From Fireline to IV line. UC is a Jerk.

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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