Crohns Disease

hi,just wondering if there are any other riders here that suffer from crohns disease,and what what med your on and how you find it affects your riding capabilities.im on humira,asacol,6mp and pred steriods,i feel when im out i still struggle to get a descent level off fitness for the amount of exercise im doing,generaly i dont eat breaky before a ride so i some times struggle with energy levels but its to stop me constantly jumping over a wall or into bushes for the loo.can be very frustrating,especially when your out in a group,i also seem prone to the sun very easy due to my meds.although the down sides i realy do enjoy getting out(when i can) and having fun,cheers craig

Not Crohns but I did have Ulcerative Colitis for quite a few years and was on the Asacol and occasionally prednisolone in the event of a bad flare-up. I was lucky in that it fairly mild and eventually burnt itself out a few years ago. Never affected my biking but it’s a very unpleasant condition so good luck.

My wife has it – thankfully in remission currently – so while no direct experience of it affecting riding I asked about it on here a few years back (possibly pre-hack, so may not be searchable). From that query there were quite a number with direct experience who posted so if you don’t get a response, then bump it back up the page to keep it fresh so they do get chance to see it and I’m sure will share their own situations.

I’ve had Crohn’s for the last 20years, I take Pentasa daily and plenty of multi vitamins etc, Unfortunately mine wasn’t diagnosed till too late and had to have 3 lots of surgery over a few years, ending up with having a colostomy. I still ride 2 or 3 times a week for 2-4hrs a time but I’m lucky as mine has been under control for the last few years so doesn’t affect me that much as long as I watch what I eat and rest when needed.
The hardest thing is recovery between rides, I go away to S Wales a couple of times of year with our riding group for 3 or 4 days at a time and that can be tough as especially if I have to take a day out during the trip with all those class trails waiting for ragging.
I hope you manage to get yours a bit more under control and I would say just listen to your body and if you feel too tired to ride then don’t, live to fight another day…

cheers for the reply guys.pastypunk ive only been dx for about 4 years but its an aggresive form of the disease,ive had one bit of surgery 3 years ago,double resection.
i’ll agree with you on the after ride recovery.im generaly knackered after it but the next day im fine.
ive never done the multi vits,might need to start them,i use alot of isotonics when im out.oh and jelly babies or haribo’s.

allthepie’s cheers,aye the 2 of them are horrible dibiltating diseases.i have good days and bad days,been on pred for ages so ended up with osteopenia too,so got myself some shin guards just incase i get a whack on the shin,could be bad,glad your colitis has passed without major set backs,

theotherjonv im glad to hear your wife is having it good,its been a while since ive felt 100% but im getting there,ive never actualy realised what that bump thing was.i get it now,

This is my mate Greg who has Crohns:

That sucks mate, sorry to hear that. I have UC, fairly mild, on Pentasa, which is bad enough. I’d dread to be in your shoes, and wish you all the best.

Have you thought the unthinkable and considered an elective stoma? Might seem an odd thing to suggest, but manageability may well improve.

I’ve also had crohns for 20 years, but I was lucky in that they diagnosed it relatively early. First few years was really bad, couldn’t function properly without high doses of prednisolone – asacol, sulfasalazine etc didn’t help at all.

I was offered surgery – resections etc, but decided not to as it’s so irrevocable.

Going on to Azathioprine made the difference – stabilized things enough so I could start exercising again, and that along with diet has made it possible to live a perfectly normal life. Struggle for energy sometimes, and some foods can cause problems but generally I’m fine – I think I’m pretty lucky really.

Try and eat before a ride if you can – porridge works for me.

My Mum’s had Crohns for about 5 years now, and she swears by ‘Loperamide’ to prevent impromptu toilet stops. My mate has just had a foot of his intestine removed a month or so ago and his brother tends to be pretty ill a lot of time. Such a shit disease!

Hi Hainman.

I’ve had Crohn’s for 20 years or so. Currently on 150mg of Azathioprine after a bit of a relapse last year. I had a resection 10 years ago which made an amazing difference (I almost opted for this again a month ago, as it is the closest to a cure that you will find, assuming the op goes without complications….). Having a foot of small intestine removed isnt a problem for your body, though you might end up needing vit B12 jabs.

I dont think I have it too bad, it doesnt effect my diet really, but I’ve been told to avoid fibrous food, which obviously includes fruit and other useful energy sources. The major issue is low red blood cell count and a tendancy to anaemia. I take iron tablets and recently had an iron infusion, which made an amazing difference.

I think your body can learn to operate on limited iron levels. I’ll never be massively fit (ie I live in Bristol but wont be doing the 12 hr Bikefest race today…) but I also seem to benefit from having a good level of basic aerobic fitness which never goes away. A weird side effect is that I acclimatise at altitude extremely quickly. Obviously this doesnt make up for having the disease, but is useful out in the Alps (and I also do a fair amount of mountaineering).

Glad I’m off the steriods, nasty long term effects. I’m sure I’ll need more operations in the future, which is a bit scary, but then again someone might come along with a cure.

http://www.guardian.co.uk/science/2009/jun/23/stem-cell-treatment-crohns-disease

Would any of the Crohn’s sufferers on here try medicinal cannabis?

lifer,that was a very interesting video mate cheers.unfortunatly living in the u.k were up the creek,but someting to look into,

cheers cody,i find it hard sometimes but i have a positive outlook and theres always someone worse of than me.i think if the last meds dont work then it will be a stoma for me but i’ve talked to people on crohns and colitis sites and the bag gives you back your life to a certain degree so if it comes im ready for it.

al2000 i think i got dx kinda quick but its just unfortunatly mine is a bit aggresive,im tapering off the pred too so thats tricky at the mo,i done the aza,methatrexate,imflixamab and now on another concoction,if i get off the pred then i know its working so fingers crossed.ive not tried porridge for ages as wasnt sure if it was high fibre which i have to stay away from,brown bread weetabix,even steak and other red meat is a killer,i’ll give the porridge a go as its good for energy,

crashbanggg i know where she’s coming from,i take it quite often but it still isnt the best.unfortunatly codeine is a bowel blocker but dodgy too.sorry to hear about your mates.i hade about 2 feet removed and have the big scar from goolies to bellie button,not pretty,it is a shit disease literaly lol

hi agentdagnamit,
i hear you.i was on azathiprine but it wasnt enough to help me wean off steriods.but im on 6mp and humira and down to 1mg so hopefully it works.i had a resection a few years ago and i was magic after it but it was short lived,it came back with vengance,i was at the loo 30-40 times a day.not eating and not sleeping but its not to bad now,only visit about 10 times now,the high fibre foods are a killer to me to.tend to keep well clear,never needed the b12 inj but never say never lol.same here prob be visiting the surgeon at some point again but hopefully later rather than sooner.take it easy mate,cheers for your time

lifer i smoked the stuff for years but gave it up when i was diagnosed but had read on places that it was benificial but then my daughter came along and my wife wasnt having me smoking when the child was here so gave it up.if it helped i’d try it no probs but its bloody expensive to get the good stuff to get your oil. 🙁

I havent smoked cannabis regularly for along time now, but it definitely worked for the pain. I guess it has antispasmodic effect, like Buscopan. Be careful though, as nicotine is certainly bad for Crohns.

Wow, all the best to all of you above affected by this – it kinda makes mine seem trivial so far. Hat is doffed to what you’ve been through.

My Crohn’s has been different. About 2.5-3 years ago I developed tender swellings on me bum which would get pretty painful when riding. 2 years ago I finally went to the doctor, and around the same time I started getting bowel problems.

Fast forward to now and after 3 sigmoidoscopies, 3 external biopsies, 1 colonoscopy + biopsy, 1 MRI, 1 CT scan, a bunch of blood and stool tests, and I’ve forgotten how many docs, nurses and surgeons have had a finger up my arse, the hospital has sort-of decided I could have Crohn’s. Reason it’s taken so long is that despite bowel discomfort, many strong urges etc, there’s no internal inflammation.

So all I have is an external granulomatous swelling, with no other evidence for Crohn’s. Recently I developed a really painful swelling that put me off the bike for three months and led to depression. I’ve just started riding again but only tentatively. Finally, though, I’m being given some treatment. All I’ve had to date have been antibiotics to kill off infections I get, and a steriod cream which hasn’t made a big difference really. Apparently steroidal medication will have little effect on the swelling, so that has been ruled out. I’ve just started a 3 month course of antibiotics so see if that will nail the swollen skin (co-amoxiclav, metronidazole and ciprofloxacin). If not then I will decide if I want to go onto azathioprine.

Meanwhile I still have bowel problems, but I’ve found (not help from the NHS) that cutting wheat from my diet has made a massive difference. And I also have problems with red meat. So this is manageable, and I’m seeing a dietician who will hopefully be able to give me a more structured “this is what you should eat” advice, instead of trying to work it out myself! A total pain in the arse! 😀

i was diagnosed in 2001 with Crohns after about 6 months of too’ing and fro’ing rom the docs. I went down to about 8 stone (usually around 12.5 – 13 stone) and everyone I knew thought I was a drug addict. I did use cannabis on a daily basis and it certainly helped with the pain, and forced me to actually eat something (as my appetite was shot).

I had two severe narrowings of the intestine, and ended up having 4 ft of intestine removed, as well as my ileum and appendix (I didn’t realise this but found out they got rid of it a few years later).

fingers crossed I’ve not had any issues with the intestines, but have had a couple of fistula’s which needed surgery (it’s **** horrible), and as a result of the first surgery I have what’s known as short bowel syndrome. I can basically shit about 10 times a day, and all of them are like simply turning on a tap. I get a few mins warning though, which I know some other sufferers don’t so for that I’m grateful.

Lorepamide is a godsend, and you dont build up a tolerance either which is great. A couple of those in the morning before I’m doing anything sporty (and another after eating during the day) is usually enough to clog my arse up til the evening.

Energy levels are up and down, there are some days i just cba to do anything sporty, and others where I sort of forget there’s anything wrong with me.

Give N.A.C.C. a go, and there are also a lot of other Crohns and UC forums out there that are worth joining

hey chomp,man reading your post sounds nearly identical to my situation.i had the same weight problem and looked like a smack head.fortunatly the roids got the appetite back and i was eating for scotland,ive joined a couple of forums and it helps to talk to people in the same predicament as me,i have a good gi nurse which compensates for the specialist who is a bit hit and miss,he’s good at his job but a tight arse with his time…..hope you keep well fella…..

hey kit,hope things turn out ok,i waited a year to be diagnosed,after thinking it was bowel cancer i was kinda relieved when i was told it was crohns…..the steriods are the **** devils work,so many harsh side affects.need to be carefull…..

so done my usual 17 mile trail yesterday and feel mighty tired today,need to find something that can re=energize my batteries…..

sheesh, some of you guys have it bad. Hats off to you for managing it so well.

Coming back to my (my wife’s) situation; when I posted about it on here there was a guy who posted whose daughter had it. She was eventually referred down to a consultant in i think southampton? who had a new regime that had really worked for her. Always up to you of course but might be worth a bit of searching and see if that is any use to you.

One other thing he said was that this surgeon was extremely confident that there was a strong possibility of a cure in the foreseeable future (which in drug discovery terms may well be 10-20 years) but there may be light at the end of your tunnel.

Sorry, couldn’t resist that last one….

hey guys,on the subject of crohns,does any one get sore joints after riding,more so doing some downhill that would rattle yer fillings.im just wondering if going for a full sus bike would lighten the burden on my bones more than the hardtail.its an expensive option but a worthwhile one if it stops me feeling like ive been rag-dolled on the descents.any input would be greatly appreciated.

if it helped i’d try it no probs but its bloody expensive to get the good stuff to get your oil

That’s the trouble and one of the things Greg is campaigning on. The medicinal Marijuana they get in the states is mega powerful, so good for making the oil capsules that Shona talks about in the video while not breaking the bank.

Smoking is not a good way of medicating as there’s no way of getting a consistent dose.

If you guys are interested Greg’s got a facebook page @ http://facebook.com/cureuk which he regularly updates and has more relevant info than I can give you.

*Ooops* there’s also Action4Crohns which is well worth a look, more about getting people with Crohns together to talk about their experiences.

I’ve just come out of hospital after a week ling stay to control the pain and symptons of ulcerative colitis. My consultant has referred me to a surgeon as there is now nothing medically that he can do (5 1/2 years on azathioprine, methotrexate, prednisolone, asacol, colifoam, and heaven know what else). I understand that they want to remove my colon as the disease is resistant and aggresive, so I’m looking at at colostomy bag or a J-Pouch (internal pouch made from small intestine) is there anyone that can offer riding advice for a young and unfit 41 yr old with a young family who is currently fairly depressed about the way things are turning out please?

nutty – sorry dude, I’ve got no specific advice for you, but as I found out today there’s always someone worse off than yourself. Might sound a bit flippant, but if you can focus on the positives (easier said than done) then that’s a start! You’re lucky to have a family who loves and supports you. I’m mostly fighting through my problems on my own – there are times I could do with some hugs for sure! It’ll take a while to adjust, but try and imagine yourself not too far down the line when you’ve got some form of normal life back.

All the best!
Kit

Hi Nutty, sounds like you have hit the end of the “medical” road so to speak and time for surgery. If you have had UC for years then the options are:

1. Subtotal colectomy with end ileostomy…..ie removal of most of your colon leaving your tail end; usually done in a more acute/emergency setting. Can allow pouch surgery at a later date.

2. Total colectomy with end ileostomy…..i.e removal of all of the colon and tail end, permanent: probably the more likely in your setting at a rough guess

3. Restorative proctocolectomy i.e no 2 but making the “J pouch” with no permanent stoma (would still need temporary stoma to allow the pouch to heal).

At 41, if it was me i would go for no 2.

No 3 can work but significant complications if it goes wrong which is not that infrequent. TBH not as many done these days.

My advice is be informed as much as you can, the decision won’t be made on your first visit to the surgical outpatients; you’ll be sent off to speak with a stoma nurse etc.

Kit/RickA

Many thanks, I am trying to keep positive and know that whatever surgery I have will cure the problem and I’ll have my life back – quality time with family (and bike!)

I had an informal chat with the surgeon whilst i was in hospital and he is inclined to do your option 3 as I am young and fit, but we will discuss it properly soon. He will also put me in touch with people of a similar age who have had each type of surgery.

Thanks for your advice, I find it difficult (embarrassing) to talk about and it is good to know that I’m not on my own.

Sorry to hear of your current situation. Don’t feel embarrassed talking about it, as you can see above lots of us here know what UC / Crohns is all about albeit in varying levels of complexity. Good luck with your op and here’s to many years of riding ahead 🙂

Hey nuttyslack,
I’ve been living and riding with a colostomy for 10years or more and have to say it gave me my life back after so many years with Crohns, I know I won’t ever be the fastest rider but as long as you learn to rest when you need it you’ll be fine.
Good luck with your treatment and keep your chin up a positive attitude is the most important thing, as others have said you don’t have to look far to see others worse off than yourself (beleave me I work for adult social care)and I know that when it’s you dealing with illness it’s really tough to see light at the end of the tunnel..
Agree it’s worth looking at NACC or others to talk to people in the same predicament..

hey nuttyslack,sorry to here your at the end of the mecicinal road,im in the same boat mate,ive tried all the meds and just tappered off the steriods and feeling **** horrible at the moment,have no energy to do much never mind a big cycle.im due into see the surgeon soon and disguss surgery,think i’ll be loosing the whole of my bowel and getting a stoma but by all accounts it will give me back so quality of life,ie being able to take my kids swimming and to the park,which you kinda take for granted,hope things work out in the long run for you.from why ive heard if the colon is removed then the disease is cured,though im not 100%.good luck fella,

pastypunk
thats good to hear,always helps to here someone on the mend after this SHITE disease…….like you say theres always someone worse off then yourself,

hainman, your right if it’s colitis and you have the colon removed then it’s sorted but unfortunately not with Crohns as it can affect any part of your system from mouth to exit!! if you know what I mean..
Good luck to any fellow sufferers out there and keep positive..dusty singletrack makes alot of things better..

Pasty,

Many thanks for the advice, it’s the getting my life back which is the most imprtant thing, and as you say there is always someone worse off and I’m sat here with my 8 month old daughter on my knee – lovely!

All, I posted before reading properly. Thanks for all the positive advice, surgery is a cure and with a bit of a lifechange then I’ll be back to my old self and not a drain on family etc. Even fettled the bike yesterday in anticipation of riding…. I’m struggling to set Avid Juicy 7 brakes so I may post for some advice on that soon.

Hainman, looks like you and I are in almost exactly the same situation though my surgeon wants to do a J-Pouch not stoma which keeps everything inside though there are dissadvantages I’m sure. Keep in touch and good luch with everything.

A friend of mine states that Slippery Elm Powder has a huge positive impact on him managing his and avoiding steroids

3. Restorative proctocolectomy i.e no 2 but making the “J pouch” with no permanent stoma (would still need temporary stoma to allow the pouch to heal).

At 41, if it was me i would go for no 2.

No 3 can work but significant complications if it goes wrong which is not that infrequent. TBH not as many done these days.

Not exactly correct – pouch would be what most with UC go for, safe in the majority, now done ‘keyhole’ a lot of the time too. Get somebody who has done plenty and you should get a good result.

Crohn’s is more of a mixed bag but in general there may come a point where surgery is inevitable and to delay just draws things out and may even increase risk of post-operative complications. Again much of the surgery is now keyhole, esp if this is your first procedure. Try to get somebody who does this type of thing regularly.

djflexure,
i was meant to get keyhole surgery but when they had a wee peek inside they found more than they had antisapated.so they opened me up,removed to sections of bowel,40cms in total and my apendix plus part of my colon,six months later the barsteward came back…….the joys of crohns i guess.the surgeon was good mind you,stitched me back up nice and neat……