Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Elite Athlete with Ulcerative Colitis

I’m pretty happy I found this website as it is the most positive website I’ve found about ulcerative colitis. I was diagnosed a year ago and I spent too much time reading very negative and depressing accounts by people struggling with ulcerative colitis. This is just not the best path for someone who is newly diagnosed – especially if like me you have to wait four months to talk with a gastro doctor….

As my title reads, I’m an elite athlete – a member of the Canadian National Cyclo-Cross team. So this means I spend a lot of time riding my bike, racing and recovering from racing. When I’m in a ulcerative colitis flare, this can be a bit tricky. The most frustrating aspect of this is that it can sometimes take over half an hour before I can get out the door… I’m constantly having to dash to the bathroom before I can get out and ride. The fascinating thing is that when I’m racing and training, my flare literally disappears. I don’t have to hop off my bike in a panic looking for somewhere to go to the bathroom. It seems as though my digestion system shuts down completely when I ride. So in this way I’m lucky. But it is hard to get in the adequate nutrition and to stay hydrated to train and race properly.

Last year I went on a low residue/low fiber diet during my first flare. This seemed to help. And now I’m in my second very big flare and this tactic has not worked. So I’ve resolved to just eat what I want (though I’ve dropped the flax seed and all bran from my diet…). It is strange some days I feel good with minimal bathroom trips and not a lot of blood in the toilet. But then other days, I can be forced into the bathroom 30 or 40 times. Sometimes I’ll eat and then within 30 minutes I find myself trapped in the bathroom. Other times, my body is fine. And it doesn’t seem to matter what I eat.

I’m interested in hearing from other athletes and how they handle their ulcerative colitis when training, competing and in general life. I find the worst part of this disease is the uncertainty – I never know when I’ll have to go to the bathroom and if I’ll make it… It is pretty downright embarrassing at the age of 38 to even admit to my husband that there are more times than I’d like to remember when I haven’t made it to the toilet in time…

I’ve been in this flare for four weeks now. I’m taking 8,000 milligrams of Salofalk orally. I was using a Salofalk enema but I’m not able to keep this in my body. I’ve been on this new round of medicine for two weeks now – it is hard to know if it is working. I don’t think the flare is getting worse but I don’t think it is getting better either.

Anyway, I’ll try to post regularly here with how things are going and I’m looking forward to connecting with others going through the same thing. I also have my own blogs where I write about my daily life and bike racing – often I’ll write there about life with ulcerative colitis. It is important that we put a public face on this disease and do our best to raise awareness. I am a Canadian spokesperson for the Crohn’s and Colitis Foundation of Canada and on World IBD Day I was on the A Channel talking about IBD and my experiences.

Well, I’m off. All I can really say is that we need to stay positive and I always count myself lucky since I’ve never been admitted to hospital or even had to visit the emergency room. Thanks for creating such a welcoming and friendly site.




athlete, bathroom, bike, colitis, diagnosed, diet, fiber, flare, newly, Ulcerative

48 Responses to Elite Athlete with Ulcerative Colitis

  1. Comfy Tummy June 16, 2010 at 7:55 am #

    Have you tried the Specific Carbohydrate Diet at all? I discovered it a few months after being diagnosed with severe Ulcerative Colitis. I’ve been symptom free and med free ever since. I also used natural supplements like L-Glutamine, Fish Oil, Liquid Acidophilus, and Olive Leaf Extract, all to help get my intestines back into a healthy balance. I’m super active, travel often, spend hours each week in the gym or out hiking, cycling, etc. and have a normal life without the slightest thought about my digestion. Please visit my blog at http://www.comfytummy.com for more info about the diet, etc.

    • Richie arce February 18, 2013 at 10:49 pm #

      I have been on the scd diet for three months now. I am 12 years old so it is very hard to see your friends or family eating everythinh that you are not able to eat. It is a frustrating diet. I am currently in a flare up but is not beacause of the diet … Its because i caught a bacteria

  2. Milka July 3, 2010 at 7:14 am #

    Wow you said it best…especially when you wrote about just being diagnosed and reading about depressing things. When I was diagnosed I read all I could find on UC and it spiraled me into thinking I will never be able to function away from a bathroom yet go to work. Since then, I have found great people to talk to and am still learning how to cope with things. It is so interesting that your body almost goes into remission when on the bike. Have you asked any doctors about that? Not sure if you were ever on prednisone but I was last year and am still finding it tough to get my energy and muscle strength fully back. I used to be in fairly good shape…ran recreationally with the dog and biked(not to your extent of course!)but am curious if energy is an issue or even recovery time and soreness after you compete? But good for you for being able to continue to do it!
    I agree this site is such a welcome to anyone with UC…also I have found some great people on twitter! We do all have to put it out there and do our part to spread the word on IBD…I know I try to!

  3. Kelly Lance November 18, 2010 at 2:16 pm #

    I just came across this posting which was written five months ago. I am an amateur athlete, I run half marathons, and other local fun runs but I was diagnosed with colitis, and I have Chron’s disease in my family history, so the doctor scared me into thinking this could be the early stages of Chron’s. Great! Thanks doc!

    When I became really sick I stopped all physical activity completely- mostly because I had a really hard time trying to leave the house and the toilet. I also read, like the above postings said, a bunch of depressing sites about the disease which made everything so much worse. I believed I could never do anything active again.

    It has been 8 months since my diagnosis and a few months of going on the SCD. I took some drugs in the beginning but I really don’t like medication so I researched diets and I am so grateful to have found the SCD, it is truly a life saver. I am now starting to run again. So far I feel good. One of the activities that I did keep up throughout my illness was hiking. Like the original post by vickith, I too experience a complete rest of my bowel while being active. At first I thought it was just being outside in nature, which that very well may help, but now I think it does have something to do with turning off the digestive process. I do know from reading about running that that happens but it was not the case when I first became ill with an extreme flare-up. I was running and had to find a bathroom immediately or a bush because I was incredibly nauseous too.

    So now whenever I have a bad flare (mostly because I get bored with the diet and start to experiment) I make a huge pot of Elaine’s SCD chicken soup and eat that for days. It is really good to have after a run too. I am really curious of how my progress of running and not consuming any carbohydrates will go. That is what I was initially doing my search on when I found the above posting. I would like to hear how no carb and no sugar athletes do it. I still go to all the races with my husband and everything they serve at all the rest stops are energy foods and drinks that are full of carbs and sugars. I suppose when I get to that point I will have to make my own.

    I can tell you that Coconut water is really great, especially when you blend it with berries and a little honey. For some reason I can’t eat bananas, but that would be good too. I wish I could find an almond milk without illegal substances in it because that would make an excellent energy drink too. If anyone has any info on this or other energy type drinks or food for people like us I would love to hear about it.

    Thank you for listening and I look forward to reading more posts.

    • mel June 26, 2011 at 12:31 pm #

      Hey Kelly

      Just a short note…you can make almond milk at home! Just blend almonds with enough water to cover. Strain and strain again in cheese cloth if you like (i don’t bother). THe leftover almond pulp is also a bonus and can be used in yoghurt and other recipes. Once you have the milk sweeten with honey and voila! Because it lacks preservatives it doesn’t last as long in the fridge. I tend to make small batches.

      Good luck!

      • Nyree May 6, 2012 at 10:33 am #

        Hi: I just read that Almond milk inteferes with the Thyroid. I had been drinking a lot of it but my Thyroid went out of wack. Could just be a coincidence, but I’ve switched to So Delicous coconut milk and yoghurt.

  4. Mike February 16, 2011 at 8:12 pm #

    So i was diagnosed in 2001 and have been dealing w/ for many years now and have tried about everything. I’m also a athlete (competitive mt. biker, triathlete, marathoner, and paddler) so UC shut me down for several years. A few things I have been learning. Don’t listen to your GI, you need to take control of this yourself and the only way to do it is through diet modifications-it took me 10 years to learn this, specifically SCD. If i had stuck w/ it 7 years ago i wouldn’t have had symptoms for so long. I’m a vegetarian so the SCD was quite challenging. My other suggestion is to first detox/cleanse body of any parasites, fungus, bacteria, etc. We all have these, especially if you have never been tested for these or done a fast/cleanse. I would also suggest a food allergy test to see what foods are aggrevating your colon (IgG and IgE). Once you get this going then start the SCD immediately, you can’t do it half ass you have to commit and once you see improvement stick w/ it!!Once symptoms abate you can add more foods. As an athlete bannanans, dates, etc. but i would buy the “honey stingers” like GUU and i just bought something called “elete” out of UT thats a sports drink additive for endurance athletes-no sugars. Those 2 things should be good for trainning.
    Finally you need supplements L-glutaamine to heal colon, Vit D (immune), VSL3 probiotic w/ good research on UC folks, Iron (since bleeding) and probably do some B12 shots. Pick up a meditation practice and think positively-the mind is very powerful
    Find a good alternative medicine doc and someone who practices EDS (electrodermal screening), unfortunately you GI isn’t going to help much. You need to take control and stay w/ the diet (no carbs/sugars), supplements etc..

    good luck, i’m trainning for my 2nd trail marathon now.

    • isaac July 1, 2013 at 5:09 pm #

      i just read a post of youurs from a few years ago about scd and endurance excercises can you email me your diet for training @ isaacnayman@gmail.com

  5. Kerith March 8, 2011 at 9:03 pm #

    Thank you, that’s great. Just finished my first Tri and realized I’ll never pull off Wildflower Long (1/2 Ironman) without drinking something besides water. Part of my UC is asthmatic reactions that are quiet, I just start fading to black. This has made me so very nervous of any food or additives that are unknown. I am going back to the SCD as that was the best and totally recommend Nordic Naturals ProOmega in addition to your suggestions (3000 mg daily if can). I do not do their meds and learned the GI folks are at a loss besides the diagnosis and belief that a cure is a no go. I do no gluten, no sugar ever – even if off the SCD diet – the wildest I get is corn and rice. I started with severe UC and am way better now, no cramping, normal except for blood every few weeks.

    Will try Elete and running some tests : ) on Hammer products this week (Perpetuem & Electrolytes) – here’s to hoping : )
    Stay Strong!
    & Thank you for posting!!!

  6. Aletha May 23, 2011 at 11:35 pm #

    I find this part of your post quite interesting: “When I’m in a ulcerative colitis flare, this can be a bit tricky. The most frustrating aspect of this is that it can sometimes take over half an hour before I can get out the door… I’m constantly having to dash to the bathroom before I can get out and ride. The fascinating thing is that when I’m racing and training, my flare literally disappears.” I race motocross (ATV), and have been experiencing my first flare mostly likely because I was prescribed antibiotics for bronchitis. I had been trying to get my UC under control before racing season but am still not in remission. I experience the same thing before a race. I make sure I eat something lite 3-4 hours before I leave, and then keep running back and forth to the bathroom. No more solid food after that. Once I race, no problems and I usually don’t have any symptoms the next day. I rely on sports drinks, and protein shakes during the race. (I’ve heard that sugar is a problem, but artificial sweeteners seem to bother me, so I mix the two.) This is contrary to what I have been reading. Much of what I have read states that strenuous exercise increases inflammation which makes the UC worse. I raced a 50 minutes cross country style race this past weekend. I felt horrible when I got up, went through the usual 3- 4 hour bathroom ritual and was almost afraid to leave the house. I survived the hour drive to the track, raced the full 50 minutes and had no problems. Felt fine the day after as well.

  7. Mel July 7, 2011 at 8:57 am #

    I have another question for people… i’m training for a marathon in the fall and i feel like i’m not eating enough carbs. Normally I tend to stick with yoghurt and nuts for breaki, salad and cheese or protein for lunch, veg and protein at dinner and fruits/veg for snacks. I cheat once in awhile with no problems when i’ve been flare-free for a while but this tends to be my MO. I’ve experimented with adding quinoa to my salads and that seems ok.
    But I still find i’m a bit sluggish by the afternoon runs. I bit the bullet and ate pasta last night and have been crampy all morning…sometimes i just have to remind myself!

    So what are the best sources of carbs that i can supplement my diet with? I was thinking of just buying frozen squash and adding it to all meals. Is this enough? I want to make sure i have enough energy for all my runs…especially since they are starting to get long now.

    Any help would be appreciated!

    • Jennifer August 22, 2012 at 6:45 pm #

      Mel, to be honest I’m not sure how to be an athlete and be on an SCD diet. You definitely need carbs to replenish your glycogen stores that get burned up with exercise! Otherwise you’ll just burn muscle… not good. I’ve researched the “Paleo for Athletes” and I’m trying to work my way towards that… they advocate carbs right before, during and after exercise, but the rest of the time the recommendations are much like SCD. Sweet potatoes are recommended as a better source than grains.

      If you were crampy after pasta you very well might be gluten intolerant. I suddenly became gluten intolerant with the onset of UC, so I do sweet potatoes, quinoa or rice around my workouts. I’ll also do “overnight oats” for breakfast. (mix 1 c gluten-free oats with 1 cup almond milk, raisins, honey, a couple tbsp of yogurt, and 2 scoops protein powder… pop in the fridge the night before, and ta-da, you have ready-made breakfast for early morning long workouts.)

      And even with all those carbs, I’m still not recovering after hard workouts. I just emailed my coach today (I’m training for a half ironman) and she said, “you are not eating enough carbs.” Argh! What to do….

  8. Vicki Thomas July 7, 2011 at 9:44 am #

    HI Mel

    Well, I’d have to agree – you need more carbohydrates. This is something I’ve struggled with as well. I find that dates are excellent for carbohydrates and make a great snack before a ride or even on the bike. I eat quinoa, corn pasta, barley, and millet – all of these are gluten-free and I find are easily digestible. During the race season I’ll often make a “rice pudding” – cook brown rice in water and unsweetened chocolate almond milk, add in a chopped date and banana for sweetness and a bit of peanut butter for creaminess – this gives you everything you need: carbs, fats, protein and it is very tasty. Squash is a great source of carbs but you have to remember that you are an athlete so you need a little bit extra.
    I hope this helps. Also, what are you drinking when you run – have you thought about adding some energy drink powder to your bottle? I don’t know where you live but the Clif Element C bars (gluten-free and made of fruit and nuts) and the Clif Shot Bloks (gluten-free and a top-notch source of carbohydrates) – are excellent – I eat this during rides.

    Let me know what you end up doing.

    cheers,
    vicki

    • mel July 7, 2011 at 5:12 pm #

      Thanks for your reply Vicki! A lot of what you suggested isn’t SCD safe though…rice, corn, barley etc. I try to stay away from those which is why i have issues with carb replacement. Also processed energy drinks or gels have a lot of sugar…definitely not SCD safe.
      Right now I drink water and cheat by buying some kind of gel or what not. I am waiting to get an electrolyte liquid in the mail though that has no sugar. THinking of using that with honey.

      Don’t get me wrong…i do ‘cheat’ but i find that my gut gets irritated with some of the gels and other running supplements etc so looking for alternatives.

      I also drink coconut water which isn’t scd safe either but i find it helpful and works for me.

      Thanks!

    • Joan October 28, 2012 at 12:52 pm #

      Thanks so much for the positive posting, Vicki. I was diagnosed last week, but my symptoms started a couple of weeks befor an endurance road race 206 miles, that I did anyway and podiumed and got PR…I didn’t feel that great first 140 miles, but then felt pretty good and had strong finish. Three weeks later had the diadnosis UC. ‘ve been fretting that this active life will be done for me. All the postings I’ve read so bleak. I love that you go out and race anyway, though the mornings are complicated and unpredictable. That’s what I’m realizing, the impossibility of cementing associations…I did this, so that happened. It all is seeming random. Anyway, thanks for the inspiring post

  9. Vicki Thomas July 7, 2011 at 6:37 pm #

    Hi Mel

    Sorry I didn’t realize you were on SCD. In that case dates, bananas, oranges, apples are your friends. Try making super smoothies with these. There is a great recipe for date squares which could be SCD legal if you sub out the oatmeal: http://ohsheglows.com/2011/03/28/5-ingredient-no-bake-vegan-date-squares/ These are super tasty and an excellent source of carbohydrates.
    Look on the Vega website as well for recipes to make your own energy drink – if you can’t find any – let me know and I’ll send you one.

    vicki

  10. Jason Amoriell August 9, 2011 at 7:10 am #

    I just found this website. Still awaiting biopsy results, but the doctor suspects UC. I noticed all of the endurance athletes on this site, which seems to coincide with the doctor’s theory at the present time that my longer training blocks (amateur bike races/triathlons) may have caused a colitis due to the lack of bloodflow to the colon since the bloodflow would’ve been going to the legs. He said NYC has a spike in colitis with its runners after the NYC Marathon.

    Has anyone else received a similar prelim diagnosis or treatment plan for how to do endurance events without inflaming the colon? Looking at the website, diet is the common theme, but it also looks like the website is sponsored by a product which is always a red flag in terms of bias.

    Thanks.

    Jason
    Plattsburgh,NY

  11. Vicki Thomas August 9, 2011 at 4:17 pm #

    Hi Jason

    I’m really happy you found this site. I’ve found it to be a very good resource.

    My doctor has never suggested that the ulcerative colitis is tied to the endurance sport. I am seeing my doctor on Friday – so I’ll try to remember to ask him.

    One diet that is very popular is the Specific Carbohydrate Diet (SCD) – I tried it. I couldn’t handle it as an endurance athlete. Simply not enough carbohydrates to fuel my training and recovery – also it is very time-consuming at the beginning.

    I have cut out dairy and gluten from my diet – I don’t have recognized allergies to these (apart from a super runny nose when I consume dairy) and I do feel much better without them in my diet.

    I don’t follow a particular diet when I’m in a full remission – I basically eat what I want (except gluten and dairy) – I do tend to stay away from leafy greens – lettuce and spinach – I find these hard to digest. When I’m in a flare I go completely low residue/low fiber – white rice, eggs, chicken broth, rice cakes, Ensure, puffed rice cereal – yes very bland and not very nutrient rich (hence the Ensure). As I start to feel better I add in canned vegetables (super soft) and canned fruit.

    Regarding medication – I’ve been on steroids (don’t work for me), Imuran (made me very sick), ASA enemas (no longer take these) and antibiotics. I’m now on only Asacol and have been for quite a few months – I feel very good.

    As an athlete it is very important that you pay attention to your Iron, White Blood Cell, Red Blood Cell, Vitamin B12 and Folic Acid levels – if any of these drop – the extra stress you’re putting on your body will make you very sick and fatigued. I was getting regular iron infusions at the hospital to help get my iron levels up and get me back to feeling good.

    Let me know if you have any other questions. Here to help!

    cheers,
    vicki

  12. gianluca August 14, 2011 at 1:13 am #

    hi everyone,
    i’m italian so i apologize for my english.
    i ve UC since i was 13yo and now im 40,and i can say that UC is different from one another.What it works for me it cant work from you and viceversa.The SCD diet could never work on me but Vicki diet it works fine when i ve flare (like now).At the moment i take azioteprina(10 years),salazophirina,asacol anema (once x day).i eat rise with lot of parmesan ,and the evening fillet with toast.it’s working good.
    i ve had to stop my training as triathlete and at the moment im just resting , putting all my previous efforts in the drains!But im scare to go back training.I noticed when i was running with high heart rate (wasn’t feeling good already) had to stop because need to go toilet,it means that hard training (uphill running,or speed work) make your UC worst(only on running tough).
    I ve never take in consideration my iron levels from now on i will.
    Everyone is the first doctor of himself,i know that UC is a mind-stress game but still can’t sort it out!

    Thanks
    Gianluca

  13. Jason Amoriell August 21, 2011 at 4:00 pm #

    Thanks for the reply, Vicki. In terms of paying attention to your ” Iron, White Blood Cell, Red Blood Cell, Vitamin B12 and Folic Acid levels”, are you getting those measured during the lab work that’s part of your physicals or are you doing something else to pay attention to them? Was it just something to monitor when you weren’t feeling well? My follow-up visit is tomorrow, so I should get more answers. Did you doctor say anything about the colon and legs competing for blood during long endurance events? Not much longer to cross season for you, so good luck with that–

    Jason

    • Vicki Thomas August 21, 2011 at 6:47 pm #

      HI Jason
      My gastro doctor has set up a weekly blood requisition for me at my local clinic so I have been going every week to get my WBC, RBC, hemoglobin, iron, B12 and folic acid measured. The B12 is good for six months – apparently B12 stays in your body for 6 months. I just saw my gastro doctor on Thursday and now I only have to go for bloodwork monthly. He didn’t seem to think there was any correlation between the colitis and endurance training. In his opinion it is because I’m an endurance athlete that I’ve only been admitted to hospital once. I talked to him about a vegan diet – with the idea being that meat is inflammatory – he said it is a good idea to cut down on meat but he stressed that it is with meat that we get B12 and plenty of iron. I’m not able to tolerate supplements anymore so for me it is important that I get everything I can from food. I don’t take in dairy anymore so I make sure my almond milk is fortified and I eat a lot of vegetables that are high in calcium (as well as almonds). Let me know what happens tomorrow – I hope you’re feeling better. Yep – cyclo-cross starts on Sept. 10 in Pennsylvania and then in October I’m off to the Czech Republic for a couple of races.
      take care,
      vicki

      • Jason Amoriell August 22, 2011 at 3:32 pm #

        Appreciate the info on your blood testing. I have an annual physical coming up with the GP, so I’ll check on getting those checked. Thanks for the details.

        Saw the doctor today. He’s still in the formation of the diagnosis process, but he clarified some things. The three possibilities that he has narrowed it down to are:

        1. a cecal inflammation caused by physical stress and dehydration from training/racing combined with proctitis from extended time on the saddle (Similar to what he saw when he was at Columbia University after the NYC Marathon minus the saddle issue).

        2. IBD

        3. Crohn’s

        He had me get blood drawn for an IBD Serology 7 test and C Reactive protein test to further narrow it down. I feel fine now actually. I was much worse during hard training blocks than race and recover periods, so I’m wondering if that’s tied to why the symptoms have cleared up. I’m going to take a look at my riding log for anything that jumps out.

        Let us know which races you do so we can follow you on cycling news.com

        Jason

  14. Michele September 28, 2011 at 8:59 pm #

    thank you all for the helpful information. I’ve have been dealing with infections/inflammation of other organs from meds related to UC, I am always tired/mental fog, but need to be on my toes. My doctors wanted me to consider Remicade, but I am really concerned about that med. I am on prednisone now and worry about weight gain due to the dosage. I really want to be keep my health and get back into things I used to enjoy. You are all very encouraging.

    Thank you for posting.

    Michele

  15. Paul December 2, 2011 at 9:43 am #

    Hi Michele,
    I’ve been on Remicade for 5 years now and it was the only thing that got my UC in remission. The doctors had me on the maximum doses of two other meds with no effect. The Remicade was the only thing that worked. I am also following a diet similar to the SCD and have weened off of all the other meds. With Remicade, I was able to start running again and I just completed my first half marathon last month. I haven’t gotten sick (colds/flu) either and I have two small children.
    Good luck!
    Paul

  16. Troy January 1, 2012 at 1:32 pm #

    I’ve had colitis symptoms for 3-4 yrs, “officially” diagnosed last year. I’m an active 43 yo weekend warrior. I do triathlons, 12 hr adventure races, mtn biking, road biking, etc. My flare ups seem to coincide with my training. When I’m not training and not eating well, I have no symptoms. My problems start when I’m training and preparing for a race. This, as you can imagine, is extremely frustrating. My diet isn’t a symptom causer when I’m not training. Has anyone heard of exercise induced colitis? It’s difficult to stay motivated to train when you feel like the training is causing the problems. Thanks for sharing.

  17. David January 10, 2012 at 6:02 pm #

    I was diagnosed with UC when i was 13 and now I am 16. Specific Carbohydrate Diet didn’t work for me. It actually had a reverse effect on me and I was basically wasting away. I found out that dairy and corn were my problems and went from going 25 times a day to 3-5 times a day. If the scd diet isn’t helping you and you think your going through the dye-off stage well then you might want to considered taking corn and dairy out of your diet. It helped me and I am sure that it could help most of you. UC is a slight set back to my sports but i make sure i eat small amounts of food before my games. I will be playing at a D1 lacrosse school in 2015. I also feel like the colitis kicks in when im training but I have conclude that it is my nerves about my season to start and im sure for the people in the marathons and triathlons that you are nervous and excited for them so i wouldn’t fret to much..

  18. Ti February 2, 2012 at 5:15 pm #

    First, this is a great post. I too am very much into sports and I’m glad to find such a group of people. I ran xc and specialized in middle distance track in high school and am (was) training was the IronMan 70.3 until this hit me early last month.

    I was diagnosed with moderate to severe UC throughout my entire colon. Currently I’m on 35mg Prednisone daily and 1200mg mesalamine. i *think* i’m headed into remission. I’m been on the SCD for the past week and things are looking better.

    The one thing about the SCD that concerns me is that it really limits the amount of carbs we can eat. I mean: no pasta and bread!?! (I’m breaking the rule right now and eating rice – no wheat or wheat flour). How many meals do you have to eat per day then to keep up? Should one up the protein intake as well?

  19. Richard February 10, 2012 at 8:01 am #

    I am also an avid cyclist but far from elite — just plod along for 5,000 or so miles a year, several century rides, and do at least a couple of week long self supported tours a year. Even when not in a full blown flair, it takes me 2 to 3 hours to get out of the house or to break camp in the morning. Makes it tough when an event has a 6 am start and I need to be out of bed by 3 am. So far been existing on Asacol and Prednisone but will be starting 6MP this week. Any experience with long distance endurance with 6MP? The anemia has me concerned.

  20. Collin February 19, 2012 at 9:17 am #

    Vicki,

    Its good to hear your story. I’m a Cat 1 roadie and Endurance MTBer. I had what I know know are smaller flare ups last season, which on occasion, really killed some races. Pulling over several times into the woods in a 100 mile MTB doesn’t do much for times, no less the extreme loss of nutrients and fluids. For about the past month, I’ve been suffering from a large flare up which finally forced me to see a GI. He eventually diagnosed me with ulcerative colitis. Right now, I’m dealing with the uncertainty factor you’re talking about. When you have larger flare ups, do you notice that training hinders or improves the length of the symptoms?

    I’m glad to hear of someone on the elite level who still competes at that level. This month has been an emotional one with the idea of backing off on cycling. I kept reading stuff online of people who were giving advise to marathoners to ‘make a map of where all the bathrooms are, bring TP, etc.’

    • Clark September 9, 2012 at 11:12 am #

      Collin,

      It was refreshing to find this thread, as well as your post. I too am a Cat. 1 road cyclist, and have been struggling with UC for the past 2 years. I am 28yrs old, small business owner, and Elite athlete – all while trying to manage this awful disease.

      I seem to get a flare up every 6 months and it generally lasts 2 weeks to 1 month in duration. That’s no training, little eating, weight loss, and no doubt, depression.

      I am now looking into surgery options as the pain has truly gotten horrendous throughout this current Flare-up.

  21. Johnny Gonzalez March 8, 2012 at 11:45 pm #

    I have recently been doomed my this horrible disease of UC. I am 25 and was currently a Personal Trainer and have suffered from dirreaha for the past year. Well finally I was admitted in to the er and spent the week there suffering. I was currently at 201 lbs with less then 12% body fat. In three weeks I dropped 25 lbs and with medication and the depression factor kicking in made things so difficult. I have been on asacol and predisone for about 3 weeks. Although ive done my research i still struggle to deal with this. I was in the process of competing in body building and now my dreams are postponed. My Days very and Im so confused and lost on how i need to eat and keep my body at good standings. Im normally fatigued and just in a slump. Im un able to work and depresssion sets in tremendously. I need personal help with users who are in my same boat. l stay away from gluten, wheat, and dairy. I just hate this so much. Its more difficult when individuals say they feel for me. No one understands or realizes how this place such a factor on your life. I just need guidence to make things right gain. I have been three days with minimum issures. How long does a flare usually last? i was hoping that someone could have some valuble infor for me.Also, is taking other steroids such as primo a good idea to help grow and maintain muscles? any tips would be greatly appreciated.
    f

  22. Vicki Thomas May 18, 2012 at 9:15 am #

    Hi Johnny

    Just seeing your post now. Really sorry to read about your diagnosis.

    How are you doing now?

    The length of a flare really depends on the individual. In fact most about this disease is different for each person.

    I have taken steroids and really didn’t find them to be helpful. Not to mention the crazy things they do to your body.

    I was in remission for a year but now I’m in a flare again… Looks like I’ll be starting Remicade soon and likely I will stop competitive cycling. Very frustrating but it seems like whenever I push my body hard, I end up in a flare. Pretty hard to be an elite athlete without doing the hard training!

    This is a very frustrating disease – particularly when you’re an athlete.

    Looking forward to hearing from you.

    take care
    vicki

    • vaggelees October 28, 2012 at 1:46 pm #

      Dear Vicki,
      I understand your concern. Me apart from being a pharmacist, I am also Greek rally champion. Just to pet you know that the thinking of the race.starting makes to go to the toilet. Rally driving is a stressful sport ny itself so you can imagine.although I used to train a lot with cycling and running nowadays I only do cycling as my knee+ankle joints are killing me. From my point of view I saw real improvement with immunosuppresant 6mp and sulphasalazine of high doses 4grams daily. Such doses are required for active stressed peoplit has been 7 years since I was diagnosed with uc. Today my bowelis in remission but my joints are bad, hence the doc added mesalazine alongside everything else.
      Hope I helped people. By the way I hope my 11 month son never gets emotional pain so he won’t end.up with uc.

  23. jennifer July 17, 2012 at 9:00 am #

    Hi, I’ve been dealing with UC for the past 3 months and trying to start training for triathlon again. I’m realizing that I’ll have to take the plunge and cut out all the sugars/carbs, so here’s what I’ve been doing:
    – CarboPro: Love this stuff. 100 cals per scoop, pure glucose polymers (which digest in the small intestine). I believe it should be SCD legal. (glucose is legal). Just mix with water and you’re good to go… although it needs a bit of flavor, I think I’ll shift to NUUN fizzy tabs which are sugar free and gluten free
    – Salt Sticks tablets for electrolytes should be SCD legal
    – Hammer gel: most flavors are just fruit, no added sugar (just 2g of sugar in a pack)

    I don’t know how you guys are able to eat dates… they’re full of fiber! I haven’t tried them yet but when I was healthy (pre-UC) I know I couldn’t eat fig newtons without getting a lot of gas.

    • Steve August 22, 2012 at 1:46 am #

      I am just taking a guess but I think your problems pre-UC with fig newtons were in part due to whatever else you may have eaten before/after them. Fiber can have an unwanted effect on the body, especially if we combine the wrong foods together(you were eating a cookie filled with fruit remember). ;) Been there done that with UC in tow(while trying to eat raw) and it was quite an eye opener.

      I’d actually love to hear how everyone is doing here if you all see this—especially Vicki since last you posted you were experiencing a flare. How are you doing?

      Myself I want to get back into training and working out. I realize I might not be able to push myself as much as I would like—but I also believe there are ways around it all, especially since we can find some of the best energy foods right in the ground we walk on. I’ve had the opposite experience so far when it comes to exercise. Provided I have the pep in my step, when I am out there especially on my bike, it is like my body forgets I am sick. The only downside is really hot days. It is not easy staying hydrated with a sick colon, because if you drink too much too fast a sick colon can’t reabsorb all that water like a healthy one can. It’s like a tight rope act. Drink too much and you pay for it…drink an inadequate amount and you can cause serious problems.

      To prince…there are a number of books that cover various diets. Be it eating raw which consists of lots of fruit, some vegetables, and nuts and seeds. As the name suggests, nothing is cooked or heated above 105F. The premise is to allow the natural enzymes in the uncooked food to aid in digestion, there by allowing the body’s energy to be focused elsewhere…eating differently is not what does the change. It is an entire lifestyle change…getting adequate sleep, learning to handle stress, drinking lots of water, exercise, etc. The raw lifestyle is strict but it does work…combining the right foods is essential to proper digestion and often a person eats less than they would otherwise because less calories are needed(digestion takes energy which adds calories).

      There is also the Paleo diet which I have never tried but people have suggested it in the past. It is somewhat similar to the SCD diet I believe but don’t hold me to that. The SCD plan restores the body’s natural bacteria balance—similar to the raw diet, eating correctly changes the way our bowels respond. The idea is to lessen the inflammation, thereby lessening the body’s natural defenses—excess mucus in the digestive tract—only then can proper digestion take place.

      I’m skipping quite a few bits…but there are many paths you can take and many people here who have knowledge about them—for example, you would hear about the wonderfulness of probiotics from Bev, Adam(the the guy who started this great place) follows the SCD, I’ve recently read about success with magnets from Rob, I read about Chinese medicine helping some as well, and so many other ways. It really all depends on what you feel you should try and seeing how it works for you. I myself have combined a few things—SCD, some principles from eating raw, probiotics(which I am getting through yogurt right now), I’m trying L-glutamine as soon as I get it in the mail, and I am pushing myself to be active a little each day. Rest is great from any UC sufferer but I have noticed if I am super lazy, I get down about things and that hurts me…where as if I stay active, I feel much better and my colon seems to be more calm.

      Anyway, to shortly answer your question…avoid raw vegetables if you are experiencing any UC symptoms. Raw fruits are okay, but eat them on an empty stomach so to speak. In other words, let your bowels relax and clear out a bit. If not, the fruit will cause discomfort. It will not get fully digested but will instead ferment, causing pain, gas, and maybe worse. If you eat it when things are cleared out, you’ll avoid all that. Try introducing one thing at a time. Bananas are great for UC suffers when they have brown spots on them. If you do well with those, try adding something less sweet like apples or pears—both without skins. The more sour the fruit, the longer you should wait to try it…as citrus-y fruits can irritate a weakened gut. Try them when your UC symptoms subside. In regard to vegetables…you can eat them but cook them well and eat them later in the day at least 3 hours after your last fruits. When your UC symptoms go away, you can try raw vegetables. Carrots, cucumbers peeled, celery, work well. If you have a juicer, you can make fresh fruit juice with vegetables added—like apple, pear, celery anytime(just beware it will cleanse your system so only do a little until you get the hang of it). If you eat meat, try to eat it with your last meal but not too close to bed. Avoid diary, grains, fried foods, etc. Meat causes inflammation and is hard to digest…hence only eating it later in the day.

      There is so much I could add but I said I would keep it short. :-O I rarely do so oops! If you have any questions, I’d be happy to help as I am sure anyone here will offer their knowledge. I hope whoever read this much is smiling!!!! Steve

      • shelly in maine August 22, 2012 at 12:21 pm #

        Great summaries and info! :-) How is your progress going? I wrote you on another post, but you may not have seen it. Shelly

        • Steve August 22, 2012 at 8:19 pm #

          haha. I don’t know Shelly. Sorry if I missed it. Sometimes posts of mine don’t show up right away…maybe they are too long? :) My progress…well, I’m trying SCD and I won’t lie. I was doing really well with following it as I needed to but I felt down in the dumps. No reason really but I did have some stress that I normally don’t have in my life—all taken care of now so all I need to focus on is me. I’m starting over fresh tomorrow and just taking this one day at a time. I was too over anxious before and was not really listening to my body. Like someone following a diet but not really being in the moment as they go through it so that you learn. But I’ve tried the yogurt I made and it is crazy tart but otherwise, I love the texture. Looking forward to see what that tastes like with some frozen fruit mixed in. I did notice after I ate it plain, although to be fair it could have all been in my head, that my body was surprisingly calm with fewer trips to the bathroom/less discomfort. I can’t imagine it make that much of a difference but I won’t complain if it does. Other than that, my other plan is to start exercising each day which I was doing and got away from. Personally, I just feel better when I’m active. The sun, maybe a little sweat, whatever…I just feel happy and its easier to sleep. Otherwise, I’m up all night. Oh, and I ordered some L-glutamine powder that I received today. I sorta have to figure out a dosage on that but I’ll have more of an update for everyone in a few days. What about yourself?

          PS…be on the look out for my story in the coming weeks everybody. As always, I wrote quite a bit. Now I know why I struggled to finish writing tests in time way back in high school. ;)

          • shelly in maine August 23, 2012 at 4:17 am #

            Hey Steve,
            Sounds good. Gotta be in the moment to really be aware of every little thing/changes! It sounds like a good jump start. I think you’ll will be pleasantly surprised by the power of the yogurt/probiotics. I’d Give it some extra time before adding the l-glutamine so you’ll know. Maybe the l-glutamine will give it the power boost you need. There’s also that other one that people have been talking about-astxanthin. All worth a try. Anyway, I was wondering if you had posted a story, but now I know! Your posts are very informative.

            My story… I posted a few weeks ago “Grimm Reaper UC..1 year Med free and counting…take that..” -not sure if you read that or not??? and a year before that…”Med free not exactly by choice”-(I won’t go into too much-you can check it out if you want) I have been Med. Free for over a year after a lifetime of UC-and every Med. I don’t do SCD, but something close, especially when having issues. I do the VSL #3 prescription strength and lovaza-omega 3’s-it’s been a lot of trial and error, but I managed out of a flare and iritis without meds!
            Thanks for your response…keep us posted. Looking forward to your story.

            Best and good health, Shelly

  24. Kathy August 5, 2012 at 2:36 pm #

    WOW–I am an athlete who has dealt with UC for 30 years and I have never found a site like this where other athletes share what we go through. I have been a marathoner, mt. biker, road biker and anytime I push my training to extreme levels, my UC acts up and I pay dearly. Like most of you here, I have been to numerous specialists and for years none of them talked about diet other than what “not to eat during a flare”–yeah, but what do I eat that keeps me from going there? I met a chiropractor in my area that has an excellent knowledge of nutrition and has helped me a lot, but not as much as I have learned today. I am so tired of mornings where I have a bike ride planned and am just to tied to the toilet to go anywhere and then to whiped out. I am going to try the SCD diet and the info you gave Jennifer on the products you use really helps. I use a lot of hammer products, but it is always a challenge to see what my body is going to cope with. This is my heavy season for cycling and I have been in this flare up since May–frustrating. Thank you all for some excellent information.

  25. prince choudhary August 18, 2012 at 11:36 pm #

    I’m student in b.tech final yr.i hv uc from march 2012,now i m taking meds of 2.4mg eveeyday,pls tell me what should i take food in morning and in lunch time and in dinner time,what should i take friuts and vegitables

  26. Vicki Thomas August 23, 2012 at 7:35 am #

    HI All!

    Well, I’m still hanging around but not as well as I’d like. Been in a flare since Easter. Just spent 12 days in the hospital. I’m now on a low residue diet, 40 mg Prednisone (5 mg taper per week), potassium and Asacol. I’m pretty wiped out these days. I was admitted to the hospital on August 9 when a colonoscopy revealed that my inflammation was worse than expected. Well, I basically detioriated in the hospital – problems with my veins and not being able to tolerate IV medication, a thrombosis (clot in my right arm) and poor nutrition in the hospital. The hospital was not equipped to feed someone with ulcerative colitis who is gluten and dairy free. Spent four days eating only jello and then was upgraded to only rice cakes with peanut butter (2 for each meal).
    I’m home now and sticking to a low residue diet (trying to get it as healthy as possible). I found this great page on the UCSF website that deals with nutrition and drug impacts – you might find it interesting. This is the first time I’d read that people with ulcerative colitis and in flares need to increase their protein intake. http://www.ucsfhealth.org/education/nutrition_tips_for_inflammatory_bowel_disease/index.html
    Right my now my goals are to get this flare under control so eventually I can get back to being active. I’m also dealing with some mental/psych issues – for so long I’ve been an elite athlete and now this is gone from my life. Tomorrow I’m meeting with my GI and hoping to get a referral to someone who can help me deal with living with a chronic disease and the losses it has resulted in.

    take care
    vicki

    • Adam
      Adam August 23, 2012 at 7:46 am #

      Vicki

      I’m bummed to hear this news, My wife and I talk about you often and we had been thinking you were off on a roll still. I wish the very best for you. Hang in there, you’ve been through a ton already, and gotten back to good health before. I’m sure you will be back feeling good once again.

      Wishing you the very best,

      -Adam

    • Steve August 23, 2012 at 10:47 am #

      Hi Vicki…I read your blog yesterday after posting. I couldn’t stop thinking about it last night, but I hope you know your story is an inspiration and you are such a strong person! On that note, thank you for sharing so much!! To find others who like to ride, who knew it would be UC that would be what allowed me to run into you?

      My story with the hospital stay was much like yours…I was so run down I needed potassium injections and the hospital food was a joke—I avoided most of what was on my tray because it all was bad for UC sufferers. The doctors were amazed I was still functioning at work given that most people in my situation would have opted to rest weeks prior. I can’t really speak to the mental side of things as an athlete, but I’ve been there in other ways. I hope you are able to get things under control so that you can be active again….don’t lose hope on competing. Granted it might not be exactly like it was prior, but there is always a way.

      I’m not surprised by the protein info…since our guts are weak and protein is used to repair the body…however, I’d just add a small bit I’ve learned through my nutrition studies and endless drive for health. Many mainstream nutritionists, bodybuilders, athletes, etc…believe high levels of protein aid in their performance…bigger equals better. However, other studies have shown excess protein actually weighs the body down and more simple foods are better for optimal performance. In other words, too much protein actually does harm and promotes damage to our bodies, perpetuating the cycle of repair over and over with no real benefit other than an overloaded, overworked system. I’ve seen cases of people cutting their protein and seeing changes to back this up. They may be smaller, less bulky, but they feel more energized and their bodies reap the reward. Something to ponder.

  27. CJ
    C.J. Roth September 27, 2012 at 8:17 pm #

    Hey guys. I dont know if anyone still reads this post. I am division baseball player battling uc everyday. I am a Freshman so adjusting to with it away from homr is hard but making due with it. One thing I have found to help me alot as an athlete is drinking alot of hot tea very slightly sweetened. I drink about two glasses a day mostly to just help relax in a high stress situation. This past spring I was extrememly ill should have been admitted but it was the middle of our season and making a postseason run so I couldnt give up on my team. After almost passing out during the last innings of one of my games I realized how serious this disease has effected me. I was only in recession for a bout a month and half. While I am still working out and practicing everyday Im finding it harder and harder to balance my diet. If anyone can help that would be great!

  28. Joel R March 2, 2014 at 6:33 pm #

    Hi Guys,

    Its good to see a site which focuses on athletes with this miserable disease. I am a Muay Thai Kickboxer with an extremely intense training schedule much like all of you. I was diagnosed two and a half years ago with UC and had a miserable flare which had me in the hospital two different times. It came up after my first fight and affected me for four months afterwards. After my second trip to the hospital, my GI put me on Immuran(immunosupressent), asacol, and some prednisone which was effective in getting me into remission. I took the immuran for about 10 months or so which kept my disease in remission, even with some of the bad side effects that drug causes especially in my sport when you are constantly in contact with others, like ringworm, warts, etc. I eventually got off the Immuran and was happy to find I was still in remission. I have been living life normally for almost three years now being successful in 6 more fights and continuing to train heavily. Unfortunately, I just fell back out of remission as the UC has hit again. Its only been a week since I have had symptoms, however this flare isn’t nearly as bad as the first one I had. No blood, just cramping in the stomach, unusual bowel movements, and being gassy naturally. I saw my GI and he put me on 20 mgs of prednisone combined with asacol I have been taking for three years, an anti-spasmodic(Levbid), and lastly Claritin. He says Claritin regulates the immune system especially with spring on the horizon. I am hoping this will help ‘reset’ my immune system as he says to put me back in a state of remission. The plan B would be start up Immuran again which worked well for me. I have been on the prednisone(which I will taper off of for four weeks), for three days now and am feeling a tad bit better. However i was on prednisone when I first got UC and after I started to taper down it came back terribly which led me to hospital and then to get on Immuran. I will attempt to go back to training tomorrow after a week off, hopefully to get back to normal life. I am 28 and still learning the intricacies of the disease which will surely be following me my whole life. From what i have read, it seems that this disease can come and stay present for a long time, but also be in remission for a long time. Let me know if any of you have acheived remission and if so for how long and how? Worried I will need immuran again and then the fear if that doenst work would go to something more serious like Humira or Remicade. Scared of that med. Would love to hear what was helped others and I hope my initial guide to get me in remission will help others. I will keep you all posted. Much love and hope!

    • christine Heaton July 22, 2014 at 2:40 am #

      I was diagnosed with UC 12 years ago. I am currently in hospital being treated with intravenous steroids but this is the worst flare up for 12 years. I would say I have had a flare up on average about every 18 months and they have varied in length and intensity. Sometimes I can nip a flare in the bud by using Salafalk enemas and oral asacol and life carries on pretty much as normal with symptoms controlled but not eradicated. A few times I have needed oral steroids but not for many years. I was on mercaptupurine for about 2 years after my diagnosis but have managed without immune suppressants since then. My theory is that the majority of the time I am well and to just treat the symptoms when they occur. I want to feel like a well person and live my life like one.
      Interested in this blog because about 2 years after diagnosis (aged 40) and coming from a completely non sporting background I took up running. I started with gentle jogging but soon got really into it joining a local running club and competing with increasing seriousness. I have now run races covering all distances including 10 marathons. I have qualified to run from the Championship Start at the London Marathon and ran a time of 3.13 which isn’t bad at the age of 46. I too find that once I am actually running symptoms do not usually trouble me although I am a very bowel conscious athlete ( but many are in my experience!). I eat well and rarely worry about what it is. I find when in remission my digestive system is as normal as the next person’s and when I am flaring all food and drink can cause a problem so I try not to worry about it. Running has helped me so much and being active and fit may even have helped me keep well. I am very interested in hearing about other fit and active people with colitis and how they cope. I have also read about many well known athletes who suffer from UC.

  29. Ana August 11, 2014 at 5:18 pm #

    Hi,

    I am not sure if people are still responding to this post, but if anyone is I am interested in your energy levels. I am currently training for my first sprint triathlon. I have UC and manage it through diet and natural remedies. I am like Vicki takes me forever to finally get out the door to train but once I am training I am fine. I am plant based and gluten free which has really helped me, but I really struggle with fatigue. Since I am training harder it seems to have gotten worse but I have good days too.

    Do you all suffer from severe fatigue? What do you do to combat it?

    Thanks for any responses

  30. Murray June 12, 2016 at 2:07 am #

    Hi there,

    To any Athlete out there, i am a triathlete struggling with UC.

    I have tried SCD diet for a short period of time but lost about 3 kg in two weeks and i cannot afford to loose much more weight at only 68 kg as it is.

    I wanted to know what to the other athletes eat and drink on the bike and while training. Sports drinks are almost all forbidden but when riding 100 km you need something to keep you going.

    I have also been told by my DR. to stop intense training and give the next half ironman a skip, which i am very disappointed about.

    Any advice would be great.

    Thanks

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