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Living with Crohn’s Disease: My Story, Chapter 2

I remained fairly symptom free for the next couple years. I always had canker sores, but I didn’t know those were symptoms of anything. In the summer of 2000, a good friend of mine and I were shopping for an apartment. She decided that she wanted to go to school in Utah since she had some family there and she asked me if I wanted to go. Um, yes please! I mean it’s not like I had college holding me back… (don’t judge me). Off to Provo we went. Got an apartment at The Glenwood (of course back then we called it “The GlenHOOD” – if you’ve been there, you know what I’m sayin’) near BYU campus with 4 other girls that we didn’t know AT ALL. Yes, you heard that correctly. 6 girls, 1 apartment and we had the time of our lives. I met some lifelong friends there whom I still keep in touch with and love very dearly. I also met the boy I’d marry in that apartment complex (more on the boy later). Sadly though, I started showing signs and symptoms and I wasn’t there for very long. We moved there in late August, and by Christmas time – my body almost couldn’t take anymore. I had gotten pretty severe canker sores and it was affecting my attendance at work. I mean, my late-night dates with the boy were probably affecting my attendance too, but that’s not important. My weight was dropping in a big way, despite the fact that I’ve always liked to eat. I didn’t even realize how bad I looked until I went home for Christmas break. I think up until that point, my parents just assumed I was being irresponsible (which I most definitely was) but when they saw me, they realized something else was going on. It was at that point, they told me I needed to move home because we needed to get me healthy and figure out what the deal was. When I moved to Utah at 19, I was 5’5″ and weighed 118 lbs. When I came home, I weighed 106 lbs. I lost 12 lbs in 4 months, which was a big loss for my already small frame.

I got an apartment in Washington near my parents so I could be on my own (mostly because I was too stupid to respect my parents enough to live with them – you know how teenagers are.) and got a job doing data entry at a mortgage company close by. I started getting these occasional stomach cramps that would come on very suddenly and be extremely painful. I mean, they would like knock me to the ground and I couldn’t move for sometimes 30 minutes to an hour. This one time, I bumped my arm at work and it literally made me pass out. There were just some weird things going on that we couldn’t really explain so we started actively searching for an answer. It began with Dr. Johnson. This man is literally famous at our house. Not because he diagnosed me with Crohn’s Disease. And not even because it took him a full 12 months to do it. Get ready for how shallow and inappropriate we are right now… are you ready? Dr. Johnson is famous at our house because of his comb-over and the hilarious way he puts an L in all his words. Yep, it’s true. We went through tons of testing. And when I say “testing” please don’t misunderstand me… Sure, there were blood tests and X-Rays, and such, but those are easy. No, the testing I’m talking about…the testing that is blog-worthy? That stuff all happens “downstairs” if you get my not-so-subtle drift. That moment when the doctor says, well it’s basically a camera, that goes up your colon so we can see the insides of your intestines. “Uh, I’m sorry… did he say “camera?” Do they make Nikons for the bum?? I feel like I just heard the doc say, “Yep, there’s an app for that.” Scopes, Colonoscopies, Endoscopies… The list went on and on and they had no idea what was wrong with me. They tossed around the idea of Behcet’s Syndrome, which we learned, symptomatically is pretty similar to Crohn’s Disease, but when they finally connected my canker sores to inflammation in my colon – they were able to diagnose me correctly. A pretty serious disease. At the time, it was even a little more uncommon than it is now…so it was a pretty big deal. Anytime someone gets diagnosed with a Chronic Illness, it should be taken seriously, right? RIGHT. But not in my house. My mom and I parked the car in the parking garage and as we’re walking in to Dr. Johnson’s office, she says, “Have you ever noticed the way Dr. Johnson puts an L in all the wrong places?” I laughed, and I said – “No! How have I not noticed that?? You know what I have noticed though? The way he brushes his comb-over when he talks to you. And then he ever so gently, tucks it behind his ear.” So by this time, we’re both dying laughing and have committed to pay attention to his….we’ll call them “quirks”. BIG MISTAKE. Of course, we didn’t know at the time that he was going to diagnose me with a serious, semi-rare, chronic condition. But I don’t think it would have mattered… because once he came in and started talking about how “Crohn’s Disease has been known to cauLse nauLsea” while he was combing his sparse strands of hair over across his forehead and tucking it – we were just done. Our small little giggles turned into full-blown laughter. Like roll-on-the-floor, can’t catch your breath, gonna remember this always kind of laughter. That poor man has probably never been so confused in all his life. Here he is talking to 2 grown women – a MOTHER and her DAUGHTER no less, about this disease she will fight for the rest of her life, and they are both flat out LAUGHING about who knows what?? We literally had to ask him to give us a couple minutes to pull ourselves together. He left the room and we rolled hysterically for a bit… calmed ourselves down and tried to be serious when he came back in. But I swear if he didn’t come right back in and do it all again!! I could see Mom’s shoulders start to shake next to me and I knew we were going right back down that road. We never could pull ourselves together. We laughed all the way through that diagnosis and he must have thought we were absolutely certifiable.

You know what’s amazing though? Whenever I look back on the day my life changed because of a disease, I have fond memories. I think it’s still the hardest I’ve ever laughed – and I feel so grateful for that little blessing Heavenly Father sent our way. It was a tiny ray of light. What should have been a very difficult moment in our lives, was turned into one of our favorite memories just through laughter. I’m so glad He sent us what can only be described as a mildly vain, odd-speaking Specialist, to deliver the news.

But when the laughter finally stopped, there it was: 20 years old – Crohn’s Disease. What the heck do I do now? Have you been diagnosed? What were your thoughts?

** Leah **

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7 comments… add one
  • Triston October 18, 2014, 3:02 pm

    I love this story so much! It was hilarious.

  • Kayla September 8, 2016, 5:33 pm

    I stumbled upon your blog doing a google search. I was reading the post about your ostomy because it looks like I will have to have my colon removed soon and I am nervous about the bag. Funny thing when you mentioned relief society! I guess we have more than just the Crohns in common ;) I was diagnosed with Crohns when I was 12 and it took them a year to figure out what was wrong. I too would be curled up on the floor for long periods of time. I also missed a year of school at that time. You are right, people tell us we must be so great and brave for going through this but I always fell like I’m only brave by necessity. You don’t have a choice. You have to deal with it the best you can, and while it doesn’t get better, you do learn to cope. I’m excited to continue reading. I am 25 now and facing my first surgery (for Crohns at least). I’m not scared of the surgery, just of the bag…. I’m scared that I will lose my job and that it will leak a lot etc. Anyway, so far your blog has been great!

    • Leah Sannar September 8, 2016, 9:25 pm

      Wow Kayla, we do have a lot in common! Thanks so much for reading and I’m really glad it’s helping you in some small way. Don’t be afraid of the bag. I know that probably falls on deaf ears because when you’re in the situation, it’s really hard not to be afraid. I know, I’ve been there. Just think of a funny name for it so it’s hard to take it too seriously. :o) But really, just keep in mind all the benefits you’ll get from it. MY bag very RARELY leaks, and when it does, it’s usually my fault. Like if I wore it too long without changing it… There are days where I know that I’m pushing my luck. If I don’t do that, then it would almost never leak. I live a completely normal life, and I know you will too. Keep me posted, I’d love to know how you’re adjusting once you have the surgery. Good luck to you! xoxo

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