From Fireline to IV line. UC is a Jerk.

Firefighter Rob looking out into the darknessIntroduction:

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!

My Story:

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?)

Rob hiking in the snow

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.

Rob with his motorcycles

Rob going on motorcycle ride to Olympic National Park

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!

Colitis Medications:

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




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7 Responses to From Fireline to IV line. UC is a Jerk.

  1. Gina August 24, 2012 at 5:27 am #

    Hi Rob,

    I found your story inspiring. You are one brave guy, toughing out an obviously extremely acute UC flare to fight fires. Gotta take care of yourself though. I was diagnosed in 2006 or 7, not sure which and put on Asacol. Doc was a colonoscopy guy and had no idea how to treat me, nor was he interested in doing so. There are all kinds of Gi docs, some just want to make tons of money doing scopes and he was one of them. After another stint with one who tried to murder his colleague and went to jail, (no kidding) I finally found someone who would listen to me and realized how sick I was. She put me on Imuran (azathioprine), canasa and upped my dosage of Asacol to get rid of the flare. It worked fine until spring of this year when I started having flare symptoms, and felt depressed and hopeless. My magical combo had ceased to work. So about a month ago, I went to see her and told her no more imuran, since it was not working anymore. Why take a dangerous drug just for the hell of it. I told her I was going to take an antihistamine, fish oil plus my asacol and restart the canasa which is also so expensive, I only take for emergencies. She said OK but take VSL too. So I started that and started to feel better. Not perfect, but better, Still watery crap and urgency. Embarrassing runs to whatever bathroom was in the vicinity whenever I was out of the house. Yuck. So long story short, I called the doc the other day and she said to restart the imuran. Lo and behold, it started to work again, just as it had when I first started. I just needed a drug holiday. So far so good. My husband and I will be visiting the national parks in 3 weeks and I hope to be symptom free. So don’t give up on the azathioprine. Just take a break from it.

    Oh and one more thing, when I can’t afford the asacol, I buy it from a Canadian pharmacy. I can get a generic form for about 49 bucks for 100 tablets. When asacol finally loses its patent in 2013, US manufacturers will be able to make generics of it. Hopefully.
    Stay strong, eat well and stay on this site. Isn’t it terrific? So glad Adam is doing this.

    • Firefighter Rob
      Rob August 28, 2012 at 2:46 pm #

      Hi Gina!
      Wow, your early doctor experiences do not sound pleasant! It’s tough to have a situation like your health complicated by those who you’re trusting to help you get better! I’m glad that your break from azathioprine seems to be making it effective again, that’s great! I am currently tapering down my dosage of it while I’m eating the SCD diet, and so far so good, I’ve been on it for about a month and have cut my azathioprine down to 100mg a day, and I feel like I’m healing, which as you know is such a fantastic feeling! My hope is to be able to control my symptoms with SCD, probiotics, etc., but if I have a bad flare, I will probably try the azathioprine as it put me in remission so fast a few years ago.
      I hope you keep feeling better and better, and hope you enjoy your trip to the parks, that’ll be amazing!
      All the best-
      Rob

  2. David August 24, 2012 at 11:47 am #

    Hey Rob! My name is Dave and I live in Meridian, ID. I was just diagnosed with UC in July. Been struggling a bunch with it. My Dr wants to start me on Imuran next week, but I’m scarred to death about the side effects I keep reading about. How have you done on the drug? I would love to talk in person sometime, as I haven’t met another person here in Idaho with UC. On a side note,I just finished rebuilding a ’76 CB750.

    Cheers

    • Firefighter Rob
      Rob August 28, 2012 at 3:03 pm #

      Hey Dave-
      I’m not far from Meridian, I’m outside of Marsing on the Snake river! I’m sorry to hear about the diagnosis and what I’m sure have been very tough days. As far as the Imuran goes, it has been a good drug in my history. I wasn’t responding to prednisone and asacol, and the azathioprine (imuran) really did me good. I went into a full remission not long after starting on it. I would say the pros outweigh the cons trying it, the doctor will monitor you closely at the start with blood tests to make sure your system responds positively to it, so if your body doesn’t take it well, the tests show it quickly and you can stop taking it before things get bad.

      I have had no side effects to speak of after taking it for 4 years, my blood work has stayed level. I have experienced flares since then, so I won’t say it’s a miracle drug or anything, but if you’re in a flare, it may be worth it to use Imuran to get yourself healthy again. I am tapering off of my dosage while I am doing the SCD diet, and am having good results so far. But it’s been a long hard road.

      So in my opinion, give it a try, it helped me for a good while.

      A 750 eh? That’s awesome! I got pulled into the CB’s pretty good, I spent my time in Seattle working at North City Vintage Honda if you’ve ever heard of em, if not, you should check ’em out! (*plug* hehe) I’d love to get a stock 750, I’m riding a 78 cb550 with a 650 motor in it right now! We’ll have to meet up and talk sometime, maybe go for a ride! If you want you can email me at westernvistas@gmail.com

      Talk to you soon-
      Rob

  3. Steve August 24, 2012 at 11:59 am #

    Hey Rob…nice to hear your stories as ours seem very similar, only I was not out there fighting wildfires. Awesome work that must be but a total nightmare when experiencing UC symptoms. I too had strange looks from the doctors when they ran some blood tests and saw my red blood cell count was dangerously low. They ran it again to be sure it wasn’t a fluke, there by taking more blood I really needed…they were expecting me to pass out any minute, mean while my body had gotten use to the low levels of oxygen.

    Ironically, I went into the ER for a totally unrelated thing that the doctors had no answer for(pain and swelling in both of my legs), as soon as they ruled out a clot(they wanted to rule out broken bones with an x-ray but I knew that was impossible since pain started shifting legs while I was waiting to be seen) and noticed the blood results, they no longer cared that I could barely walk and if I did, it was excruciating. Having UC and not being able to walk really complicates things if you know what I mean. They wanted to admit me and get me started on a transfusion but I refused since I was without insurance too. I didn’t feel any worse for the wear and they didn’t care about the pain I went for in the first place.

    Long story short, my doctor talked me into getting an infusion a few days later because I finally started feeling the fatigue everyone said I should have been feeling all along—light-headed, like I might pass out just standing up, etc. But I refused to miss work for it which made the nurses upset and got me free hospital food. :) While getting the first bag, the hospitalist came in and tried talking me out of the second bag—like I was going to sit there if someone was not going to make me? That hospitalist seemed to have a belief in more natural treatments which was refreshing. I didn’t get the second set up and went home. Over the months that passed, I was able to raise my iron levels on my own but I probably narrowly escaped a serious issue you like. Awesome to know, despite what we go through with UC, that we somehow find a way.

    Anyway, I’m doing SCD after having success with being raw. I’ve loved the idea of sustainable farming, so it should be an awesome adventure for you. If that is where you end up and if you continue to hike/love your vintage bikes, we might run into each other somewhere along the line. :) All the best and keep us updated with your progress. Steve

  4. Bev August 24, 2012 at 1:52 pm #

    Great writing Rob!! Welcome to the site…it is like being ‘home’ here!

    Along with the SCD…incorporate a good probiotic into your daily routine. Any vitamin store will have one. All you have to do is ask a clerk which one they recommend for UC.

    I have pancolitis. Was on drugs (asacol) for 13 years, and felt ulta crappy on them. I am now drug free and in remission!

    Every day, I take a good probiotic (50 billion good bacteria strong), L-glutamine to heal the colon, and a natural anti-inflammatory called astaxanthin. The whole works costs me about $50 per month. The asacol taht I was on for 13 years cost over $400 per month.

    Cheers, and thanks for the entertaining bio!! Fab!!

  5. Johnny Drama
    JohnnyDrama August 26, 2012 at 5:23 pm #

    Rob,
    Awesome story! You sound like you are one heck of a outdoors man! Thanks super badass! I hope to do many of the things you wrote about. Its tough reading about all that stuff UC has done to you, but you sound like one heck of a fighter!
    Best of luck bro!
    Johnny D

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