The Yellow Brick Road and Tripping Gracefully

I might be clicking my heels together three times if I had a pair of sparkly red shoes. Only, I don’t want to go home, I want to go to the end of my recovery.

Most every IBDer is an adapter since we do not experience perfect health 24/7. We learn how to push ourselves and we do the seemingly impossible, usually on a daily basis, to function as ‘normal’ people when we’re ill. More times that not, we adapt.

And thus, I have. But it’s a whole different ball game when it’s after surgery, or so I have found. Adapting no longer means really participating in your life as much as it means you empty the bag often and watch a lot of Everybody Loves Raymond. And that’s okay, that’s called recovery, not a word I’m used to and not a sideline I’m used to either.

So I am on a yellow brick road - a very long one - but on one nonetheless. It’s twisty and the bricks aren’t all even, but I’m on it. What I am so quickly tripping towards? A full recovery, a day when I can stand for hours, when I can get back to school and be independent. I’ll be there soon, with scraps on my knees, but I will be there.

Nothing and no one is perfect. I recently campaigned for smaller ostomy bags since the ones I had were massive and impossible to dress with. And the new bags are great, much smaller and much better for wearing real-live non-recovery actual clothing. The downside - the smaller the bag the more frequent it needs to be emptied. Which is fine, but it poses a potential issue at night since it fills up quicker. And since I’m already have the habit of sleeping poorly down-pat, checking the bag throughout the night isn’t a problem. But it occurred to me this morning as I was cleaning up the bathroom after spilling the contents of the bag on the bathroom floor by accident, that there’s still some curve balls left in the learning.

But what I do know for sure is that no matter how many curve balls there are, I won’t strike out - because there’s no score-keeping, no limit to falling down, and no one-way to do it right.

So off I go - tripping into the distance - trying to do it as gracefully as I can.

Jennie

The Happiness Project

I love to read, and although I can be picky about the books or subjects I like, I normally find myself in a continuous stream of books. Currently, I'm reading The Happiness Project by Gretchen Rubin. I'm not reading this because I'm depressed or even sad, but like the author I find myself a happy person, but questioning if I'm really as happy as I could be. Perhaps this is a selfish though, but it is what it is.

Sometimes I find that my Crohn's gets me down. I think about wanting to go and do things with my friends, or try a new place for dinner, but the fear can sometimes be too much. And I've realized as much as I look beyond IBD, the truth is I will always have it, and there's really nothing I can do about that.

In one point in my book, the author talks about being generous, not so much buying things for your loved ones, but being generous in your thoughts and in your actions. She came up with a theory that people are much more excited to hear they've been thought about in a special way rather than getting the latest gadget or what-have-you.

This really rang true with me the other day...

Honestly, there are about a billion and one reasons why my mom is awesome. I could probably write an entire book, and perhaps one day I will, but more recently, she brought out her A-game of awesomeness....

Perhaps it was all the commericals or maybe it was a little bit of good-will on my part, but sometime in my early teens, I wanted to donate blood. When I found out that I had to be at least 17, I was annoyed, but I figured I could wait a few more years. On my 17th birthday, the exact day, there was a blood drive. I was so excited, I marched right over, told them I was a first time donor, filled out my forms, and got in line. When I was 12 I was diagnosed with Grave's Disease, and after all the paperwork I had to tell the nurse what medications I was on for that, and turns out because of what I was on, I was on a temporary "cannot donate list" until I had been off the medication for a while.

I was upset, all I wanted to do was pass on a favour, give blood, and perhaps make someone's day, somewhere, a little brighter and I couldn't do that.

I wasn't giving up home. In university I had radiation to remove the function of my thyroid. I was off the medication and excited to go back, get that first time donor sticker, fill out those forms, and actually make a difference. That's when I got even more bad news. Between my 17th birthday and my thyroid radiation, I had been diagnosed with Crohn's Disease. When speaking to a nurse from Canadian Blood Services, she told me that because of the autoimmune nature of the disease, I couldn't donate. It wasn't because of medications or anything like that, it was because of the disease. My chronic condition. I had been black listed from giving blood.

This made me a little more upset that even I had expected. I wanted to make a difference, this seemed like the easiest way. I got annoyed when I found out how many people didn't do it, it was so easy, and it saved so many lives. And here I was....tainted.

Three years come and go, and I hear the commercials on the radio and feel a little pained that I cannot donate. That's where mom comes in. She called me the other day and said she had something to tell me. She had been keeping it a secret, but on the day she called she had just come from Canadian Blood Services. She said that all my conversations about giving blood had really struck a nerve with her and hit home, so on that particular Tuesday she went and donated blood, in my honour.

I couldn't believe it. I felt as though it had been so long since I brought it up. But there it was. She even set up her next appointment to go again in the fall. So, my mom, my hero. Once again she saves the day. She may have saved my day, saved my dreams, but even more importantly, she saved lives.

So I guess as the story goes...I can't do everything, but with the help of people who care of me, I am limitless.

Yours in good health,
Steph

The Vicious Cycle (trigger foods and chocolate)

Have you ever noticed that the foods you aren’t supposed to eat are the ones you want the most? I usually don’t have this problem. You see, I am a sweets kind of person. I love chocolate, cookies, cake, and candy. My trigger foods (and salty treats) like chips, popcorn and french fries are last on my list. I’ll take a brownie over a burger any day. Most of the time, I won’t even eat all my meal as I’m saving up room for the dessert.
Nevertheless, when my IBD flares up, everything changes. It’s as if all my trigger foods begin to haunt me. All I can think about is popcorn and corn chips. And French fries. And burgers. Offer me a brownie, and I’ll pass. Bring me some chocolate to make me feel better, I won’t touch it. When experiencing a flare up I live for fried food and salt.
And so begins the big battle. Everyone knows when you’re sick, you let yourself eat whatever you want. There is no point in suffering any more by denying yourself whatever empty calories and heartburn you desire. However, when you know that eating these foods will cause you endless pain and hours on the bathroom floor, what do you do? Me? I eat them. What can I say; I am truly a sucker for punishment. I will go to A&W and order that mozza burger and fries, and I will eat it all. And I won’t even want dessert. And then I will go home and be in excruciating pain for 24 hours. I will make my flare up worse, all for a burger. And since I am keeping nothing down (or in) anyway, I convince myself that eating fried food is the only way to ensure my body is getting enough calories for my survival. So I will eat more burgers and fries and popcorn and cool ranch Doritos. It’s a vicious cycle really. The sicker I get, the more I want these foods. Of course, I keep eating them (for my survival!!) and I get sicker and sicker until finally I am medicated and then I get better. Then when I’m healthy, it’s back to chocolate and brownies.You'd think knowing all this would help prevent future occurrences, but I'm a weak individual when it comes to food. However, one can hope.
Anyway, until next time (and next flare up) Mr. Burger and fries, I think it is time for a brownie.

Lesley

Happy Days

They looked at me and smirked slightly, not believing that I wasn’t nervous. I smiled and nodded, attempted a joke, but I could see the doubt in their eyes. Understandable, I suppose, as I was minutes away from being wheeled into an OR and having a 5 foot organ clipped out of me forever. But I promise that I wasn’t nervous.

Okay, that’s a bit of a lie in some ways. I was nervous to wake up after the surgery and be consumed by nausea from the anesthesia. I was nervous that my family would have a meltdown during the 7 hour wait. But I wasn’t nervous about losing the organ.

I know that sounds insane but it’s true. When you’ve had every drug and been labeled a ‘primary non-responder’ (which I swear is GI term for loser), losing the organ that has tried to destroy your life for 7 years doesn’t seem like a huge loss to mourn.

I can’t remember falling asleep exactly - whether or not I had been put under in the OR or in the holding area, I just remember waking up and rolling around in agony, moaning, as the nurses put the pain controller button in my hand and coaxed me to press it. A hefty 10 hours after my family had sobbingly left me, they rushed to my side, patting my hand and smiling. And so began my journey into the recovery, the post-surgery battle back on my feet.

After a week of two steps forward and one back, I was finally released from the hospital, worn but smiling. They wheeled me out with my army of massive balloons and family, and for the first time in a long time I felt the August sun against my face. My Grandad stood by my side and whispered that these were happy days. I smiled at him, not mentioning the scars across my abdomen, the pain, or even the loss of my organ - because he was right, I was going home and I was on my way to health, and that means happy days.

My Mom had emailed some of my doctors letting them know about the surgery. Most of the responses contained best wishes, but one also contained something that took me by surprise and slight horror - sympathy. A doctor was passing along her sympathies to me. It shocked me to say the least since there was nothing to be sorry for, only a future to be excited for. I found it almost offensive; anyone who knows what my IBD history has been would offer congratulations in a heartbeat and never sympathies.

One of my roomies in the hospital, a witty older woman who served as my pseudo Grandmom for several days, offered the following advice off a magnet on her fridge: With enough caffeine, anything is possible. While I’m sure that is true, I think that also with enough determination (and perhaps medicinal drugs), anything is possible. There isn’t a scorecard in life, no referee to blow the whistle when you fall down. But that’s okay, because what matters isn’t as much what happens to you as it is how you understand and interpret what happens to you. I lost almost my height in an organ, I will never go to the bathroom ‘normally’ again - that could make anyone terribly upset. But - I’m giving myself a future by letting go of my colon, I’m freeing myself of the pain and that makes this experience a positive one.

So, you see, my Grandad is perfectly right - these are happy days.

Jennie

The IV Pole Metaphor

Ah, that IV pole, always one shove ahead of us.

Just like people, IV poles come in a multitude of varieties - purely tall, adjustable, big wheels, tiny wheels, squeaky wheels, baskets attached, pumps hanging on, even the number of hooks at the top. It’s kind of like the medical version of hand-cuffs, we are literally plugged into the wall and attached to something, a two-for-one deal.

In the middle of the night it can be the enemy, a desperate act to unplug and get to the bathroom. During the day it can be the bother that you trip on during your walk. But no matter what time of the day, it can serve as a constant reminder of being sick with IBD.

I think the IV pole experience is a good metaphor for having IBD. At the beginning, you typically either try to run away from it unsuccessfully or try to cling to the pole, unsure of what else is happening. The poles are a little too big and wobbly at first, at the beginning we can only steer them with two hands and immense concentration. But soon enough, we find we’re pushing it along with one hand.

Then they are the pumps. Things can be streamlined, one pump, or crazy, four or more pumps, barely fitting on the pole and beeping and unable to be calmed. We need help sometimes, when we buzz the nurses in frustration and panic at the pump beeping, but very quickly we learn where the ‘silence’ button is - a massive saving grace in the middle of the night.

Just like any other skill, mastering the IV pole takes time and is an ongoing challenge. If we learn from the IV pole, to be the squeaky wheel and get our questions answers, to be heard as youth, to stand tall, to ask for help when we need it, and to try to walk side-by-side with everyone in our life - then we too can be supportive, adaptive, strong, and unbreakable.

Jennie

Do You Believe in Magic?

When I was about ten, I came across a picture book that made me believe in magic. On the back cover it showed a girl and a boy sitting in a closet with the book open and fireworks flying out. I was so excited and I quickly ran to my parents’ walk-in closet and plopped myself on the floor. I peeled back the cover of the book, anticipating fireworks and magic, and to my horror, nothing happened. I flipped through the book, desperate for the magic, but there were no fireworks. And my brief stint in believing in magic was over.

Now that I’m 19, I only have retained a smidgen of belief in magic, and it probably doesn’t even count. And that’s because the only magic I believe in is a magic-bag. It is always a necessary accessory to survive a flare for me. My family has been trained to heat it up for two minutes in the microwave and deliver it back to me in a timely manner. It is my tell-tale sign of active disease.

In the sake of continuous comfort from the heat, I have invested in several magic-bags. Two are long so that I can sling it over me when I’m lying on my side, and one is a big square for sleeping on my back. But beyond the different uses of their sizes, it’s essential to have multiple so that one can be heated while one is on you, hence a non-stop flow of perfect temperature magic-bags.

But on the go, the solution is not as easy. The heat wears out quickly and then you’re lugging an unattractive bag of beans. Fear not, there is a cure! Any of those heat wraps you can buy at the pharmacy to slip under your clothes for back pain - turn them around and voila, heat on your tummy!

Yes, magic-bags have been a savior of mine for the past seven years. Crohn’s can easily disenchant people with it’s unending mission to destroy our bowels; but for me the simple things - like enjoying a warm magic-bag - can make the minute to minute battle more manageable and much easier to deal with.

Whether or not you believe in magic, remember to believe in yourself.

Jennie