A few requests is all I need to put some UC (ulcerative colitis) information out there for those of you googling "UC and triathlon" over and over! I've been there trying to decide if I could or could not race and in search of people I could relate too.I am covering several topics briefly to outline what I have found works for me, in hopes that readers can find some hope in understanding that they are not alone. I am happy to answer any questions via my personal email listed at end of post. Never hesitate to reach out!
I am not a medical professional on this topic. And I am only speak from my experience and how I have dealt and felt since the age of 24. Here are some blunt facts on my life.
On Flare-Ups:
*I have had 3 flare ups. Each one gets worse and worse and worse.
*Remissions tend to last 2-ish years.
*Stress is what ultimately will send me in a downward spiral to a flare.
*Daily there are minor issues but these can be dealt with, it is the flares that are beyond life changing.
On Food:
*The nutrition books are guidelines, but I have had no success with them.
*My findings are that during a flare vegetables, dairy, and fruit are the worst things I can give my body.
*Chicken broth and jello are my foods of choice during a flare.
*Sometimes all my body needs is a big hamburger or a giant cookie and I feel much better (yep, against all nutrition books). My thoughts on this is that I haven't "eaten" for days and it does not make my gut worse at all, in fact, I feel better.
*Food does not cause a flare, no evidence, but when sick some foods can make it worse. I find each flare up responds to different foods and studies find that this is the case with many. Ie: Oatmeal may effect you now, but not when in remission or during another flare
On Medicines:
*First flare up- Prednisone, Asacol, Canasa (hair loss, no weight gain)
*Second flare up- Prednisone, asacol and some liquid suppository, imuran (sorry, it grosses me out too!), anti-nausea medicine (hair loss, nausea, puffy face)
*Third flare up-Remicade (6 months), Humira (following Remicade), imuran, prednisone, anti-nausea medicine, vicodine, maxalt (vomiting, nausea, puffy face, hair loss, fatigue, headaches)
*Currently- Humira every 2 weeks, 200 mg imuran, maxalt as needed
*Even when feeling great you must take your medicines. I struggle with this because I do feel side effects of them. BUT, I am not sure I can handle a flare up worse than the previous one.
On training:
*Training is a huge stressor.
*I have to do as much as I can to limit it as a stressor by keeping a balance between sleep, work, and training.
*I sleep a min of 9 hours a night and typically take 1-2 hour naps three or more times a week.
*I train 12-16 hours a week now (far less than before)
*Hydration is a key component in my gut letting me train. Make sure you are ALWAYS drinking. I get hydration IV's from my doc to help with this
*A missed workout is a missed workout...no makeups...your body is telling you something.
*Running....oh the anxiety!!! I've found I can only do intervals and even tempo runs (z2+) no more than 1x/week. I COULD do more but I spend more time looking for restrooms than I do actually running.
Tips:
*You are the biggest advocate of your body.
*Find a coach that will listen to you and work "with" you. If you know your body can not handle "x" then let them know.
*Never expect anyone to understand what you are truly dealing with. Trust that you do know what is best for your body and listen to yourself. Being type-A I often find myslef thinking I am being lazy, or "talking" myself down from hard training. This is NOT the case. Trust in YOU!
*Never expect anyone to understand what you are truly dealing with. Trust that you do know what is best for your body and listen to yourself. Being type-A I often find myslef thinking I am being lazy, or "talking" myself down from hard training. This is NOT the case. Trust in YOU!
*The people that matter are the ones that you can talk with and who will not judge you or make you feel "less" because of your disease. Those are the people that matter....keep them close by!
10 comments:
Thanks so much for sharing this information. I am going to pass this along to my sis-in-law!
I cannot imagine having to go through all of that, Teresa!! But I'm glad you're beginning to create a positive relationship between UC and Triathlon. And while I don't suffer from such debilitating issues as you, I am glad to know I'm not alone in having to rely on medication each day in order to function. Fingers crossed you don't have another flare up for a LONG time!
Wow - I am sorry that you have to go through ALL of that. That is CRAZY (not fair). I'm happy to hear that you have it in perspective though and that you are learning from it. What you do is SO inspiring, something we can all learn from.
You are such a beautiful person!
Ihave had ITBS and i can only imagine what you deal with is 10fold ( or more) than I have. Rich sometimes forgets to take his medicines bc he feels so good, then dashes out of bed. oops! He doesnt have a rectum ( TMI sorry) and there are some days he says " I need my sticky filler foods...." its mashed potatoes for him!
Lots of hugs, hope you can still do Honu and do it good!
Thank you for posting this, Teresa. You were key in helping me learn to trust my body and not overtrain last year.
xo
This was a really helpful post, thank you! I hate to see the progression of your meds and side effects though... so sorry that you're dealing with this, but we just make the best of the cards we're dealt with, yeah? I'll just have to see how mine plays out. I'm trying some herbals (boswellia, slippery elm) that seem to help some folks.
I cannot imagine going thru this AT ALL, but many athletes have this issue and it is great you write about it...probably so helpful for many!! :)
Thanks for sharing. Your points are spot on about needing to learn about trusting your body & your instincts.
Thank you for being so open and sharing all of this info. I was there when you first started to show symptoms, so I knew exactly what I had when my symptoms first manifested 3 mos ago. Ironically, I was on a trail run too. Miss you. Love you.
Moni Luv :)
This was very informative, thank you for sharing. I didn't realize there was so much to UC. You are very inspiring!
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