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.
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.
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!
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.
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!
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.
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!!!
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.
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!
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
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!
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
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
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
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
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
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
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
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
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
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.
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..
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?