Me and Caffeine

"Should you be drinking that?" "Probably not, but I don't care"

Coffee. Tea. Dark Pop. 

I can't let a day go by without starting off my day with a nice hot beverage full of the wakey-wakey chemical. I will literally fall asleep without it. I attribute most of that to being raised in a very European style (I'm half Dutch), and started drinking tea every morning when I was about 8 years old. 

However, there is nothing, I repeat nothing, good about caffeine for people with Crohn's. A full bodied cup of dark roast has even the healthiest gut rushing to the toilet in a half hour. For someone with Crohn's, caffeine is like kryptonite, yet a lot of I've met people with the diagnosis indulge in even more than the daily cup of joe. 

It's a really hard balance to achieve. As mentioned previously in one of my posts, one of the most debilitating symptoms of Crohn's disease is fatigue. Caffeine is fake energy, but it comes with a price. You have to be choosy. The internal debate of "Do I stay tired or do I use the bathroom a few more times?" "Do I stay awake to write this paper and suffer through the pain, or do I give up and beg for a deadline extension?" is relentless. I tend to choose the more painful, frequent trips to the bathroom over missing out on something I want to do, even if I feel ill. When I'm in a huge flare (I'm talking hospitalization) I tend to stop the caffeine, mostly on account of my doctors not allowing me to have it, but give it a few weeks back at home and I'm right back on it.

I LOVE meeting a friend for coffee, sitting down with a cup of tea to write, or having an ice cold diet pepsi on a hot day. Caffeine is the gut stabbing friend that I just can't seem to do without, nor do I plan to.

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. 

How to Apologize

"Sorry." "Can you say that like you mean it?" 

I have a problem apologizing. I don't know how much of it is my personality or how much of it is being Canadian, but I apologize for everything, whether it's my fault or not. If someone bumps into me on the sidewalk, I say sorry. If I forget to close the window on a rainy day, if I forget something someone told me one time that was of little significance, I say sorry. I over apologize to the nines.

However, I'd rather over apologize than not know how to at all.

Some people see apologizing for something as weakness, they're hostile and reluctant to say sorry because they regard it as admitting they were wrong or at fault. 

Apologizing is not always admitting you are wrong. I've apologized for countless things without stating I was wrong, or that the other person was right. 

Apologizing is taking responsibility and showing remorse for the damage that your words, actions, behaviours and choices have caused another person. 

Apologizing acknowledges the other person's feelings, regardless of what you are apologizing for. 

That's why people say "I'm so sorry" when someone is experiencing a loss. Last time I checked, 99% of the world's population isn't murderers, so why is it that we can say "sorry" at a funeral for a death that isn't your fault, but not over the dinner table when your sibling takes your joke a little too seriously?

There are two things you can say when you apologize: "I'm sorry" and "What can I do to fix this?". Anything else, and it gets complicated. This bare bones apology might seem skimpy, but it is genuine, and sincere. 

It's just a matter of realizing that people's feelings are more important than being right, or free of "fault", we all need to swallow our pride, and value our relationships with people who are important to us more than our own stubbornness.

Try to keep the peace.

But I Just Came Off It!

"I think you need a course of steroids" "Like, need?" "Yes, need." "Fine."

Me and preddy have had a rough relationship. A little more time together than was good for us I think. I've actually lost count of exactly how many courses of prednisone I've done, but on average I believe it was about 2 per year since I was diagnosed. I'm guessing I've done between 15 and 20 courses of it since I was 12. Thats NOT good. 

As a young female just starting out junior high or middle school or whatever you want to call it, my first  course of prednisone was traumatic. It made me healthy, don't get me wrong. And I felt better on it than I had the entire previous summer. I even chose it as my treatment path, it was either that or 3 months minimum of nasogastric tube feeding (I'll explain that later). But holy crap, prednisone was rough at age 12. 

I had the most veracious appetite. I would come home from school and literally eat bowls of cereal or soup and food until I was full, which, took forever and never felt quite satisfying. So naturally, my weight ballooned upwards, I put on 30lbs in about 3 months, my cheeks puffed out and I was horrified at my appearance. At 12 years old, this really was the worst thing that could happen to poor adolescent me. After I finally finished the last of the pills, I was free! But I relapsed into another flareup only 10 days later. I spent the next several years with my Crohn's trying to avoid prednisone as much as possible.

As I got older, my reaction to each course of steroids changed. Now instead of getting extremely hungry, my mood is more effected. I become quite manic, taking on huge projects (why do you think I've started this blog?), not sleeping, being irritable and hyper. This impacts my relationships with people I care about, it affects my ability to work and learn due to my lack of concentration, and my less than desireable amount of sleep just throws me off completely.

However, now I realize that it's temporary, and I value being able to participate in life by feeling well, than caring about silly aesthetic side effects. My looks return, my mood stabilizes, my relationships recover. But I can't rebuild any of that if I'm still sick.

Comment below with any of your experiences on prednisone!

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.