crohns disease

hainman

was just wondering what the Bike Radar crohns sufferers drank,ate when going for a ride,
i generally don't eat much if anything.

i do generally take plenty of isotonic drinks and jelly sweets,be good to here other peoples thoughts,good and bad on the joys of cycling with this "PAIN IN THE ASS" disease.

cheers craig

hainman

take it there's no crohn's sufferers here.......

Keith1983

My cousin suffers with it but unfortunately she isn't of the cycling persuasion! I'm not really very knowledgeable on the subject other than knowing how potentially serious is it.

stu100

i suffer from it. Had my 4th small bowel resecsion last October. Yet again made a full recovery and got back on the bike earlier in year.
To be honest i dont alter my cycling diet off anything that ive read on bike websites to keep me fed and watered for a few hours cycling.
For long rides 2-5 hours I take jelly babies, fig rolls, mars , glucose tablets(not all of these items on 1 ride of course!) and drink a combination of lucozade sport lite and water or water & fruit juice mixture. Treat myself to a can of coke when i get back home.
Luckily my crohns isnt active at the moment , is yours? so that probably helps but i have no side effects from this diet.
I am on a low residue diet so the the fig rolls are probably not good but i dont think half a dozen of these once or twice a week is a concern.
The jellys and isotonics are good that you take depends what your dietry restrictions are really and if you suffer whilst riding?

hainman

hey stu.
yeh mine's is kinda active at the moment.its getting better but not perfect.some days are better than others.im on the same wavelength.jelly babies and isotonic drinks.sometime on longer rides i might push the boat out and take some peanut butter and jam peices.
been a few times ive had to dive into the shrubbery which is why i dont play golf haha

ive only had a double resection but think im looking at surgery again in the not so distant future but will hopefully ease my condition,im usually taking a few loperamide to get me through a ride to but lack that edge in fitness.how do you find your fitness levels are mate??
i was on steriods for a long time so have developed osteopenia through the roids but also lost an edge when i came off them,find im taking longer to recover aswell.
anyhoo enough of my moaning.....good to hear from you mate,hope you keep well.

craig

stu100

Hi Craig
Sorry to hear yours is quite active at the moment with a possible operation. I was off the bike for the whole of last year until my op but(touch wood) havent suffered since from boughts of jumping into shrubbery or taken anything, guess im quite fortunate really.
Recovery is ok its just my knees and back that suffer more but thats getting to 40 does for you! How old are you?
Im on azathioprine but i dont feel it affects my cycling and fitness generally ok.
Keep well and you know where i am if you need anything
Stu

tofu21

Hi Guys,

For years cycling didn't bother the Crohns at all, I could push it as hard as I like and hit energy drinks without any effects.

But the past couple of years things have been active. I've tried a few things azathioprine ( put me in hospital) and mtx but they didn't hit the mark. The only thing that seems to work for me is budesonide. Which isn't a long term solution. Anti TNF treatments may be on the cards but I'm not that keen on the idea.

I tend to use the SIS drinks and gels without any problems.

I'm also on a low residue diet which I find makes it hard to get slow release carbs in the morning before the ride.

One thing to keep in mind, many isotonic drinks contain sweeteners that may get things moving....

Anyone else carry spare shorts incase it goes wrong?

stu100

Was on Budesonide but it didnt agree. Azathioprine is regarded as prevantative rather than a cure. If active i get put on prednislone which i find works wonders. Yep the low residue diet does make it difficult to eat what you want for rides.
Maybe a move away from the isotonics the best bet! Stick to water. Those little Lucozade glucose tablets i find good.
Nope have yet to take a spare set of shorts lol if things are that bad i tend not to go out!

tofu21

I still find it amazing that there are no fixed rules for all this sort of stuff and everyone if different!

Yep Budesonide is really great to be one long term. I'm seeing the Gastro in 7 weeks and I'll see waht he suggests next.... Adalimumab or Infliximab may be on the cards.

I've never needed the spare shorts but it's nice to know they are there if it all goes south.

Do you find that the intensity and duration of ride have any effect?

stu100

I guess i must be kinda lucky despite this shit illness that i have no ill effects from cycling. Intensity and duration i have no problem with , do you?. I just struggle with getting going and i constantly seem hungry!!! Oo Infliximab i didnt like the sound of that stuff.

hainman

hey stu.im 38 in a week.aye my neck elbows and knee's are taking a bit of a doing right now and im not even hittin things hard,i was on aza and mtx and imflixamab and humira but never seemed to help to much.like you the roids were a godsend but ultimatly they caused osteopenia as i'd been on them just short of 3years.suppose if i didnt have bad luck i'd have no luck at all haha

i tend not to eat much at all when i ride which is tough on the body as im burn energy im not making if thats how it works........
water and isotonics are my weapons of choice along with jelly babies and haribo.banana's too

not carrying spare shorts but never leave home without the old baby wipes,far better than dock leaves
cheers stu keep well

hainman

hey tofu21
ive done the imflixamab and was fine with it,only gripe was wasting 5 hours every 6weeks but got free fish and chips courtesy of the nhs haha.......

never done the budesinide but take imodium alot to get me out and about.im also not suffering cheese or wholemeal very well so its a case of try and see haha
hope you get on ok with your treatment
craig

upapole

Hello all I am also a suffer have been for nearly 20 years no drugs seem to make much difference during that time been on most of the older treatments. I had a big operation about 6 years ago which kept me free of pain but it came back. I was given the option of another opp or to try imflixamab which I did. In the last 2 years I can say I have never felt better no problems at all it changed my life. Just praying that it lasts .

ednino

I had to give up my beloved XC racing thanks to Crohns. After 3 years out from the sport i've bought a road bike and im trying to claw back some fitness. Recent blood tests show my red cell count is still very low so i won't be pumping up many hills but i can manage 20 road miles ok.

Currently on azathioprine, budesonise and humira injections. Starting to eat normaly again now but with added calorie/protein rich milkshakes http://www.myprotein.com/sports-nutriti ... 15587.html

Intending on entering the HelpForHeros 50mile charity ride in March & the 60 mile Wye Warrior sportive in May.
I've lived the last 3 years in pain so some leg/bum ache shouldn't bother me too much