Ulcerative Colitis and Running

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OnionMomma
OnionMomma Posts: 938 Member
I thought I'd start here and see if anyone has an advice for someone running with U.C.

My husband was diagnosed with this about 5 months ago. He loves to go out and run with me even though due to his work schedule he can only go about 3 times per week. In the past and still now, he has to take many potty breaks.

I mean, when he has to go he has to literally stop running and find a bathroom. This isn't an issue too much as we have made strides to have our running "paths" around town near and passed places where he can pop in and go. But if we are too far from one it is very painful for him.

He talked to his GI about this and he pretty much said, you will have to live with it.

Is there anything he can do to help him keep running and not have to stop to go so often. He is stopping about 2-3 times per run even if we are just doing 3-4 miles.

Is there a diet that can help with it?

Thanks for any advice. If there isn't too much help here I will ask in the regular forums but I can see that getting out of hand and people making fun of him and I don't want that.

Replies

  • fleetzz
    fleetzz Posts: 962 Member
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    UC is one nasty disease. I have heard a low residue diet may help--is he on one? If not, make an appointment with a nutritionist to discuss his options.

    UC has flares--so when he is better he can go for a run where there isn't a bathroom in the immediate vicinity but I don't think he will ever be able to go for a run where there isn't a bathroom available within short notice.

    Unfortunately his gut is not working properly and there is no way to predict when the contents are going to be propelled through.

    Hope he is ok.
  • OnionMomma
    OnionMomma Posts: 938 Member
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    I will mention possibly seeing a nutritionist and see if they can help some. His GI is good but is not being really much of a help in the when can I run without issues department or the when am I going to have to stop running to the bathroom, or what should I be eating.

    Thanks though!
  • schmenge55
    schmenge55 Posts: 745 Member
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    I never did a long run without toilet paper in my pocket. Once I was diagnosed Celiac and went gluten-free that went away ????. Celiac is certainly not UC but maybe he could try avoiding gluten and see if it helps
  • becka63
    becka63 Posts: 712 Member
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    I have got Crohn's Disease and enjoy running. Thankfully, the only time I have experienced anything like you describe as your husband's experience was on an organised 10k so I was able to leave the track, sort myself out and then return to the run.

    For my own preparation, I always try to have visited the loo before I run. With busy schedules etc, this can often be difficult and sadly, I have sacrificed the day's run if I haven't 'gone' in good time. I also try and drink a lot of fluid prior to my run, which might feel counter-productive but it does help keep things 'normal' for me.

    I'm not sure where you're based, but in the UK it is my understanding that dieticians are qualified and trained, nutritionists are not. When I saw one many years ago, I asked my GI to refer me and he did.

    I do know of some people who 'use' loperimide, but that would have to be a personal choice your husband makes, as he knows his own body and condition better than most, I would imagine!

    Anyway, good luck to him and you - message me if you'd like to chat further!
  • lporter229
    lporter229 Posts: 4,907 Member
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    I have Crohn's disease and I can identify with your husbands problem all too well. A gluten free diet has been very helpful for me. When I am flaring, I usually have most of my problems in the first half of the day and then after meals, so I would do my running after work but before dinner. Part of it is just getting accustomed to your body's patterns. I try to keep my sleep and eating patterns to a routine and that helps me know when I can expect "issues". Also, I always carry TP with me. I would be lying if I said haven't had to stop and "make like a bear" more times than I care to count. I try run where there are public facilities or on heavily wooded paths. If I run in my neighborhood, I stay close to my house if I am experiencing issues.

    Is your husband on any treatment for his UC? I have tried several times to control my Crohn's with diet alone, but I always end up back on the meds. Right now I do Remicade infusions, which I know are very scary to a lot of people, but it has been a God send for me. IBD can be tough to live with, but it does not have to be a death sentence. I have completed numerous half marathons and a full marathon since my diagnosis 11 years ago and am about to begin training for another full. Feel free to PM me or friend me if you have any other questions. I think it is terrible that you should have to worry that people on the general forums will be unkind. That makes me sad.
  • becka63
    becka63 Posts: 712 Member
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    I would also add that I think 5 months after diagnosis he is doing a terrific job to be running at all! Also, had you thought about a treadmill? I realise you wouldn't be able to run together! and maybe that's too much of the appeal of running to consider a treadmill! but he would be able to run and find out how his body behaves with the UC and his lifestyle, which might help him build confidence in terms of loo breaks, etc.

    I also feel sad that you fear the general forums for the input of the forum trolls... Grrrr
  • Run_for_my_life
    Run_for_my_life Posts: 15 Member
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    My husband was diagnosed 7 years ago. He is now "in remission". My husband is on Lialda for maintenance. My husband kept me pretty sheltered when things were REAL bad, but I know it took longer than 5 months to get things running smoothly. It has taken us this long to narrow down the cans and can nots. No nuts, minimal fiber, no iceburg lettuce, no spicy, no garlic, you get the idea. Every tummy will react differently but until your husband and the GI get things under control I strongly urge getting back to basics. Just like when we start an infant on a new food, Try nothing new for a few days, see how the body reacts. Dairy made hubby go a lot during the time he was trying to get diagnosed. Is your husband getting the infusions of Remicade or something like that? Hubby did that for a while until the allergic reactions got too severe. The infusions are not suggested for long term use due to cancer risks. I believe Reddit.com has a UC/Crohns board he may turn to for help.

    I wish you both the best of luck and glad you have a diagnosis to work with! UC sucks but it is manageable, just a lot of trial and error!

    BTW My hubby is now able to run with me for all distances. There are times he has to stop and walk due to the urge but that is rare.
  • OnionMomma
    OnionMomma Posts: 938 Member
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    The only med the GI has him taking right now is Lialda, nothing else. Should the GI be trying more since he is still having symptoms after 5 months?

    He has basically told us it will take time. Just keep taking the medication and over time, everything will even out.
  • becka63
    becka63 Posts: 712 Member
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    If it was me and I was still experiencing symptoms I would be going back. Some times with IBD meds it's a case of getting the dosage right before looking to add new things in.

    Check out www.crohnsandcolitis.org.uk there is a publications page which has free downloadable information sheets on UC and treatments. I don't normally suggest looking on the Internet, as it is the quickest way to 'google yourself dead', but this UK charity only publishes information that has been peer-reviewed by an appropriate panel of medical experts.

    I guess if you're out of the UK some of the brand names will differ, but the type of drug (ie mesalasine) is the same. Good luck.
  • lporter229
    lporter229 Posts: 4,907 Member
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    Lialda is a first line of defense kind of drug. It's not very strong, and honestly did nothing for me. Yes, I would suggest that is he is still having bad symptoms after 5 months, he may need to move on to something stronger. Also though, keep in mind that people with IBD rarely have completely "normal" bowel habits, so it depends on how much he is bothered by his symptoms. I f there is a lot of pain and/or blood, I would definitely go back to the doc.
  • Run_for_my_life
    Run_for_my_life Posts: 15 Member
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    Did they at any point have him on steroids to get the inflammation down? Hubby has to keep a prescription on hand just in case. First sign of an issue he takes a couple for a couple days and keeps things in check. I would suggest he go back and get possibly a second opinion.
  • dtesle
    dtesle Posts: 3 Member
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    I have U.C. and was diagnosed 22 years ago. I have been running for about twelve years and have completed about 14 half marathons and four marathons. U.C. is a daily struggle. I continue to take daily medication even though I am technically in remission. It will get better; it took me several years before I felt like running. If your husband is able to handle running 3 times a week, he is doing well. I would suggest that he not push it to quickly. Experiment with diets just like you would in fueling for a long run. With U.C., hydration is essential. If you are in the U.S., check out the Crohn's and Colitis Foundation of America (CCFA). They have an endurance training program for the half marathon. I ran a couple of races with their Team Challenge. I even had the chance to help coach one of their training groups. Quite a few of our participants suffered from U.C. or Crohn's. We had almost a 99% of our team members finishing the race. CCFA is a great resource for you. They also offer support groups and provide educational opportunities. One of their priorities is funding research. Crohn's and colitis are incurable, so your husband's GI is right, you just have to live with it. My GI says to me, eat what you want. If something bothers you, don't eat it! Good luck to you and you husband!
  • mom2tripsn2
    mom2tripsn2 Posts: 64 Member
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    I'm so glad I found this post...I was just diagnosed on Wednesday and one of the first things that went through my head was "what if I can't run anymore?!?!?!" It's good to hear people are doing it...soooo...when can I run again? I was thinking of just going out and doing like a mile or two, just to see how I felt...my pain is pretty much resolved so I seem to be coming along pretty quickly, despite having to have been in the hospital for four days...I just miss running so much and have events planned for the fall. When is too soon to give it a shot and see how it goes? My GI didn't say no exercise, but we didn't really talk about it either...I was too afraid to hear him say no...and I don't go back for follow up for 4 weeks....I'd really like to run before then....thoughts?
  • lporter229
    lporter229 Posts: 4,907 Member
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    My doctor has always told me that it is okay to run provided I feel able. Exercise should not affect your colitis. You may want to consult with your doctor first, but my doctor and I both believe that, for those with a chronic illness, being able to function as normally as possible is important for both the body and the mind and spirit.
  • mom2tripsn2
    mom2tripsn2 Posts: 64 Member
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    My doctor has always told me that it is okay to run provided I feel able. Exercise should not affect your colitis. You may want to consult with your doctor first, but my doctor and I both believe that, for those with a chronic illness, being able to function as normally as possible is important for both the body and the mind and spirit.

    That's my thought too...I was just out running last Saturday and did 7 miles...I was undiagnosed, but clearly looking back on it, I was in the middle of a bad flare because I was in the hospital by the wee hours of Tuesday morning, less than 3 days later...I figure if I was doing it then, I should be BETTER off now that I am being treated to control my symptoms, right? Honestly, my stomach issues seem to cease while I'm running...I've chalked it up to stress relief even before having this diagnosis....I feel like it would do me a world of good to be able to have that release right now....
  • lporter229
    lporter229 Posts: 4,907 Member
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    Again, I do not want to lead you into a dangerous situation by assuming that our bodies react the same way, so I would encourage you to have this conversation with your doctor. But, in my experience, the only limiting factor that my illness has put on my ability to run is when I get into high mileage training (over 30 miles/ week) when I am in a flare. I simply can't get the level of nutrition that I need to sustain that kind of mileage in a flare and end up with drastic weight loss and fatigue. Other than that, I agree with you that I actually feel better when I am running. I usually have no pain. I have had this disease for quite some time, so I am pretty in tune with my body's habits and patterns and I adapt my running schedule accordingly.

    Right now I am mostly in remission and am giving it a go at training for my second marathon. I have had to drop out of marathon training twice before due to flares, so I am not going to pretend that it has never been a factor and that I can always just go about my business as usual. There are limitations to what you can and can't do, and sometimes the tricky part is finding out what they are. I wish you the best of luck. feel free to friend me or PM me if you have any specific questions.
  • mom2tripsn2
    mom2tripsn2 Posts: 64 Member
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    Thanks again :) I will definitely check with my doctor, it's just nice to hear someone else is doing it...makes me feel much more positive in general. I had just started training for my first half in November, and I have a few shorter runs (5K and 10K) im registered for before that so...we will see how it goes...
  • becka63
    becka63 Posts: 712 Member
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    I'm started running many years after being diagnosed with Crohn's Disease and it doesn't seem to affect my condition. I've never tried to run during a flare - I've been lucky insomuch as I've not had a flare since starting running - I guess I probably couldn't!

    If you, or any IBDers are interested, there is a Facebook forum admined by Crohn's and Colitis UK, which is a supportive forum. Although it's run by a UK based charity, it is an international forum and there are many members from around the world.

    www.facebook.com/groups/CCUKforum

    It is a closed group, so your posts or comments won't be seen by anyone else you are friends with!