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.

How To Convince People You Aren't Disgusting

"It's been a week since I showered" "Really!?! I can't even tell"

When I was in the hospital I had a number of things attached to me post surgery. I had a catheter, a rectal drain, two IVs, oxygen, and a drain. I basically was an octopus, so there was no showering for a while.

What did I do to make myself seem less of a disgusting mess while not showering for a while? I'll tell you.

1. The Miracle of the Bird Bath

Well, this is pretty self explanatory, but you get a face cloth (or several) dip it in hot water, and scrub      your smelly bits. I'm talking armpits, under the boobs, groinal...

My personal favourite!

2. Antiperspirant

I'm sorry, but I don't care if you're all natural, and don't like the idea of shutting off your sweats, but if you're going more than 3 days without a shower, you need some 24/7 protection. 

She's got the right idea!

3. The Bun and the Band

Once your hair gets greasy, there isn't any saving it. You can use dry shampoo for a day or so, but honestly the product builds up and works against you. My go-to greasy hair cover up is a top knot and a stretchy headband. It works wonders and keeps your guests from thinking you're completely gone. 

I'm a Liar Obviously

"I am here to stay" "Good job"

So, in my last post I said I would be back more regularly. Obviously I lied. Forgive me, I ended up in the hospital with an abscess and needed antibiotics, a drain and fluids.

Now I'm home again (with wifi finally yay!) and am in a "home hospital". Luckily, I was able to get a portable IV pump called a CADD (I don't know what that stands for) so I can do the IV antibiotic, one called ampicillin from home. It's awesome. I still have a perk drain in my side and the antibiotics/pump are heavy, but it is MILES better than being in the hospital. That place, is a nightmare. I'm going to have so many posts just to talk about all of my "experiences" in the hospital. From roommates to recovery, I've got a LOT of material to cover. 

Where Have I Been?

"I'm going to the grocery store, can I get you anything?" "Lays Plain Baked Chips please!"

Well, well, well, look who decided to keep blogging? I bet you all thought I had given up. Quite the contrary. 

I actually went to camp for a week (NOT bringing my laptop to that, it's my time away from real life) and then had surgery. I'll get into the details of surgery when I feel ready. It's still pretty fresh (less than 12 days ago!) and I'm still adjusting.

The good news is that I'm alive and well and back to stay.

I am going to use this post as basically a splatter of word vomit to gush about my current obsessions. I am taking a semester off of university to recover so I've developed some interests to keep myself occupied. They are, as follows:

1. Home Decor

• A friend of mine who also blogs runs a home renovation/decor company (see her blog here!) and I was talking to her about it and I'm hooked. I have no less than 5 home decor magazines on the go right now, follow a few twitter accounts, follow a few blogs, I'm a woman obsessed. My parents agreed to let me design the renovation for their ensuite bathroom and I'm thrilled!

2. Lays Baked Plain Chips

• They're not flavourful. They're very plain, but for some reason I love them. I always have. I first tried them alongside a Subway sandwich but now I can't stop. They're slightly salty, and easy to digest. The perfect Crohnie snack. 

Cuties like this are so fun!

              3. Claw Clips

• I don't know why I am 20 years into figuring out this, but claw clips don't leave an elastic bump in your hair....AND they create the illusion of having more hair, which for me isn't a bad thing. Mine is so thin.

                  4. Pinterest

• When I first got my account, I didn't think much of it. I got it to share ideas with a photographer for a shoot that I was doing makeup for. But recently, with my inability to do whatever I want, I've been pinning up a storm of dream boards, plans and other thrills for the future. 

I'm back now with vengeance and I WILL be posting more regularly. 

Stay strong beauties!

I LOVE Toilet Humour

"I am better at describing the intricacies of poo than wine" 

No sense in wasting TP when it's just a Pee ;)

I can credit my sense of humour with keeping me from sliding into huge depressions at every flare up of my Crohn's disease.

There is a VERY special place in my heart for toilet humour, and basically NOTHING can gross me out. 

This is a musical number performed by the hit show Scrubs, that I think every person with IBD should see, and probably memorize. 

Man is it catchy.

Sit back, enjoy and listen to my Crohnie theme song: Everything Comes Down to Poo

A Puppy a Day Keeps My Crohn's at Bay

"I love dogs. And kitties. And llamas. Actually all animals."

From the time that I was born until I was about 8 years old my family had a valley bulldog. He was kind of mean looking, but honestly acted more like a cat. He just liked to lay in the sun. I feel deep down in the heart of my brain that he is the reason for my love and lack of fear, of animals. 

Animals play a really special part in my life. I personally believe that animals have an innate ability to recognize when someone needs them. When I'm sick, I swear that animals zoom towards me. Not so much cats, although my cat does tend to nap with me when I'm sick. 

               Llama animal therapy! 

But dogs, goats, sheep, and other larger mammals always seem to gravitate towards me. 

I don't have my own pet now due to living in university housing, so I shamelessly mooch off other people's furry children. Mostly dogs. 

I have a couple that I visit regularly, and it's kind of embarrassing but their pups won't leave my side while I'm there. I don't even feed them treats or anything. They just never leave me, and I love it. 

I find animals bring a sense of calm, contentness into me. I relax and smile and pet. It slows me down and makes me feel so much better. It's just like that scene from 50/50 when the main character gets a greyhound named Skeletor.

My top picks for dogs that I want:

Grey hound

Great Dane

Standard poodle

Dance Yourself Clean

"How can you get through a dance class when you're this sick?" "It's exhausting and painful, but it makes me so happy that I don't care"

Ok, I'm not this good, but you get my point.

I've danced on and off my whole life. I've done ballet, hip hop, jazz, belly dancing, folk, tap, musical theatre and burlesque. 

Dancing has been a saviour for me. Not only has it kept me in shape (sort of) it has been like therapy. 

Nothing can cheer me up like a ballet class. It's impossible for me to feel sorry for myself or frustrated with my body and disease, when I'm dancing. Even when I'm trying to nail that double pirouette or hold an arabesque for just a few more seconds, it consumes me in a way that doesn't leave room for me to be thinking about my disease. 

Trying to hold a balancing pose is like meditation. I've can't say how many times people have recommended I try meditation to help my Crohn's. Dance is better meditation than me trying to sit on a cushion and say Om. But when I try to balance in fifth position, or in an arabesque, my mind is blanker than a fresh chalkboard.

 Despite being quite ill, I'll drag my sorry butt into the studio or rehearsal space and forget my woes for a while. 

I have done this consistently for the past 8 years and it's benefitted me more than any other form of exercise or stress relief. 

When I dance I hardly feel pain, I don't feel sad. It's a euphoria that dancers understand. It's my favourite thing to do. And it helps me cope with my illness in a way that is unexplainable. 

I wish that everyone could experience dance the same way I do, it would probably help a lot. 

Where Will You Be When Diarrhea Strikes

"You ok?" "Yeah, I just heard some unfriendly, very ominous sounding gurgles" 

You could be here...

Or here...

Or here....

Or God forbid here...

It could be here...

I think it happened to him here...

Those girls are in ignorant bliss....

It happened to Man's best friend here...





. . .

That's the same face I make.






Hope this brought some humour to our symptoms. Have a great day!

A Picture for Fun

"I love a good pun"

My Sanctuary and My Prison

"Where did Jack go?" "Bathroom" "Of course"

I've decided to dedicate this post to my relationship with bathrooms. We have a special bond, me and the water closet. It's difficult for me to go nearly anywhere new and not become acquainted with their facilities. 

For me, the bathroom is a sanctuary, somewhere where I go to relieve myself of horrible pain. I almost always feel better walking out than I do walking in. It's a place where it's just me, and my Crohn's. It's like our together time. A time where I can just be mad at it, mad at my body, mad at my life. Where I can pray to God to smite me or at least knock me out until the pain passes. I spend more time in the bathroom than anyone else I know. I go up to 12 times a day and can stay in there for up to 20 minutes at a time. THAT'S A LOT OF TIME TO SPEND IN THE LOO! 

OH BAYBEH

Without fail, if I disappear, I have gone to the bathroom. Hey, at least I'm easy to find!

My favourite bathrooms are in fancy restaurants and hotels. They're just the nicest and cleanest, sometimes having special soaps, lotions and perfumes or real towels to dry your hands with.

I'll take it!

But in a pinch, a dirty, grimy, hasn't-been-cleaned-or-maintained-in-8-years toilet can look like a gold encrusted throne to me. 

The relief I feel when I get into a bathroom is indescribable.

I made it! I think to myself. It's like a victory every time. 

So I've painted a pretty picture of what a bathroom is to me, and all of it is true, it's just not the whole truth. 

The other half of my relationships with bathrooms is that it's my imprisoned battleground. I always have to be near one. It's like a weird form of house arrest where moving between safe checkpoints is a nerve wracking and dangerous experience. Except instead of an ankle alarm sounding, my anxiety kicks up and nothing is enjoyable until I'm back in an acceptable radius of a restroom. 

A bit hyperbolic, but accurate metaphor

And then there is the experience of actually using the bathroom. For me, this means my worst pain. I always feel relieved when I get into a bathroom because it means I made it, but then I have to put my war face on and engage in open fire. (TMI?)

The pain is so bad that I almost throw up frequently, pray for mercy, and have a difficult time keeping from screaming in pain. Not to mention that in most public washrooms the loo paper is cheap, that the wiping is rough and unpleasant. 

When I feel the pain coming on, I also feel the dread No, please no. It's only been 45 minutes. I don't want to go back in there. No. It's going to hurt. No. Please no. 

And if I forget my iPhone? I don't even want to think about that! 

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!