Anyone out there racing with Ulcerative colitis? And if so, what have you found to be the best source of race fuel?
I’m on my way to my doc now so I can’t write a post but you’re not alone. I will get back to you later today. I did a quick search and found this old thread
http://forum.slowtwitch.com/gforum.cgi?post=2069389;search_string=ulcerative%20colitis%20;#2069389
I’m sure you will get some responses to your post, but this is a start. You can do a search on UC, ulcerative colitis.
Hang in there.
Cool thanks, my Doc doesn’t think diet plays a major role. But I am thinking different. Was bloaty and crampy all year last year during races.
HI OJ,
i have UC for the past 11 years, i stop taking medication, and no longer eat fruits, vegetables, raw food, and i am fine, it was a trial and error.
i no longer do long distance races, so i don’t worry about nutrition,
we had a thread on it few month back
OJ,
I’ve had UC for about 20 years. I started doing endurance sports about 10 years ago, so i’ve gone through lots of interesting experiences.
I’ve had some success with various fueling strategies. I’ve used the EFS gel and the EFS drink in lost of races, along with fig newtons, gu, chomps, etc… Thus far, I’m not sure I’ve had any more nutritional complications than other long course guys. In both training and racing, I make sure I have a plan for potty stops, but that’s the way it goes. Good luck.
Steve
JohnnyO could write a book on this topic. Do a search under his name you you can probably find lots of good info, or take a look at his website, Jonathan Caron.
I’ve had UC and Irritable Bowel Disease for the past 3.5 years.
I was racing with custom INFINITT up until early 2010 and would still , but my volume is WAY down.
In the past month my weight has dropped from 68 to 61kgs and with that absolutely no energy to train.
With this condo\ition comes the immediate need to hit the can within 30seconds , making training and racing difficult, publically embarassing and demotivating.
As another poster has written , I too cannot tolerate any fruit , vegetables , dairy , margarine , wholegrains and the list goes on.
I wish I had more positive advice , but as I have been unable to increase my hemaglobin , hematocrit and red blood cell counts to within “normal” ranges in over 4 years, combined with lack of REM sleep , I am about to have a serious face to face with my Gastroendocrinologist tomorrow to try and hopefully find another solution.
13KGS lighter since diagnosis and a decrease in training from 15 hours weekly for the prior 7 to none this year yet, seems unaccepatable in 2012 medical environment.
Good luck in your progress !
Terry
I’ve got crohns, so pretty similar.
I am fortunate in that despite having had surgery I don’t have the typical dietary restrictions or frequent bathroom breaks that many do. But I will get the bouts of cramping and internal bleeding.
I’ve had a lot of success with a combination of medicaitons and more natural remedies.
It can take some time to figure out what will work for you.
You should contact jonnyo from this board. Raced with UC went from a MOP AGer to placing as high as 2nd OV at an IM.
You’re going to be an experiment of one, as what you tolerate will likely be different than some one else.
My history with UC is going on 15 years now. I’ve found that I pretty much need to avoid all the “good-for-you” fiber foods. No apples, brown rice, whole grains, carrots (neither cooked nor raw), whole wheat breads, etc. I haven’t had issues with race nutrition, but I’m not going long, so YMMV.
But also find your triggers. What causes flare ups for you? For me, it’s sleep, or more properly, lack of sleep. Anything more than 2 nights of less than 6 hours and I’m pretty much guaranteed to get a flare up.
Also, work with your docs to get your meds straightened out. It took many years to get to a good regimen and have me off prednisone. Whenever I did the normally proscribed taper, I’d flare up again. It took a year to get me completely off pred last time, which was over 5 years ago, and I haven’t been on it since. Right now I’m on Colazal and imuran.
That is great to hear that you are back up and “normalising”. Very happy for you !
I really look forward to that day , but I take solace that there are plenty of others training and racing not only with UC/IBS but also with Crohns , Diabetes , heart conditions , etc. and still chipping away , many competitively.
I advised my gastroendocrinologist this morning that 2012 Q1 I want my blood parameters in the normal zone and will do everything my end to reach this.
We will revisit my results with new tests in a month and see if a new colonoscopy is required, presnidolone treatment or something else.
I am increasing Salofalk ( Salazine ) to double my previous dosage as of today and eating like a horse to try and put on some weight.
As a dedicated athlete and pretty strict on the nutrition for the better part of 15 years , I have been forced away from our traditional healthy way of eating and forced to eat what my body will accept and supplement what I am missing, via protein shakes and liquid vegetable supplements.
I was trained to participate in a marathon early December but had to pull out due to fever 1-3 days prior, with cold and flu. This then turned into chronic ulcerative colitis. So tapering and late periodic intensity sessions may need to be cut down or “repackaged” within the xscheme of things wiser.
A big/long learning curve :0
Thanks.
Terry
Thanks for your reply.
What “natural” remedies have you found beneficial, if I may ask ?
Thanks in advance.
Terry
The best cure is to go ahead and have the surgery. Your quality of life will improve greatly.
No advice I just want to say good luck.
Also suggest contacting John Caron, but another option is to see a naturopath to help get it under control naturally.
Hey OJ I’m a long-time Slowtwitch reader, first time poster. I saw your post and decided to participate. I’m sorry to hear you are dealing with UC I can related to the experience. First, a quick answer to your question. I have found Coconut Water very helpful pre, during and post workout and races. For longer races during I will also use Power Bar gel’s. Pre-race I have a very small serving of oatmeal with apple sauce and a banana mixed in. I have worked with my GI and a nutrionist to come up with this game plan that seems to work best for me for triathlon’s of all distance. The rest of my diet is a normal healthy well rounded diet. I try to focus on vegetables and lean proteins, plenty of fluids!, quality carbohydrates, and of course the staple of my diet frozen yogurt (my vice!)
Disclaimer: Next paragraph is somewhat graphic.
However, I am now living/racing without a large intestine. I have an ileoanal reservoir or more commonly known as a j-pouch. This is the most common type of surgery that UC patients have. I had the two-step surgery which means they removed my large intestine and created a j-pouch and gave me an ostomy for four months then they came back in for a second surgery reversed my ostomy and I started to function normally again (well almost normal as I use the bathroom approximately 6-10 times a day but I have complete control). The more you eat the more you go…
Quick background: I was racing Timberman 70.3 in August 2004 with expectations of a top 3 age-group finish in the 25-29 age group. I noticed something was off on my swim and then I had no power on my bike and things just fell apart on my run and I didn’t even break five hours. I couldn’t explain what went wrong, my training was great, my nutrition was spot on but I just didn’t feel right. Well a week later I had a full on colitis attack and this started a nasty four year journey of hospital stays where I was fed by IV for weeks, diets, medications, doctor visits etc… and finally resulted in my first of two surgeries in May of 2008. During these four years I raced only a couple of times and I can only describe my ordeal as the fight of my life.
The one thing that I learned during my ordeal (and this is different for each UC patient) is that I could not live my life on a diet of rice and toast and wake up each day hoping that I did not have a flare that day or my flare had calmed down. Now I had a severe case of UC but my GI doctor and surgeon’s here in Boston and I all believe that if you have to have a diet where you can only eat a few items and you are relying on steroids or biologic drugs to keep you in remission than it’s time to choose surgery.
Hopefully my post was helpful/informative. Best of luck dealing with the UC. No colon and I have six triathlons and three road races already lined up for this summer and that includes my first return to Timberman since the '04 disaster!
Thank you kindly Bob, your support now and previously is greatly appreciated.
Terry
Of all the time I spent looking on the internet for causes/treatments ect for Crohn’s disease I never thought to search ST until today. Wow, in training for my first marathon last year and being in the best shape I have ever been in, to suddenly waking up one morning sicker than I have ever been in my life, my whole perspective on life has changed a bit. My season was wiped last year and I spent every second of my vacation and sick time in doctors, specialists, endoscopy centers and the emergency room. I am struggling to find out something that is going to completely normalize me again, but it is finally in check enough that I can run and ride again. It’s good to know I’m not alone, and that other people are or have had difficulties same as I am experiencing like tapering off of steroids. I hope I can race again soon. On the upside, always looking at the upside, I ran a 19:23 yesterday. First time I’ve broken 20 minutes in 16 months aka since I got sick. At the bottom of my road ID it says “work harder,” I think maybe being so damn stubborn will be a good quality in continuing to fight this condition and pursue what I love.
UC here too.
Been in bad flare for almost three months. I was diagnosed 4 years ago after a bout of cdiff nearly ended my life. For the most part my UC has been well controlled with very minor flares, with the exception of this flare, and another bout of cdiff last year.
This past week I had a fecal transplant (yes, they took my sister’s stool and put it into me…) because they thought I may have underlying cdiff infection still that cannot be detected. Time will tell if it works, but for now I am still in severe flare. I am at 10-15 bowel movements a day with constant and debilitating pain. The pain killers are losing their kick and I am getting to the end of my rope. Prednisone was ineffective. I just started a steroid enema that I am hopeful about (my flare is isolated to the end of my colon).
A year ago I was completing my 1st IM… now at 24 I am wearing depends… I have not touched my bike in months and am looking pretty sickly. I am ready to have my life back!
Oj
I had UC severly about 10 years ago now. At first it was treatable with Sulfasilazine and occasionally predinsalone enemas. Eventually the attacks got worse and didn’t respond to treatment.
After a year or two on oral predinsalone and Azathiprene I had the operation and had the jpouch built from the first intestine.
I’d been teaching Muay Thai (kickboxing) during all of this and have taken up tris since then.
I’d highly recommend the operation if things get too bad. It takes a year or two to get back on track but my body is much healthier now and I’m competing in Ironman 70.3s happily (top 10 in age group)
Drop me a pm if you want any more info.
cheers