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My Incredibly Stupid Path to Crohn's Diagnosis

Hi, I'm Charlie and I was diagnosed with Crohn's in July 2014. I'd like to share my story because I think it best represents what not to do when someone believes they may have IBD/ IBD symptoms, or any other disease for that matter.

TL;DR Lessons are at bottom

Although I didn't know it, I had been experiencing Crohn's symptoms for at least 8 years before my diagnosis. Going back to middle school I had always complained of stomach aches and on days when I was having flare ups my parents would have to literally drag me to school. Neither they, nor the school nurses ever believed I was having stomach issues that often and just thought I was trying to get out of school. Ironically I actually liked school, just not when I felt like my stomach was going to explode the whole time (at the time I lived in El Paso and grew up eating spicy mexican food and jalapenos out of the jar... to say I had constant flare ups would be an understatement.)

Eventually I got where I could ignore the symptoms or just man up and "hold it in" for the excruciating hours I was in class.(As my GI has pointed out, this was a very bad idea) Other than days when I didn't have flare ups, high school was normal for me, I played football and hung out with my friends, so I just continued to ignore the symptoms. I never wanted to bring it up with my parents because they hadn't believed me before, and I felt embarrassed to talk to a stranger about it. Eventually I had a flare up so bad that I began seeing quite a bit of blood and mucus in my stool and self diagnosed myself on WebMD with Crohns, of course when I brought this up not only did my parents not believe me, but the family doctor we saw essentially accused me of being a hypochondriac because I had no family history of Crohn's or IBD.

After being told you're a liar enough, you start to believe it. So yet again I ignored my symptoms for three more years until my sophomore year of college. Since high school I had been lifting weights and monitoring my diet, so my symptoms were being regulated to a point. That was until one fateful night out in Ft. Worth (I was a Navy Brat and we'd moved around a lot before and since El Paso at this point) at a very suspect Sushi restaurant. I had a new girlfriend from CA and she'd been dying to get me to eat raw fish for some reason. That spicy tuna roll left me constipated for the next three days and afterwards I began crapping blood, not blood in my stool, just blood by itself.

That started to freak me out, but I was literally a few days away from my childhood dream of becoming a pilot. I'd always looked up to my Dad who was a Navy pilot for 12 years and I had decided to major in Aviation and join the Air Force. Being the stubborn testosterone filled 20 year old that I was (and still am) I decided to just keep quiet and finish out my last two solo cross county flights before I took my private pilot check ride. So early in the morning on my third straight day of blood-stool I took off on a flight to Abilene, then Waco and back to Ft. Worth Meacham. Luckily despite the blood loss I managed the flight just fine. I have no idea how I didn't crap myself during that 5 hour flight, blood is an incredible laxative. Later that night, just a few hours after landing a plane I'd been flying solo, I passed out from blood loss on the bathroom floor. Taking off that morning is by far the stupidest thing I've done in my life.

When I finally woke up I finally made a good decision and got a ride to the E.R. Once I was in the exam room the doctor informed me that he had to check how bad my bleeding was and I thought "OK I guess I'll have to drop trow for this guy and let him look" but then he put on his glove and got some lubricant. It was then that I realized this doctor, who was about 6'4" 250lbs, had the largest hands I'd ever seen :ywow: Let's just say it wasn't pleasant and move on. After a CT scan the GI wasn't entirely sure what was wrong other than massive intestinal swelling. Since I was young and had no family history of IBD (and didn't mention my previous intestinal problems) the GI chalked it up to an infection.

I'd never stayed at a hospital before, and they aren't kidding when they say no one goes there for sleep. #1 I felt miserable from the combination of the steroids, constipation and all liquid diet. #2 The nurses come stab you every few hours to take your blood. #3 I was on the ICU ward due to blood loss and my next door neighbor had bad Alzheimers. The second the nurse left his room he would scream "Hello!!!" because he was lost and scared... one of the saddest things I've ever seen. At least my nurse was extremely hot, but on the downside she was having to measure/empty my urine canister every couple of hours... so yeah, that's a little emasculating. After two weeks on an all liquid diet and a ton of steroids I was back out of the hospital.

For anyone whose been on the all liquid diet, I believe you would agree that solid food never tasted so good. Obviously the doctors advise you to stick to soft things like mashed potatos for a while, but yet again I'm an invincible 20 year old male, so my first night out I go to the movies (Lucy was so terrible not even Scar Jo and Morgan Freeman could save it) and have a nice big greasy five guys burger with a huge side of fries... At least the nurse laughed when I was admitted the next day and told her I just wanted to see her again.

This time they did the full battery of tests, barium x-ray (that stuff tastes like rubber cement.. and has the consistency too), more blood tests and finally the gallon of Go Lytley laxative chug before my colonoscopy. I call BS on them saying that's pineapple flavored, it was more like wax-chalk with a massive amount of corn syrup flavored.

After my diagnosis, I actually felt a little relieved and quite vindicated. Crohn's isn't fun, but so far I've been able to manage it quite well with diet and Humira. Some of the side affects of the medication I take scare me (IDC how low a percentage they are) and Crohn's did DQ me from the Air Force, but some things are out of your control. You have to focus on what you can control instead. To recap, and for people who don't want to read my rant/catharsis

TL;DR
If You have IBD or any other disease symptoms, tell someone, tell your doctor. You know your body better than anyone, get yourself checked out.

Don't fly while crapping blood...

If you have rectal bleeding request the smallest doctor on call at the E.R. Size does matter gentlemen.

Don't eat a big ole' cheeseburger right after being put on an all liquid diet, follow Doctor's orders... even if the Nurse is really, really hot.

P.S. Sorry to the x-ray technicians who took my barium x-ray.... After a week of constipation I destroyed the toilet in that room, and it will never be the same.
 
Welcome to the forum and thank you for sharing your story.
It's good to see after everything you have been through you still have a good sense of humour, at times it can be hard to get through and I really think seeing the funny side helps.
I understand with the side affects they are scary but I find if a medication starts to make me feel better its easier to push that to the back of my mind. I hope the humira continues to work for you and crohns stays in remission for a long time.
 
Thanks, Kayleigh. I agree that it's better to not focus on the possible side affects of the medication. If you dwell on it, it will seriously wonk you out.

I'm glad you got the humor. When I was first diagnosed I was scared as hell and confused, just like many of the people who come here. I actually came to this forum and read about a few people's experience and to be honest they were so gloomy that it actually made me feel much worse. By that I don't mean to put anyone down who needs to vent or just share a story that doesn't have a silver lining, but I believe that if you put it in the right perspective, the disease becomes a little less scary. Hopefully someone worried about IBD sees my post and understand that while this is a serious condition, you don't have to give up or give in yet and maybe you can laugh with me at some of the ridiculousness you've been going through.

As a side note I remembered a couple of funny/interesting moments I left out.

When I returned to the hospital after my night out on the town, I was in extreme pain. They initially thought I had appendicitis and the staff in the E.R. waiting room didn't seem to be in any hurry despite my pain. While I was sitting in that white, fluorescent-lit room the pain was so great and I was so scared that my fingernails were turning blue from hyperventilation. I fly airplanes, I jump out of airplanes and off cliffs. Not a lot scares me, but that intense weird pain made me think I was about to eat it. I started vomiting profusely and while my mom helped me with the little tube shaped barf baggies in the room a large proud African-American woman decided she'd seen enough. She walked up to the attendant's desk and in the most bad-a angry black momma voice you can imagine complete with sassy finger wagging action she said, "This boy is gonna die on this floor if you don't get off your butt and get him a doctor and I ain't watchin' that today. If you don't hurry up you're gonna see me get real mad and you don't want that". Just like that, except with more expletives thrown in. Two minutes later I was being carted back and finally being seen. From the bottom of my heart, thank you Sassy ER Room Hulk Lady.

Also, after weeks of listening to "Hello!!!" guy throughout the night, I got really used to the noise and had a hard time sleeping when I got home, so I threw Lionel Richie's "Hello" on my i-pod and played it throughout the night.
 
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You did almost what I did. I guess young guys in there prime are not the ideal sick patients haha. But its good to know your doing a lot better before things could get worse.
 
Welcome to the forum. Thanks for sharing your story. Glad humira is working and I hope you stay in remission FOREVER.
 
Welcome Dank, and thanks for the (much needed) laughs!

I, too, ignored my symptoms as they progressed over the years. Even as a young kid, I always struggled with stomach aches, the big "D" and/or "C," and was told I had IBS and deal with it. No meds, etc. In high school, I developed an "ulcer" that was never tested for- I now know that I was having flares. Long story short, last year, after four days of passing nothing but blood and passing out with seizures, I got my diagnosis.

*Sigh* Did you ever think your life would bring you to the point of openly discussing "bathroom issues" in a normal manner? Not the plan I signed up for, but hey- I can positively say one thing, sh!t happens!
 
Welcome to the forum Dank!

I know how you feel as far as being made to feel like a liar and it's all in your head. Been fighting with Doctors now for 2 years+ and finally got an answer on Friday. Glad you have answers, hoping that you can get into remission and stay in remission :D
 
Also, after weeks of listening to "Hello!!!" guy throughout the night, I got really used to the noise and had a hard time sleeping when I got home, so I threw Lionel Richie's "Hello" on my i-pod and played it throughout the night.[/QUOTE]

Oh, how I needed that laugh.
 
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