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The Days with IBD

Kyle and his wife in Times Square, NY

Kyle and his wife in Times Square, NY

Greetings all my IBDers!

Hope life is treating you just dandy these days, Hope all the wonders that come along with having a gut disease are keeping calm and your world is able to flow in a normal motion. But we all know, for some that is going on, and for others you are struggling, and I am sorry for those who are struggling, keep the faith, things do get better, gotta keep focused on the positives even if that is one little thing, focus on that!

Life update from me:

I know the last time that we chatted I posted you a food journal and was blown away by all the advice that I received from each and every person on this site it was awesome! I have put a lot of those ideas into practice, trial and error, still haven’t found the culprit behind those lovely crampies, but as we have said before this diet thing is a work in progress with constant tweeking and adjusting for every season of life.

Oh, my bad, my name is Kyle. I am a teacher in a small town in WA, believer in Jesus, I have an amazing wife that has stuck with me for 3 years now and I have Crohn’s disease. I have been treating my Crohn’s for almost a year now by diet (SCD), with little on and off agains with prednisone, but have been true to the SCD throughout this past year.

So now for my update: I started school once again this year experiencing some symptoms, mainly just urgency when I woke up in the morning, unformed bathroom visit, and then the rest of the day things seemed to be pretty normal for me, still had the gut cramps, but wasn’t crapping my brains out, no blood, or mucus, just right as I woke up I had to go, got it done, and off I went. I went on a short 10 mg stint of prednisone and slowly tried to ween myself off of it. It was kind of an up and down process, couple good days (formed and solid) then a string of rough days (unformed D)Well, I haven’t been able to get to that place of weening yet because things have been slowly moving south on me, nothing like IBD running wild, but my gut is waking me up earlier and earlier with an urgency, usually around 4 am, (unformed D) and then once again when I get up to go to work at 6 am. Still unformed and when I gotta go, I gotta go, but I am not experiencing anything throughout the day as far as having to go to the bathroom, I am still passing gas throughout the day, and then usually I am going before I call it a night as well.

Now my doctor has recommended that I bump up to 20 mgs for a week or two and see if that will kick the issue that I am dealing with. He has also put the idea of Imuran (?) on the table as a possible way of treating my Crohn’s.  I was diagnosed over 2 years ago now and have never really felt like I was at a place where my Crohn’s wasn’t bothering me in some form or another. The idea of surgery has crossed my mind several times now as I have friends who have Ostomy’s and have truly felt like it gave them a new chance at life. Prednisone is kicking my butt and giving me knee and ankle pain on a daily, so I gotta get away from this stuff, the diet seemed to be doing the trick up until the beginning of September until now, I have even dropped back to the chicken soup for a couple days and that got me no where.

So I guess I am just looking for any advice you all might be willing to give me.

Has anyone experienced this morning urgency but then haven’t had an urge to go for the rest of the day? Imuran, is it worth my time to look into? Is the diet just meant to get me to a place where I can survive, my hope is to improve, not just live everyday hoping that things may improve tomorrow? And at what point do I start having the real conversation about surgery?

My faith has not grown weary, God is still good, I am just tired of the daily battle with Crohn’s, just wears on you somedays, and I hate the fact it effects my wife and I getting to take part in the normal things of life and the last thing I want to do is have Crohn’s rob us of another season of our lives. Thanks for all you guys do. YOU ARE ALL ROCKSTARS IN MY BOOK!




3 Responses to The Days with IBD

  1. Nikki in Chico
    nikki November 14, 2014 at 10:57 am #

    Hey Kyle!
    I just wanted to pipe in that my urgency is a first thing in the morning situation too. Lately I’ve been waking up in the wee hours (like 1 or 2am) and sitting through a “wannabe” sesh. It’s a little inconvenient, but not horrible. I also have a very itchy rash here and there in random places. This rash always seems to show up when I am flaring.

    I have been on Uceris for a few El weeks which is helping a little bit.

    Thanks for your post. :)

    Nikki

  2. mj November 14, 2014 at 12:46 pm #

    Hey Kyle,

    I think the morning urgency is all part of UC unfortunately, if I sleep on my right side it tends to not be as bad. I just need to make sure that bathroom is free when I get up! You’re lucky if you’re ok during the day, then again at night. Currently I’m going up to ten times during the day, plus more at night.

    I think some sort of maintenance drug like imuran is definitely worth a look – if you’re only taking pred now. The SCD worked wonders for me, but since going off it (I was travelling) I’ve wound up in a flare again and hospital this time around.

    I have just started remicade (first infusion yesterday) so I’m hoping this will work for me because nothing has in the past. I’ve been in some sort of flare for the last 4 years, my husband is an angel for putting up with all that!!!

    So stay strong, check out other meds before going down the surgery path, might even be worth seeing if there’s something on SCD that still triggers you eg I can’t eat onion, raw veggies, salads, too much fruit etc.

    Take care!

  3. Ella November 14, 2014 at 1:44 pm #

    I hope you recover from it fast!!! But, please read up on dr.Borody’s work. He has a different approach on treating UC and Chrons. I find his work fascinating. There was conferenceinChicago i August of this year, he presented his research and treatment, very promicing.

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