Chemotherapy

"Oh my god, your hair is so thin!" "Yeah, it falls out because I'm on low dose chemotherapy" "YOU HAVE CANCER?!?" 

I dislike chemo. I've never been on enough to go bald or have completely debilitating side effects, but I've been close. A common medication used to control many autoimmune diseases including inflammatory arthritis, cancer, and, you guessed it, Crohn's disease is called methotrexate. Given by a subcutaneous injection once a week, this medication was AWFUL! The normal side effects from chemo were present. I'd get really really nauseous, weak, achey, light headed and just generally felt awful for about 24 hours after my injection. So basically, it was like having a violent stomach flu once a week. Not exactly a great time when you're living 6/7 parts of life. 

After being on methotrexate for a couple of months I started to get anticipatory side effects. Yup, that is EXACTLY what it sounds like. BEFORE I took the injection I would start to get sick. Soon enough it started to spread into stuff that wasn't even related to my injection. If I saw colours that looked like the colour of the medication I would start to feel sick, I couldn't talk about the medication, I couldn't even think about it without feeling sick.

I had a funny experience when I went to a leadership retreat with a bunch of other young adults with chronic illness. Through conversation we deduced that about 3 or 4 of us had been on the ol' methotrexate. We talked about it for about 5 minutes, then all at once we all said "Can we stop talking about this?" And as I looked around, and grabbed a glass of water to settle my own stomach, I noticed the green tinge on my peers faces. Turns out I wasn't the only one to get anticipatory side effects.  

I am not including an image of methotrexate because well, I'm starting to feel icky after writing this post. You can google it!

Tube Feeding

"You can't eat for 3 months?!" "Nope." 

"Oh man, I couldn't do that."

In Canadian paediatrics, one of the most popular treatments for Crohn's disease is naso-gastric tube feeding. Basically, this means a thin, flexible tube is put up your nose and threaded down to your stomach. The left overs are taped to your face, and connected to a pump and then easily digestible solutions are sent down into your body. 

The theory behind this is perfect. The solutions (similar to Boost and Ensure) give usually underweight,  malnourished kids a huge boost in calories and vitamins, helping them recover from a flare. The solutions are so easy to digest that it gives the digestive system a chance to take a break and heal after being inflamed. 

But as good as this sounds, it's a brutal treatment option. I would know. I've been on tube feedings twice. You have to commit to not eating solid food for three months. You are allowed a finite amount of "clear" liquids to curb your cravings; these include chicken broth with no green bits, water, gatorade, light pop, clear popsicles, and three clear hard candies a day. 

This honestly doesn't sound too bad, you're not hungry when you're on the feeds, but you feel socially isolated. You don't realize how much of our lives revolve around food. It's everywhere. I missed eating dinner with my family so much. It was brutal. 

Another thing is that the tube feeding is very visible. People stare at you, people ask you what is on your face, one recently immigrated Iranian student in my high school thought my pump was a bomb...

You have to leave the pump hooked up about 22 hours a day, so it took a bit of time getting used to having to carry it every where and listen to it while I slept.

Also, because I was in my teens when I was on the feeds, I was expected to insert my own tube, when it had to be changed once a month. That's right, I now, have the skills to measure out tube, and feed it up my nose, and then down into my stomach. No, it's not easy, no it's not fun, yes, you gag.  

But I think the worst part about tube feeding for me was the fact that it didn't work. I was still symptomatic, and just plain miserable. 

I made it through a couple of months each time, but it was NOT a good treatment choice for me.   

Meat and Potatoes

"So you must have to be really careful about what you eat then, eh?" "Well, it depends."

When people think of eating to be healthy, they tend to immediately picture fruits, vegetables, whole grains and nuts. Mmmmm....nothing like a hot delicious salad! 

However, when you have active Crohn's disease, you would probably be better off pouring battery acid down your throat and praying for mercy. 

When I'm in a flare, I eat what would be considered the most unhealthy diet imaginable. Low fibre, high sodium, high fat, high carb, no dairy. 

White bread is my staple food, it makes up about 40% of my diet alone, followed closely by white rice. I eat sandwiches on white bread, with sliced turkey and a swish of mayonnaise at least once, if not twice a day. I rely on bacon, eggs, hot dogs and smoked salmon for protein. I have to limit my produce intake to about one serving a day, except for bananas, they're ok. Apples, broccoli, spicy foods like curry and thai food, cabbage, turnip, and carrots are completely off limits, all of which I learned the hard way. 

Although this diet may seem like every 8 year olds' dream, it gets bland pretty quickly. Every once in a while I give in a have a humungous stir fry or salad, and pay every bit of the price. Let me tell you, usually, it's worth every penny. 

This is what I've found affects me when I'm in a flare, no one's disease is the same. Other people I know live off of Boost and Ensure when they're sick. Other people go with steak and potatoes. This is just my own experience.

 But there is something you have to understand. Foods can worsen or trigger symptoms, but they cannot put you in a flare. Eating a piece of broccoli cannot warp your immune system into attacking your digestive system. That's just silly. 

When I'm well, I have so much more freedom with my food choices. I can have salad with my supper, berries on my oatmeal and just about as much melon as my heart desires. I still tend to avoid my trigger foods, but when my disease is in remission and under control, the reigning hand of the heart unhealthy diet loosens its' grip on my colon. 

Doin' Roids

"I'm on steroids" "Hahaha, are you gonna get jacked?" "No... wrong type"

So, for many inflammatory conditions, the miracle drug, is an antiinflammatory steroid called Prednisone. It can be taken in tons of forms such as pills, puffers, IV, eye drops, and I'm sure more. It is used to treat everything from asthma, to Crohn's, to Lupus and everything in between.

Although it makes you feel better, and fast, the general consensus of this "miracle" drug, is that it is just satan. The side effects are horrible. In my opinion, they come in three categories: health, aesthetic, and emotional. The health side effects are by far the most serious to your body stuff like 

• Blurred vision
• Abdominal pain
• Peptic ulcer
• Infections
• Painful hips or shoulders

And long term damage to your bones can cause huge problems like osteoporosis later on in life.

If that isn't enough, there are less than favourable aesthetic side effects such as weight gain, facial hair, acne and "moon face" which essentially means that your cheeks swell up to make you look like Alvin the chipmunk. I've been there, it's not pretty. (Check out my "Contouring for Puffy Cheeks" video on youtube for tips to deal with this). 

Then, there are the emotional side effects, when you take prednisone, your mood can really go one of two ways, depressed or manic. But a lot of people have trouble concentrating, have heightened anxiety, difficulty controlling their emotion and indecisiveness. This is all in addition to the emotional burden of dealing with whatever condition you are taking the prednisone for and the health/aesthetic side effects. 

If you are put on prednisone, comment! I have tons of tricks to deal with the side effects and would love to give/receive support. 

Another post about my personal experience with prednisone will follow shortly!

The Downward Spiral to Diagnosis

"I have to use the bathroom" "Again?"

It started when I was 11. I remember the exact moment I first felt Crohn's pain. I was at choir camp. It hurt, but somehow I knew I needed to use the bathroom. So I did, and it went away. I thought nothing of it. But it happened the next day. And the day after that. And every day for the next year, every time I had to use the bathroom. 

This sign is my saviour.

I was ok. I coped all through grade 6. I did well. Then after school ended for the year, everything changed. I started having more pain, I was tired all the time, I had to get up to use the bathroom multiple times a night. I had no appetite. I started using the bathroom over 12 times a day, because of this I started losing weight rapidly. By the time I was diagnosed I had plummeted to a scary 85 pounds at my current adult height. I was so pale, and I started passing blood when I went to the bathroom, making me feel even worse. It got to a point where I ate half a sub for three days. Not half a sub each day, one, six inch sub for three days. I began to have the most excruciating pain when I swallowed anything. Even water. If you've ever swallowed a potato chip  and had a sharp edge drag down your throat, you know, the pain radiates to your chest and back and you can't breath. That was the kind of pain I had every time I swallowed.

My parents knew something was very wrong, so they brought me into our family doctor who ordered blood work. I cant remember what the results were, but they were not good. In less than two weeks I had an indium scan done. It's this test where they take a ton of your blood, dye your white cells with radio active dye, put them back in you, then take XRays. The dye makes you light up like a Christmas tree in the spots where your white cells go.

That test was enough to convince the doctors at the hospital that I needed an endoscopy and colonoscopy almost immediately. About two weeks later I had that done. I remember being terrified of going into the operating room alone, worrying that I would have to wake up in the middle of the scope to use the bathroom... I obviously did not have a clear understanding of how anaesthesia works. 

When I woke up I was taken to a hospital room, and my parents quietly told me that I was probably going to have to stay at the hospital for a few days. I cried when they said that. Then, the gastrointerologist that had performed the scope on me came in and said the rock solid words that would change me forever: "Yes, you have Crohn's Disease". 

A Pain in the Butt

"I'm not feeling well today". "Oh" Backs up a step. "No, don't worry, it's just my Crohn's. Not contagious" "Oh, what's Crohn's?" Sigh. 

Crohn's disease is an autoimmune disease that affects the digestive system causing inflammation occurring at any location of the digestive system. Symptoms include but are not inclusive nor limited to:  increased inflammatory markers in blood work, decreased appetite, malnutrition, weight loss, blood loss, fatigue, joint pain, red eyes, sore eyes, head aches, increased frequency in bowel movements, increased urgency in bowel movements, pain, lots of pain, more pain, and diarrhea.

Sexy.

Somewhere between me finishing elementary school and starting junior high (awkward stage for any adolescent at BEST) my immune system got confused. The poor thing was probably trying to figure out what fashion was, how to get boys to notice me or not notice me, panicking at the impending thought of being a teenager and totally thought that my digestive system was a threat to my survival. It launched a full blown attack, like that scene in Braveheart right after all the scots show their butts. It was brutal, but that will be another post in and of itself. 

Regardless, the primary symptoms I exhibit of my Crohn's is pain in my left lower quadrant (that lower quarter of my stomach on the left), increased frequency in bowel movements, increased urgency in bowel movements, fatigue, and diarrhea. My disease is primarily located in my stomach, ileum, and pretty much my whole colon. I've also had episceritis which is an inflammation of the white part of my eyes. 

This is what Crohn's disease is to me. Literally a shitty disease. A pain in the butt. 

Jack Mercury

"Some people are born sick, some people achieve sickness, and some people have sickness thrust upon them." - Not Shakespeare. 

I'm Jack Mercury, and I had sickness thrust upon me. I was diagnosed with Crohn's disease two weeks after I turned 12. That was almost 8 years ago. This unpredictable, chronic, and morbid condition has impacted me in ways that I never imagined possible and it's time to share it.

This blog will entail chronicles of my life, as someone who continues to pursue life, despite all of my challenges.

When you're sick, your perspective changes. So here is mine.

Thank you for stopping by. Be sure to check out my youtube channel: chronicallybeautiful12