Hello! My name is Rob and I was diagnosed with UC (after some diagnostic shenanigans) in 2008 at the age of 21. I live in SW Idaho, and am pursuing sustainable farming with my girlfriend as well as restoring old motorcycles (my big passion). I love crazy trips on old bikes or on foot, twisting wrenches, and playing in the dirt.
My Current Colitis Symptoms:
Currently in a long term flare that I can’t seem to shake, started SCD diet 17 days ago. Symptoms are poor in the morning and at night (frequent trips to bathroom, interrupted sleep, cramps, pain, blood), but I feel pretty good through the afternoon. It’s hot this summer!
First off I want to thank everyone on this site for sharing their stories and words of wisdom, this place is a gold mine and sanctuary! Special thanks to Adam for putting this together, you are a good good man! I wish I had found this site sooner.
I was a wildland firefighter for 5 years, starting when I was 18 in 2005. In 2008 I suddenly developed some scary symptoms (cramping, bleeding) which went downhill very quickly. The first doctor I went to (very small town, very small clinic) diagnosed me with a C. Dificile infection, and sent me home with flagyl. Two days later I was still spiraling down, and was passing nothing but blood. To the E.R. I went! And straight to the ICU! For 5 days I laid in the ICU while the doctor ran some crazy antibiotic through me that wasn’t in wide use yet ( I had to sign a waiver) in an attempt to kill the infection that I told them the other doctor had told me I had. They would dress up like Dustin Hoffman in Outbreak when they came into my room, which freaked my parents out. They didn’t run their own test for the first few days. They did run x-rays. Lots. Needless to say, I didn’t improve, and when they finally ran a scope (ugh) it took the doctor about 5 seconds to say “oh, you’ve got severe Ulcerative Colitis”. Put me straight on prednisone and referred me to a gastroenterologist. Also told me I was going to have to have my colon removed. Thanks doc! (with two upheld middle fingers) Hospital bill- $45,000. Must have been all the hospital toilet paper I used. No insurance for this ill-prepared young man of course.
I did go into remission after this affair, the Gastro put me on asacol (hooked me up with some free samples from his giant crate, thank God, 300 bucks a month for this stuff! Do they have to handcraft it in small batches? Is this artisan medication passed down through the generations?)
Back to work I went, it was summer by now, and after I was feeling good enough I jumped back on the fire crew just in time to go to Susanville, California to fight a big fire they had burning down there. After two weeks working 18 hour days, I could feel the symptoms returning, and boom, on it came again. We were on a month-long tour, so we still had two weeks before our next days off. Those were the longest, hardest, worst days of my life without question. I was very stupid and worked through my symptoms, throwing down my chainsaw every 15 or 20 minutes and jumping into the brush to pass blood. This went on to the point where I couldn’t focus, and was on the brink of passing out all day. To add to the misery, we were working the night shift, so the daylight was spent laying in my 100+ degree tent unable to sleep, hanging out in the port-a-crappers which were about 115 degrees. To this day, the sight of one makes my stomach turn. When I finally made it home, I went strai ght to my gastro who was very unhappy with me (with good reason), and sent me for blood work.
I was driving home from his office and he called me and told me to turn around and go to the hospital for a blood transfusion. The nurse emptied the first unit in my arm and we waited. Another test. Another unit. Wait. Another test. Another unit. And again, I don’t remember the final tally, but it was impressive. And scary. My gastro came to the the hospital to see me and offer some kind but very stern words which were needed. He told me I had come close to the edge, and was very lucky. It all worked out well though, he put me on Azathioprine which really really helped (steroids and asacol were having no effect). I was back into near-remission in a few weeks and Full remission a couple weeks after that.
After that summer, I had mild flares, usually a month or so at a time with mild symptoms. I had a very long stretch of remission, eating everything a young 22 year old man will eat, drinking with my fire crew (I love these guys but they’re nuts) no holds barred with no consequences. Like I said, the azathioprine worked pretty well.
In 2010 I decided to thru-hike the Pacific Crest Trail which runs from the Mexican border in S. California up through Oregon to the Canadian border in Washington. I set off at the end of April and spent my summer walking the West. No symptoms to speak of for the first 3 months, eating a not-healthy hiking diet consisting of tons of ramen and all the snickers bars in the world (thru-hiking on a budget). When I reached Washington at the end of August, symptoms sprang up, passing blood, and cramps. By the time I reached Stevens Pass up on Highway 2, I was weak, and fearing a repeat of ’08, got off the trail at around mile 2,400- 8 days shy of the Canadian border and the end of the trail. But hey no complaints, I had the time of my life.
When I got off the trail I moved to Washington with the love of my life (my girlfriend has been an unbelievably supportive and loving partner) and since the fall of 2010, I have not really been in full remission.
I think the azathioprine has lost its edge on my UC, and I wasn’t exactly giving it the best chance with my lifestyle. I’ve never really stressed about anything, but this disease itself creates stress, which I’ve been feeling more and more as it refuses remission. My gastro is recommending Remicade. I know I won’t do it. I stumbled on this site a few weeks ago, and started reading about the SCD diet (thanks a ton,
Adam!) and I’m in it now, on day 17 and still going strong. It was a very rough start for me I gotta say, I’m not a big guy, but I eat with a passion. So I felt pretty lightheaded for the first few days eating chicken soup and pureed carrots. But it’s a good challenge!
The way I see it, this is a great chance to put my disease in the passenger seat and tell it where were going, instead of gettin tossed around in the backseat just looking out the window praying there’s a bathroom coming up. I know medication plays a very important part in treating UC, it saved my life probably. I just feel that it’s not the only answer to this disease in particular. I also can’t ignore the long-term effects of these drugs I’ve taken. It is amazing to me that the doctors will hardly acknowledge the importance of diet, beyond the basic healthy eating habits. My girlfriend and I moved back to my hometown in Idaho to do some farming, so this is a perfect time to be changing my eating habits to what I’ve always known was the better way to go. It’s exciting.
I know this is a long story and I apologize, but I’ve been inspired by so many stories I’ve read on this site about folks who have had it so much worse than me and overcome and dealt with it. It’s fantastic! It’s really easy to get down and depressed about this disease, it does feel lonely and scary sometimes, but it’s the hard work and determination of lacing up your boots and going to work to change your outlook and habits that makes life more real and worthwhile. My guts might be out of whack, but I’m gonna wrench on my motorcycles, grow some kick-ass veggies for the market, love my lady and keep keepin’ on!
Thanks for reading, I am glad to be part of such a great community!
Ever Onward, Kick UC’s Ass!!!!!!
Where I’d Like to be in 1 year:
In 1 year I will be rockin’ the world of remission! With my colon! I’m gonna stick to the SCD and hopefully diet will replace azathioprine as my method of maintenence. Also- selling produce at local farmers market, and selling a couple restored vintage motorcycles as well. Yep!
Started out- Prednisone with a lot of Asacol (don’t remember the amounts). Not much luck. Prednisone made me ANGRY!! Then sad. Then laugh. Then mad. Then shake and shake. Asacol made me poor. I won’t rant about health insurance issues, but Asacol is expensive. And I remember seeing them all nice and intact and expensive… in the toilet. It probably works for some, but damn, I lost a lot of money to those little bastards. Prednisone induced first remission (maybe).
Currently (2008-present)- Azathioprine 150 mg/day. Have had no side effects, it kept me in a long period of remission (maybe), and is 60 bucks a month. They say it increases risk of some cancers, especially when taken by young men. Cool. But all drugs have risks I suppose. Is not currently helping ongoing flare. I would actually recommend trying Azathioprine if you started with the typical Prednisone/Asacol cocktail, I read a lot of people going from those straight up to remicade, I think Aza. would be worth a try in between, just a personal thought since it worked really well for me.
written by Firefighter Rob
submitted in the colitis venting area