My Medical Therapy Report Card

Medical Therapy	Grade	Comments
Immuran	D	·          Student consistently took the medication, however did not seem to benefit much from it ·        Student complained of hair loss ·         She could improve by being increasingly patient waiting for results that will never come
Prednisone	B-	·       Student was successful in eating her parents out of house and home ·       She successfully stayed up very late and lived on little sleep ·       Student showed fantastic improvement in energy levels and bowel symptoms ·       However, due to mania induced by this medication the student was an absolute nutter
Cirpro/Flagyl	D	·       Student’s body failed to meet the criteria of success on this therapy ·       In this area she showed little improvement in her bowels and energy levels ·       We advise she drop this course.
Naso-Gastric Tube Feeding	A+	·       Student was successful in achieving weight gain ·       She also successfully completed a musical while on this therapy, singing despite the tube in her throat ·       For this we congratulate her.
Salofalk	C-	·       Student failed to show much improvement ·       Our standards are that the student improves and takes every dose of medication ·       The student said that the huge number of horse pills were “too difficult” to keep up with ·       Maybe you as a parent can talk to her
Remmicade	A	·       Student showed excellent performance with this treatment. ·         Bowels and energy levels became normalized and on par with her peers ·       She is no longer behind her class in this section
Humira	A-	·       Student showed a continuation of already established strengths. ·       Keep up the good work.
FK-506	A-	·       Student maintained already decent status. ·       However, our concern is that if not every assignment is completed, student will fall behind after only one.

"Are you hungry?" "No"

In December I had an encounter with the rarely found, but very effective zinc deficiency. This caused me to have a raccoon like rash around my eyes, nausea, altered taste perception, and above all else, reduced appetite. Because of this I was brought in and hospitalized, due to my nutrition markers being so low. In the hospital, alongside nocturnal tube feeding, I was encouraged to eat, well, as much as I could. Awesome right? Nah. I was disgusted by food. I’m not saying I wasn’t hungry, I’m saying I was REPULSED by food. The thought of it made me queasy, the sight made me gag and I just couldn’t eat. The hospital food, did NOT make it any easier. Here is the menu that I would typically follow in the hospital, and let me make it clear, that in terms of choice and selection, I had one of the best available.

Breakfast: Breakfast would consist of a mini container of cheerios (exactly 80 calories worth) a half a cup of soymilk, half a cup of diced, canned peaches in water (not syrup) and one sugar packet on my cereal.

Lunch: I somehow managed to get myself assigned the same diet as the patients that were in the rehab hospital, so my lunch options were usually pretty good. I guess if you’re in rehab, you’re in for a while, so you get better lunches. Go figure. My lunch usually consisted of a fruit plate, which I got solely for the grapes, French fries (Mmm! They were a lot like the fries from KFC), a cup of soup that was usually vegetable or chicken noodle and a sort of vegetable that varied from carrot sticks to coleslaw. Lunch overall was pretty decent and I can’t complain about it.

Dinner: Dinner. Oh dinner, how is possible for a meal to go so wrong? The meat options were always terrible, beyond terrible, so I usually opted for the sandwich provided it wasn’t a salmon sandwich. I made that mistake once, it was nasty. Alongside my sandwich I would get about a half a cup of plain, white rice. It was the cheap stuff with no flavor. I would also get about a half a cup of boiled to death wax beans….tasty. I’d also get some sort of dessert, either jello, banana

Other: I’m sure this category is the main reason I didn’t starve in the hospital. I would eat soda crackers and Cracker barrel individual cheese. I would eat small individual ice creams at really weird times, like before breakfast or right before I went to sleep. I ate a LOT of baked chips. Nurses would share food with me at night so I ate a lot of fruit from fruit trays (melon <3), I also drank a lot of hot chocolate. I loved hot chocolate in there.

Thank you all for returning to my blog despite my disgustingly long hiatus. I promise there will be more posts very soon! Muah!

Seamless Travelling with IBD

"I have a medical condition, can I use the first class bathrooms if I need to? They're a lot closer"

I'm on a bit of a travelling theme, going to Disney took a lot of preparation, thought, planning and strategic packing for me to have the best trip possible.

I think, I have almost perfected flying with IBD. This is my guide to seamless travelling with Crohn's. 

Your Carry On:

1. Bag with Multiple Compartments
• As for any traveller, the separate compartments keep you organized in times of stress and hurry.
2. Change of Underwear/Shorts and a Ziplock Freezer Bag
• It's probably the worst reality of IBD, but accidents can happen. Flying, there are limited bathroom situations and you might not make it. Bring a change of clothes and a freezer bag to seal the soiled garments (and their smell) in. Then throw it out. No pair of underwear can be worn again after it has been tainted with that kind of memory.
3. Charmin's Flushable Wipes Travel Pack
• Public washrooms almost always use extra cheap toilet paper which can do more harm to us IBD sufferers than good. These super soft wipes clean you well, do so gently and they are safe to flush!
4. Hand Sanitizer
• Between children, old people, and recycled air, planes and airports might be the best place for germs and viruses to thrive. I suggest sanitizing after touching public surfaces. You never know what's living on them. 
5. All Your Meds in their Original Containers
• Even the ones you don't think you'll need or that you don't use regularly. Murphy's law is that if something can go wrong, it will, so you will probably end up needing your weird eye drops, or nasal spray.
6. Plane Pillow and Blanket
• Comfort is my #1 priority when I fly. I find major comfort in soft material so when I fly I have as much of it as I can. A blanket because it can get cold on airplanes and the pillow so I don't rubber neck when I pass out asleep. 
7. Cellphone and Charger
• The charger is especially important to me because I find that in new locations, my phone dies extra fast when searching for wifi networks. I need my phone to be charged so I can let my travel companions that I'm in the bathroom. Duh.
8. Minty Gum



Best Cap Type Ever

• I don't actually chew the gum. I just find that the minty taste can calm my stomach, so I tend to just suck on it and mash it up with my tongue in order to refresh my mouth. I avoid chewing it because it makes you swallow air and that ends up causing pain.
9. Water
• You have to buy it past security, but water is 100% essential. No IBDer can afford to get dehydrated, or not have something to take meds with. It's best if you can get a bottle with the top like the one in the picture, because you don't need two hands to open it. 
10. Kleenex
• It's just a great multi use product and comes in very convenient packaging for travel. I especially like to use mine to blot my face if I sweat while I'm in pain.

Accommodations You Can Get

There is a lot more that you can get to accommodate your illness while travelling than you'd think. You just have to ask. 

1. Use of special bathrooms. 
• I just asked the flight attendant if I could use the first class bathrooms if I needed to, on account of a medical condition, and without hesitation they always permitted me. Go figure.
2. Downsized Medication Containers.
• Sometimes when I get medications I get a couple month's worth of pills at a time. These come in huge containers. I went to my pharmacy and asked for a small pill container with the same label so that I could save space in my carry on and they happily obliged. It saved so much space. 
3. Use the Chair
• If you're tired or in pain take a deep breath, realize that your illness does not define you, and take a seat. Generally you will feel better and get a little bit better treatment if you use a wheelchair in airports.

Take Responsibility

Your illness isn't your fault but it is your problem and your responsibility. You have to do what you can to keep yourself healthy.

This might be a TAD overkill

1. Don't Experiment
• Travelling is NOT the time to be adventurous with your food choices. I learned this the hard way. Stick like glue to foods you know won't set your disease off. Personally for me this means low fibre grains, meats, and water.
2. Dress Appropriately
• It's ok to want to be stylish or professional looking, but if you're boarding a 10 hour flight, don't wear something that presses on your abdominal pain spots. Make sure you dress comfortably, with stuff you can easily use the bathroom in, walk, and/or sleep in if need be.
3. Take Your Meds
• This is just plain common sense. It doesn't matter that your routine is thrown off. You need to take your meds to stay healthy and enjoy the vacation. 
4. Sleep
• You can't stay up all night. Or maybe you can, but I can't. If I don't get enough sleep I get this horrible hangover feeling and it's harder to make good choices about activity and food. Sleep is almost like a medication.
5. Be Realistic
• You may not be able to do a 6 hour hike up a mountain. You may not be able to go wind surfing for an entire day. You may not be able to sit through a Tibetan monk meditation session. Try to be realistic about what you can do so you don't burn out within the first two days. 

I hope some of this helped my fellow IBDers, I wish someone had given me this advice before I went on my trip. 

If you have any other suggestions let me know! I'd LOVE to hear them. This is the first time I feel like travelling is even plausible for me, and it's so exciting!

Don't Look Sick, Even Though You Are

"You look great!" "Thanks! Looks like the pounds of makeup I dumped on my face are working!"

I don't actually feel better when I'm all dolled up. But at least emotionally I do, and I feel pretty. That to me is pretty worth it. I have a couple of tricks to distract the eye away from the physical signs of illness, because people typically admire health and equate it to beauty (I don't always do this, sometimes I love the way I look when I'm tired and pale. I know, I'm weird). So, here they are. 

Have at 'er:

1. Conceal, don't reveal.

She looks very optimistic...

• I'm pretty sure you all know what I mean. Constant fatigue leaves us chronically ill folks with the nastiest of under eye circles. There's really no way to deal with this other than to slap on that concealer. If you have bluish circles, choose a concealer with a salmon or peach tint, if your circles are reddish, choose something with a yellow base. 

2. Culla. 

What a lovely healthy glow!

• If you don't have any friends from the hood, say that word out loud. Yes. It means colour. I'm talking about blush. A good pink, peach or coralcoloured blush without too much shimmer can help keep you from looking like you've lost blood (you probably have lost blood).
  
  
  
  
  
  
  

3. Scrubadubdub

That's right, you're happy.

• The only way to get rid of dry flaky, dead skin is to take it off. Nothing else can save it. Invest in a good exfoliating scrub to use in the shower. Think of it like shedding your dead, sick, skin to make space for new, healthy skin. 

4. Moistia

• Again, pronounce it out loud. Just like Gammy Num Num from that horrid movie "The Master of Disguise" give your skin some moisture. Drink water and load on some lotion. Dry skin makes you look dehydrated (you probably are dehydrated). 

5. Shine

Look at those luscious locks!

• Your hair. I always spray the bottom half with a nourishing shine spray. Your hair becomes dull when you don't get enough nutrients, so I pretend like I do, by spraying fake health all over me!

6. Layer

This might be a TAD much. 

• Whether you've put on weight or lost it, layering helps you control your body temperature, and hide whatever body your health is giving you at the moment. 

7. SPF

Lather up!

• I don't know why, but a ton of medications make people very sensitive to the sun. I know a lot of people who argue that a tan makes you look healthier. Ok, a tan. But I'm half dutch the rest irish and french. I don't tan. I burn. Like chocolate chips. Or a leaf. Or human hair. Something that burns easily. Just protect yourself from the sun. It's better. I promise.

8. Vampy Pout

Dem lips. 

• I'll be honest, I don't even know if this works. But if i'm feeling really sick and really down on myself I put on a dark lip colour. Whether it's red, plum, or a deep rose, I feel like the boldness of the pucker just catches people by surprise and for at least a second they're taken aback and forget I look like crap in every other respect. 

Whether it boosts your confidence or literally erases your signs of illness, any tips are useful. If you have any share them below, I'd love to try 'em out!

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!

The Dark Side of Peer Support

"What meds are you on?" "Remicade" "Oh, I was on that a couple years back, I hope it works for you"

The old saying "misery loves company" could have been written by people with chronic illnesses. However, I've found that spending too much time with other Crohnies can sometimes generate more misery than it alleviates.

As a young IBD patient, I was routinely recommended to attend IBD patient meet ups, which gave kind of a support group atmosphere. The problem is that if you cram a bunch of teenagers, with the exact same illness from a very small area into a room for a couple hours. Things get personal and angsty. Fast. 

These meet ups, instead of making me feel like I was less alone in having a chronic illness, and more justified and intensified my feelings of "why me?", anger and hostility towards my illness, body, and even caregivers. This was NOT a productive or enjoyable attitude to have. 

I made a certain friend who also had Crohn's and her outlook corrupted me to be untrusting to my doctor, and generally feel like "the world did this to me". It was awful.

Luckily after only a short time I realized how ridiculous this whole viewpoint was. I cut my ties with her, and have since been reluctant to make friends with other IBDers. 

However, I did NOT cut myself off from peer support. I find it extremely positive to connect with other people with chronic illnesses. When you're in a mix, everyone shares sympathies of difficulty dealing with the burden of illness, feeling isolated and depressed, dealing with medications and side effects and other commonalities. But no one shares the exact same doctor, exact same symptoms or exact same stories. 

This has been my way of finding peer support that actually benefitted me, rather than dragging me down into a dark abyss of negativity. 

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.