Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Update on My Team Challenge Training for Half Marathon- I got UC


Hi, My name is Adam, and I have UC.  I was diagnosed about two years and a few weeks ago.  But I had symptoms for quite some time before that.

What is really crazy to see is how similar my story is to so many other people on this website.  I for sure remember the times when I thought that my life was going to be spent about 25% of my awake time in the bathroom.  Somedays, it seemed as though almost half my time was spent in the bathroom, and the remaining half was spent wondering if I should be walking to the bathroom.

I definitely remember the days which seemed like every other day when I would get a ride from my wife down to the local Walgreens Pharmacy to pick up a new prescription of asacol or colazal or prednisone or sulfasalazine.  Or the trips to the infusion center to get my remicade infusion or even the times when I was testing out Humira to see if that would do the trick and get my ulcerative colitis under control.

But, right now, and for about the past year, my UC symptoms have for the most part gone away.  Sure, I do have days or a day or two or three in a row where things seem like, “Oh crap, I sure hope this isn’t a colitis flare getting ready to kick in again…”  But the reality for me at least has been that I haven’t really had much to worry about in terms of my UC.  I do follow the SCD diet almost 100% of the time, and it seems to be working for me.  I’m off all medications and have been for one year and two weeks, and I’m pretty happy I am off them.

I joined the Crohn’s and Colitis foundation a few weeks ago, with the goal of completing the Las Vegas Half Marathon and to also help raise donations for the CCFA to support alternative medicine for UC research.  My mentor in my CCFA chapter has told me she will try her best to make sure that is where the money I’ve raised will be given, which makes me happy.  I am personally against medications at this point in my life, as they did very little if anything for me.

At the end of the day, I’m starting to realize that it simply takes time for many people to come to terms with the fact that they have a “disease”.  I’m most definitely still NOT at complete ease with that fact.  But everyday that goes by makes it easier to realize and live with.  And reading other people’s stories ahs helped me a TON.  I’m not sure if  its the fact that I feel more normal knowing others worry about the things I worry about with regards to UC, or that others have/had the exact same strange symptoms as me, or that others have found ways to cope with their disease that are similar to me, BUT, each day I think life is getting somehow back to normal.

Thanks to everyone who writes stories on this website through the Colitis Venting Area, and thanks to all the sponsors of my current Team Challenge with the CCFA.  If you are interested in making a tax deductible donation to the Crohn’s and Colitis foundation on behalf of me, you are most welcomed to do that.  Here is the link for that: http://www.active.com/donate/lv10norcal/adam

So far I’ve raised about $1300 which is pretty cool, and a massive big thanks to everyone who has sponsored me so far!!

-Adam (go SF Giants)

PS:  If you are just banging your head against the wall right now and feeling depressed that you don’t have any control over your UC, I know how you feel.  I was feeling the same way for a very long time.  I was also thinking that surgery didn’t seem like too bad of an option(many people that have surgery are super happy they did, don’t forget that, thats what the doctors have told me too).  I didn’t know what to do.  But, at the end of the day, it was another person with UC who helped me out.  She told me about her colitis diet treatment that she was using with success.  I hope that in some way, either this story, or other stories on this site can be of some type of help to others who were stuck with their UC like me.  It doesn’t really matter how, if anyone with UC can make someone else with UC feel better, I think we call that a WIN!

Lastly, I have recently been putting up some videos about my meeting with a local microbiologist who has completed extensive studies on the human gut.  I hope some of you are taking the time to watch some of these videos(I know that at times they may seem very technical).  What has fascinated me is that the diet that I follow is based on the belief that the human microbial gut enviornment is the place where they symptoms of ulcerative colitis are born.  So, with changing the diet, it is possible to change the “bad microbes or “gut flora” if you want to call it that, and you are actually able to fix the ulcerative colitis symptoms when the gut is in a healthier more stable state.   Well, if I lost you in this paragraph, there is a great website page that I would suggest for everyone to read which explains this idea much better(this is the site link here).  It comes from the official website of the SCD diet which is what I follow, and to me, the science behind makes sense.  And after meeting with the scientist last week, it makes even more sense.  So, many more videos to come from that meeting/interview, it has just taken me a bit of time to get them all up and viewable.

UPDATE: Here is the picture of a sign that I was wearing on my running shirt during the actual half marathon on Dec. 5th.  I just scanned it and now here it is:

living with ulcerative colitis and I like it

CCFA Half Marathon Las Vegas, NV. Dec. 5th. I do like UC…weird..

Dec. 26th UPdate:

Hey, its been a few weeks since I did the half marathon.  For the record, I ran the first 7 miles, and walked the last 6.  It was super fun, tons of awesome people, and I highly recommend it to anyone.  Infact, if you want to do it with me next year, send me a comment and we’ll make it happen.  As long as I’m living, I wil lsurely be there in good old Vegas for next years event.




CCFA

6 Responses to Update on My Team Challenge Training for Half Marathon- I got UC

  1. Tiff October 27, 2010 at 3:44 am #

    Adam,

    I how long on the SCD diet did you wait until you started to decrease your medications?

    • Adam
      Adam October 27, 2010 at 6:55 am #

      Hey Tiff,
      When I started the SCD diet I was on a small dose of daily prednisone (about 15-20 mg/day I don’t remember exactly) and I weaned off the prednisone completely over the next two months, so going down VERY slowly. So I guess I would say that I started to decrease my medications right away, but just tapered VERY slowly

  2. Kelly November 18, 2010 at 2:38 pm #

    Hi Adam,
    I just found this site. Thanks! It is soooo refreshing to hear from people in the same boat, although it’s a bit leaky at times.

    You mentioned you are running the LV half marathon, I wish I could say the same, I have run it in the past but I have just resumed my running after a long respite since I became ill. BUT, I have a good friend who is running it for the Team Challenge and she does not have Chron’s or colitis (lucky her) but she does it for people like us. She is so fantastic. I am going to route her on that day so I will now be there for you too!

    What are your training tips as far as nutrition goes? How do you refuel or keep electrolytes in your system that are not illegal substances according to the SCD?

    • Adam
      Adam November 19, 2010 at 6:07 am #

      Hi Kelly,
      I’m happy you found the site too. We need more marathon runners here!!
      Hey, it turns out I will be walking the half marathon afterall. I came down with my second UC flare about two or three weeks ago, and so I stopped the running/training. Bums me out a bit, but always next year.
      Anyways, as far as refueling, great question. I do alot of eating eggs and smoothies in the morning that are legal. I like orange juice peanut butter strawberry and blueberry smoothies. Lots of calories there.
      I also eat alot of beef and chicken. I think my flare was due to me breaking too many diet rules over the past several months(mainly corn chips and cream and milk in my coffee)
      Are you fully out of the woods as far as being ill?

      • Kelly November 19, 2010 at 1:43 pm #

        Hey, thanks for replying!

        Oh heck no, I’m not out of the woods. I’m not even sure what out of the woods feels like. I am currently in a flare too. This one is worse than any I’ve had recently. I have gotten so bored with the SCD that I started experimenting with food and then I went out to eat twice last weekend. I thought I was being good-grilled chicken and a dry salad (oil and vinegar on the side), and dry white wine, but something got me. I think the flare was coming on for a while, increasing in intensity slowly and then wham! I violate the rules pretty regularly though. I eat Larry and Luna’s Coconut ice cream which has agave syrup in it and I put raw cacao nibs in my morning yogurt, and I’ve been increasing the strength of my green tea (personally, I think life without caffeine really sucks, chocolate too that’s why I’m addicted to cacao). They never make me feel bad so I think they must be OK. That’s how I test stuff, I’m not sure if that’s right, but if I don’t feel bad in the first hour or so after eating then it is good.

        That is great that you are going to walk the 1/2 M. Are you going with a group from Team Challenge?

        I will be experimenting with more smoothie stuff too. For some reason I can’t handle citrus and bananas. I know the bananas are supposed to have brown spots but when they are that ripe I really don’t like them. I even have a hard time with honey, I have to use it very sparingly. This is what I’m doing now that is fantastic:

        In a blender :
        coconut water
        fresh cranberries-blend until very finely chopped (or use a juicer but I like it crunchy)
        add frozen blueberries
        fresh ginger-minced
        and a splash or two of honey syrup.

        Honey syrup:
        1 cup honey
        2 cups water
        bring to a boil and remove from heat immediately.
        keep in refrigerator.
        Sadly, this may destroy any beneficial elements of the honey-I’m not sure.

        This is so darn good I had to share. And great for Thanksgiving too!
        If you can handle vodka you can add that for a deliciously healthy cocktail.

        Kelly

        • Adam
          Adam November 20, 2010 at 10:43 pm #

          Hey Kelly,
          Thanks for the deliciousa Thanksgiving boiled honey water coconut smoothie with ginger tip!
          I think the pilgrims were actually pounding that same stuff the moment the got off the ship.
          Yeppers, I’m doing the 1/2 M with a local CCFA chapter. I think the flares we are/were in sound like they may have developed in the same way…a few to many broken diet rules. But heck, that’s life, live&learn and sometimes make the same mistakes twice right…

          Keep us all posted on your next smoothie cocktail experiment.
          Have a good one until we message again,
          Adam

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