UC Athlete Looking for Natural Ways to Control Flare Ups

Introduction:

Diagnosed in May 2011.  Age 29. Always been a health nut with a good diet and daily exercise. A few periods of intense endurance training for marathons and Century Bike rides.

Symptoms:

Flare ups range from mild to moderate. Worst I’ve had is an 8 week flare that involved bloody diarrhea about 8-12 times a day. Time between flare ups seems to be 2-3 months at best.

My UC Story:

Symptoms started in Spring 2010 with Traveler’s Diarrhea I got on my honeymoon in the Dominican Republic. Symptoms lasted for 3 weeks before my general Dr cleared it up with Cipro. Symptoms came and went, although less severe, for the next 3-4 months. Got referred to a GI specialist, had a colonoscopy done and was diagnosed with UC around May 2011.  Although there’s no solid evidence that UC is caused by some foreign bacteria, I still blame that trip to the DR for my condition.

Compared to most people on this site I would say I have a mild or moderate case of UC. My flare ups have come and gone with some basic Canasa treatment..mostly.  At first, Canasa could stop a flare within 3 days and taking it for a full 2 weeks would put me in remission for a few months. Now It seems to take 6 or more weeks for Canasa to work and even then, another flare up comes in just a month or 2 after I stop taking Canasa.

I’m more and more frustrated with my Doctor

for being a “one trick pony” who just tells me

to take Canasa for 42 days every time I call with questions

or concerns or want to discuss some other options.

Currently experimenting with changing my diet to try and aid in stopping the flare. Tried eliminating alcohol, dairy, wheat, corn, apples, raw fruit and veggies in general (cooked only), beans, etc. etc…. none of that seems to be helping. I’d like to try the SCD diet, but honestly I don’t see how I can stick to that forever.

I’m extremely frustrated with my UC when it comes to having a flare during times when I’m training for a big race or cycling event.

I’m concerned about the dangers of long term drug use (of any kind, even canasa) as well as long term intestine inflammation.

Where I’d Like to Be in 1 year:

With my flare ups under control with diet modification that still allows me to have a satisfying and nutritious diet.

Colitis Medications:

Initially before I was diagnosed, My general Dr prescribed Cipro which worked well.
After being diagnosed my GI Dr told me to take Canasa for 42 days when I start to have a flare up.
For the worse flare ups, my GI Dr also prescribed Cipro… which i refuse to take because of the tendinitis side effects.

written by Tim

submitted in the Colitis Venting Area- Click here to add your story too!

Tags: athlete





21 Responses to “UC Athlete Looking for Natural Ways to Control Flare Ups”

  1. EricMay 13, 2012 at 5:45 am #

    Sucks dude. Sorry to hear about it. I used to run 10k, until flareup time.

    Interesting to hear about the DR, cause when I think waaaayyyy back, I had a DR trip very early (perhaps at the beginning) of my dance with UC. Same thing, spent 3 days VERY close to the room.

    Anyway, lot’s of good info and sharing on this site. Good luck with the symptoms, and…

    Happy movements, :)

    Eric

  2. Vicki ThomasMay 13, 2012 at 6:56 am #

    HI Tim

    I know exactly what you’re going through right now. I’ve had UC for three years now and it has been a rough ride. I’m an elite cyclo-cross racer and have really struggled to stay in top form with UC. I lost one season to a terrible flare that put me in the hospital. I lost another season of training due to Imuran side effects. Finally I was starting to get strong again and as soon as I started pushing my body to dig deep in training – my body responded with a flare. I’ve had to cut back my training and simply watch the calendar days pass by. I’m taking Asacol and right now Cipro and Flagyl (both antibiotics) – nothing seems to be helping and the flare is getting worse.
    I don’t know if there is some relation between UC flares and pushing our bodies hard? I eat a very healthy diet – no gluten, no dairy, very few refined sugars, no alcohol, etc. I would love to hear from an elite endurance athlete who is able to train fully and compete fully.
    Best of luck. I’m talking to my doctor this week so if I learn anything from him, I’ll post it up.
    You’re not alone in this battle.
    vicki

    • yummie cloudMay 14, 2012 at 2:01 am #

      Get a all natural liquid proabiotics that need to be refrigerated natural flax seed oil that’s cold pressed. Stop training for three months drink two spoonfuls a day.
      avoid meat/cheese/milk/white bread/corn syrup/dyes in foods/alcohol/fried foods/spicey foods/ caffeine/sea food/soda.
      When on probiotics eat plan honey greek yogurt.
      Since your colon has barely any good bacteria you will use probiotics to help build them & breed these little guys
      To attach to your colon they will eat the bad bacteria then coat the colon stopping the poo from infecting the walls so your
      walls will be able to heal then the bloody stool will be nolonger. While on this diet take one iron pill low intake
      That will help produce & replace the red blood you lost in the toilet making you less weak to bodily infection.
      The flax will help coat the poo making it slip out easyer while making the colon wall stronger through absorbing the fats to rebuild
      Through omega oils.
      Take hair, skin, nail vitamin to maintain grownth proteins for these areas.
      While on probiotics don’t I repeat don’t go walking around on a very cold day it will
      Kill the probitics you need them to survive to attach to your colon to maintain ur nolonger bleed state.

      • TheresaMay 23, 2012 at 5:54 am #

        You have given me more nutritional info than my doctor in two years. I was told it doesn’t matter what you eat. I also stopped working out for some time, back on it now. I juice fruits and veggies(mostly greens) but the best is when starting with ginger every morning. I think it’s a good way to get your body fueled without filling your stomach too much(avoid cramps). No more flour in my diet, I’ll eat wheat but no flour. I’m on liadla twice daily and I take probiotic pills. I avoid dairy including yogurt. I told my Doctor I want to get off canasaall together, he’s supporting me with that. The most important thing in all of this I find just not to let anything get to me, I try so hard not to flip out or think too much about something frustrating me. Anger aNd frustration only can make it worse. If I’m having a tough time keeping calm with anything (talking to doctors, especially billing people, or whatever is going on in life) I ask a family member to just take care of it. They do because they know I have ulcers. I think it’s important to totally avoid frustrations, but it’s easy to get there because your body is in pain. I’m one of the calmest people ever, but with this UC it’s harder to deal with everyday stuff sometimes.

        I have gone to DR before and now I’m wondering myself about that resort food lol. But it’s such a great trip!

    • MattMay 14, 2012 at 7:27 am #

      Vicki,
      I’ve been an ultra endurance athlete for years, and was diagnosed with UC in 2002. There is definitely a relationship between pushing hard, and flare ups. One of the main triggers of flares is stress. Training is a huge stress, especially at your level. Psychosomatic or socio-emotional stress isn’t the only stress that can throw us into a flare.

      I’m going to go out on a limb here, and I’m speaking from my own experience: It’s going to be really hard to control, let alone heal from, your UC, unless you can give your body a rest–a long rest.

      Competition was the hardest thing I’ve ever given up. In my first 24 hr race, I finished top 5. My mouth watered for more. I went longer, harder, and faster. But then I got a flare that was uncontrollable. One of the factors in controlling it was to stop training at that level. I didn’t really start to heal until I decided to rest. That was 3 years ago, and I’m doing great. I do crossfit now, and have more energy than when I was training long.

      At first, I was unwilling to hang it up for a while. For so long, endurance sports and mountaineering were how I defined myself. If I gave them up (even for a while), I wouldn’t know what to do with myself. Then someone put it into perspective for me. They said, “UC kills people, Matt.” It took some time, but the wisdom of those words eventually brought me around.

      Just something to think about. I know it’s difficult to hear.

    • CarlaMay 16, 2012 at 8:40 pm #

      Very interesting….

      I’m a competitive bodybuilder (I was diagnosed last year while prepping for a competition) – and yes, it seems as though when I’m pushing hard, I get a flare. They end up putting me on prednisone (which obviously, I HATE), and I’ve been wanting to hear from some other athletes who might be able to suggest an alternative.

    • Carol from Colorado
      CarolMay 20, 2012 at 5:33 pm #

      I am taking Imuran. What bad side effects did you have.

      • Vicki ThomasMay 23, 2012 at 6:29 am #

        Hi Carol

        I was on Imuran last spring/summer. At first I thought it was my “miracle drug” and then things went badly. My hair started falling out. I was cold all of the time. My energy levels dropped. My white blood cell count was wiped out.

        I am no longer on Imuran. I essentially experienced all of the side effects that the doctor warns you of. This being said, I have friends who have been on Imuran for years with no side effects.

        cheers,
        vicki

    • JeevanMay 23, 2012 at 9:54 pm #

      Hi,
      As I read Vicky’s comment, it sounds a lot like mine. I got diagnosed with UC when I started working out really hard in feb 2010, my GI says that there is no connection between working out and UC. Got onto asacol and went into remission for for 1.5 years and then i started working out again in sept2011. 1 month into the exercise and got a flare up again. havent been in remission ever since. have tried many thing like pred, vitamins, hycort enema and omega 3. everything seems to work at first but the effect fades out within few weeks. i suppose our body is not able to get rid of the inflammation due to excercise or something like that. hopefully there woud be procedure some day that could totally cure us.
      Regards:)

  3. yummie cloudMay 14, 2012 at 2:20 am #

    I’m going to tell the truth I myself gave up dancing I would dance hours.
    The blood started to pour into the toilet my breath smelled of blood.
    I was dying I went to the clinic I smelled of blood.
    I stopped dancing I walk I never run. The blood has stopped the smell of blood stopped.
    Yet even stress itself can start flare ups. I feel a need to fund raise to cure this
    Unbearable decease.

    • TheresaMay 23, 2012 at 5:58 am #

      I’m down, let’s find a cure! I want my old body back

  4. TimMay 15, 2012 at 7:52 pm #

    Thanks for the comments Vicki & Matt… I’m continuing my trial diet based on the recommendations from CCFA website (no wheat, no alcohol, no dairy, no raw veggies or fruits except bananas, no fried or fatty foods, no nuts or seeds, no spicy food, generally trying for low fiber – eating a lot of white rice, baked or grilled fish, roasted veggies, fruit juices, and soup). I’ve been doing this diet for about 2 weeks and starting to see some improvements…. Although it could be more due to the 10000mg Canasa suppository which I’ve restarted about 1 week ago. Since I haven’t been able to keep them in for more than 3 hours in the night I’ve been taking another midday which really seems to help.

    11 days till my marathon and really hoping to continue getting better.

    I hear what you guys are saying about backing off the training…. although I’m not sure I have a severe enough case that I really need to. After the marathon, when I’ve got the flexibility to take some time off, I’ll try to find my balance between training and training to the point of developing a flare. Maybe between diet and going a little easier on the training I can find a good balance…

    I don’t think I’m ready to accept “UC Kills people” as Matt has. I’m not ready to give up on having a normal life and being able to train like a normal person. But just to easy my mind a bit, how do you guys end up in the hospital from a flare? I guess I’m looking for the point where I can push through the inconvenience VS seriously needing to stop my training to avoid a serious condition. Is it just a matter of the amount of blood I’m seeing?

    Again, thanks a lot for the comments and advice

    • Wendy
      WendyMay 23, 2012 at 3:20 pm #

      I ended up in the hospital because I couldn’t even drink water without severe cramping and bloody poops. I lost a about 15 pounds and then I decided I better go in. My friend asked me to check out her bathroom she just painted (she lives two blocks away) and I told her I couldn’t leave because I couldn’t leave the toilet. My lips would be dried and cracked and I’d have a headache (I’m thinking from dehydration) because my interest in food and water was completely gone. If I tried to drink water anyway, I would have to spend a couple of hours on the toilet because of it. I didn’t dare even try anything stronger than water and chicken noodle soup. When I was finally in the hospital, they had a hard time finding a vein because I was so dehydrated. It was in October 2011 that I was hospitalized and it is now 23 of May and I still can’t eat a meal. I am very careful with everything I put in my mouth. Anyway, that’s how I ended up in the hospital.

    • Anne in CAMay 24, 2012 at 3:04 pm #

      Hi Tim,
      My daughter is an athlete and has UC. We tried the medications, but found that after about 6 weeks of using any of the 5-ASA meds she had a WORSENING of Symptoms. Her doctors accused me of trying to sabotage my daughter’s health because our complaints were always after a fixed number of days.

      We have used a protocol of probiotics (VSL#3) and dietary restriction/rotation. She has been fine for the past 8 months without any medication. Occasionally, if she gets sick with a flu or fever (unrelated to the UC) she will have a couple of days of bleeding, but that clears easily if we are careful with foods during those few days. To determine which foods she cannot tolerate, we had IgG sensitivity testing done by Dr. Daniel Dantini at Sage Medical in Florida. It is a simple blood test, but insurance does not pay. It took us a while to find a doctor who would write a prescription because they all say the food does not matter. Well, they are all WRONG. Food matters a lot.
      Also, important to realize is that what is healthy for one person is not healthy for another. For example, my daughter cannot eat tomatoes, cucumbers, broccoli… even though most of the world views those as healthy veggies. She can and does eat a lot of meat… This was a big change from our usual diet, but it keeps her healthy.
      All the best to you. Please continue to question and search until you find what works for you.

    • Anne in CAMay 24, 2012 at 3:10 pm #

      Hello Again,
      I forgot to mention that in addition to dietary changes and use of high potency Probiotics, my daughter started listening to “relaxing” music at bedtime every night, and also when she is feeling really stressed. I need to search for the name of the CD, but music that has a predominance of Delta Waveform has been scientifically demonstrated to decrease cortisol levels and other natural stress related hormones. There is definitely a correlation between UC and stress, be the stress emotional, physical, psychological. Finding a tools to help reduce the stress related chemistry of the body seems to make sense.

  5. Active UC'erMay 16, 2012 at 7:09 pm #

    Hi,

    I just wanted to answer your hospital question. I’ve only ever gone to the hospital once (then again, I’ve only been diagnosed for about 9 months). I was going to the bathroom 1 to 2 times an hour and mostly passing just blood. For several days previously, my sitting heart rate was around 100 and I would occasionally have severe fever chills and a noticeable fever. It was all I could do to just go to work. I finally made a same day appointment with my GI, she took one look at my vitals (pulse, bp, and slight temperature) and recommended that I go to the hospital. I only stayed three days. It wasn’t so much the blood passing that made me go to the hospital (although I ended up needing an iron infusion) – but the non-digestive symptoms that made me realize that I was really sick.

    So, the one time I went to the hospital, I was truly sick feeling. It felt like I had the flu. I hurt EVERYWHERE. That in combo with going to the bathroom constantly meant there was no chance I was going to feel like running. So, I recommend if you see your heart rate unusually high, consult your doctor at the very least (it’s a sign of very active inflammation). My experience may be different than others – but that’s how I felt when I was hospitalized.

  6. Polly
    PollyMay 19, 2012 at 8:30 am #

    Hi Tim,

    I’m not an athlete, but I am following a natural treatment path, instead of the meds prescribed by GI docs.

    My advice to you… find a Natropathic doctor or a holistic doc or a chiropractor… lots of these “alternatives” to Western medicine are focusing now on GI issues such as UC or Crohn’s.

    I would suggest checking out the website deflame.com
    The changes you have made to your diet are a great start!

    I would recommend looking into taking high doses of Vitamin D. I would also recommend taking fish oil, organic psyllium, tumeric supplements, a great multi-vitamin that also has enzymes, and PROBIOTICS,

  7. Polly
    PollyMay 19, 2012 at 8:43 am #

    Hmmmm… my post got cut off, sorry about that.

    Part 2:

    You can start your day with a good probiotic. Take on an empty stomach with plenty of water, and then try to wait 1/2 hr. before eating anything. My multi-vitamin and my probiotic are the “Garden of Life” brand. I take “Primal Defense” and I think my multi is called “Living Multi”.

    If you have a juicer, you could juice some cabbage and drink that. It’s been proven to help heal ulcers. I try to eat only organic food. Try to avoid all genetically modified foods.

    Hang in there, Tim. I am currently recovering from my first flare up. It was a terrible!!! I was tempted many times to take the Canasa that my GI doc prescribed me, but… I was patient and keep going with the natural healing methods.

    I started to have some turn-around points when I took super high levels of Vitamin D… I was on 100,000 IU per day for a week, then down to 50,000 IU the next week, and now I’m at 20,000 IU of Vitamin D per day and my Doc intends to keep me there for quite awhile. The organic psyllium husk powder made an amazing difference, too. I was soooo fatigued… and most recently, my Doc put me on Vitamin B12 too. I am finally starting to feel like a normal person again.

    So be patient, things will get better… if you have any questions, please let me know.
    There are lots of us out there who don’t want to compromise our immune systems, and/or have complications due to side effects caused by the toxic meds the GI docs want us to take… Ugh! Let’s get our colons to heal and not just have the symptoms suppressed!!!

    Take care!

    • Wendy
      WendyMay 23, 2012 at 3:15 pm #

      I as well listened to the doctor and took medication at first. It didn’t work. On top of that, I’ve felt the best I’ve ever felt with food supplements such as (spelling will be all wrong) astaxazanthine, spirunilla and chlorella along with multivitamin and florify. These supplements I feel actually helped the UC whearas the drugs supressed the UC and I also had very sore joints from it.

    • Anne in CAMay 24, 2012 at 3:13 pm #

      My daughter also takes Vitamin D3 (20, 000 IU per day). Vitamin D3 tends to be deficient in people with UC. It is an important element that down regulates the immune system. I would recommend having a blood test to identify if you have low D3 and if so start supplements.

  8. TimJune 3, 2012 at 3:40 pm #

    Thanks for the great information everyone, I really appreciate it.

    A quick update; After continuing the diet I mentioned above for 4 weeks, I did see some very small improvements. I was able to finish my first marathon last weekend, not the time I was hoping for but I’m happy to have finished despite being in the worst flare I’ve experienced.
    As a treat for finishing the marathon, I’ve let me diet slip back to my normal to see if the symptoms get worse again. My “normal” diet is still very healthy, almost all organic, focusing on eating real food, not processed crap. The main difference is I’m not restricting foods like beans, whole wheat products, fresh/raw fruits and veggies, and dairy. So far, I actually haven’t seen anything change in my symptoms. I believe diet may be of extreme importance for some, but I’m not sure if I’m one of them.

    I’m meeting with a new GI Dr this week, hopefully he will be better than my previous GI. I do plan to look into all the alternative treatment options and IgG tests that you’ve mentioned so thanks again.

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