UC Ruining my Love for Running. HELP NEEDED!

Introduction:

My name is John and I was diagnosed with Ulcerative Colitis in May of 2011, I was 20 years old then. I had UC for about one year until my first flare which over the course of a few months ended me up in the hospital getting surgery. I’m almost 9 months out from my last of three surgeries.

Some more about me:

I’m from Connecticut and I’ve always been very active throughout high school and college. I love running for events, fun, stress relief. I consider myself an Elite Triathlete and while having UC I never had a problem with high intensity workouts while on daily medication.

Colitis and My Love of Running

About 2 weeks after being diagnosed I started my year long remission while taking Asacol twice daily. I had my first and only flare up in late March of 2012. I tried all of my Doctors suggestions (increasing the dosage, trying new medications, using steroids, and remicade IV) and none of them worked. I was in my Junior year of College and could barely get up out of bed to go to class. I ended up missing my finals spring semester since I was so anemic and loss about 30 pounds (normal weight 140lbs) over the course of a month and a half. I ended up in the hospital that week due to being extremely anemic and received multiple blood transfusions while in the hospital for a week. About 2 weeks after this incident I went into emergency surgery to get my whole large intestines removed. I ended up having three surgeries with 6-10 weeks recovery in between each to make up the J-pouch to be “normal” again.

I’ve always been an avid runner for the last eight years and have been doing triathlons for four years now. I had to take a year off from doing all high intensity exercising. In between all of my surgeries I did very very light lifting to try and gain some weight back since I was literally skin and bones.

Since I got out of my last surgery I’ve been having problems here and there. It is mostly pouchitis and I’ve been on Cipro 500mg twice daily for months now on and off. I’m usually fine to do intense workouts when I’m on Cipro twice daily. I recently had a colonoscopy with my surgeon (Dr. Cohen) to check out my J-pouch and see what’s going on. All he found was that I’m a little bit inflamed (normal pouchitis) and he suggested I go back on Cipro twice daily for two weeks then go down to once daily for 2 weeks, then once every other day for two weeks after that. I’m almost in the once every other day phase currently.

My last surgery was in mid-Octorber of 2012 and I gained most of my weight back. I’m back to weight training, swimming, biking, and running. I’m back to where I was in swimming and biking, however my running has been a difficult road. Whenever I run and am not on Cipro I get a very very sharp pain in the area of where my J-pouch is. I then have to stop and sit down for a few minutes for it to pass. It sometimes even happens when I’m just walking around at the mall or at work.

Now when I run and am on Cipro I don’t get those pains anymore however, I almost always have bloody stool right after I’m done. I don’t know what to do or what to take. I’ve been eating healthy and avoid foods that give me slight pains and gas. I take daily vitamins, VSL #3 probiotic, iron, B complex, and Imodium 2-4 times a day.

I’m asking for someone who has been in the same situation as me. I want to be able to run again at a high intensity level and 5 times a week instead of maybe once. I don’t want to be scared anymore that I’m going to be in pain after or have bloody stool. Please let me know if you have any advice or certain medications/foods that will help.

I appreciate all comments and thank you for listening to my story.

written by John

submitted in the colitis venting area





10 Responses to “UC Ruining my Love for Running. HELP NEEDED!”

  1. CarlyJuly 7, 2013 at 10:23 am #

    Lomotil is the only thing that helps me in those situations, however I don’t have a j pouch and am not sure if it would be recommended for that. It constipates me for a bit and the anti spasmodic portion of the drug prevents the abdominal pain. Best of luck to you!

  2. joannaJuly 7, 2013 at 8:40 pm #

    hey john. I don’t have advice since I don’t have a j pouch, but from a fellow runner to another, I hate not being able to run anymore. I was actually diagnosed after my semester of cross country in college. i’m sad that I haven’t been able to run but with the anemia, urgency, and weakness, there’s no way I can do it without fainting.

    if I were you, i’d cut out running until you get your pouchitis under control. i’d hate for you to do further damage if you have bleeding after you run. doesn’t seem worth it.

  3. LaurieJuly 7, 2013 at 9:06 pm #

    Hi John, I don’t have a total solution for you because my colitis hasn’t gotten as severe as yours that I required surgery. However, I am an avid runner and I’ve been fighting a constant flare for the last year and a half. I take asacol HD max dose and prednisone everyday. As soon as I try to taper completely off the prednisone my symptoms come back. So Ive adapted by running all my distance running alone or along paths/ trails that I know has a lot of hidden areas … Often I need to stop for br breaks 5-7 times per run. I’ve talked to my GI dr and he states that running is extremely taxing on the intestines. My recommendation for you is to keep up your low impact training and give yourself more time to heal. Pain and bloody stools are sure signs of inflammation. You have come so far… possibly a little more time is all you need! Have you tried the SCD diet? Best of luck!!

    • JohnJuly 22, 2013 at 3:39 pm #

      Laurie,

      Thank you for the reply! I am going to buy the book for the SCD diet. It looks like a big commitment however, I have read nothing but good things about it. I plan to give it a try. Thanks again!

      John

  4. shelly in maineJuly 8, 2013 at 12:12 pm #

    Hey Runner John,
    Check out some of the stories under “surgery” catagory like Curtis and Blake, etc and you can reply to them and they will answer any questions…they may not see your story.
    Good luck and well wishes, Shelly

  5. umaJuly 8, 2013 at 7:31 pm #

    Sorry this is not a comment for this story. But for others i guess.

  6. KenJuly 18, 2013 at 2:10 pm #

    John,

    I haven’t had the surgery, but do tris and running. I average running around 40 miles per week, which is probably not near what an elite athlete does though. I know running is very hard on the digestive system, but I had good luck with Glutamine. Buy it in a tub in powder form and mix it with water or juice. I believe it helped eliminate blood in the stool. I started out taking 10 g 2 times a day. Blood went away quickly. It also slowed down the digestion, and enabled me to run for a couple hours at a time without immodium (those are my longest runs). It is an amino acid that is the main fuel for re- building the lining of the colon. I have reduced it over time and now only take 5 g once a day.

    Glutamine is also a major player in rebuilding muscle. I take it immediately following my runs in the morning. I consider it a recovery drink. You probably already know that the body absorbs nutrients the best shortly after workouts.

    I also recommend planking. It strengthens everything in the core, and helped me eliminate abdominal pain while running during a flare. Maybe it will help support your surgical area. Just throwing it out there.

    I wish you the best and know you will figure it out. You’ve gone through the hardest part!

    • JohnJuly 22, 2013 at 3:37 pm #

      Ken,

      Thank you for the reply! Do you use a specific Glutamine powder that works best for you? If so, please let me know what it is. I appreciate you taking the time to help out.

      John

      • KenSeptember 12, 2013 at 6:53 am #

        John,

        Sorry I missed your question. A little late, but here goes.

        Here’s what I know about Glutamine. It can be made through a chemical process, or a fermentation process. The results should be the same, though many on this site use the fermented.

        I use Twin Labs, which is chemically processed, and have achieved remission without prednisone over 9 months ago. I believe Glute is just part of the equation though. I take around 10 g per day,

        Cheers,

        Ken

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