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Struggling Athlete Seeks Advice

elite runner with ulcerative colitis

Intro:

My name is Heather and I’m 28 years old. I live near Detroit, Michigan and I was diagnosed with UC in 2008. The most important thing in my life (next to family) is my running. I recently became a sponsored athlete but unlike most runners, I have a huge challenge with keeping my UC at bay so I can stay healthy enough to train. I would greatly appreciate any and all advice from my fellow UCers on how you manage to stay active and exercise with this disease. Thank you in advance for your support!

My Symptoms:

My symptoms are pretty typical- cramping, pain, bleeding, weight loss and fever (when I’m flaring) and urgency.

My Story:

I was diagnosed at 24 after spending 7 days in the hospital after my initial flare. I was told I’d need surgery if my body didn’t start responding to medicine. Luckily, it did. Since then I have followed a very strict diet. I cut out all bad (or what I feel to be bad) foods. I don’t eat flour of any kind, sugars (other than fruit), dairy, soy, processed food, candy, sweets, soda, bread of any kind, cheese or milk, oatmeal, potatoes, rice, pasta, heavy foods and anything generally unhealthy. I have managed to stay pretty healthy this way. My only vice is that I love red wine. I have a glass every night with dinner and it helps to relax me and ease the pain of eating.

Running is my passion and I recently became a sponsored athlete. My UC is a huge challenge and I feel like I have no one to talk to about this because most elite runners have never even heard of this. It’s hard to admit but the extreme training I endure only eventually makes me sick and I just can’t believe that the thing I want most (to run an Olympic marathon qualifying time) may never happen because of my illness.

Does anyone else with UC have a problem with exercise- specifically running? My doctor told me I would never run another marathon again and sometimes I think he’s right. I usually flare from all the stress of marathon training and I end up having to skip out on the event, which doesn’t look good for a sponsored athlete. I have recently had several embarrassing accidents while running and I think the jarring impact of the running motion itself is to blame. I just want to be able to train like a normal athlete but I have a challenge no other runner has and who better to ask help from than other people with UC?

Where I’d like to be in 1 Year:

I would like to be off medication, out of my flare and training like an elite runner again. I would also like to think that a pregnancy will be easy- I’m concerned about that.

My Medications:

Currently, I flare about once a year. Asacol usually works pretty well for me but I find that I have a hard time getting off it. I’m pretty stubborn and hate taking it, so that’s my main challenge. I usually don’t need Prednisone when I flare and I have never tried anything but Asacol, but it has gotten me out of my flares every year. I also follow a diet very similar to Adam’s diet and I take a multi daily along with probiotics and fish oil.

written by Heather

submitted in the Colitis Venting Area

Tags: athelte, marathon, runner





16 Responses to “Struggling Athlete Seeks Advice”

  1. AdamMay 3, 2012 at 7:48 am #

    Hey Heather,

    I’m so sorry you’re dealing with this, especially because the UC looks like its really giving you a tough time on reaching your goals.

    I’m not a runner at all like you, (I wish though:) but, I’ve also had some difficulty when I have previously started training for half marathons. When I reached a certain level of about 3 mile runs, I noticed symptoms coming back.

    I just found the link I really wanted to share with you from an in credible athlete with UC named Vicki. She has written over 10 stories on iHaveUC over the past two years and she too was struggling with symptoms and her professional bike racing career. Here is the link, I think it will help you out with seeing what is possible:

    http://www.ihaveuc.com/author/vickith/

    Best of luck to you Heather

  2. michael singermanMay 3, 2012 at 7:51 am #

    I run long distance also (around 52 miles a week)and I do a half marathon once a year. When I have flareups (like now) I have to stop and go to the bathroom when I am running. Luckily I run in the woods, but it is a pain to have to stop and go and you have to carry toilet paper. Advice I can give you, avoid caffeine before you run, try different types of food — experiment and see what affects you. I am not on meds, I am allergic to asacol and colazal, and nothing else has worked. Basically running messes with your digestive tract anyway, so if you have a disease it is worse. Also try to stay hydrated, I don’t get enough liquids, and can get sick and dizzy. Hope this helps.

  3. HarbMay 3, 2012 at 8:26 am #

    I’m not a runner myself but what you could try is low impact exercises like weight training or bodyweight exercises and see how that works out, if your body can tolerate it or grows to be able to, you may be able to run short distances at first and over time increase those distances till you’re where you need to be to compete again. It may take some time but the effort is worth it. I hope this helps and good luck to you.

  4. DawnMay 3, 2012 at 8:41 am #

    Heather,

    I am a runner, though at nowhere near your level admittedly. I was very fortunate in that running actually seemed to dampen down my symptoms during the actual run itself. I always attributed this to the diversion of blood flow from the digestive tract plus the endorphins. At any rate, I have a question for you about your Asacol. Have you considered or discussed with your doctor the idea of staying on a maintenance dose? Asacol (and it’s related drugs like Lialda, etc) are often used as a maintenance drug to keep your inflammation down and flares at bay rather than just as treatment for flare ups. I know it sucks to take pills every day, but if it will keep you healthy it is worth it. Also, Asacol is kind of the lesser of the evils when it comes to all of the potential drugs used against UC. It’s not about being stubborn or tough….you have an illness. Your body isn’t going to magically stop having UC without some sort of treatment. Repeatedly going off of meds and allowing flares to come back does repeated damage to your colon and can cause your condition to worsen over time. Please talk to your doctor about this. Which do you want more? To be off the Asacol or to compete? Sorry, I know it’s a tough love message but I feel pretty strongly about it.

    My other advice is that you have to do all the “body maintenance” stuff even more rigorously and consistently than your competition. Your nutrition has to be 100% solid since you won’t absorb as many nutrients. You need to sleep as much as humanly possible to allow your body to recover from your workouts and have the energy to battle your illness. You will also need to take extra care to eliminate stress (talking about the mental kind here) as it does all sorts of ugly things to a healthy body, let alone a compromised one. Pay attention to your energy levels and consider blood work if you feel excessively fatigued as you could be fighting anemia or any number of vitamin deficiencies.

    Your dreams are still possible. Don’t ever give up.

  5. Brittany
    BrittanyMay 3, 2012 at 8:51 am #

    Hi Heather!

    I can relate to what you’re going through. I was diagnosed in August 2011 at the age of 23. I consider myself as an athlete as well. In May 2011 I competed in my first figure show, which is similar to a bikini show but requires a more toned, muscular body. I believe the intense diet and training I put my body through is what triggered my UC. I thought my life was over! The one thing I loved to do, exercise, was what triggered this horrible disease to make itself present. I couldn’t understand why it happened to me. I eat healthy, exercise, and only drink occasionally yet I have UC. On top of my UC I started to get horrible arthritis in my joints to the point where sometimes I couldn’t even walk. That definitely put any form of exercise on hold. My doctor at the time was of no help and would just constantly change my medications. I figured that since he wasn’t going to help me I’d help myself. I read everything about UC that I could get my hands on and tried eliminating certain foods from my diet until I came to the conclusion that gluten was causing my arthritis. I am now arthritis free and back in the gym! However, I have noticed that when I’m having a flare cardio just worsens the condition. The whole point of my story is to say that I understand. I don’t know if I’ll ever be able to compete in a figure show again because of the stress it puts my body through. Also, I hate taking medication too, but it has helped me to get back in the gym and do what I love. So listen to your body. It may not be perfect, but it’s the only one you have. I have decided that if I can’t get back in to competing in figure, then I’m going to try to find something else that I’m good at and make that my passion. I hope this helped you out.

  6. BradyMay 3, 2012 at 9:13 am #

    Hey Heather, sorry your dealing with this. I found myself in a similar situation when I was diagnosed with UC in 2010. I love to work out and play sports, but when I would have a flare up, I would be too fatigued to work out. I am a big fan of taking nutritional supplements for my UC. Best things that have worked for me are Aloe, and Omega 3’s, and an easily digested multivitamin. Changing your diet is equally as important, no caffeine, no raw fruit or veggies, no spicy food, no alcohol, no pasta or marinara sauce, and no dairy. Sounds pretty limited but those things can cause inflammation. I found that when I did this, that I could exercise, and exercise can help your condition. People with UC tend to internalize emotions at times and it causes your intestine to eat itself from inside out. Working out for me has always been a great stress reliever to get rid of any thing I was holding in. So basically try some supplements, change your diet, and listen to your body, and you’ll be training in no time. Hope this helps!

  7. VickiMay 3, 2012 at 9:32 am #

    Hi Heather

    Well, I know exactly what you’re going through. I’ve been in remission for one year and now I’m in a flare again. It seems as soon as I push my body hard through training (I’m the cyclist Adam mentioned in his comment) my body pushes back with a flare.

    I am having similar feelings as you – that maybe my days of serious elite cycling competition are behind me.

    I take Asacol regularly (3200 mg/per day) and now that I’m in this flare I’m taking 4800mg/per day and I’m also on Cipro and Flagyl – my doctor wants to put me on Prednisone but I’m avoiding it.

    I’m gluten-free and dairy-free and like you I avoid processed food, junk, etc.

    Now that I’m in a flare, I’ve switched to a low fiber/low residue diet. I don’t enjoy this because I really like to eat fruits and vegetables.

    I really don’t know what to say except – I know exactly what you’re going through. Have you tried VSL#3 – this probiotic has been effective for some. Also maybe the SCD diet will work for you – thought it is hard to get adequate calories – particularly as an elite athlete.

    Hoping you start to feel better soon. It might also be worth posting on the Crohn’s and Colitis Foundation of America website forums – I find these forums very useful.

    take care,
    vicki

  8. Heather
    HeatherMay 3, 2012 at 11:39 am #

    Thank you all so much for the comments. It really does help knowing that everyone on this site actually DOES understand, unlike, say a good friend who says they can relate even though you know they can’t because they don’t have UC.

    Vicki, I admire your athletic ability with this disease. I hope to be at a professional level one day but I haven’t yet found a way around this disease yet. I’m so sorry to hear about the tough times you have been through but hopefully the worst is behind you.

    Dawn, your suggestion of being on a maintenance dose of Asacol during intense training is an excellent one. I will mention that to my doctor. I like my doctor very much but he, like most docs, only wants me to take Prednisone when I flare. Since Asacol works for me, it might be a good idea to take a low dosage when I hit what I feel is the breaking point in my training. It helps so much to hear encouraging from others to never give up. It is so touching.

    • anthonyJuly 26, 2012 at 6:21 am #

      Hi heather,
      my name is Anthony and I an 24. I was diagnosed a year and a half ago this time. I was really frustrated because I was and still am a very active person. I participate in many long distance runs as well crossfit. I am currently changing my eating to Paleo. I hope it will help reduce the flare up. But I believe it has to be the alcohol because I have been well until recent when I went to Vegas with my friends for their bachelor party and drank a few rounds. I know exactly what you are going through. Also, try to find a stress reliever. Breathing techniques can help a great deal. Good luck!

  9. umaMay 3, 2012 at 7:48 pm #

    The red wine may be the culprit. You must try avoiding it. The fact that Asacol puts your flare into remission speaks a lot about your body’s good condition. You must attribute it to your athletic ability.

    Good luck and happy running. I am sure you can run many marathons.

  10. AidaMay 4, 2012 at 6:57 am #

    Hello Heather:

    I read you have probiotics.

    I just wanted to suggest other brands that were recommended to me. Sometimes like medication, some brands work better than others.

    Here they are:

    According to one nutritionist I consulted the best in the market are from http://www.natren.com
    According to my sister’s acupuncturist Dr. Ohhira Probiotics (product form Janpan) are the best http://drohhiraprobiotics.com/

    I have tried both and in my case Dr. Ohhira’s worked much better.

    Natren (powder) need to be refrigerated and Dr. Ohhira (gel capsules) do not so you can take them easily anywhere.

    This site sells Dr. Ohhira’s Probiotics at a better price than the official site:
    http://www.crohns.net/page/C/PROD/OMX1030

    EXTRACT FROM THE WEB PAGE

    Regular consumption of Dr. Ohhira Probiotic Formula is strongly recommended for people with digestive challenges like Crohns disease, IBS, leaky gut, peptic ulcers, bloating and heartburn (GERD), ulcerative colitis, constipation or diarrhea, as well as those suffering from yeast infections like Candida albicans.

    Ohhira’s Probiotic is also recommended for people on weight management programs that utilize certain natural products, such as psyllium and other colon cleansers, as they tend to strip the colon of the good bacteria.

    Each of Dr. Ohhira’s Probiotics’ ingredients is readily absorbed and used for various important functions of the human body, thus enhancing proper cellular functions and strengthening the body’s autoimmune system.

    probiotics help to manufacture specific vitamins,
    ***probiotics regulate peristalsis & regulate bowel movements,***
    probiotics assist immune functions by keeping the colon at the proper pH level,
    probiotics break down and rebuild hormones, and
    probiotics help to normalize cholesterol and triglyceride

  11. ChrisMay 4, 2012 at 8:10 am #

    Up until 3 years ago, I used to train and run 10ks, but I realized that my uc would flare up within 20 minutes of my runs. I grew tired of struggling with the urgency to go to the bathroom every time I ran so I started looking for another sport that would fill my competitive void. I started to do crossfit, it’s great because most of the workouts are under 20 minutes and extremely intense. It so much less taxing on the digestive system than long run. The crossfit community also embraces the paleo diet which is basically scd. They also have many regional competitions, so you can continue to compete. I highly recommend that you look for a good crossfit gym in your area. In order to control our uc symtoms, we know we have to adapt and evolve accordingly, so long distance running might no longer be what’s best for you.

  12. JoshMay 4, 2012 at 9:12 pm #

    Heather,
    As a runner who has had to a give up on quite a few races (5/10ks, not anywhere near your level), I can relate. Your overall question regarding the relationship between running and UC is interesting to me. I have been running for 20 years (34 years old currently) but only had UC for 2, and I often wonder about whether or not my running is making it worse. After giving up so much (alcohol, sugar, strange/exotic/enjoyable food) for this disease, it is so hard to give up running. I have found that VSL #3 and a whole lot of routine make it possible to run, but I have had to dramatically reduce my distances. I give you credit for doing what seems impossible to me, and hope that you continue to post. Thank you for your inspiration.

  13. EricMay 10, 2012 at 12:13 pm #

    UC sucks!
    Heather I feel your pain. I have had UC for over 20 years. During many of my remissions, I would take up running (again), get back to 10K, then flare. Extremely embarrassing as you can imagine. This cycle has repeated maybe 6 times (the running times, not the flares, much more often).
    If you or anyone has the solution, please share.

    Chris, I like the crossfit suggestion… I’ll look into it.

    Best Wishes

  14. TimMay 13, 2012 at 9:27 am #

    Hey Heather,

    Long distance runners without UC sometimes get “runner’s trots” or “runner’s diarrhea” because of improper nutrition. I’ve also read the prolonged high blood flow to the muscles causes lack of blood flow to the intestine which causes it. It’s kinda funny, most of these people worry and think it’s a big inconvenience if they need to stop once for a bathroom in the middle of a marathon…. they have no idea how bad people with UC have it.

    Your diet seems crazy strict for an endurance athlete, what do you eat for complex carbs? Sounds like maybe you can’t have any which really sucks since it’s so important for an athlete. I’ve been experimenting with diet too and finding it really difficult and frustrating to pass on foods that i know are healthy, but could potentially make my flare worse( i.e. beans, oats, nuts, seeds, dairy, brown rise, whole wheat pastas, etc.).

    I’m not at your level, but I’m training for my first Marathon and Century Bike ride and can relate to your story. I find pushing myself hard in training usually makes my symptoms worse. My marathon is in 2 weeks and my flare up is the worst I’ve ever had. I was thinking about dropping out, but instead I did a hard 22 mile run yesterday, my final LSD run before tapper. I had to stop 6 times, but i finished the run. I wanted to prove to myself that even in this flare up I could go the distance, although my time wasn’t really what i was hoping for due to the stops. They often say you need to be flexible with your marathon goal… If you show up to the starting line and it’s 90 deg, you can’t expect a PB. If the course you’re running has some huge hills, you can’t expect to get a qualifying time for boston or olympics or whatever your goal is. If you get diagnosed with UC, you can’t expect every marathon to go smoothly. Remember you run because you enjoy it, do the best you can given your situation.

    Since you’re sponsored and at an elite level, I understand this is easier said than done… Hopefully with time you can find a strategy that combines diet and medication that will give you the ability to train and run at an elite level again.

    For me, I’m trying another round of Canasa (which has no negative side effects i can see) and sticking to a lower fiber diet, no dairy, no alcohol, no caffeine, no raw fruits and veggies. Instead eating a lot of white flour or white rice products with lean meats and cooked veggies.

  15. MollyJuly 14, 2012 at 12:16 pm #

    Heather,
    I am so sorry to hear about your the struggle you’ve been experiencing. My husband was diagnosed with UC a month before we were married in 2004 and flaring up to 2 or 3 times a year. He was taking 28 pills a day including Colazal, Predinose, and Fish Oil, but would continue to flare. We went to Duke and saw a specialist (who told us we were doing everything we should be) and then upon returning home we consulted with our gastro about other options. He sent us to a colorectal surgeon and in July of 2005, my husband underwent J-Pouch surgery whereby they removed his entire colon (except for a very small piece and created a pouch (out of his small intestines) and reattached it to his rectum. In most cases a temporary ileostomy is created in order for the pouch to heal and then reversed after approximately 6 weeks. However, in my husband’s case (and I’m not totally sure how it is determined) we knew it was possible that he would come out of surgery with an ileostomy, but he did not. He came out with about 20-25 staples from his belly button downward and we were in the hospital for about a 5 or 6 days.

    He is no longer on any medicine.

    Since the surgery, we have not returned to the gastro or to the surgeon, not to say we won’t, but we have been very blessed.

    In the past year (since last October), he has run in 5 marathons and two 50K trail runs. He runs about 40 miles a week and while hydration is the biggest factor, running keeps him sane!

    I think we have figured out that you have to figure out what works for you. Everyone with U.C. is very different. You can choose to live your life worrying about every piece of food you place in your mouth or you can live……

    Sharing your story helps everyone…Thank you for your courage. You’re an inspiration to many!

    Molly

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