Living with Crohn’s Disease


People tell me all the time, “I don’t know how you got through that – I could never do it.” To say I find that amusing is an understatement. It implies that because of some heroic effort or superhuman abilities – I was better equipped than the next person to withstand the pain and suffering that came along with a Crohn’s Disease diagnosis, Non-Hodgkins Lymphoma, a Colostomy and a couple surgeries. But that’s just not true. And while I do appreciate their kind and sympathetic words, there’s something they need to understand: I’m really not special. I don’t have superhero powers, or even an iron will. What they see as an above average stamina of sorts, is actually just me, a very regular girl, coping with the hand I was dealt. I can’t remember ever laying in bed or in the hospital, thinking: “Dude, I totally got this. Is that all you got? Cuz this is easy!” In fact, I can guarantee you, there wasn’t ever a thought in my head that was even remotely close to that. “They sounded a lot more like this: “When is the nurse coming back with the freaking painkillers?!” and “Are you kidding me with ANOTHER pic line??” or “I swear, if that nurse wakes me up at 3am again with full lights on overhead JUST to prick my finger, I might kill her.” I wasn’t a happy go lucky – accept the fact that I’m spending 14 months in the hospital with a smile – everybody should have Crohn’s Disease because it’s fun – kind of person. I was miserable. It was horrible, and painful and LONG and life-changing. But you know what? I did it…I made it through. And I’m a better person for it. We’re all dealt a hand in life and we don’t have any idea what it might hold in store for us. I have seen many wonderful people deal with some pretty rotten cards and my heart breaks for them. Someone might think mine was particularly difficult, while I look at it as mild compared to what others go through. For me, getting through it was all about 3 things:

1. Perspective: Our struggles feel really hard until we step outside ourselves and take a look around at what others are dealing with. By allowing yourself to see that everybody has their cross to bear, your perspective will change and you will begin to see your trials in a new light. It might not make them easier, but I can guarantee you won’t feel so alone.

2.Faith in a Higher Purpose: As my illness dragged on and on, I can literally remember laying in my hospital bed with a shaky hand, trying to write in a journal. Constantly, I thought: “There is some lesson I am supposed to learn from this…and the sooner I can figure it out, the sooner I can get the heck out of here!” Now, obviously I don’t necessarily think that was true. I don’t think Heavenly Father held me captive in a hospital bed in order to teach me something. But the principle was correct. I do believe that we, as God’s children, are here to be tested. We are here to be tested, pushed, tried, and to prove that we can be the best version of ourselves amidst struggles of all shapes and sizes.

3. Keeping your eye on the prize: What’s your prize? What’s the end game? What is it all for? If you are going through trials and you don’t know the answer to these questions, I suggest that’s where you start. Maybe you can’t answer all of them right now, but that’s where you should be headed. If you can find the light at the end of the tunnel – if you can visualize where you’ll be, or where you WANT to be when it’s over… then you might find your struggles just a little bit easier. Aim for something, even if it’s just to make it out alive. Maybe it’s to have children someday, maybe it’s to become a partner again to your spouse, maybe it’s even to get back to a job you love…. Whatever it is – anytime you are spending energy thinking about a goal – that’s time you’re NOT spending wallowing in misery.

This is my story:

I was diagnosed with Crohn’s Disease when I was 20 years old.  That was almost exactly 12 years ago and it’s been quite a rollercoaster ride since then. But looking back, we know that I was showing symptoms much earlier than that. As a child and through most of my 20’s, I struggled with really, really bad canker sores. And I’m not talking about those little swollen taste buds. For those of you who have had my kind of canker sores, you understand my impulse to smack people who complain about those tiny little swollen taste buds. Those might be canker sores, I don’t know. But it doesn’t look like any canker sore I’ve ever had. Mine were like open ulcers in my mouth. Big ones. They made it painful to talk and almost impossible to eat. It was miserable. But when you deal with something for as long as I dealt with those, you sort of become accustomed… and it was just kinda the way life was. You could even say I got used to it. And there were occasional perks… I mean there’s not a whole lot funnier than the look on someone’s face when you pull your bottom lip down to expose a giant ulcer. And believe me when I tell ya, however painful they think it looks… it’s way worse than that. I promise. Canker sores kinda ran in the family though, so it’s not like anybody ever thought it was serious or that we should have it checked out. So life went about as usual and I just dealt with them.

Fast forward to my senior year in high school. I graduated Class of ’99 with a bright future and the world at my fingertips, blah, blah, blah -as the cliché says… So you’re probably thinking I went to college like a good girl and got a degree right? Wrong. College was so not on my radar. I really wish it had been, but I’m embarrassed to admit that I never was a great student. School was much more of a social event for me than it was a stepping stone to college. I was taking this English class with all my friends where we mostly fooled around and didn’t do much homework… It was senior year after all and it was getting on towards the end of our high school careers. I remember this class especially because of the awesome friends that were there with me. When I had my first “event” with Crohn’s Disease, it was all those friends who made a special call from the classroom phone to check on me and make sure I was okay. A couple days prior, I had been experiencing some pretty serious discomfort in my “female region” and I couldn’t get a good look at it no matter how hard I tried, or what angle I tried from. Keep in mind that this was pre-diagnosis, and I had never been even remotely sexually active… we’re talking NO EXPERIENCE with boys (except a kiss, I had kissed exactly two boys), so I had no idea what could possibly be going on. My mom comes in and I ask her to take a look and she’s surprised to see the size of the open sore right there on the vaginal tissue. So we head to the ER. Wait FOREVER. I’m a 17 year old girl who is absolutely mortified at what is happening, but still have to find the courage to tell the doctor what is going on, because he doesn’t want to hear it from Mom. By this time, I’m in a hospital gown – feet in stirrups and he’s poking and prodding. I mean, I know he doesn’t actually HAVE a vagina with a big open sore on it, so he can’t actually imagine how badly that hurt… but I’m assuming he has testicles… so I feel like he should at least understand a LITTLE about the sensitivity going on here. I’m SCREAMING and CRYING and he is literally annoyed by my “drama.” Then this peach of a doctor (because I can’t say what I actually want to call him) with dreamy bedside manners, asks me when I was last sexually active. “No, I’m a virgin – I’ve never been sexually active. I mean – I’ve literally never been touched at all down there by ANYONE.” I wish I could remember this doctor’s name because I’d love to hunt him down and kick him in the crotch. But he turns to my mom and asks her to leave the room so we can talk in private. So she does. “NOW, when was the last time you were sexually active? Your mom can’t hear you, so you can tell me the truth.” Needless to say, I’m bawling by this point. This guy does NOT believe me. So he’s scribbling in his chart and I can only imagine that he’s making notes about what a liar I am and how he thinks it’s probably some kind of STD and we’re dismissed with some Vicodin and a doctor’s note to miss school for a day or two. End of story. Trust me, this doctor did not make any friends that day.

Once we were home from the ER, I go to bed with instructions to lay around in the morning and take 2 Vicodin with my breakfast. This was my first experience with narcotics so I was a bit nervous. So I decided to be cautious and just take one. It was a good thing I did, because very shortly afterwards, I could feel my arms and legs tingling and going numb, I was starting to blackout and I started throwing up everything I had just eaten. I called my mom hysterically freaking out because I had never experienced anything like that before in my life. I assumed it was an allergic reaction and from that point forward – NO VICODIN for Leah. I was actually later told that it was not an allergic reaction, but I didn’t care. Who cares what it’s called, I still don’t want it. So later that day, after I finally recovered from my “non-allergic reaction” I got that phone call I mentioned from all my friends in English class. Of course, they all think I’m home with “Strep Throat.” They don’t have a clue that I’m at home sitting on a donut because my you-know-what hurts so bad I can’t even sit down… because yeah – I’m 17. There is no way in HELL I’m telling everybody that I have some weird sore on my hoo-ha. NO. THANK. YOU. Of course, if any of them is reading my blog right now, I guess the secret is out. I guess there’s really no chance of me getting that Homecoming Crown now. It’s still embarrassing to tell this story, but I knew that going in. I mean you gotta just commit to the moment. There’s no way to talk about Crohn’s Disease without addressing embarrassing topics… I mean it affects the COLON. Hello?! It’s GOING to happen. You’re GOING to hear about bloody diarrhea and rectal fistulas. And I might have to tell you about the time I didn’t make it to the bathroom… Trust me, it’s going to hurt me a lot more than it hurts you. I have a feeling we’re gonna be real tight by the time you finish hearing what I have to say. Looking forward to it? I know I am!

** Leah **

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