Thursday, December 20, 2012

IBD and Me

As my annual appointment with my GI came and passed I am strangely aware that my ‘relationship’ with my disease has evolved through the years; just as my relationships have. Enjoy the little moment’s memories that you will treasure for years to come. Each year there is change and every holiday season will be different.

This holiday week, is the true test of time as I am spending the entire Christmas holiday with my husband’s family, with different traditions, different family gathered during the holidays and different conversations. Just like my disease - I will have to adapt, and find the ‘happy medium.’ This holiday season remember to take it easy and enjoy the time you are spending with family or friends.

For the last few years I remember waking up on Christmas morning with the smell of croissants in the air and wanting to eat half a dozen of them but being told that I could only have one because we were having the big Christmas dinner that day and I couldn’t spoil my appetite. I recall the how when my sister and I were younger we had to wait until everyone in the house (there were at least 10 people during holidays) to get up, eat, shower and get dressed before we could even think of opening any gifts. To a small girl, this seemed to be an eternity.

Apparently, with my new family, we now open gifts before eat, getting dressed or cleaning up. So we have a bunch of pictures of us sleepy looking, in our pajamas. – Which is different to say the least.

In the New Year I have the privilege of having yet another colonoscopy, MRI, more blood work and more infusions. Can I say that handling my disease has changed; it used to be my mom deciding what to do along with the doctors. However, now I have to decide how do I want my quality of life to be?

This holiday season remember to take it easy, enjoy the here and now, take one family disaster at a time.


Thursday, December 13, 2012

Never Say Never

Under normal circumstances, I would avoid quoting my fellow countryman Bieber in the title, but this my friends is anything but a normal circumstance. You see, I have set a record for myself. I went the entire semester without being in the hospital.

My first thought, ‘Is this what college is supposed to be like?’ Answer: apparently. Who knew. I managed to forgo my frequent flyer miles at the local hospital (after all, the rewards are less than desirable, I’ve already ‘won’ enough scars to last me) and get to all of my classes. I didn’t miss a class for feeling sick - instead I missed a couple of classes for attending an IBD conference and running a half-marathon. Beats my ‘sorry-I-decided-to-live-in-the-hospital-now’ line that has accompanied every semester.

My parent’s reaction to this: IT’S ABOUT TIME (yes, the feeling can only be expressed in caps). This semester has been full of college firsts - having a kitchen, living with roommates, starting my senior thesis. I think of my roomies, we’ll call them Maya, Mimi, and Ana, and can’t remember a time when I didn’t come home and see their faces, grinning at me, or bake them cupcakes or have silly dance parties to Disney songs. I felt this kind of way after my ostomy surgery a couple of years ago, like the reset button had been pressed and all of a sudden I’m turned out bright and shiny (quoting Grey’s, but of course).

If things were always sunny, I wouldn’t know any different. But when things are dark sometimes, there’s something nothing short of glorious to open your arms wide and squint in the sun. Not metaphorically, having had a rough go for my freshman through junior years, it means all the more to have had a wonderful fall semester of my senior year.

But this is not all to say that challenges are hiding behind my closet door and under my (impossibly high) bed (note: the bed is very high, I have a stool to propel me atop it). My small gut is dotted with grumpy ulcers, ready and waiting it seems to rain on my beautiful parade. But now it’s different - I have the say in my care, an absolutely wonderful GI, roommates and the best of friends to pick up prescriptions and see what I’ve eaten during the day (“Jennie-fer, what can you had to eat today?” note: ‘Jennie-fer’ is my name for when I’m ‘in trouble’), and just be there and not talk about IBD or bowels or bags and just be 21. Of course sometimes I’m scared, sometimes there are tears, and sometimes I am angry that my body can’t give me a break.

But more often than that, I am so very happy to be where I am. The other day I was standing in my living room on the phone with my Mom, and had this thought of, ‘Wait, how did I get here?’ The sheer fact that I’m a college senior, without any medical leaves, spanning two surgeries, and extensive hospital stays, made me wonder how it all happened. And here’s how - with a lot of help. My parents, my friends, my professors, the disability office on campus, and my doctors. My education has and always will be, if I am so lucky, a communal effort. There is no way to thank everyone, all I can do is try and keep running as fast as I can toward my dreams.

Life is big and giant and arguably impossible and overwhelming at times. Maybe you feel like you can’t do something, but the thing is there’s no reason you should have to do anything by yourself. There are so many others who love you and who are rooting for you on the sidelines (if you can’t hear them, maybe it’s just that your thoughts are turned up too loud). You can do it.

Remember, in the wise words of Justin Bieber - never say never.


Friday, November 30, 2012

One More Time, Just For Kicks

What would be the fun if things were easy? I prefer the harder, circuitous route that takes you a thousand miles out of the way only to end up a step behind - clearly the more enjoyable path.

I’ve since lost track of which stories I’ve employed as metaphors, but alas I shall tell another in the hopes of demonstrating my point. When I was about 9 I was sledding with a friend on this big, enormous, wonderful hill (that seemed like a mountain at the time) near my house. The short of the long story was that there’d been an ice storm that day before and the hill was slick and frozen. Regardless we still thought it was a good idea to sled, and we climbed in this big purple Rubbermaid sled (goodness knows why Rubbermaid made such a sled, but I’ll have you know it was quite hefty and heavy), her behind me, and pushed off. Needless to say it wasn’t the smartest idea to be sledding in such conditions, and soon enough we flew off a bump, did a 360 in the air, then I landed on the ice chest first, then her on top of me, then the big ol’ purple sled and all we could hear as we moaned and slowly slid down the hill was my Mom screaming at the top. When I decided to have ostomy surgery a couple of years ago, I did so knowing that I would still have Crohn’s, still have a chronic illness, still have medical decisions to be make, but it was a big step in treating and addressing my disease. And it was. I don’t for the smallest fraction of a second regret my choice. IBD treatment has been described to me as ‘step up’ treatment (ASAs to steroids to immunosuppressants to biologics to surgery) and by all accounts a complete protocolectomy at 19 was the most aggressive treatment possible. But now as I sit here with a flare-up, it feels like I did when I landed on my chest on that icy hill - the you-have-got-to-be-kidding-me-this-is-ridiculous kind of headspace. Even though I know it’s not true logically or medically, it feels like I’m back in the same place as I was before surgery making these difficult decisions about difficult medications. 

It’s kind of funny - I’ve never had a flare-up without my colon before. To quote Aladdin, it’s a whole new world. Don’t get me wrong, it still sucks and hurts and seems particularly unnecessary and unpleasant. But I’m not running to the bathroom, and all of my colonic symptoms are only memories. I know for my parents they hoped - with good reason - that my surgery would be more or less the final event in my IBD journey, at least for longer than two years. I can sense their disappointment and frustration on phone calls, just as I feel disappointed and frustrated at times, but I know that I have their support about whatever treatment I choose (to this point my Dad informed me that my Mom and him were “100000% behind me”).

It’s kind of like when you’re somewhere and you smell something that seems familiar but it takes you some time to place it - having a flare and being ‘sick’ again is a transition that I’m getting used to. After standing on my soapbox about taking your time with medical decisions and so on an so on, it’s about time I take my own advice.

I just have to hold on, and close my eyes for the scary parts if I need to. Here we go.


Saturday, November 17, 2012

Guest Post: Greg's Story

We're so glad that Greg reached out to share his story of strength and positivity. Enjoy - you'll smile just like we did!

First off, I would like to applaud The Gutsy Generation for all their hard work in raising awareness for IBD and I’d like to congratulate Robbie and the Team for having Robbie’s Rainbow officially registered as a charity, this is such a huge milestone. 

I would like to share my story with you, those that are newly diagnosed, those that are living and caring for someone who is newly diagnosed and those helping to find a cure. 
I was diagnosed with Crohn’s  Disease at the age of 9, but if you ask my parents, they’ll tell you I’ve been dealing with this disease since the day I was born. I was born in March of 1983 and if you do the math, that means I’m 29 years old, so I’ve been dealing with this disease for almost 3 decades. I’ve learned a LOT of stuff about Crohn’s in this amount of time… actually I learned a lot about Crohn’s before my 15th birthday. 

I cried for the first 10 months of my life. Well not really cried, according to my mom and dad, I screamed for the first 10 months. Let it be known, that 10 months of screaming resulted in me being an only child and I cannot blame my mom and dad one bit for that. My parents were told I was colic, they knew it was much more than that. From the age of 10 months, up until I was 8 years old, I lived a pretty healthy, active, normal life, but then things started to go downhill. I started making more trips to the washroom, frequent diarrhea, severe cramping and major weight loss.  The trips to the family doctor started to become a weekly ritual and soon I was referred to a local specialist to try and figure out what was going on.  

I remember his name vividly, Doctor Berg, a gastroenterologist here in Sudbury. For those that don’t know, Sudbury is a small community of 165 000 people located approximately 400 kilometers north of Toronto, Ontario. We’re predominantly an underground mining community, keep that in mind, as it will come into play later on in my journey. So back to my story. Doctor Berg sent me for an array of tests, scans, blood work, etc. Eventually he sent me on my way to Sick Kids Hospital to see the experts and figure out what the heck was causing such an illness. This is when I was officially diagnosed with Crohn’s Disease at the age of 9. 

I’ve been asked many times what went through my head when I was told I have Crohn’s.  The first things were, “What the heck is Crohn’s Disease? How do I spell Crohn’s? , And why must they call it a Disease? “. The second round of questions were,“ How is this going to affect me? Will I live a normal life? Where’s the cure? And why am I not healthy like the other kids? “ . Another question I asked, and continue to ask but kind of know the answer to, is “Why does my dad continue to call it Chrome’s Disease?” The answer to that one … it’s his French background. For him, three is tree, tongs is thongs and Crohn’s is Chrome’s. I gave up correcting him many years ago and now I just smile and nod when he talks to family and friends about my “Chrome’s Disease”. 

So at 9 years old, I was put on a daily dose of medications. I had a weekly pill organizer … breakfast, lunch, dinner, bedtime … Sunday through Saturday ... just what every kid wants. The steroids did their thing. I went from being the skinny kid in class to being the fat kid. I felt great but that’s what steroids are supposed to do, make you feel great and mask the disease.  I can’t even begin to name all the medications I was put on … prednisone, 5 ASA, metronidazole, methotrexate, ciprofloxacin , the list goes on and on. I knew this list by the age of 13. 

From 13 to 16, I had my ups and downs. Going for routine blood work, ultrasounds and the “not-so-new-anymore” Colonoscopy.  I was eventually put on another round of steroids shortly after my 17th birthday and it just so turns out, it was around this time I received a letter in the mail telling me I was selected by the Ontario Ministry of Natural Resources to become of their Ontario Ranger Program…. I was going to spend the summer of 2000 with 25 other guys, over 1000 kilometers from home, in the cramped quarters of a bush camp in the small north western Ontario village of Ignace. This was going to be one of my first real jobs (other than pumping gas ) and I was going to spend weeks at a time clearing canoe portages, campsites and performing work in some of Ontario’s Provincial Parks. This also meant I wasn’t going to be near any real washrooms for weeks at a time but that was Okay, the steroids were doing their things and helping to mask the Crohn’s symptoms and I was gaining weight. I made it through that summer feeling great and came home after 12 weeks 40 pounds heavier ,just in time for the new school year and heading into grade 12. 

Grade 11 was going to be awesome for the first semester. My guidance councilor hooked me up with a semester-long co-op placement at Science North, a nice science center here in Sudbury, and I was going to be on the Biodiversity/Biosphere level of the building which was right up my alley since I planned on going to college to become an MNR Conservation Officer once I graduated highschool.  A week into school I started to feel some cramping but shrugged it off as the side effects of me coming off the prednisone… no big deal really, I’ve had cramps before. A week later my life was about to change.  

It was a nice warm September day and my dad had just picked me up from my co-op placement and we were heading home at 4pm, I had felt under the weather all day. I remember the next chain of events like it was yesterday. Here we were driving along, 10 kilometers from home and the traffic light turns red. We’re stopped at the light and I feel as though someone is sticking a knife into my lower abdomen. The pain is so strong that I’m out of breath… so I take a deep breath and all I feel is a “pop” , kind of like a bubble from a piece of chewing gum had just been burst.  

I’m stubborn, strong and very quiet. I’ve lived with Crohn’s for 17 years, so I don’t complain about pain and I kept quiet this time also. Dinner was ready when my dad and I got home, I sat at the table to eat but couldn’t stomach more than a bite and had to go lay down on the couch. The vomiting started but I never said a word and just went to lay down in bed for the night. I didn’t get a minute of sleep that night and when morning rolled around my parents knew something was up. I told them I needed to go see a doctor. I told them I could not get out of bed. My dad carried me out to our vehicle and brought me to my specialist who had taken me on months prior when my previous gastroenterologist had moved his practice. My dad carried me into the office where we were rudely told that if I didn’t have an appointment, I wasn’t going to be seen.  We then went to the emergency department of the local hospital. “What’s your pain on a scale of 1 to 10?” I was asked.  I replied “12”. We were then told it was a 4 hour wait until I could see a doctor. My mom called our family doctor and we were told he was on-call at the local clinic. My dad once again picked me up and carried me to the vehicle and we made the trip across town.  The clinic was packed with people but as soon as we walked in, my family doctor spotted me as he walked by. He told his nurse to lay me on an examination bed. He lifted my shirt, placed his hands on my abdomen and no sooner than I could say it hurt, he was calling his nurse to have an ambulance brought in. 
A lot is a blur from this moment on. I remember getting to the hospital, doing a few tests and the next thing I know I’m being asked to sign forms … I was being prepped for surgery.  An I.V line was being put into my arm, the bright lights of an operating room were blinding me and a mask was being put on my face. 

I was in surgery for 5 hours but it felt like 20 minutes. I had never had surgery up until this point, so what a weird feeling waking up, dazed and not knowing where you are. I was heavily sedated for 3 days, so I don’t remember anything, except asking what time it was. After day three, I finally was conscious enough to know what was going on. My mom and dad were in the room with me and so were a few nurses and the surgeon.  The surgeon’s first words, were “ You made it” . I pulled down the sheet to see what kind of scar I had. It was a “zipper” from above my belly button down into my lower abdomen, a good 14 inches in length … oh … and an ostomy bag. Having researched Crohn’s  and having spoke to various people over the years, I knew surgery was a typical thing . I also knew that one day having an Ostomy was a possibility. That day had finally arrived.  
I spent a month in the hospital recovering, missing my co-op and learning about living with an ostomy. I remember the day the ostomy nurse came into the room and explained how to care, clean and change an ostomy appliance. Maybe it was my young age or maybe it was my stubbornness, but I had the changing, caring and cleaning figured out in no time at all. After all, if I didn’t learn it now, I wasn’t going home and I really wanted to get home… the hospital food had gotten the best of me and I was eager to sleep in my own bed. 

I made it home before Thanksgiving that year, returned to my co-op, finished my last semester, met a girl and graduated from high school. I earned an award for “Most determinate student” that year because of the challenges I faced and for being able to finish with some excellent grades despite missing so much time. 

As I mentioned I also met a girl.  Now this was probably one of the biggest challenges I’ve faced. How do I tell this girl that I have Crohn’s Disease? How do I explain that it’s a bowel disease? And how do I tell her I have an Ostomy? Simple! I came right out and told her and explained it. If she was not going to accept it, than this relationship was not going to work. Much to my surprise she accepted it. She didn’t care that I had scars, she didn’t care that I had Crohn’s disease and she didn’t care that I had an ostomy. She liked me for my personality, for who I was and the Crohn’s that’s just part of the package. We dated for over a year before we went our separate ways. This relationship taught me several different things. It taught me how to be confident in myself. It taught me that there are people out in the world that care about more than just looks, and it taught me that Crohn’s Disease is really no different than someone being diagnosed with any other disease. 

Between the age of 17 and up until 3 years ago, I spent quite a bit of time in and out of hospitals and having surgeries. But during that time I also met my wife. Oddly enough, we met through another girl I dated for a short period of time, who also happens to be my best friend, who also did not judge me based on appearances. Funny, how in a society that seems to portray model good looks and 6-pack abs as being the thing that ALL women want, there are so many girls in the world that don’t actually care for that kind of thing and want someone who is just “normal”. The same can be said for how many guys in the world that don’t care to have the magazine cover super-model.  

When I first met my wife, I explained to her that I had Crohn’s, that I had an ostomy, and that more than likely I’d spend some time in and out of hospitals. We’ve been together for 8 years now and have been married for 2. We also have a beautiful 7 month old, healthy little girl. My wife has stuck by my side through thick and thin. She’s been there through doctor’s appointments, through surgeries, through days of laying in bed feeling like crap, and through days when I’ve asked “Why did I end up with this disease?.  She usually replies that I ended up with it because someone else probably wouldn’t have the strength to deal with it. She has also been there with me through some major accomplishments. I never did go on to college to become a Conservation Officer. I went to college for Civil Engineering, which I figured out in my third semester just wasn’t for me. I’m from a mining town, my dad was a miner and my grandfather was a miner, so naturally I got into mining.  Unlike my father and grandfather, I didn’t want to be handling a 120 pound rock drill for 12 hours per day, so I enrolled myself in one of the best mining schools in the world located here in Ontario and studied Mining Engineering. I graduated with Honors a couple of years ago and have been employed with one of the largest mining companies in the world. Today I work 5000 feet underground with 15 other men on my crew, most of which are my dad’s age, and every one of them treat me like their own son.  

I’ve learned a lot from being diagnosed at such a young age. I grew up fast, not because I wanted to, but because I had to. While most kids my age knew every Ninja Turtle by name, I knew my list of medications by name and dosage. I learned the importance of listening to my body. I have a very high pain tolerance like most people who have a chronic illness, so when I have pain, I know something is up and I better go get checked out.  I’ve learned to express myself to others, choose to tell who I want about my disease. When I was young, I always thought that people would look at me differently, but 9 times out of 10, when I mention that I have Crohn’s Disease, people will tell me about how they know someone that is living with it or they’ve heard about it. The odd time, they’ll say they never heard of it, so it gives me the opportunity to educate them about this disease.  I have also met some really awesome people throughout the years, some of which I stay in contact with to this day. I’ve shared hospital rooms with other kids when I was younger and their moms have treated me like their own child when my parents couldn’t always be around. I’ve shared hospital rooms with some elderly who’ve told me stories of days gone by and of a time when Crohn’s was very uncommon. I had the opportunity once to share a room with a pastor who told me to always keep faith because God will never throw anything my way that I cannot handle. I’ve met some really great nurses ,who were new to the practice 20 years ago and have been great friends ever since. They learned about Crohn’s at the same pace that I did … and sometimes I even taught them a thing or two about the disease.  Who else can say that they’ve invited and had their homecare nurse attend their wedding? I can!!! 

I felt compelled to tell my story because this disease is affecting so many young lives and its numbers are growing annually. If my story can be helpful to one person who is going through what I’ve been through, then I’ll have done my part in battling Crohn’s Disease. 


Friday, November 16, 2012

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.


Sunday, November 11, 2012

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!

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’ 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 


Wednesday, November 7, 2012

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.

Tuesday, November 6, 2012

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.


Friday, October 26, 2012

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.


Friday, October 19, 2012

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!

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,

Tuesday, October 2, 2012


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.


Sunday, September 16, 2012

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.


Thursday, September 13, 2012

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.

'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; 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.


Sunday, September 2, 2012

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.


Saturday, August 25, 2012

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. 

'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.


Friday, August 24, 2012

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!


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.