Running To The Toilet, Not For A Medal!

Introduction:

I am 41 years old and live in East Yorkshire, England. I have been suffering with UC symptoms for 20 years but only recently had a confirmed diagnosis. When I am symptom free I enjoy an active lifestyle which includes running half marathons amongst many other outdoor activities. My current flare-up has been with me since Christmas 2011 and there appears to be no let-up at the moment. The medication I have been given (Pentasa) is useless apart from exacerbating my symptoms.

Symptoms Are:

Very bloody mucus.
An instant need to visit the toilet.
Stomach cramps.
Passing much, much more mucus than actual stools.
Unable to lose weight.

My Story:

There seems to be no pattern to my flare ups and as I mentioned above, my current flare up has been with me for over 9 months. When i first saw my docotr 20 years ago I was told I had gastroenteritis. However, having returned with the same symptoms regularly it was decided that there was more to my problems.
I was referred to a specialist consultant but the problem I had was that by the time I saw him my symptoms cleared up.

This was the case for many years until my current flare-up. As I have now turned 40 years old I could be referred to the colon cancer clinic and be seen sooner and while my symptoms were still present. This proved to be the Eureka moment as when I had my sigmoidoscopy the inflammation was clear to see immediately.

It was a great relief to finally have a confirmed diagnosis after all of these years.

UC has made me feel very restricted and lonely although I have an amazingly supportive wife and son. Flare ups have led to cancellation of holidays but they are unbelievably understanding. We manage to laugh about my problems but deep down I am devastated that every time I step out of the house I need to know where the nearest public toilet is incase of emergency. I feel recently that UC is starting to affect my mental health wellbeing as I cannot exercise as I used to. Running and rugby were my major passions but I cannot do either of them at the moment.

Questions I have for the UC community are:
Does anyone else pass lots of very bloody mucus at least 5 times-a-day?
Has anyone else struggled to lose weight?
Can anyone recommend a good diet or is it more down to the individual.
Are there any runners out ther who have UC? If so how did you overcome the problem to continue with your training?

It was great to find this website to share my story and read that I am not alone. Heartfelt thanks and best wishes to anyone reading this. If you can help with any of my questions that would be fantastic.

Where I’d like to be in 1 year:

Symptom free and ready to complete the Great North Run once again.

Colitis Medications:

Pentasa – rubbish!!

Can anyone recommend another alternative medication

written by Jeetee




5 Responses to Running To The Toilet, Not For A Medal!

  1. bajw September 15, 2012 at 4:50 pm #

    hi, i too was diagnosed with UC about a year ago and my doctor put me on the 5 ASA drugs called salofalk. for me it worked for about 8 months and then i had a flare up. I became iron deficient due to the blood loss. last month i went back to my doctor and he put me on Prednisone. It seems to be helping but i am tapering off slowly. i also used to pass 5 bloody stools a day but after being on the prednisone i only go twice with no blood and minimal mucus. my question to you is what does your diet mostly consist of? i have completly changed my diet and follow the SCD diet. i also try to eat only foods that fight inflamation such as fruits and vegetables and fish. you may want to start taking fish oil supplements because they can reduce inflamation. also try to avoid sugary foods such as chocolates, dougnuts, and candies. you can also try taking a probiotic supplement and this can help ease the diarheaa.

  2. Jill
    Jill September 16, 2012 at 5:54 am #

    Hello- I totally understand…UC has a way of getting into every aspect of life. I too have a passion to run. Weight training is another…Some things that helped me was purchasing my own treadmill and a bowflex. The porcelin bus was always close and available…sometimes the gym it was not and oh the embarrasment!! Running outside I would sometimes wonder as I squatted in the bushes next to someones house what they would so if they saw me at 5am. Thankfully I have never been arrested…lol..15 years ago some friends and I started a running club. We wanted to help others get up off the couch and go! There are over 50 poeple now and somehow my UC helped others say if she can do it so can I. Unfortunately a couple years ago after 3 surgeries from perirectal abcesses I had to leave the club and competition world. I miss the comradery of the group. Running was a mental and social outlet. Also on prednisone running helped with all the energy at first. I purchased a nice treadmill with ifit. I could train and compete in events from my home…It was not the same…the energy of all the people you know….Just another adaptation to a new normal as UC demands of us. UC has taken running and weight training totally away since April 2012. Mentally I struggle and my higher power has brought new people and this website into my life to help me cope…

    5 ASA did not work for me as well and seemed to make my symptoms worse… I would encourage being brutally honest with your G.I. They can take it. There are other drugs… sulfasalazine worked briefly until one day taking the garbage to the curb I noticed my skin really yellow and red dots apearing… Walked into the house and my pre teen children frieked out… my eyes balls were yellow and the blood vessels were enlarged… Dang if I didn’t miss a chance for a goul in a horror picture show…I’m allergic to sulfa drugs….many people do great on it..UC affects each person different but the same…Sounds contradicting but I feel there would be a cure by now if UC wasn’t such a shady disease.

    I have 5+ bloody/ mucous trips to the toilet a day. Sugar and processed foods seem to make it worse. good supplements and probiotic help me also….Got to take it slow in adding new things…I would encourage reading the book breaking the vicious cyle by Elaine Gottschall…made sense to me. Adam has a good book to help get started as well as scdlifestyle webstite. Being patient and reversing the vicious cylcle is challenging and rewarding.

    Best of luck in rediscoverng yourself with everything UC is throwing at you!!

  3. Andy September 16, 2012 at 10:20 pm #

    Hi Jeetee,

    A few tips, I’m also from the UK and have colitis.

    Did they put you on the slow release pentasa? Pentasa very successfully managed my symptoms for a number of years but I switched to slow release pentasa and had all sorts of strange side effects that looked like a flare up(diarrhea and urgency included), went back to the normal version and they went away.

    As far a recommending other meds, you should checkout this book by a British GI specialist:

    http://www.amazon.com/gp/offer-listing/0091935083/ref=as_li_tf_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=0091935083&linkCode=am2&tag=ihu0d-20

    Although I have found predfoam enema’s to be very effective.

    I certainly have had more than 5 bloody mucasy stools in one day.

    I’m actually struggling to keep weight on every time I have a flare I lose 10kg.

    Diet wise, I think it is more down to the individual. Personally despite having tried SCD it only ever made me weak and hungry, but it is certainly worth a try and seems to work for a lot of people. I had more success with the FODMAP diet. Neither provided anything close to a cure but they can help manage symptoms. You also really need to make sure you are covering all nutritional bases when on restrictive diets, it is easy to become deficient in iron, b12 or folate.

    One part of SCD I have found very useful, is making my own yogurt and other fermented foods. Be careful with store bought probiotics & yogurts. Most of them are a complete waste of money, I’ve tested many brands for biological activity with little success, most of them are dead. Saccharomyces Boulardii survives quiet well though, it is a fairly hardy organism and has been shown to be nearly as effective as Pentasa in trials. You can find it in Optibac’s probiotic range in the uk. I had a 2 year remission which I would attribute to a good fermented food and yogurt routine.

    I’ve also tried Ovamed’s trichuris suis helminth/worm therapy, it worked very well for me, but I had to discontinue because it is very expensive.

  4. Bev September 17, 2012 at 6:20 pm #

    Hi Jeetee,

    Please try a good 50 billion strain probiotic (one capsule per day) recommended by a health vitamin store (just tell them you have UC), and some L-glutamine powder to heal the colon. Athlete swear by L-glutamine to heal muscles after workouts, but it does so much more, in that it heals all the body’s inner stresses, wherever they may be. It stopped all of my bleeding within two days!

    I have moderate to severe pancolitis, and am in remission due to those two things. I am on NO medication anymore. I can’t take drugs…my body doesn’t like them! I also take a 4mg capsule of astaxnathin every day, which is a natural anti-imflammatory.

    I decided to stop taking medication, but I am not telling you to do that. I was just feeling so rotten on the drugs, and they were not helping the UC at all. After taking the probiotic, the L-glutamine, and the astaxanthin for a month and feeling so much better, I discontinued the meds, and felt normal again!! I am not one of the UCers who has to follow any special eating plan…I know…I’m lucky. You may or may not have to. If you do, then try the SCD too! I think that we have to start treating UC more naturally. The drugs for this disease are so very harsh, and who knows what the long term effects are!

    Don’t lose hope!

    Cheers,
    Bev in Canada:)

  5. Julie Channon October 13, 2012 at 12:46 pm #

    Hi Jeetee,
    I am also from Yorkshire and have had colitis for 10 years, I am currently in full flare and this is one persistant flare. I was hospitalised for a week on IV. Am now on anal/oral steroids UGH hate them. Anyway with little else to do, I decided to research from my bed. I now take several natural expensive therapies. You have nothing to lose in trying. Firstly get a juicer, and have apple pear and lemon juiced, pears are good for the well being of yr colon and lemon can neutralise your alkaline and PH which is very important. Also aloe vera juice, I drink 3 tablespoons daily It has natural healing, zinc, probiotic acidiphulus must be 20 billion + for yr good gut bacteria omega 3 and manuka honey I know it seems a lot but I have noticed a big diff in just a week. Also I drink fennel seed tea it controls thse bleed. Research these yourself and see what you think. I am trying to get hold of something called super silver too god luck

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