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!

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.