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13-Year Survivor

Fair Warning: I'm a long-winded story-teller. You may want to grab some coffee and get comfortable before you start reading.

It's a long story how I got to where I am. Probably most of the members in this forum could say the same. I was first diagnosed with Crohn's Disease when I was 18, but my story goes back further than that. Anyway, I'll start at the beginning.

I first started having digestive problems when I was 7 years old. As a boy, I'd always been tall and lanky but I'd been getting taller and lankier without gaining any weight for a year or two. I'd also been sick on a more and more frequent basis. After a battery of medical testing that ended in a skin test for allergic reactions, my doctors concluded I had severe food allergies. Apparently they hadn't accounted for a small child having sensitive skin that would react to nearly anything. They also hadn't expected my body to have enough resistance to sedation to wake up in a panic during an endoscopy with a camera tube down my throat. They really hadn't expected 50-lb child to throw off two full-grown adults in an effort to remove the tube, either. Five nurses later, the test results were inconclusive.

It didn't take long to realize the allergy diagnosis was a cop-out. After a few months on a restricted diet, I was just as ill as before and wasn't gaining any weight. We went for broke and starting re-introducing everything back into my diet. It didn't make any noteworthy difference.

By high school, I'd fallen well off my previous growth curves for height and weight and had some obvious problems with delayed development. My digestive problems continued and I started having flare-up episodes that we didn't recognize as such until later. Again, my doctors didn't offer much help. They put me on antacids and said I was a late-bloomer. I was nearly 17 years old when my voice started dropping and I started growing appreciably. At 5'7", I wasn't exactly a small person, but having both parents over 6' and siblings at 6'4" and 6'6" something was definitely off.

At 18 years old, about a month before graduation, I suffered an undiagnosed bowel perforation and became seriously ill. Over a 2-week period, I frequently spiked a fever up to 104 degrees. My doctors went rounds over whether or not it was appendicitis. Eventually, they decided it wasn't, but that it might be Crohn's Disease, though they weren't sure. After my senior choir concert, I collapsed and was rushed to the hospital with a fever of 107. At the hospital, they discovered the two-week-old perforation and a serious infection. In one of my lucid moments, I remember overhearing a surgeon discussion my prognosis with my parents. Hearing my own chances of survival scared the living hell out of me. Then I blacked out again. Emergency surgery removed the perforated portion of my bowel and cleaned out the infection. After a week in the hospital, I went home looking like a sack of bones. Another week later, I walked at graduation under heavy pain meds.

After recovering from the surgery, I felt stronger than ever and my appetite would have made an elephant blush. In my first year of college, I grew to full height and packed on almost 80 pounds. Even then, I was still known as the tall, skinny guy. It felt good.

Three years later, jobs were scarce enough, much less ones with medical coverage. I couldn't afford a doctor and community clinics wouldn't treat special diseases. Ironically, I was refused government aid on the basis that I was too healthy and made too much money at my part-time job. (Yes, I'm still a bit jaded about that.) So, for the next seven years, I worked whatever jobs I could get and did the best I could to maintain my declining health.

At 28 years old, I found a job with health coverage. At that stage, I had been sick for some time but working through it anyway. After an initial visit and blood labs with my family doctor, I was hospitalized for severe anemia. Further tests showed active inflammation and bleeding throughout my colon rectum. After a week in the hospital, I was sent home under heavy steroids, immunosuppressants, and anti-inflammatory meds. After tapering off the steroids, my GI doctor kept me on the heaviest anti-inflammation and immunosuppression treatments he could give me. Personally, I pulled out all the stops in my diet and lifestyle to recover from my ongoing illness.

Two years later--just over a year ago, now--I was losing weight and in a lot of pain. A CT scan and colonoscopy showed multiple obstructions and massive scarring in my colon and rectum. My surgeon informed me that even they could reduce the inflammation and remove the scar tissue and blockages, I wouldn't have enough healthy flesh left to be functional. Without an operation, he said, the pain would increase and so would the risk of infection and even cancer. I'd already tried every holistic treatment I'd heard of and the strongest drug therapies I could get, so I told the surgeon to go through with the proctocolectomy. I went into surgery kicking and screaming and woke up with a little plastic bag attached at my waistline. When I could stand, I counted my ribs in the mirror then turned around and counted my vertebrae. For the second time, I went home looking like something from a horror film.

It's been a year since then. My strength is back and I've filled in my hollow spots and then some, just for good measure. For the first time in my life, I'm actually watching my weight to make sure I don't put on too much. I didn't think I'd ever get used to handling my ostomy pouch, but it's just another typical routine now, like brushing my teeth. I asked my surgeon what kind of limitations wearing the pouch would put on my activities. He smirked and answered, "No kickboxing. Other than that, you can do as you like." So far, with a little safety equipment and common sense, that has held true. I haven't done any bungee jumping or deep-sea diving yet, but I'm back into basketball and football--that's the good old American kind--and I haven't lost a step.

Now if you're still reading, congratulations. You have a strong, healthy attention span. Also, thank you. Telling my story helps more than you know. Or maybe you do. Maybe I'll find your story in this forum and be as encouraged as I hope you are after reading mine. Either way, thank you for reading.
 
Hi and welcome wow you really have been through it haven't you glad your still here. I too had suffered with my bowel not as long as you mind but I had suffered for 4 months before I actually done anything about it thinking it would go away on its own. Never just got worse and worse I got Imodium from my doctor hoping that would help. It didn't two weeks later I got admitted to hospital with severe pains in my stomach and diarrheaha the pain was so bad I could hardly move. I got put on pentasa, really strong prednisone steroids, 1 infliximab infusion nothing worked they tried everything. I too had temperatures and heart was beating too fast all the time I was there. My stomach swelled up like I was 9 months pregnant also. In the end they had to do an emergency life saving operation on me to remove my large bowel. It could of burst at any time which would of killed me. The surgeons told my parents it was too save my life I didn't know I was too upset as it was without being told that. I've been told it was the worst he had ever seen it wasn't doing me any favours what so ever. I've been diagnosed with indeterminate colitis which means they don't know whether I have Crohn's disease or ulcerative colitis. I was in hospital for 2 days short of 6 weeks. Hope your ok
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum!

I'm sorry to hear what all you've been through, but very glad you're feeling well now. You might want to check out the stoma subforum, here.

I hope things continue to go well for you!
 

David

Co-Founder
Location
Naples, Florida
Hi jascott and welcome to the community! Thank you so much for sharing your story. That's amazing that you're back to playing football after all of that, good for you :)

Are you on any maintenance medications or anything along those lines?

Again, welcome!
 
Hi and welcome. you are sure one tough cookie, I am glad that things are looking up for you. I am also glad that you are not letting your health problems stop you life, im a huge football fan.

Your fair warning made me laugh thanks I needed that. Glad you found your way to us and look forward to hearing from you more. Don't worry its ok to be a little long winded we will forgive you. :wink:
 
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