07-06-2016, 12:58 PM   #1
Join Date: Feb 2016
Location: Dighton, Massachusetts

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Need to change my lifestyle

I'm curious as to how people have been able to exercise with active Crohn's. I used to be an avid runner. I was a weekly 5k/10k racer and trained for the occasional marathon. My PR for a marathon was 4:02 - nothing great, and for a 5K 20:31. I was in shape and felt good. I was last in good shape in my late 30's early 40's. Well, about 8 years ago I was diagnosed first with UC, then changed to Crohn's (still think docs aren't sure on that). Mostly confined to my rectum. I have had fistulas.

Well, I have been unable to exercise regularly - except for the 1.5 yrs I was in remission with Remicade. I'm just so uncomfortable doing anything with the constant urge to go. My lifestyle is totally sedentary. And because the disease is mostly confined to my rectum, I have no real problem absorbing nutrients. So with very little activity my weight has shot up 50 lbs and I am always out of breath. I know a change in diet is also in order. I am so discouraged when I think of how I used to be and what I loved doing. The thought of running and messing myself (it's happened) or going to the gym and having an accident is de-motivating. I dream of returning to a healthier lifestyle. The last race I ran was a 10 miler in 2008. It was then I first realized something was not right. It became a real struggle to complete this race. There's nothing like being miles into a road race, no toilets in sight, a feeling you are going to sh!t yourself any moment. That makes for a long WALK back!

When I was in remission, I did take up cycling and was able to train and complete a 100 mile race (well, ride). I was losing weight and thought I was on my way... then I started having reaction to the Remicade.

So back to my question.... How do you folks with similar symptoms thwart the constant urge to go and manage to exercise? What kind of exercise? Where? Have those of you with urgency/incontinence been able to run? Do you just push yourself through it?

I'm setting myself up for other problems with the belly fat I now carry...
07-06-2016, 02:09 PM   #2
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JaimeM's Avatar
Join Date: Sep 2015
Location: United States, North Dakota

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I have such a hard time with this. I was always so active until I started having problems with my crohns. Even just 3 years ago I was still running, but since then have become very sedentary and really put on a few pounds. Now I try to exercise the days I'm feeling ok. It's usually just an easy workout however.
Diagnosed Terminal Ileum Crohns 2008
Remicade 6yrs
Had a healthy baby boy 2014
Switched to Cimzia but didn't work 2015
Back to Remicade and added Azathioprine 2016
07-07-2016, 08:15 AM   #3
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hcrum87hc's Avatar
Join Date: Jul 2014

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I used to lift weights pretty heavily four times a week. Unfortunately, due to my scarred strictures, I do not feel like eating a lot of the time, and when I do eat, I don't eat enough. I'm also not absorbing nutrients as I should due to the scar tissue. I've since stopped lifting as I'm not getting enough nutrients to fuel the muscle growth. Hopefully after I'm fully healed from my resection next week, I'll be able to jump back into it.
Blessed is he who trusts in the Lord, whose confidence is in Him. Jeremiah 17:7.

Officially diagnosed with Crohn's Disease in June, 2014 2 weeks before 27th birthday after ER visit due to partial blockage (stricture).

Current Meds:
Humira-40 mg every other week
Imuran-150 mg/day

Surgeries: Ileocecectomy 7/13/16 removed 60cm of small intestines.

Status: All inflamed and strictured intestines removed. All remaining intestines are currently healthy.
07-15-2016, 02:26 PM   #4
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Join Date: May 2011
Location: Ireland

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i have found cycling the best, it doesnt give me the urge to go like walking. I have been told exercise is not a good idea when flaring. If I adhered to that I would never exercise. The time of day is a big factor. No way could I go cycling if I had to do it in the morning. Always went in evening. Maybe see what time of day you are best?
07-16-2016, 11:37 PM   #5
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Join Date: Apr 2015
Location: vancouver, British Columbia

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I used to cycle all the time, I was actually a bike courier when I was younger, but I havent had the energy the past 6 months to exercise...

Did anyone get there energy back after taking Entocort? or steroids in general?

07-16-2016, 11:43 PM   #6
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07-17-2016, 08:18 AM   #7
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Eridon2002's Avatar
Join Date: Jul 2014
Location: Saint Louis, Missouri

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Entocort helped me. I wouldn't get 100% energy back but it greatly lessened the walking dead/zombie feel. Enough energy to do some exercise.
09-05-2016, 07:44 PM   #8
Join Date: May 2016
Just a suggestion, if your main issue is that you are worried about needing the bathroom then (if you can afford it), get a treadmill or running exercise bike for the home. You'll be able to keep fit in familiar surroundings and a bathroom will never be far away.
09-05-2016, 07:48 PM   #9
Join Date: May 2016
Also, I sympathise with your feelings of fatigue. I also suffered the same symptoms due to losing blood in stools, not having much of an appetite and when I did eat, food was not absorbed properly due to the inflammation. After a long time asking my gastro for an iron infusion he finally agreed, and it has helped me alot. Enery levels are alot better.
09-05-2016, 07:54 PM   #10
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My doctor liked it when I used to do the elliptical. I think once or twice I had to stop for the bathroom.

10-20-2016, 08:07 AM   #11
Join Date: Oct 2016
Agree with the bike and elliptical, and finding a gym that has easy access to a restroom also helps the confidence. Something about the constant pounding motion of running seems to shake the bowels up.
I also was a somewhat avid runner, completing 1/2 marathons and running about 20 miles a week. Worst part has been that my wife still does but now I can no longer go with her because I'm so afraid something will happen on the run. One less thing we can do together with this GD disease...
01-24-2017, 06:59 AM   #12
Join Date: Jan 2017

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Hi, feel for you. There's some research showing that running does not help with intestinal permeability, and so i've stopped running. But interval exercise should be fine. You obviously like exercise, so its just a question of reforming the habit. Aim for 1 hour a day. So part of that can be a brisk walk. Certainly cycle everywhere. Wear a nappy if needed. But there's lots of exercises you can do at home; indoor cycling, home rowing is excellent. Try to form habit so you are doing a bout of exercise every hour. Its great once the habit is formed. Best thing is to find some exercise or sport you enjoy. Then it becomes a treat. Ball sports are great. Obviously loosing weight is a key. I'd think more of changing what you eat than going on a diet.

Giving up desk is an idea (i've tried a standing desk but find it difficult to work).

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