None of Your Business

For a long time, I thought I owed people disclosure of my Crohn’s Disease. I thought it was as obvious as my hair color and couldn’t get far into a conversation without it coming up in some way. And in truth, virtually any story from the last nine years relates back to my IBD, but nevertheless the disclosure was a near-immediate thing.

I challenged myself when I came to school to not tell people. Not to hide it from anyone, but to be Jennie first and a person living with Crohn’s second. But now, as I apply to graduate school, I feel torn.

Whenever I tell someone that I want to be a pediatric psychologist for chronically ill children, they always raise their eyebrows and comment on how specific it is. Why, they want to know, did I choose that? Well (insert sigh here), I often tell them, I have Crohn’s disease.

But this, in all reality, is not really true. Of course I do have Crohn’s, but I don’t want to be a psychologist because I have Crohn’s. My exposure to pediatric chronic illness was because of being a patient, but why I want to pursue Psychology is because I’m extremely passionate about the field and doing research. Not as a patient, as an academic.

And this is the push and pull of my disclosure saga - to tell or not to tell. It’s one thing when I’m sitting face to face with someone and have the opportunity to explain and show (aka flash) my ostomy and delve into my whole gut-filled story. Sure, okay. It’s quite another when I’m applying to graduate school and trying to articulate my relevant research experience, to people that I have never met before all over the country who will likely only look at my application for a matter of minutes. In this case, disclosing excessively seems unnecessary - an unprovoked therapy session almost - and so I’ve tried to step carefully, disclosing succinctly in a way that does not consume my personal essay.

The heart of the issue is that it’s my story to tell. Disclosing is a choice and I get to decide who gets to know. Be it for graduate school, or a new friend, or a boyfriend, I can choose whose business it is.

Because I am not Crohn’s. I am Jennie, and proud of it.

Jennie

Guest Post: Sarah's Story

We love meeting new gutsy friends - and are thrilled when they want to contribute to our blog! Meet Sarah: the founder of My Journey with Crohn's, a great site featuring interviews with IBDers and lots of information. Be sure to check her out on Facebook and Twitter as well!
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My name is Sarah Choueiry and I am honored to share my story with Crohn’s Disease.

I have to say that I never really took my Crohn’s seriously until these last couple of years. I remember my doctor telling me this, but there is something about being young and being diagnosed with something that may be too big to understand at the time. He said that typically, we have an “invincibility” feeling about ourselves and we don’t think it can really affect our lives. Well for me, I know that was the case. 

I was 12 when I started to have symptoms of Crohn’s Disease. It happened after a trip to Lebanon, were I caught a bad stomach virus (along with the rest of my family) but ever since that my stomach was never the same. My theory is that it was dormant till then, and that event woke it up, but who really knows. It took about two years for my doctors to finally diagnose me. Initially, my general doctor blamed it on a lot of things, saying it was psychological, my eating habits were bad and so on. Funny thing is, I was a happy kid who came from a loving family and who ate a very healthy Mediterranean style diet, so that did not add up. My mom fought with this doctor a lot and finally got him to send me to a specialist, who once hearing my symptoms automatically said, “I would like to test you for Crohn’s Disease.” I remember thinking, “What is Crohn’s Disease?” but never really asking it out loud. 

Well after my first, of many of course, colonoscopies at 14 (and many other tests) my gastroenterologist was right, I had Crohn’s Disease. The thing is, at that time, there was not a lot of research on Crohn’s Disease. The doctor put me on Asocal and that was about it. She had said that diet did not matter so we didn’t think of altering anything I was eating. When I would have a flare up, I would automatically eat light out of survival and I remember having a lot of rice and bland chicken, toast with cream cheese and melted cheese on pita bread. Notice the amount of dairy? We had no idea that dairy could be an issue because my whole life I always ate a Mediterranean diet, and that consists of a lot of cheese. Actually, to be honest, I didn’t really associate the harm of cheese in my stomach (it doesn’t affect all with Crohn’s but it definitely does mine) until two years ago when I did a “vegan” cleanse for a month and started to add cheese back and noticed the negative effects it had. Now that was a sad day for me . Who doesn’t love cheese, right? That is one hard thing about my disease for me. I am a huge lover of food and love to create recipes and I become limited on what I could eat, depending on how my body was feeling. It also limits a lot of the places I can go to eat, because the majority of my diet to be organic, fresh and meat free. For me, this diet works best to make me feel good. But hey, it is a challenge to be more creative and I am more then happy to accept it! 

But back to high school, all I really remember is not telling anyone because I felt embarrassed. Embarrassed that I had to run to the bathroom after every meal and that it would smell so bad. The worst! I remember having to go so bad and getting up to leave a class and the teacher called me out on it. Made me stand in front of the class asking, “Where do you think you are going? Can you not hold it in?” I thought I was going to die. After the class, I went up to her to tell her my situation in private and she definitely never did that again. I had my visits to the emergency room but nothing a weekend at home, with some TLC, couldn’t cure. 

In college, I started to feel it more. Maybe it was because I moved away from home (only an hour away but being in the dorms and away from my norm was stressful for me) and I had my first real boyfriend. He was actually great when it came to me and having Crohn’s. We would have a secret code that I would use when I had to use the bathroom ASAP and with out a question he would get me to a bathroom. I was lucky, because I know that dating in college, especially with Crohn’s Disease, is not easy at all. I remember having more attacks then but not running to the emergency room like I used to because I figured, it doesn’t do anything for me. I end up going right back home anyways with them saying, “stay hydrated, take your meds and try not to stress out.” As if that was the magic to keeping it all in remission and I was actively trying to not do it. It got annoying to be blamed or told I was causing my attacks, because people did not get it, I could be perfect and still have a flare up. 

Mid college it got pretty bad and I began a medication called 6mp, I also met my doctor who I have today and adore. It is so important to find a gastroenterologist you can develop a true respect and relationship with. I began the 6mp, gritting my teeth and complaining, because I believed that this was an over exaggeration. That taking these meds was admitting it was a bigger deal then it was. I thought, “so what, some tummy aches, who cares. Ill get over it, why are we getting so dramatic with 6mp.” BUT I took them and I did a shitty job of it, to be honest. I still at that point never took the time to research what Crohn’s Disease really was. I never even met anyone at that time who had Crohn’s Disease. I didn’t think anything could get me down. Also at that time I broke up with my boyfriend and very quickly began a relationship with someone that unfortunately was not as positive and supportive, and I think that contributed to the issues with my Crohn’s acting up. With me, I began to notice how much my stress level and happiness level played a role with how active my Crohn’s could get. 

Well since then I don’t think I ever really remember having “normal” poops. Sorry to be graphic but its true. I was used the consistent stomach aches and pains, and I just knew how to deal with it. My norm was going to the bathroom after stressful tests, after meals and I slowly started to notice the correlation between food and my stomach around the end of college. Crazy to think it took that long but I typically am a very healthy eater, so I never thought that there was more to it then just doing what I was doing. I went straight from college to my masters. After my masters I moved to Arizona to be with the guy (the one that I SHOULD have let get away… haha) and just a month after I moved I broke up with him and began a life on my own, away from my family, starting a new career and just learning to be with me. I have to say, it was the best year in my life. I also decided to stop taking the medication on my own, without consulting with my doctor. That was very stupid of me and I was lucky nothing bad happened, I would never recommend that to anyone. I really began to take time to learn about food and its effects in my body. I began to do yoga a lot more and study the effects of meditation on calming stress. I began to make great friends and grow closer to the ones I had back home and I also was not on medication. I have to say, I went into remission that year. I don’t recall any stomach problems at all. I have to contribute that to me finally finding a balance that worked for me. I cooked every night and never went out to eat, so I was in control of what went in my body and really made sure to take care of myself physically, emotionally and mentally. I always made sure to be surrounded by love too and had a great support system. I am lucky because I am blessed with a mother and father who ALWAYS stood by me and supported all my choices in life, and I honestly, still, don’t know what I would do with out them. It makes me sad to think that some may not have that support and that is one of the reasons I created my web site, but ill get to that later! 

So after Arizona I moved back to LA, met a new man in my life, started to work at a school I loved (I forgot to mention, I am a Speech Language Pathologist), and was back near my family and friends. I was doing ok not being medicated. Key word is ok. I was not perfect but I could handle the bathroom runs and occasional bad tummy aches. My Crohn’s, I think, was tired of getting ignored and decided to scream a little louder. In this last year and a half I started to go downhill. I was experiencing a lot of stress in my life, I moved to a new city away from my family (again), got engaged, was working at a job where everyone was so negative (that really affects me, being surrounded by negative people), got married and was meeting new people all over again. I am the type of person that does not do good with big changes or not feeling secure/stable in my life. Well, this last year a lot of that was happening. I began to try and search natural ways to heal my flares because they were getting much worse and I was having a hard time dealing with my every day routine. I even went to a holistic doctor and drank this specialty tea three times a day that tasted like crap and went on a pure vegan diet. That did not work. I ended up giving in and made an appointment with a gastroenterologist down in San Diego, while emailing my Gastroenterologist in LA to help guide me because I still considered him to be MY doctor and I trusted him. Well, after all the tests were done, I was right, my Crohn’s was back and with a vengeance. This was about 5 months ago, which means it had been active for a while because it took me a while to speak up. Well, we got an opportunity to go back to LA because my husband found a partner for a business he was starting and I knew I had to get back to LA to get better. I wanted to go back to my doctors and start, what I called, “the healing process.” The first week I moved back I had an appointment with my general doctor (who I also adore and have been with for a long time) and my gastroenterologist. We began me right away on 6mp and entecort, and of course I was gritting my teeth. Well, 2 months into the treatment I was hospitalized. I knew something bad was coming and tried to see my doctor the day before I went to the emergency room because the pain I was enduring was worse then normal, well I was right (that is one thing I know I am good at, listening to my body. That is key, if I can give any advice. Listen to your body and don’t ignore it. If you feel something is going on, check it out and go see your doctor. Be your advocate!). I ended up hospitalized for 7 days because my small intestine had obstructed and I needed to be put on IV steroid to see if that would open it back up by reducing the swelling OR it was surgery. Thank god the IV steroids worked. Also to find out the 6mp and the entecort was not doing it for me. My blood counts were VERY low and I just kinda fell apart. That week was hard for me, emotionally, mentally and physically. I was lucky because between my parents and my husband, I was never left alone to get too depressed about it all but it was hard. I understand if you are there now or have been there, its tough but man I give us props because I feel people who have Crohn’s are really a tough group of people. You cannot knock us down easy!

Well, that experience led me to create www.myjourneywithCrohn’s.com. I hope with this web site to share everything I know about Crohn’s and the tips that have helped me. I share things like recipes (a lot of course I give credit to my mom creating), news updates, interviews with people in the Crohn’s community, eastern/western medicine, funny stories and much more. I am proud of this web site. I think I need this web site. It is my therapy and it has allows me to meet such amazing people who have Crohn’s and hear their story, which it inspires me every day! I am hoping to do the same for others. So right now, I am all about My Journey With Crohn’s, healing and living my life. I start back up at work in January and will continue to dedicate a lot of my time on My Journey with Crohn’s. My future goal is to create a retreat at the end of next year for people with Crohn’s and oh, it will be GREAT! Can’t wait to share that soon. I am also starting up on a medication called, Humira and waiting to see if it works for me. I will continue to eat right and take care of myself emotionally and mentally, and try always to surround myself with positive people that make me laugh. I truly believe holistic methods help but there has to be a balance, at least for me, between eastern and western medicine at this time. I do hope to go into remission and only rely on eastern medicine to stay that way, but we will see what the future holds and I will keep fighting. 

My advice, if I may share, is to never give up. Always try. Set goals for yourself and if you mess up, who cares, you are HUMAN. Just try again tomorrow. No need to ever be harsh on ourselves. Surround yourself with only positive people (if you can, because that can be hard, I know). Remember life is about choices (well not the choice to have Crohn’s haha) but you know what I mean, a choice to fight! 

I send all my love to all of you who have struggled or are struggling and I want to let you know you are not alone! Please visit me any time on my web site 

Sarah 

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