with the metaphors and how we’re so similar and how we have to take care of ourselves and all of those ooey-gooey things you’d say in a therapy session in a saccharine movie. The entire time I was talking with her I wanted to be like, “Wait, I’m sorry, am I on Punk’d? Are you serious?” I demonstrated incredible restraint in not bursting into laughter or raising my eyebrows at her incredulous claims. When she found out that my parents aren’t in the city, or the country for that matter, she was so apologetic and fails to understand that having a chronic illness is different than having an acute illness and I have a support system and she does not have an honest clue about me.

And then there’s the matter of her ‘expertise’. Well, she’d have you know, her cousin has Crohn’s and therefore she is an expert. She knows all about it. Everything. You couldn’t tell her one new thing. Never mind the fact that she doesn’t believe in Western medicine - which is one thing, but please don’t tell me that my beliefs are wrong - and does not understand that IBD is so varied in presentation and severity and that having a stoma problem is not, in fact, an IBD problem. But pish posh, she’s the expert, who am I kidding (insert groan here).

I’ll take the opportunity to apologize for my invariably sarcastic diatribe, but give me a moment to explain to you why I wrote this. I truly, truly believe that is it wrong to compare suffering of any kind. We cannot possibly try to make pain ordinal - we can’t say that Crohn’s is worse than asthma, we can’t assign judgments - it’s impossible, but moreover it’s utterly unfair to the individual dealing with the illness/pain/life event. Who am I to say, as someone who’s only lived my life in my body, that someone else’s issue is easier to cope with than my own? I don’t have that authority and when people attempt to pull out a ‘suffering scale’ to compare things, I am automatically turned off and endlessly annoyed. 

A friend of mine said this the other day in a conversation and I thought it was brilliant, “it’s not comparative, it’s analogous”. I think if we truly want to understand one another and be empathetic and supportive, then we must listen and believe that our experiences are analogous but not the same thing as someone else’s. Only you know your body and your beliefs and your lifestyle and your dreams, and no one else can tell you differently. 

But did I say anything to this person that I know? Nope, and here’s why: I genuinely feel badly that she is in pain and that her recovery is slower than anticipated. I have long ago had the ‘eureka’ moments in regards to health and life and will let her have hers all to herself. I know she doesn’t say anything out of malicious intent, and that her words aren’t meant to deride to degrade my medical experiences. And because, at the end of each and every day, we are different people - we are not the same.

Jennie

Laugh & a Half

It seemed like a good idea the way that all things seem like a good idea at first. I told my Mom, and this was her exact reaction, “What? You’re going to run a half-marathon?” My Mom laughing at me should have been - for a normal person - a road-sign to turn around, to rethink the plan. But no, instead I smiled and said, “Yes!”

But this story doesn’t really begin with me. It begins with an email. I met my very dear friend Taylor through The Gutsy Generation blog. Without fail, we would text or email daily - but we had never met in person. We were enthusiastic to meet in person (I know, it sounds like a cheesy romantic comedy, but stay with me), but it seem idealistic and near impossible between our school schedules and the geographical distance. But - if there’s a take-away message to this blog post - never, under any circumstance, underestimate two gutsy girls.

And so, one day in June, Taylor and I decided to run the Niagara Falls International Half-Marathon. Crazy? Yes. Gutsy? Certainly. We were both runners already and it was a fantastic excuse to meet in person. The preparation got underway with the creation of a ‘GUTSY MARATHON MIX’ (yes, in all caps!) and the continual sharing of songs to be vetted for the playlist. I booked my flights - it was all happening for real.

I’m not an especially athletic individual, but in the last few months since my surgery in January, I’ve hiked Machu Picchu and completed a sprint triathlon, so it only seemed right to continue on in my crazed athletic quest. I had told several people about the race, including my roommates who made the most adorable signs for me around our apartment. 

Early Thursday morning, I boarded a plane and met my very good friend in the flesh. And it was as if we’d always known one another. We continued to find little things that fueled our theory that we’re the same person (e.g. we use the same toothpaste, go to schools with the same initials, etc) - we might have become friends because of our IBD, but we remained friends because of who we are as people.

The half-marathon was not for IBD awareness, but that didn’t deter us. We made shirts that had our last names on the back, our year of diagnosis, and then ‘Colonless 1’ and ‘Colonless 2’ on the sleeves. In a word, we were psyched. Morning found us quite early on Sunday, and we gathered in the kitchen, making our marathon breakfast, grinning sheepishly at each other and trying to imagine completing the 21 km course. 

The day was perfect - perfect weather, perfect scenery, perfect. The course followed the water and with the changing leaves, it was a beautiful (albeit very long) Sunday run. People were cheering, holding water on the side of the course, there was even a little boy with his hand out for high-fives (of course I stopped and had to restrain myself from asking his parents to take a picture with me). It was just me and my iPod and the bounce of my braid against my back as I ran. Just open road and sunshine and a very big, but attainable, challenge ahead of me. I began the race to “We Are Never Ever Getting Back Together”, my ostomy anthem, and was ecstatic to be able to listen to my gutsy marathon mix during the race. There were moments when it was hard and my feet were sore, moments when I tried to drink the water while running and instead doused myself in it, and moments when the sound of the crowds cheering and the cow-bells ringing could only make me feel so happy to be where I was. 

I felt this exact way in Peru and during the sprint triathlon - you look forward to the finish line so much because there’s a sense of accomplishment and awe, but those last few feet when you can see it, you want to turn around and do it all again. I sprinted the last 100 meters or so, crossed the finish line, which was amazingly at Niagara Falls, and was given a pro-style aluminum-like cape and a medal. I. Had. Done. It.

Now to get all philosophical on you: In life, and especially life with IBD, there are no guarantees. There are ups and downs, times when you feel awesome and times when you’d prefer to pull the covers over your head and pretend the world wasn’t waiting. Taylor and I had a mantra the entire weekend leading up to the race, “Hell or high water”. We were both sick or injured in some degree, but were determined and completely obstinate - we were running the race and nothing could stop us. 

Hell or high water, people. Hell or high water.

Jennie

Guest Post: Marc's Story

We are pleased to present the next post in our Guest Post series by the wonderful Marc from GutInspired! We hope you enjoy his post as much as we do!
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Dear Ileocecal Valve,

It's been almost 5 years now, and every day I still miss you, whether I think about you or not. I'm really sorry that I didn't get to know about you better before you were gone. You did so much for me and I never really appreciated you until it was too late. You were always there for me, the unsung hero of my ileum, the gateway to the colon, the bile salt barrier of the bowel, until the day I agreed to let a surgeon in and take what bowel he deemed irreparable. Damaged. Diseased.

Sadly, that included you, dear valve. Even then I didn't know what you were. It wouldn't be until weeks later, when I was healing and expecting a certain pre-disease quality of life to return, that I would ask my nurse why I was so... Loose in the caboose... Constantly Russian, if you catch my drift. That was when she would tell me about you, about the role you played in motility and preventing bile salts from upsetting the colon. That was when I would be forced to face my possibly worst misconception about the outcome of surgery, and when I would wish I had known about you sooner. If anyone mentioned you before surgery I don't remember. I doubt it. I think I understand why though: compared to the prospect of waking up with a stoma, the loss of you was probably at the back of the doctors' and nurses' mind. Losing my ileocecal valve was probably in a best-case scenario for them, and I don't know what I would have done differently had I even known about you beforehand. I sometimes imagine I would've asked the surgeon to consider keeping you if possible, but I don’t believe that would have ever worked. You were just in the wrong place at the wrong time. You had to go, and I miss you terribly, because it seems like the only thing keeping me from being more "normal" now is the lack of you in my life. You really knew how to just slow things down for me. I sometimes feel guilty about it; I could have done more to prevent the need for surgery, to avoid it maybe. Then none of this would even be a problem.

But what's done is done. I probably shouldn't be so regretful, really. In fact I should be thankful. I may have lost you, but I could have lost more. I mean, I lost my appendix too, but that's cool, it wasn't doing much anyway. I lost almost a meter of bowel along with you, and I sometimes wish I could have some of that back too, so maybe my iron wouldn't be so low all the time. I am once in an odd while kind of upset that my "quality of life" hasn't returned to what I thought it would be, and instead I've been forced to accept a new standard as my own. I think that makes me upset mostly because I thought it was possible for me. It sucks to be told there's nothing to be done but to get used to it, and take more pills. I was aiming to be off of pills by now.

Such is life! It could be worse. I may not be off all the medications, and I may have switched out pills to deal with those bile salts you so effectively kept out of my colon before, but I'm better now than I was the year before surgery. I'm not on Prednisone anymore! It just wasn't what I was expecting for my outcome, is all. Even after 5 years it still gets me sometimes. It's hard to be truly prepared for something as life changing as surgery, and I'm sorry I didn't prepare well enough to realize you'd be gone when I woke up. I hope others will be more prepared than I was, and consider their possible outcomes carefully. I'm adjusting without you, my long lost ileocecal valve, and while it hasn't always been fun I'm happy I can say it hasn't held me back yet either. Though there have been a few close calls.

Goodbye, lost piece of me. You are irreplaceable (I've asked!), and I hope you are the last of my guts I will ever lose. You sure will be remembered now.

Yours truly,

Marc

Complicated

In addition to my Psychology major, I decided to minor in English. For no good reason really, just because I liked reading and discussing literature and wanted to continue with it. There are few real requirements for a minor - a Brit Lit class here and there - but generally you get to choose from a range of courses. And that’s how I ended up enrolled in a literary non-fiction class. 

The books we’re reading this semester are truly fascinating - memoirs and essays that I likely wouldn’t have been aware of on my own and yet have really liked so far. As part of the course, a partner and I get to present one of the course books, and once I saw the medical book, ‘Complications’, I knew it’s what I wanted to do. (After all, what IBDer can resist a medical book?)

Then began the task of reading the book. It’s an accessible read, easy to get in to, but I found it very difficult to ‘get out’ of. Mid-way through the book I developed an aversion to it and the physician-based approach it took, a sentiment of ‘sewing the patient up’ and the patient being ‘a-okay’. What about the recovery, those days in the hospital with pain medication and walking laps around the nurses’ station? What about the months afterwards when you’re in between illness and health? What about the patient as an individual?

I know I read between the lines and perhaps gleaned things the author did not mean. Nonetheless, no matter how far I can physically get away from a hospital, I am a patient. I am a patient who knows that the best doctors are those who know what my major is and not just where my disease is, who know how to make me laugh and not just cry, who know my preferred ostomy products and not simply that I have an ostomy. The book made me feel uneasy and exchangeable - that patients were all just patients, a mass of individuals who blended together. And truthfully, that is not what the book said, it did speak of the unique qualities of patients, but in a dismissive quality that made me grimace.

And it makes me wonder - I want to be a clinician and a researcher, but if I can only see the patient in the mirror, what does that mean? I think what it means (after a lengthy self-reflection) is that I see my own experiences in others, regardless of age or disease, my identity as a patient is essential in being able to empathize with others. You can’t know what blueberry pie tastes like unless you’ve had it, you can’t know what it’s like to live with a chronic disease unless you have.

In the ever-wise words of Avril Lavigne, “Why do you have to go and make things so complicated?” I don’t regret reading the book for a moment because it gave me some insight to a physician’s way of thinking. If anything, perhaps, it makes me want to work harder so that we can understand patients as a whole and not just a sick organ.

Jennie

One of These Things is Not Like the Other

I don’t know how true this is for any other 20-something-year-old with a chronic illness, so I will not pretend to speak for everyone. Instead, as I always try to do, I will speak for myself.

I am different than my healthy peers. There is something beyond bowels and bloodwork and PICC lines that is essentially different about me, making me no better or worse, just different. I am not my disease, but the experiences that Crohn’s exposed me too have become so entangled that I am somewhere in the middle, that grey, unmapped, undiscovered territory. It’s much more of a psychological difference for me, and sometimes I think that if it were possible to peel the core of who I am away from my body, the difference would be as clear as night and day. But it’s an invisible difference, one I can only feel.

When I was about five years old, my family was at a beach on vacation. I was waddling into the water, likely looking out at a dock in the distance or a seagull overhead, when, from behind, my Mom snatched me up. She was relieved to have caught me since the shallow water was full of leeches swirling around my feet. But the thing was that I had been completely unaware of the leeches, oblivious to the hurt that could have been in store for me. When you know the floor under your feet may break at any moment, you walk more carefully than if you didn’t know, even if the floor is just as dangerous. And that’s what it’s like - I have a sense of hesitation when it comes to health, having been humbled by the body I could not control. My friends and classmates have a fearless faith in terms of their health, a faith I cannot pretend to have ever truly known or understood. 

Maybe this is why I love meeting others with chronic illnesses so much, because there’s something untranslatable that they understand, and the differences we have from our healthy peers is absorbed or neutralized in one another’s presence. For a long time I think I wanted to be normal, to do normal things and to feel normal things and to be a normal kid. But having a chronic illness changes you - but what it changes is up to you. 

I am different from lots of people. I’m different from my sister because she doesn’t like chickpeas, I’m different from my friend because I have brown hair, I’m different from my roommates because I’m a little older than they are. I may be different from you because I have a dog, or can’t sing, or have never been to California, or because I work in a preschool. And yes, I’m different than some because I have Crohn’s and an ostomy. But we have to remember that ‘different’ and ‘bad’ are not synonyms, we’re all different from each other in some ways. 

Your bones may shape your body, but your heart shapes your life.

Jennie

Guest Post: Jaime's Story

We're so excited to be featuring Jaime, an accomplished advocate for those with IBD. Jaime is a weekly contributor to Healthline’s  This Week in Crohn’s and IBD support advocate for Support Crohn’s Disease and Ulcerative Colitis.

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'A Letter to My 15-Year-Old Self'

A couple of weeks ago, a member posted a question on the Facebook page I help admin. She was asking for tips on how to survive going back to school. This wasn’t just your every day run of the mill question for me; it tugged at my heartstrings a little. 

You see, the question came from a 15-year-old girl who was getting ready to head back to high school in a few days. She was filled with all the same, familiar (haunting even), worries that your typical teen would have before heading back to high school after a two-month hiatus — only in this case, she has ulcerative colitis. Now pile those worries on top of feeling like you’re under a microscope every time you have to abruptly leave your seat and head to your teacher’s desk to request a bathroom pass while your peers stare at your back; and we all know, sometimes waiting is not an option and an abrupt exit is necessary. And those extended absences, don’t even get me started on those … I started getting anxious for her. 

So as I started writing out my “back-to-school” tips for this girl, I saw my own experiences and struggles flash before my eyes. Before I knew it, the list started to take shape like the letter I wish I could have left for my 15-year-old self over half a lifetime ago. 

Here’s how it went… (P.S., I’ve edited certain parts to help organize it better and added additional information I intend to pass on to Jane.)

Hi Jane,

If I could bring my 15-year-old self back to talk to you, I would. But since I can't, I will have to go off of my memories of 15 years ago. By now, you probably know to mentally map out where every restroom is located. Coming and going from school during flares and other illnesses is the pits. I remember those days well... always felt like I had to work hard and refriend my friends. 

Tip #1. Maintain Friendships.

Whenever I came back to school, I always had this awkward feeling when rejoining my friends for lunch or on a break. It was if I had missed a lifetime. Certain inside jokes I once would have been part of, were now lost on me.  When it came to lunchtime or breaks we’d usually meet in the same places. On occasion those spots would have to change for one reason or another, and when they did I felt awkward wandering around looking for my friends. 

Who were these new people? I’d only been gone for a week, maybe two (sometimes more)? New people had joined our group and now looked at me odd as if I was the “new person.” I felt abandoned in some ways. 

But in reality, I had abandoned them — unfriended if you will — because when I was not at school, I barely spoke to a soul. In teenage land a lot can happen when you’re gone for 10 days or 5 weeks, let alone two-whole semesters. 

Talking to some of them now (15 years later), a few didn't even know I was so sick or what with. So maintaining your friendships at school even when away will help alleviate some of that "heading back to school" anxiety that creeps up when you are coming off an extended illness and are physically ready to go back. Here are some other helpful tips...

Tip #2. Back-Up Clothing. 

Keep an extra set of clothes in your locker and/or car. I considered this a mental trick, I knew they were there and never had to use them; but felt safe knowing they were there. If you keep your spare clothing in the car, this means that if you have that “oh no” feeling while out and about — it’s okay, you have backup. Always keep a sweater or jacket in your backpack that you can tie around your waist, just in case something was to happen.

Tip #3. Educate Your Educators. 

Either go by yourself, or have your academic adviser/guidance counselor speak to your teachers when they are on their planning hour or before class starts. I recommend having an advisor or counselor with you. These are the most important areas to cover:

a) The CCFA has an amazing guide to help educate your educators. Yep. You will have to be the teacher in this instance. I recommend visiting the link and reviewing the entire page. Next, copy and paste the relevant areas that apply to you on one document, and then print it out to dispense to your advisor/counselor and teachers. Here’s the link.

b) Reinforce the fact that you may need to abruptly leave class and can they buddy you up with someone who is a good note taker (every class has one); if you don't feel comfortable with that, ask if you can leave a digital recorder running at their desk to record the lesson. 

c) Along with having to leave abruptly, you may be out of the classroom when this class ends and the next one would begin. You may need them to hold your belongings at their desk so you can retrieve them as efficiently as possible so as to avoid disruption of their next class.

d) Your illness may cause extended absences, how can you best communicate with them (email, voice mail, school website) to keep your assignments on target.

Tip #4. Get a Permanent Bathroom Pass!

Get a permanent bathroom pass. If your school doesn’t have one yet, have them make you one. In the U.S., IBD is now recognized under the ADA and you cannot be denied bathroom access at school or even while out and shopping. I waited far too long to speak up, and wish I had asked for one sooner. Once they made one for me, my school’s secretary was nice enough to laminate the pass. What a smart lady!

In the meantime, you can get a Medical Alert Restroom Access pass from MyIBD.org; this may be especially helpful to get the ball rolling at your school. But I do recommend getting a school-issued pass. Why? In the event someone not familiar with you or your situation challenges your being out of class in a not-so-opportune moment, this is your safety net.

So, I got a little exclamation mark happy toward the end; it happens. I also might have been overcompensating with those marks, because of some of the darker memories swirling around my brain as I wrote the tips out. 

I didn’t get into all the intricacies that led up to my figuring out these tips, like a decade’s worth of misdiagnoses and failed treatments before I was diagnosed with Crohn’s, or how educators whom I had once trusted as confidants began to doubt my illness. Instead, I wanted to give Jane as much information as possible free of the baggage that led me to learn it in the first place. I can leave those stories for another post.  

But for now, Jane said the tips helped and I’m patiently (okay excitedly) awaiting to hear how her first week went. In the end, I think my 15-year-old self would approve.

Jaime

Here We Go

As I was driving from Nova Scotia to Boston for school, I tried to think of the first day of classes my junior year. I was struggling trying to remember, and then it came to me: I didn’t go to the first day of classes because my body decided the ER was a better place to be. Nothing like starting off the year on the wrong foot.

I can summarize the fall semester of my junior year in one word: awful. I had the classes I wanted to take, everything moved in and meticulously set up in my room, a growing contingent of friends to explore the city with. But luckily for me (irony never gets old), I was entrenched in constant mechanical ileum bowel obstructions and ended up spending 2/3rds of the semester slightly (or okay mostly) drugged and trying desperately to figure out how to get better. And as I write this and think back to that time, it makes my stomach sore and also makes me want to have someone playing a violin in the corner as I recount my sob story. But instead I’ll just say this - that was a semester to survive, not one to enjoy.

For a long time I thought that every new school year had an obligation to set loose a varying kind of havoc on my body. Every year was something a little different, a little more challenging, a little more tiring. And before this post turns into a sappy, soap-opera worthy story-line, let me say this: this year is going to be different.

I’m (mostly) fixed, having discovered the etiology of my mechanical bowel obstructions (who knew yoga could be so dangerous!) and am absolutely elated to say that I haven’t had an obstruction since December (minus my obstruction in April, but hey I ate about 7 apples so that was my fault). It makes a world of difference having my body back and being able to do what I want. As my boss this summer said, ‘planning is important, plans are useless’ - aka nothing goes according to plan, but learning to swing with the punches and expect issues is the trick. I’m not naive enough to think I’ll be completely honky-dorey the entire semester, or that things won’t be bumpy, but I’m ready for what’s to come.

Here’s to the new school year. Here’s to new challenges. Here’s to resiliency, perseverance, and courage. Here’s to making new friends. Here’s to learning. Here’s to hoping the most stressful event of the semester will be an exam. Here’s to my senior year. Here’s to getting back up when you fall. Here’s to scars that remind me where I’ve been. Here’s to health and happiness and hope.

Here we go.

Jennie

Guest Post: Sami's Story

Introducing Sami - a wonderful blogger for LOOP. Featuring a blogger as gutsy as Sami makes us very proud. Moreover, it makes us optimistic and enthusiastic for the future of IBD advocacy. 
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'The Guts I Don't Have'

When I was fourteen and diagnosed with Ulcerative Colitis, it wasn’t a big deal. I defined my disease by what it wasn’t: Crohn’s, severe, terminal, cancer, or steroid-dependent. True, it wasn’t normalcy either, but I felt assured I’d be in that small percentage of IBD kids who live on just an ASA.  Why shouldn’t I? I spent only three days in the hospital post-diagnosis, after my doctors predicted a much longer stay, so I assumed that was a sign of things to come. When I returned to school, I actually felt embarrassed of my hospital stay. It just didn’t feel like a big deal to me. It was only three days. It was only UC. It was only my colon, a potentially removable organ. I defined myself by the guts I didn’t have and moved on believing my diseased guts were as close to normal guts as possible. I hit remission soon after.

That remission fell through a few months later. I flared worse than ever before, and some of the heavier medications were on the table. I remember listening to my pediatric GI break the options down and remembering my thoughts that very first night in the hospital. This wasn’t supposed to be me. When the steroids used to control my flare failed halfway through the tapering off process, I felt that gnawing feeling again. This wasn’t supposed to be me.

Both “flare summers,” as they’ve become known, I attended a sleepaway theatre camp in upstate New York. I was lucky to have been accepted and would have attended even I’d had to drag an IV pole along with me. Fortunately, I did not need to pack an IV pole, but I did need to bring steroids along with me. The theatre camp session directly conflicted with my local Camp Oasis session, a fact I was acutely aware of but which never bothered me. I defined Camp Oasis as Camp Whiny Sick Kid. Even during my roughest periods, I felt assured my guts were far too normal for that. I’m very proud of the fact that at my roundest and puffiest, I was not embarrassed to put on a tiny costume and pretend to be a bird onstage. I don’t regret my decision, as theatre camp gave me six great weeks of memories over two summers, but I am embarrassed of my attitude. At camp, like everywhere else, I kept my disease on the down low. I remember my roommates complaining to me that my (steroid-damaged) hair was all over the floor, and instead of using that opportunity to at least bring up my disease, I made up some ridiculous excuse. 

Don’t get me wrong; I believe that UC should not be the focus of one’s life whenever possible, but I took that belief to an extreme. I really only gave it attention when I was whining to my mom about it - I wish we didn’t have to keep a poop journal, I don’t want to tell my teachers, I hate steroids, etc - so it’s ironic I referred to Camp Oasis as Camp Whiny Sick Kid. I thought I was too mature and not sick enough for camp, but I don’t think I was right on either count. I don’t regret choosing theatre camp over Oasis, but I definitely could have benefitted from the lessons offered by a week at Oasis.

I can say this with a good amount of certainty because I spent a week this summer there as a counselor. At eighteen, I was just barely older than some of the campers, so I was able to experience camp from a unique perspective: young enough to relate to the camper perspective, but old enough to act as a role model. I felt terribly nervous on the bus ride to camp, even as I started to interact comfortably with the kids. Just two years ago, I could not possibly have been in this position, age aside. I just would not have been a good role model. I took my medications on schedule, but I did not embrace or take leadership over my disease, which are two of the main qualities Oasis strives to instill in young IBD patients. The past two years have changed me a lot, as I now have close relationships with other IBD patients and several organizations, but could I really be ready? I’d never attended Oasis as a camper, even the two summers I didn’t attend theatre camp and could, but here I was as a counselor. Craziness! I never imagined having a disease, but even once I had that disease, I never imagined myself doing this.

I expected Oasis to introduce me to a lot of examples of the guts I don’t have, which it did. When I met one of my co-counselors at the bus stop and she went through her medical history, my first thought was “out-of-my-league.” In some ways, then, I haven’t changed how I look at my disease completely. I still have a tendency to define myself by the guts I don’t have more than the guts I do. Then, we grew especially close over the week. As we opened up to each other, we found more similarities in our histories than differences. This was the girl I never imagined myself relating to, but here we were pouring Miralax together and laughing like crazy. I had similar experiences with many of the girls in my cabin and other counselors. I went to camp looking for the differences I expected to find, the presumed differences that led me to avoid Oasis for four years, but found similarities instead. One of my favorite moments at camp was when one of my shyer girls saw me pour my Miralax into my drink and yelled, “Hey, I take that too!” Those moments at camp are moments that seldom happen outside of camp, and they’re just one of many reasons I cannot wait for Camp Oasis 2013.

When I was fourteen, I made the choice to not let my UC define me and attend theatre camp over Oasis. I’m proud of that decision, but I wish I’d made it for better reasons and could have seen my disease for what it was rather than what it wasn’t. It sounds silly, but this summer, I learned that disease course does not define a patient nearly as much as attitude. IBD wasn’t in my plans, but if this crazy disease isn’t going anywhere, I’m okay with calling it mine. After all, it’s given me at least as much as it’s taken away. Oasis 2013, here I come.

Sami

Guest Post: Alyssa's Story

Here it is, the blog we've been waiting for (pun intended)! So excited to feature Alyssa, author of Love For Mutant Guts - which is such an awesome name, if we do say so ourselves. Hope you enjoy her post as much as we do!

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'Waiting'

Most of you are too familiar with waiting. Waiting months to see doctors who show up hours after your appointment time; waiting to see if a new treatment will turn your life around; and most agonizing of all, waiting for the day you can forget about your broken body and just feel normal.

I would like to share some ideas for passing the time and thoughts on my questionable choices because I know how awful waiting can be, and I am willing to bet that some of you have fallen into similar patterns. When you are sick and just waiting to feel better, your family and friends will not understand what you are going through. They just can’t. That is why, dear friends, we must unleash our inner thoughts to strangers who have also felt broken.

Back before a few new conditions arose and I was “just” dealing with severe Crohn’s disease, I had a knack for making good use of waiting time. I did schoolwork and read books in waiting rooms, hospital beds, and even in the bathroom as I waited for my guts to cooperate enough for me to venture out. Nurses and doctors frequently complimented my dedication, but it was all normal for me. I couldn’t move around much, so I figured I might as well read until I got too tired or dopey. My mind thrives on intellectual challenges, but my perfectionism turns my beloved books and schoolwork into stressors. I always felt like I should try to catch up with my extremely intelligent friends, most of whom got consistently better grades while reading more extracurricular books than I ever could. Friends, I can tell you with the utmost confidence that worrying about catching up is a foolish pursuit.

Take life at your own pace. I hate to break it to you, but you can’t catch up. All you can do is make mindful choices to make the most of each day. Sometimes illness makes us feel like life is passing us by. Joint pain and malnutrition may slow us down and make us feel hopelessly different from our healthy peers, misbehaving guts may drive friends away when we frequently cancel plans, but the emotional impact of chronic illness seems to primarily stem from the fear that our suffering will seize complete control over our lives. We may lose a lot of control, but really good friends will understand and adapt to our limitations, and we can change the course of our lives by learning how to cope with our health issues instead of just wishing things would change. I am still learning, but I have come a long way thanks to the support of a few kind friends and a whole bunch of people with IBD and ostomies.

Back when I had a full set of organs, I waited for treatments to potentially help me achieve remission, school became extremely difficult, but my optimism stayed intact because I didn’t give myself much time to think about anything but my academic goals, and I honestly kept thinking I was only a few months away from feeling great. It turns out I was making a few mistakes. I highly recommend using your time wisely, but I don’t recommend my previous strategy of working to the point of exhaustion. Apparently there is such a thing as too much dedication to schoolwork, and such focused ambition can easily turn destructive when physical trouble demands dramatic lifestyle changes. Depending on your circumstances, you might have to be open to the possibility of finding new hobbies, academic paths and career options. Time away from school or work can be a blessing in disguise for people who end up finding occupations they truly love. While you’re waiting for life to change, you just might be able to figure out some new ways to feel truly fulfilled.

Pain and fatigue are a constant force limiting my physical and mental abilities. I have lost control over so many aspects of my life, and I am here to tell you that no matter how elusive they may seem, hope and joy are within your reach. Sometimes we just have to drag ourselves through rough days and dream of brighter times ahead. In the meantime, here are a few suggestions for passing the time:

Be a couch potato sometimes if you wish your brain had an “off” switch and it hurts to move.
I watch comedies when I need a distraction and I don’t want to think at all. Since I’m a political science student who doesn’t know much about the world, I also watch documentaries when I feel like learning. They’re also great distractions from my frustration, and I end up with all sorts of random knowledge. I get teased about this habit, but that’s okay. I think everyone can agree that nature shows can be nice for stress relief, but I also watch the occasional show about environmental destruction or human rights abuses. Avoid those if you’re already depressed.

Exercise: start small and respect your limits
Movement can be good, but within reason. If you’re really sick, stretching and walking might be the extent of your workouts. Apparently you should stop before you get dizzy and nauseous. If I’m in enough pain, I’m completely unmotivated to move. As soon as I’m feeling a little better, I tend go out and disrespect my limits. We can all agree that a bit of exercise is great for stress relief, but staying hydrated and maintaining a good electrolyte balance are more difficult with gut issues. If you work out to the point of needing serious recovery time, try not to feel too bad about your condition. When we’re waiting for our bodies to get stronger, it’s easy to get frustrated. I try to remind myself that I have to start somewhere.

Practice gratitude: spend some time thinking about your blessings.

Practicing gratitude is different than convincing yourself that your emotions and suffering are invalid just because other people seem to face more difficult circumstances. My mother tells me that just because there are starving refugee children in Africa, that doesn’t mean I’m not allowed to be upset about my condition. I get annoyed with myself for feeling frustrated, impatient, and hopeless because I figure I have no right to be sad. Other people who deal with different challenges have the right to be upset with their lives, but I should be satisfied with my blessings and accept my problems. I currently have very little advice for you if you fall into similar thought patterns. My friends are still trying to break me of this terrible habit. 

I can tell you that hearing stories to illustrate the point that “it could be worse” is dreadfully unhelpful. Don’t let others make you feel guilty for feeling awkward and miserable when you’re struggling with transitions and waiting for life to change. It’s easier said than done, but just ignore the “could be worse” stories and change topic of conversation. After hearing similar comments for years, I still don’t know how to gracefully respond to “At least you have all your limbs,” or “At least you don’t have cancer.” 

Improve bathroom time: IBD flares demand a  lot of time near a toilet, so you might as well find ways to make it less lousy.
It’s an embarrassing topic that is seldom discussed, but some of us have spent an insane amount of time waiting to get away from our bathrooms. Thanks to my rebellious intestines, I used to live in there for at least a few hours every day. Being stuck in that little room while your body turns itself inside out is not fun. I spent a lot of time doubled over with cramping, but I was conscious enough to get bored sometimes. I had books and magazines that had short stories and segments that involved less brainpower, but I also kept a bit of schoolwork in the bathroom. During particularly restricted times, I watched movies on my laptop and kept a little nest of pillows and blankets in near the toilet so I could get a bit of rest between bouts of misery. Eventually I found the perfect brands of various goodies that helped alleviate socially unmentionable skin issues and discovered that heating pads can help with abdominal cramping. Every time I figured out a new trick to make the bathroom more welcoming, I was so delighted. If you’re spending too much time stuck in the bathroom, talk to people about their tricks for feeling better. You won’t regret those awkward discussions!

Life is better with good company: find some gutsy buddies, read some blogs, and learn from others.
I may be a gimpy weirdo, but gosh darnit, I can still brighten someone’s day. I can reassure my fellow gut buddies that they are not alone, and I can participate in the IBD and ostomy communities. I encourage you to do the same regardless of your current condition. We are in this together, dear friends. Let’s do what we can to help each other out. Whether you’re so sad you can hardly stand it, a little cranky about being sick and different, or generally feeling okay, your contributions to every conversation with fellow gutsy buddies are more valued than you will ever know.

Alyssa