Saturday, February 26, 2011

Squeezing In: Claustrophic Testing

I went for an MRI this week. They're incredibly claustrophic. My head was velcro-ed down and I wore this netted mask thing and headphones to block out the noise. The noise was very loud. It sounded like gun-shots or something. And then this really fast paced noise - at first I thought it was my heart rate on a loud speaker: my heart beating as if it were having an anxiety attack. It lasted about 20 minutes and the whole time I kept my eyes closed trying to relax, thinking: I pray they advance this technology fast and find a way not to make it so claustrophobic.

But besides that, Im grateful there are so many diagnostic tools to tell us how our health is doing. As you know from my last blog entry, I am being tested for Multiple sclerosis. Its a scary time - that 'transition' of not knowing - but, as my friend said, its better to know early and be able to start treatment as early as you can.... but holding it together is a whole other story.

I've noticed that you can do everything in your power to tackle life and flare ups and health changes on your own. I know I've been an expert at that most of my life. I never felt comfortable sharing everything about a flareup (the emotional and physical attacks my body felt) with someone until I joined the CCFC and started volunteering and meeting other people that were my age with IBD. Interesting enough, when I went for my MRI, the lady who scanned me told me she had ulcerative colitis. I instantly felt connected to her - I felt in a way, we could understand a deep part of ourselves in each other. I feel this often with others with IBD. I feel as though their a good caring genuine friend deep down because we both know IBD isn't easy, and that there is so much each one of us goes through - even if Crohn's isn't the exact same as ulcerative colitis... the emotional part of it is pretty close.

The anxiety of doing this MRI made me feel too overwhelmed to attend our CCFC Chapter meeting - but everyone was so understanding. They all sent warmth and care. So did my great friends on the Youth Advisory Council. The support from other IBDers is amazing sometimes, and it makes me wish I connected with the CCFC sooner than when I was in university. I wish I connected with them when I first diagnosed in elementary school. Because even though I felt like I wanted to be alone and by myself and figure this thing out on my own, at home, in bed, day in and day out, there's a new found energy and vitality that you get when someone can look you in the eyes and know exactly what youre going through and truly care and understand - and want to help. Every person with IBD i've ever met has become a real kindred friend of mine. Sometime's without their support I don't know how i'd make it through.... like all of you know, there have been some really scary and painful times.

Thank you Gutsy Generation,
Thanks Youth Adv. Council
Thanks CCFC,


Thursday, February 24, 2011

450 Minutes

It took less than 9 months to make me and 450 minutes to take me apart.

I had moved through life, organs and all, for just over 19 years, and yet in about 7.5 hours, I was fundamentally different. When I first understood how long the surgery would take, it seemed like an absurdly long time to snip the five foot colon out, granted surgeons do much more delicate work than simply ‘snipping.’ But, as my Dad sarcastically pointed out, I had the easiest part to play - my family had to wait for hours on end, the surgeons had to work, I would just get to blink and it would be all over.

Though it may seem untrue/unrealistic/inconceivable, I do not think about having an ostomy many times throughout the day, and I certainly do not replay my summer in my mind. I empty the bag daily, and typically that’s it, I do not have long drawn out recollections about using a commode or attempting to walk post-surgery, it seems and feels normal to have an ostomy.

A couple of days ago, I received an overly detailed bill from the hospital where I had my surgery. It was in a thick envelope literally squished against itself in my pint-sized dorm mailbox, and my forehead crinkled in curiosity when I drew it from the box - after all, that was six months ago, why was I getting this in the mail now? My heart seemed to evaporate through my skin when I opened the envelope, as if I was right back on the operating table, it was a terribly surreal and painful moment to endure. Every medication given, every blood draw, every everything was meticulously recorded. It ran for pages, and not the modern-type stabled pages, but the pages that are attached and so it honestly rambled on for nine pages, the length of the pages well over my height. It dropped to the floor, pages crumpled on pages, and I stared listlessly at it, terrified to read the bills and really understand what had happened to me.

I read every line. I saw the date, August 10th, and looked for the OR descriptions, and there it was - a confession of my 450 minutes in the OR. Followed by 4 hours in the recovery room, and then another week in the hospital. 450 minutes. 450 minutes is a long time. It’s a long time, and yet, I cannot remember it. They took 450 minutes from me, and in return, they gave me an ostomy.

Although it’s melodramatic to profess my profound sadness at this documentation of lost time, I think I was more surprised by my reaction to the bill. In a life of continually having to move forward and move on, I often have little time to sit and reflect deeply about what my body has endured. After my surgery, school began, and I more or less hit the ground running with no time to really look back. Being confronted with the information was jarring and unexpected, but perhaps also greatly needed.

There are 450 minutes of my life that I will never remember, but that absolutely changed my life. It took less than 9 months to make me. It took 11 years to get sick. It took 3 months to be diagnosed. It took 7 years of being constantly sick. It took 6 months to fully unravel me. It took 7 weeks to wait for surgery.

But it only took 450 minutes to get my back my life.


Tuesday, February 22, 2011

Sister-(and Brother)-hood of the Damaged Goods

First, let me admit to the fact that I’m breaking the rules. I’m supposed to write blogs on Fridays, but.... this needed to be written today.

It seems like everyone is sick. Some are the runny-nose-bring-Kleenex-to-class sick, and some are the really-serious-chronic-illness-sucks sick. It’s not as easy as some of Mom’s chicken noodle soup and a good reality TV show marathon, and it’s not as easy as a “Get better” wish. What do you say when you know how sick someone is, when you intimately know the pain and suffering and loneliness and exhaustion? We know as well as anyone that saying “feel better soon” does nothing to minimize anything, so should we say it anyway?

I vote for saying something different. I vote for telling them that we’re thinking of them, cheering for them, that we’re here night or day to field their venting calls and texts and emotional breakdowns. We’re here for supplying junk food and good movies, and a hand to squeeze at the doctor’s office. It may not heal them any faster than “Get better”, but it’s something tangible and genuine.

In so many ways, we’re at the mercy of other people. Particularly as youth, we haven’t been giving a chance yet to really live and do something - we’re not doctors (yet), we’re not professionals (yet), we haven’t been given an honest opportunity to affect change. I often feel as if my faith in the medical world is misplaced: I have to professionally rely on doctors for my physiological health and future. I want my chance at my life, I want my chance to make an impact, to do something more than just go to class in the morning and vent over this blog. It can make a person with a chronic illness feel helplessness and frustrated, we’re the little game pieces in a very big game.

Maybe the pain of others hurts so much because I know exactly what it feels like. But nonetheless, it’s horrifying to feel helpless on the sidelines watching such good people endure such hardships. It’s one thing to go through it yourself, but for me it always seems more agonizing witnessing it and profoundly understanding the hell of living it.

But that is why I’m breaking the rules and writing this now. Bottom line - a cure is powered by research dollars, which are powered by fundraisers, which are powered by volunteers like us. Even though the journey really is of a gazillion miles, we have to make the steps each day, no matter how cheesy and trivial that sounds. And one day, when there is a cure, I can profess the truth to the ones I care so much for that suffer - I did all of this for them.


Saturday, February 19, 2011

I'm not alone...anymore!

Have you ever felt like you were alone? Like you’re the only person who goes through what you go through on a daily basis? I feel like that a lot of the time, when I’m in pain, or something IBD related is acting up. Whenever my health isn’t being co-operative I find it hard to think that SO many other people go through this, and worse every day, just like me.

People always like to say that someone is going through worse, but I’ve always said that even though someone is going through worse then what I’ve gone through, my worst is as bad as I know it. So to me, my worst, is THE worst. I know it might sound conceited, but it’s true. You only know your worst, and someone else’s worst, even though you know that there is worse, is never going to mean as much as your worst.

I’ve always felt alone, even after I became involved with the Crohn’s and Colitis Foundation of Canada. I’ve never felt like anyone knew what I was going through, I always knew that people were going through things along the same lines of what I was going through, but it still always felt like I was alone.

I’ve had so many people say that they were by my side no matter what, that if I ever had to go through things that I’ve gone through before that they would be by my side, but I never quite believed them. Not until now!

I know my family is always going to be by my side, but I guess I always just saw that as something they had to do. I saw it as something family would do regardless. I mean, they are my family after all, and they always will be.

I never quite felt like someone who didn’t have an “obligation” to me would ever be able to prove to me that they would be there. I never thought that someone outside of my family would be able to make me feel like I don’t have Crohn’s Disease. The guy I’m dating right now does though. He makes me feel “normal”, if there is even such a thing. He doesn’t act like I have Crohn’s Disease, he isn’t constantly asking me what I can eat, he isn’t always asking me how I’m feeling. I’m normal. I’m Colleen, just Colleen. I’m not Colleen, his girlfriend with Crohn’s Disease.

I don’t even know if this makes sense to anyone, but to me I feel different. I guess I feel like I felt before I was diagnosed, but to be honest I can’t say that for sure because I don’t really remember a time when I didn’t have Crohn’s Disease. Perhaps because I don’t want to remember a time when I didn’t because then it might make days when I just can’t forget that I have Crohn’s Disease even harder.

It’s the little things that make my boyfriend amazing when it comes to my Crohn’s. Like when I’m in pain and I’m rocking, the fact that he will hold me and rock with me. Then there are my Remicade infusions. I hate them; they’re long and boring. When I first went to an infusion and we were dating, he wanted to be there. He was texting me the entire time I was in the hospital saying that he should be there, that I shouldn’t be there alone. He didn’t see it as something he had to do because I wanted him there; he actually really wanted to be there. He was working, and that was why he wasn’t there, but he still couldn’t accept the fact that he wasn’t there.

I guess it just takes that one person, and it doesn’t even have to be a significant other, to make you feel like you again. I feel like I can take on the world, because from day one with him, it didn’t matter that I had Crohn’s, it mattered who I was, and that wasn’t someone with Crohn’s Disease!

“I have Crohn’s Disease, Crohn’s Disease does not have me”
~Colleen Lynn

Friday, February 18, 2011

Girl, Interrupted

The other night at dinner, my friend said that she had a friend who wanted to meet me.

When I asked who, she said the friend had Crohn’s. I got so excited, and my friends started to laugh. Then she said who it was - we’ll call him Larry - which made my friends laugh even more. You see, Larry has been the long-standing comedic relief, he is infamous for being a really nice guy who’s just a little small for his age.

My friend asked if his ‘pre-pubescent’ stage (as she called it) could be attributed to his Crohn’s. I explained that it depended on when he was diagnosed, how severe things were, and on and on, but bottom line, yes. I drew attention to myself, noting that I still manage to look like a 14 year old although I’m 19.

You know when you’re watching your very favorite TV show (cough, cough Grey’s Anatomy), when a BREAKING NEWS flashes on the screen and detours the show? That’s what I feel like sometimes, I was going about my merry little 12 year old life, and then all of a sudden I was sick and had Crohn’s. I had only been sick a few months before my diagnosis and it didn’t seem as though it would possibly persist year after year. My small life was interrupted, and each time the ‘interruption’ ceased, I was onto the next show, not knowing how the last one ended or the current one started. It’s a constant stop and start, one that seems to leave my life in the most awkward of zig-zags across experiences, emotions, and medicines.

It’s easy to wonder what things would be like if I didn’t have Crohn’s. It’s easy to wonder what things would be like if I didn’t have an ostomy. But eventually those things seem so normal - and expected - that it’s difficult for me to really understand that the average kid doesn’t deal with IBD. Before IBD found me, I was going to be a professional ballerina. I remember sitting on the grassy elementary school field talking with a friend and asking her what she wanted to do, and when she asked me, I told her I was going to be a ballerina - going to instead of wanted to because I knew I was going to do it. And yet, here I am now, almost 8 years and an IBD diagnosis later, wanting desperately to be a pediatric psychologist for chronically ill children.

Bodies change. Diseases change. Plans change. And in turn, we each have the opportunity to change. This is not the life that my 12 year old self wanted, but it’s the life I have now and consequently it’s the life I must lead. It’s heartbreaking that I was forced to change at a certain point, it’s unfair and awful that IBD causes so many interruptions to our lives. But maybe if we’re fortunate, it’s like skipping a stone - we might not always make contact with the water, but if we are lucky, we might just be able to create enough of a ripple to touch many, many other people.


Monday, February 14, 2011

Roses are red, violets are blue, IBD sucks, but a cure we can do!

Some Valentine's ideas for IBDers:

- Write a love letter to your favorite medication and/or surgical technique.
- Give Gutsy a 'new do' - make him red for Valentine's Day and change your profile picture.
- Put hearts on your hospital room door and insist everyone who comes in the room must smile.
- Draw hearts on bandages and/or ostomy supplies.
- Before taking your pills, put them in a cute heart shape and admire.
- Politely ask your GI tract to stop being your Valentine, don't be too disappointed when it doesn't (verbally) respond.
- Eat as much chocolate as you are willing to pay for later.


Sunday, February 13, 2011

Mexico and IBD

There are times when I wonder how seriously my disease has taken hold of my life. After my recent trip to Mexico this week I am now completely sure that it affects my life. Not in the biggest way that I can think of but in little ways.

For example, Mexico is infamous for its tequila – and after just a bit too many drinks the usual symptoms develop. Constant trips to the bathroom (not to throw up – most of the time) and losing 2 pounds in water weight. I then remembered why I avoided getting very drunk all these years. For me at least it takes two to three days to recover from a blow like that and thankfully I thought ahead!

Before leaving Canada I thought, “What if the food doesn’t agree with me in Mexico?” So I packed some bottles of Ensure. Consequently I thought, “If the food doesn’t agree with me and the toilet paper is below par I will then bring my own toilet paper.” Well as you can tell the food agreed with me, but too many drinks didn’t. And I am super glad that I packed the extra ‘necessities!’

I loved Mexico, its culture and its food and I hope that next time I can remember that too many drinks will affect my trip – so I will keep them to a minimum and still have fun no matter what.

Food for thought - Another example of how this disease has affected me is that I’ve been thinking about how not-ecofriendly we IBD people are. We buy top of the shelf toilet paper, use a whole wad and flush it down the drain then, in 1 hour or less we do it all over again. No matter how you spell it bedaai or beday I would sure like to try one.

- Danielle, Edmonton Youth Advisory Council

Friday, February 11, 2011

Give Me A Break

The definition of ‘help’ in my dictionary is probably ‘complete failure.’ By no means do I think that’s an accurate statement for real life, but that is often what it feels like - taking on ‘too’ much (aka a normal amount or what I want to take on), getting sick, and asking to be rescued - it feels like failing time and time again. And so often, many of us fight on despite our breaking bodies.

This past summer before my surgery, when babysitting three one-year olds, I would often take them to the park. Individually, each child didn’t weigh that much - but put them all together in a triple stroller (which, by the way, is very hard to push and maneuver) and pack it up with snacks and bottles and blankets and more, and you get a pretty heavy load - very cute - but very heavy. I would do this several times a week, and worse, we made our way up a massive hill each time to get to the playground or library. I would often have worsening pain on the journeys, and many times contemplated running over to a nearby house, demanding someone watch the babies and then the use of their bathroom. In reality, I should I have stayed in with the babies, but in the moment, nothing was going to get in my way.

Which brings me to now. I - 6 months plus one day from my ostomy surgery - need to start asking for a help. Between Crohn’s and possible other issues re-surging and rendering me to wave my metaphorical white flag, it is hard to carry on with what I need to do. Truth: I could make myself do things. Truth: That would make me more sick. Truth: I need to ask for help.

The actual definition of help: to improve a situation or problem, be of benefit. The actual definition of failure: lack of success. Asking for help is like being vulnerable - only a strong person can admit they aren’t that strong and have weaknesses, it doesn’t make them a bad person, it makes them honest and sincere.

Perhaps I find it so hard to ask for help because I don’t want to be a burden to my friends, or that annoying kid that complains at excess - or that I don’t want to really admit how ill I am. Everyone with IBD wants to live their life, not their life with IBD, and I am no exception. But, against my own judgment, asking for help doesn’t mean not living your life, it means the exact opposite - doing what you can for yourself, and asking others to ‘fill in the blanks’. It’s not taking a pass, it’s taking a step at reclaiming your life, health, and sanity.

I’ll take a cue from The Beatles and ask for help, and then soon, I will be able to offer my help to someone else in need.


Tuesday, February 8, 2011

Beginning Training - Mountain #1

I haven't written my weekly blog in a while because I was hit with my first obstacle. My training for the Canadian Death Race and the Ride to Conquer Cancer has been... extremely slow.

Since the beginning of January I've been noticing some tingling, burning, and 'pins and needles' all over my body... and felt incredibly dizzy and lightheaded at times - I felt like I was going to faint. I stuck it out, until it got really bad, and the tingling was very painful. Im studying holistic nutrition, and every kind of deficiency went through my mind: is this a B-12 deficiency? (No, I take sublingual B-12 every day), is this an iron deficiency (well, although ive been anemic for 3 years, no, my iron since my last blood test was 25 - its always been a 5 before that :S ), magnesium/potassium/calcium or electrolyte deficiency? (No, I take electrolytes!) .... maybe its adrenal fatigue? I have and had no clue.

I went to see my family doctor, who thought it could be anxiety. I called my specialist who thought it could be a side effect of the Crohn's medication I am on (Im not going to say what it is). So... needless to say, I am taking an anxiety medication now (I say this not to publicize it, but in the hopes to reach someone else that might have been through the same thing) and have been told to put my specific Crohns medication on hold until I have taken an MRI and the results come in. Ive seen an neurologist (everything went fine, waiting to get an MRI done to rule out Multiple Sclerosis) and my MRI is at the end of this month... will keep you updated...

SO! of course i've been doing lots of thinking... and I can definitely relate to Jennie's last post... it's challenging to be happy every minute of every day... but God knows I try :) . There are definitely times needed for crying and letting out your emotions. I too wish this wasn't immediately classified as 'clinical depression'. As for anxiety - is it me worrying too much about the future, what my health might be like, etc., or is it truly a chemical imbalance? Maybe a bit of both... I know Dr. Michael Gershon has a book about the gut being as a second brain, I read this book over and over again when doing my undergrad thesis in probiotics and the gut. Dr. Gershon talks about the huge nervous network in the gut, and that a HUGE amount of serotonin is produced in the gut.... and we know serotonin is the neurotransmitter involved in anxiety and depression... it makes sense that if the gut isn;t working at its best, that our entire nervous system can have implications. Anyways... I'm no doctor... I just wish I knew why I was feeling the way I am, and i can't help to keep dreaming of a cure....

But... I haven't given up my training. This last weekend I went cross country skiing 7km on the advanced level trails... my legs are still feeling it! The whole time i thought: its wonderful to be doing this - to have the health to do this.... so, Im soaking in that gratitude ;)


Friday, February 4, 2011

Unreliable Data

No one ever said that things were going to be easy.

I’m 19 years old, going to college, living in a different country than my family, and I have IBD. Before it appears as if I’m campaigning for sympathy, let me be clear - I wanted this, I sought this out, I wanted to go away for school despite the crossing of the border and the problem in the gut, so to speak.

My last hospital visit brought more than I was bargaining for, which always seems to be the case. Over a foot of ulcers has taken up residence in my small bowel - possibly the Crohn’s, or an infection from my surgery... but most likely the Crohn’s. After receiving this information in my still-anesthized-stupor, it brought about a double edged sword. I was happy they found something that might explain my pain, but I was disheartened at the return of my IBD. Over the course of that day and the next, this brought about small fits of crying and frustration.

Here’s where I became ‘unreliable data’ - the doctors come into my room, I cry, try to explain myself through tears, they look at each other and decide I’m insane and/or depressed. I don’t have my Mom or Dad or anyone with me, I’m sick and tired and in pain and upset. No amount of my protesting changes their minds. They do not see the girl who has been constantly ill, finished high school despite it, has been on the Dean’s List each semester at BU, on and on - they see the girl crying over her ulcers. It is deeply frustrating and angering that my situation can be used against me to misunderstand and misinterpret. After all, all I want is for my voice to be heard and valued.

While I’m all for ‘seizing the day’, and storming the proverbial castle, it is also important to have time to be upset and inconsolable. For the same reason that grief isn’t considered a depressive disorder - because it’s NORMAL - being upset is a natural and healthy reaction to illness.

Doctors understand the physiological reasoning for our illness. They can hand out medications and advice until the world ends, but the mission is always only ours. It is maddening, and upsetting, and unfair. But just because things aren’t always (or ever) easy, doesn’t mean that we can’t accomplish everything in our wildest dreams with with determination, passion, and a little bit of luck.