Guest Post: Sami's Story

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

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

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

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

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

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

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

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

Sami

Guest Post: Alyssa's Story

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

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'Waiting'

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

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

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

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

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

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

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

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

Practice gratitude: spend some time thinking about your blessings.

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

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

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

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

Alyssa

You’re Making Me Crazy

Unfortunately, I can remember it like it was yesterday.

I was at the hospital - again. Missing school - again. In pain - again. And had just been told I was fine - again. And somewhere in between beginning to cry and trying to re-explain what was going on, the thought occurred to me, am I crazy?

They call it the ‘med student syndrome’, but let me tell you, this is particularly contagious in the world of Psychology as well. In fact, a good friend of mine is convinced she has every disorder the professor lectures about until I talk her down from her multiple psychopathologic diagnoses. But I was beginning to feel the same way - I knew I was sick, I knew something was terribly wrong, but the doctors didn’t and they were content with sending me home. So again, I asked myself, am I totally off-the-wall-in-need-of-serious-medication crazy?

If living with IBD were a job, that might be one thing. If I could spend all of my time and energy and resources on feeling well and resting and recovering, hey, it might just work. But then there’s that thing called life - with classes and homework and friends and responsibilities and jobs and you name it. Most of my friends living with IBD have their plates piled insanely high with activities, and their reason is that there isn’t a moment to lose. But there’s something to be said for deep breathing and going to bed early and sleeping in. Because when you’re running neck and neck with the road runner and your bowels are misbehaving, it can take of all your energy to get through a minute without thinking about your dysfunctional immune system. 

How does one ‘keep on keeping on’? Short answer: I have no sweet clue. But this is what I do know about the exhaustive mental fatigue that belabors any IBD patient: sometimes, you need to check out and put your head down and call it a day. Don’t throw in the towel, just turn out the lights and try again tomorrow. At the end of the day, you’re the only person living in your body and you do know what’s going on, medical degree or not. Call a friend, laugh at a joke, eat a really good piece of cake. Do whatever it is that makes you feel like yourself and gives you the strength and courage to get back up.

And remember, you’re not crazy. You’re gutsy.

Jennie

Guest Post: John's Story

We have the pleasure of introducing not only a gutsy guy, but a gutsy writer and advocate for those with IBD! Make sure to check out his book!

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I first noticed something was wrong when I was 18, in my first year at university, but it was to be another seven years of dramatically worsening health before I was diagnosed at the age of 25, so I suppose I was a little bit older than the average for the Gutsy Generation. It is now just over 29 years since diagnosis day, so I thought it might be worth looking back at the thoughts and fears that swirled through my head then compared to what actually happened. I should mention my diagnosis of, “Good news Mr. Bradley, we know what is wrong with you….Crohn’s disease”, was followed in the next breath with, “…and you need surgery right away”, so I had little to no time to process the implications of the illness itself as my mind was fixated on the prospect of going under the knife.

In some ways this was helpful as it focused my mind on what I think is the single most important question after “How long will I live? Oh, pretty much full lifespan then? Phew!” which is, “What will the impact be on my career?” This point of view may surprise you. After all, questions such as, “Will girls be turned off by my tendency to uncontrollably fart at the worst possible moment?” are the stuff of nightmares, but I will come onto relationships in a moment. At the time of my diagnosis, I had a job but didn’t have a girlfriend, so my focus was on the workplace.

So I walked out of his office about to take 4 months off work for what was, back in the pre-laparoscopic days, major surgery. In the two weeks between diagnosis and surgery, I realised several key things which have stood me in good stead:

My previous carefree life was over; I now faced a life of either feeling unwell, taking drugs that would do strange things to me, or having surgery, or, as turned out to be the case for the next ten years, all three simultaneously (I had 5 surgeries in the 10 years after diagnosis.)

With that in mind, I asked my GI what he thought might be the implications for me in the workplace? His reply was the worst piece of advice I thought I had ever heard in my life: “Umm, there shouldn’t be any really; I’d just carry on as normal.” No, no, NO! Normal was me never being off sick, never feeling less than 100%, pushing myself to the max to scramble further up the greasy pole. What I needed to do was to find a way to keep scrambling up the greasy pole while taking a cumulative two years off work in the next ten and feeling less than 100% and/or going crazy on steroids during the other eight. 

Ergo: I needed to think differently about my career than I had done to that point. I needed to be in jobs where I could still deliver expected results when I was feeling dreadful for months on end. I needed to be in a job where I could go to the bathroom fifteen times a day and it not cause issues. In short, I needed to accommodate the reality of having Crohn’s into my career planning, not ignore it.

Twenty-nine years later, I can report that I think I did the right thing in doing so. I ultimately had a very successful career in packaged goods marketing, rising to the dizzy heights of Senior Vice President. I didn’t get there as quickly as I might, or by the most logical route, but I got there. There were times when my health was poor I took or stayed longer in jobs that were well within my capabilities so I could still be a valued employee when I was running on 70% or less. Other times, when I was feeling well I took the risks. Conversely, I have met hundreds of IBD-ers at clinics, in hospital wards etc, and far too many of them seem to have taken the bad advice, ploughed on regardless of their new circumstances, and ended up not only losing their jobs but failing to get a new one. For me Crohn’s has been life-altering; for those poor souls it became life-ruining.

Moral: you are probably going to have Crohn’s or UC or a bag during your entire working life and, with a bit of forward thinking and flexibility, you can still achieve your dreams, they just might not be the same dreams you had before.

Relationships was my second worry after career. Will I find someone who can live with the illness? Can I still have children etc etc. Here I will be less prescriptive: I don’t think my Crohn’s made any difference. I got married two years after my diagnosis when I was experiencing a very ill phase, and our 19-year-old daughter is just starting her second year at U of T. Of course in those two years I obsessed about “How and when do I tell someone about my Crohn’s?”, “What if I keep dashing to the toilet while we’re at the movies?”, as those thoughts and more are inevitable. At that age we also obsess about having pimples on our noses, a bad haircut and wearing the wrong brand of jeans.

The bottom line is that you will only find your IBD a barrier to relationships if you make it so. If someone won’t date you because of your illness then thank your lucky stars you found out they were completely unsuitable as partners before marrying them. In short, the right person will still be the right person whether you have IBD or not. Your job is to not make yourself a recluse because you think your IBD will be off-putting to others.

29 years ago I was filled with foreboding and doubts about what life would hold for me. Looking back, the worries I turned into positive action were helpful, the worries that I just fretted about were unhelpful. We don’t get to choose the hand of cards life deals us, but we do get to decide how to play them. An IBD diagnosis changes the hand we have been dealt so, to me, it makes little sense to keep playing the way we were before. Changing how you play your hand to accommodate the IBD card isn’t giving in or giving up, as long as you are still playing to win.

John 

Author of “The Foul Bowel: 101 Ways to Survive and Thrive With Crohn’s Disease” and you can follow him on Twitter @Johnbradley1

Guest Post: Alex's Story #2

What's better than a guest post? A returning blogger! Enjoy - we sure did!
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'Marching Ostomate'

I hear my band director yell across the field, ‘REEEEEEESSSSSSSSEETTTT!!” - that means run across the field back to your original starting position. The first thing that goes through my mind after I hear that is I hope my ostomy bag isn’t full. If any of you have ever experienced running with your ostomy bag sloshing …. Well let’s just leave that to your imagination. I am starting on my third year in marching band and Grade 11 or my junior year in High School. The last two years of marching band, Crohn’s hasn’t allowed me to march a whole season. My freshmen year I didn’t have the energy to do all the activity that marching band takes from a person. I would spend two hours at practice and go home and sleep for four. Last year, I was in the hospital for resection surgery during all three weeks of band camp. When I was cleared to practice with my instrument, I broke both heels because of my osteoporosis during one of my first rehearsals. 

This year… I am hopeful! I have gotten through two weeks of band camp which has included two 12 hour days and two 8 hour days. My feet are sore, I am shaking off my sore muscles, ignoring my swollen ostomy, but I am proud and really pleased with myself knowing this year I am fully participating in band camp – for the first time. 

What’s different this year versus the last two? I am not in the hospital – that helps.  One of the things I hear a lot at band camp is “how are you feeling?” My band camp answer this year … “I am here, aren’t I?”  The primary reason is with careful attention to my disease and my diet and a lot of effort and perseverance I am doing what I love doing with my friends.  I hurry back home after a 12 hour day to get hooked up to TPN and lipids so I can get my 10 hour window of nutrition through my PICC line before returning the next morning.  I am careful to take a few extra breaks to rehydrate, rest, and get some extra calories where I can.  I bring a cooler with extra food and the band moms are looking after me making arrangements to meet my semi-vegetarian diet at meal time.  Sounds like a lot of effort and a lot of adjustments to try and live a normal life.  Some might ask, is this worth it?  Duh, of course it is! Friends with common interests, striving to accomplish something, being part of a group, heading towards a goal …   it doesn’t get any better than this. 

Crohn’s does not limit your dreams, you do. I have always known that even with Crohn’s and its complications I could still march. Last year after I broke both heels, I came back and marched in semi-finals at Grand Nationals with my band. It may not have been a perfect show for me, but I have proven to myself once again that no matter what I encounter I can overcome it.

Alex

Guest Post: Jeffrey's Story

We just love finding IBD bloggers and adding to our guest post series! Enjoy Jeffrey's story below and be sure to check out his site!

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I look in the mirror and don’t recognize the man I see there.  The grey hairs are starting to take over on top.  I always seem to have a 5:00 shadow.  And, are those wrinkles??  When did this all start?  I am pushing 40 on the outside, but inside I am still 15.  I can picture it like it was yesterday.

There I am, lying in my bed still in my pajamas.  I am sweating from my fever.  I am no nauseous that I can’t even think about eating…and come to think of it, when did I eat last.  Oh no, time to run to the bathroom.  Man, not diarrhea again.  What is wrong with me?  It’s been a week and I still feel like crap.  So, now it is off to a new doctor that my pediatrician recommended.  It is someone that is a gastroenterologist.  What are they??  

Ok, so this exam isn’t bad.  Don’t know what he found so let’s go into his office to hear what he has to say.  What is that you say…possible Ulcerative Colitis.  What is that??  How can I have an ulcer..I am only 15?  You want me to go to the hospital for a couple of days and get test done.  This doesn’t sound good, but I am so tired, sick and weak that I will do anything at this point.

So, this hospital isn’t so bad.  Been here for a couple of days.  Everyone seems nice.  Oh boy, time for another test.  I have to do an upper GI.  What is that??  Ok, drink some liquid and get x-rayed…I can do that.  What flavor do I want?  Can I have vanilla or chocolate…wait…all you have is strawberry??  I hate strawberry.  Oh man, this is horrible tasting.  There is no way I can get this down.  Wait!!!!  Don’t put that tube up my nose to force the liquid down…I will drink it.  I promise.  Just let me wipe the tears away first.  I want this to be over.

What a day…oh, hi nurse.  Enema?  What?  A colonoscopy.  This can’t be good.  But you’re a cute nurse, so I’ll let you give me one.

I will get Demerol and Valium.  Ok.  They will relax me and take away the pain while the scope is in…ok.  Wait…I feel that.  Ow, this hurt.  Oh my god this really hurts.  I can’t watch the monitor because there are too many tears in my eyes.  When do the meds kick in?  Should I be in this much pain?

Been here a week.  When do I get a diagnosis already?  Here comes the dr.  Ok.  IBD.  Ulcerative Colitis.  What is all this?  Thanks for the pamphlet…but what is this disease I have??

That was my short version of how I found out I had Crohn’s Disease.  Yes, I was originally told UC but after finding a good doctor, I was told I had CD.  This was all back in the 80’s, before computers and the internet.  I had no clue what I had.  I read the literature from The Crohn’s and Colitis Foundation of America but it never really hit home of what I had.  I couldn’t talk to others with the disease and I went through my teens and 20’s without any real knowledge of my disease.  I was always told I had a mild case of CD, but going through the journey alone, I had nothing to compare my symptoms to.

Fast forward to January of 2012.  I was in the middle of really nasty flare and going to the bathroom 30 times a day.  I was on Humira 40 mg every week.  I was so depressed that I had convinced myself I was going to need surgery.  I thought I was going to need a “bag” and it hit me….I don’t even know what they look like.  The internet had been around for a good 15 years now and I never looked up or researched anything about my disease…so here I go.  

And that is how I turned my life around and became an online activist for IBD.  When I started researching my disease I found a number of inspiring people that showed me that no matter what my disease brings me…it is not who I am.  I have a life to live and I shouldn’t let some symptoms run my life.  I felt like I was entering a new phase with my disease.  I grew up alone with my Crohn’s and there is technology now that can make it so no one would have to ever go at this disease alone.  So that is my mission now.

When I write or talk, it is experience and advice that I spew.  I want to be able to help all the youth out there that have this disease.  I know what it is like to be a kid and have all the problems that come with IBD.  Inside, I am still that little kid.  Because I lost my childhood at 15, I chose to hold onto it mentally.  I have the knowledge of an adult, but the drive of a kid.  I like to joke around.  I like to explore.  I like to have a fun and be carefree.  There is time later to act like an adult.

I started  www.aguywithcrohns.com with one thought in mind…to help anyone that needed it.  I try to give out advice on what I have learned throughout my life so others can learn from it.  I want people to know that they aren’t alone and if no one else listens…I do.  I am here to listen and help.  Doctors don’t seem to truly care much.  Friends seem to get annoyed to fast.  Parents just want to do what they feel like they should be doing to help, whether it works or not.  But online friends seem to listen no matter the situation and are always there.  That is who I am.  I am only a keystroke away.  I might not always have an answer but together we can find it.

As I look back into the mirror, I can still see that 15 year old.  The lines are growing.  The hair is changing.  But I can see him in the eyes.  I see the twinkle.  I have made it 24 years with disease.  No matter what happens…I can live life.  The disease hasn’t beaten me…and it never will.  And that is the best advice I can give anyone….Never let it beat you…you are too strong.

Jeffrey

Guest Post: Michele's Story

It is completely refreshing to find someone living with IBD who epitomizes optimism and energy. Luckily, we have a blog from one such person: Michele is the President of the 3C Foundation of Canada, a member of Gut Inspired, and someone who has a strong voice that is instrumental in raising awareness about IBD.


All we have to say is, go Michele!
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I love presents!  Maybe that’s why one of my favourite expressions is ‘life is a gift, unwrap the ribbons.’  I was reflecting on this expression recently as I sat on my dock taking in the beautiful sunset… in my ever optimistic quest to ‘unwrap the ribbons,’ I took some time to think about the good things in my life that have come about as a result of my journey with Crohn’s disease. 

As I metaphorically untied the ribbons on my ‘gift’ of Crohn’s related life experiences I was filled with a sense of gratitude.  I can honestly say that although it has been a difficult path, my journey with Crohn’s has also has given me a great deal to be thankful for and I have learned some valuable life lessons.

One of the most important lessons I have learned is to embrace the fact that Crohn’s disease does not define whom I am, and to acknowledge that it plays an important role in shaping me as a person.  My life path has changed considerably since being diagnosed with Crohn’s disease and yet I am grateful for the opportunities I have experienced as a result.  I am extremely thankful for some of the most remarkable, extraordinary, talented, successful and beautiful people I know who are living with IBD as they have touched mylife in a significant way and left footprints on my heart forever.

I have learned to choose not to be offended by others, or be ashamed and embarrassed by this disease - I have come to realize that these emotions (which could easily consume me) are experienced only when I allow them to.  Keeping perspective on the fact that others do not truly understand and are not educated about Crohn’s disease helps me to avoid falling into a mindset of negative emotions.  Although it took me many years, I am thankful that I have learned to walk with confidence and a smile on my face to send the message to others that I am self-assured and will not be defined by this disease.  I am thankful for the awareness that although this disease may at times devastate me physically and emotionally, it can never destroy my spirit!

I have also learned the importance of educating myself about this disease, which has empowered me to make informed decisions and take positive steps as an active participant in my own health care, with a sense of control over my journey.  Sharing my knowledge with others has helped to promote awareness and I am filled with hope that educating others will change attitudes around the stigma associated with the symptoms of IBD.  Being informed has given me the confidence to overcome my once quiet and private nature in order to offer support to others.  I am incredibly thankful for volunteer opportunities that have come about as a result of living with Crohn’s disease.  It is exceptionally rewarding to be a part of making a positive difference for others and I am always amazed by the fact that even though I set out with the intent of helping others, I am the one who walks away feeling inspired and blessed by those I’ve had the privilege of working with. 

While savouring the moment the sun finally dropped behind the horizon, I felt gratified that I had taken the time to ‘unwrap the ribbons’ and reflect upon the good things that I have experienced as a result of living with IBD.  Each life, even one touched by Crohn’s disease, truly is a gift… unwrap the ribbons!

Michele