Warning: not really about politics, and slightly self-indulgent…
One of the reasons Lance Armstrong has given for his return to competitive racing is the desire to promote his chosen cause – improving the lot of cancer survivors. And, however you view Armstrong’s sporting career, he’s certainly been able to parlay his fame into an effective advocate for that. Locally, the McGrath Foundation uses the profile of Glenn and the late Jane McGrath to raise funds to support specialist breast care nurses for breast cancer patients. And they’re hardly the only celebrities who use their profile to promote better treatment for cancer. Which is great – they’re using their celebrity to make the world a better place.
Unfortunately for yours truly, the chronic disease I suffer from a mild case of doesn’t attract the same kind of celebrity attention. So, instead of having a world-class cyclist ride up and over the Alps and Pyrenees to publicize its cause, a fellow Crohn’s disease sufferer is going to take the matter into his own hands – or, perhaps, legs.
The bloke on the right huffing and puffing his way up the Tawonga Gap is yours truly, who does this kind of thing because he’s recently decided it’s kind of fun. The bloke on the left is Damian Watson, who at this point was finding it considerably less fun, because his legs were cramping up after a total of about 3000 metres of climbing that day on a heavy steel touring bike that weighed about 6 kilos more than mine. But Damian kept going, because he needs the practice. He’s got a fair bit of work to do, as he’s planning to ride the entire route of the 2009 Tour de France, a few weeks before the pros do it.
Every year, tens of thousands of amateur cyclists attempt the roads that make the tour famous. Given sufficient time and an appropriately geared bike, just about anybody can ride up one of the climbs on a given day. And, after months of training, thousands of entrants sucessfully complete Etape du Tour, a long grind over a mountain stage of the Tour de France. If you want a sense of just how tough it is, try this rather amusing video by three BBC journalists who did it in 2008. But Damian – whom I can verify is just as average a cyclist as I am – is planning to repeat that experience over 7 mountain stages, a “medium mountain” stage, and 10 “easy” days on the flat…where he’ll still have to ride upwards of 160 kilometres. At least he can take it easy on the “time trial” days…
So why is he doing this? Aside from whatever madness it is that strikes people to attempt such crazy challenges, he’s trying to raise both money and the profile of Crohn’s disease. Despite its relative obscurity, it’s a bloody rotten disease, let me tell you. I’ve been lucky; I’ve only had a few serious bouts, and I’ve been in remission (touch wood) for nearly a decade. So all it’s meant to me are tablets a couple of times a day, and colonoscopies every two years – the last as of this morning, as a matter of fact. But the inflammation of the lower intestine brought on by Crohn’s can be a living hell. You can’t eat, so you lose weight – sometimes quite a lot of weight, to the point where you’re pretty much skeletal and you’re taken to hospital to go on a drip. You’re on the toilet with the worst diarrhea you can imagine, sometimes quite literally shitting blood. The pain of a severe bout is pretty shocking. Needless to say, for many sufferers it severely disrupts their professional and family lives.
I’m one of the lucky ones, as my symptoms respond well to the mildest of the anti-inflammatory drugs available to treat the disease. But others aren’t nearly so lucky, and they’re left with taking high doses of various nasty immuno-suppressant drugs with equally nasty side effects, and often still undergo flare-ups every few months. Affected parts of the bowel can, sometimes, be removed – but the disease usually recurs nearby. That’s the anecdotal version, but, never fear, you can have the economically rigorous assessment of the impact of Crohn’s (and the closely related ulcerative colitis) from this study by Access Economics, complete with lots of statistics about mortality rates, loss of productivity due to absenteeism, and the cost in DALYs (disability-adjusted life years) to go with the horrible anecdotes. Access Economics’ figure on the net cost to Australia of Crohn’s Disease is roughly $2.2 billion annually. And we still don’t know what the hell causes it. Heck, a lot of doctors don’t recognize it; I wasn’t diagnosed until my second bout.
Crohn’s gets neglected for several reasons, but one of the most significant is the extremely high ick factor, so sufferers soon learn not to discuss it. Back when I was an undergraduate, I was staying a couple of extra days on campus so I could have a colonoscopy done. My residential college normally kicked people out pretty much the day they finish their exams, so there was some curiosity around the dinner table about my extended stay in Melbourne. Initially, I tried the generic fend-off of “some medical tests” but some gormless youth then followed up with “what kind of medical tests”, to general curiosity around the table. I reflected for just a moment, and decided to let them have it. It was with some considerable pleasure I replied “a colonoscopy – first I take really nasty laxatives that have me shitting water, then doctors drug me up and stick a camera a meter up my bum to take pictures of the inflamed bits of my colon. The inflamed bits look a bit like the pizza you’re eating…” at which point I continued happily eating my dinner. Nobody else did…
In any case, whatever madness has caused Damian to attempt his big quest has inspired me to attempt a slightly smaller one – accompany him over the three stages over the Pyrenees mountains that separate Spain and France, including a 224 kilometre stage finishing with a long climb up to 2400 metres altitude into Andorra. My third stage will go up the Col du Tourmalet, one of the most infamous climbs of the Tour. You’ll read about those few days on LP, if the Borg don’t take away my posting rights due to boredom. I’ll probably try to extract a little bit of cash for research into Crohn’s from you all as well, though I haven’t figured out how. But for now, it’d improve my post-colonoscopy mood even further if a few interested souls could sign up at Damian’s site, where he’s promising to report daily on what the Tour de France route feels like to a mere mortal.
Hi Robert. I think it is a little pessimistic to consider Crohn’s an ignored disease. It does not have the public profile but the underlying science and therapeutics is clipping along nicely. The genetics are as far along as any other complex disease, probably further. There are now quite good third line treatments with the anti-interferon receptor treatments.
Most importantly, Crohn’s fits into a cluster of autoimmune diseases that is the focus of a lot of scientific interest. Basically, it may not be popular among the public but medical scientists find it rather fascinating and work in other areas crosses into Crohn’s.
Robert, I sympathise deeply. There’s always some idiot asking for details you know they’re really not going to want to hear about once you start telling them. Years ago now when I had the first onset of prostrate cancer which, very temporarily, produced some extremely alarming urinal incontinence (no longer a problem)someone pestered me as to how I really knew I had prostate cancer. And I mean pestered. I let em have it. The frightening initial symptoms, the unpleasant details of the biopsy, the lot. (But I still don’t know how I got it – age, I guess.)
Anyhow, I hope you stay in remission for yonks. Touch wood. I know from experience its a good feeling and you feel really relieved about getting on with your life with a bit less worry.
Good luck to you Robert. A dear friend of mine had haemophilia, another unglamorous disease that people don’t think that much about either.
Have seen/known a few Crohn’s sufferers, and sat though many lectures on it.
Not sure you’ve heard about the worm story, but given the enormous disparity between the incidence in ‘modern’ societies and those of less developed countries (it’s largely a disease occurring in ‘western industrial culture’). There certainly seems something in the lifestyle/diet/environment which contributes to the condition.
Could be a month or so stop off in a New Guinea village and exposure to the communal ‘parasites’ could really help people, at least in regard to Crohn’s. More effectively than any current medication.
———-
Trichuris suis [a helminth, a worm] therapy in Crohn’s disease
Clinical trial of worm ova (eggs) in Crohn’s disease
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“In summary, T suis is well tolerated and appears efficacious for Crohn’s disease in this open label trial. Helminths probably inhibit intestinal inflammation by mechanisms different from current medications. Helminths may offer an easy to administer alternative or supplement to currently available therapeutic agents. These results justify a double blind controlled clinical trial. Furthermore, these results support the hypothesis that helminthic exposure provides protection against some immune mediated inflammatory disease like Crohn’s disease.”
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65% remission after 12 weeks, 72.4% remission after 24 weeks
I had a bout of gastro enteritis a couple of years ago and was sure that I was going to die. Something I never want to get again, so I sympathise totally. Interestingly my favourite historical hero, Alfred of Wessex, may have suffered from the same disease.
Something practical you could do if it fitted to your skills. Some time ago I developed the concept for a product we called charity choice (name already taken by someone else sadly). What this is, is a donation collection device to replace the old tin on the counter (my business amoungst other things makes donation collection systems for an international charity). It is electronic, with a coin validator (CoinMech) which counts a donation and displays the amount. Then from one of ten selection buttons on the front of the device the donor can select the charity that they want to donate to. Two of the buttons are for what I call charity of the day. These are for incidental causes that might be topical in the news and worthy of support. The bushfire appeal for instance, or for individual cases of immense misfortune that occur from time to time. It is this feature that links the system to free advertising for retailers who support it with their counterspace (tower construction very small counter foot print). The intention is that the operation be managed by a major reputable charitable organisation. There it is a good idea left languishing. I can find someone to do the electronics, but it needs someone else to do the software to varying degrees of complexity. It is my belief that given choice more people will donate their change more often.
By the way,
folding bike find of the day
http://www.e-ride.ca/Electric_Bikes/index.html
down load the video from the left hand column. It is the Caper micro e bike. 350 watts so a highly dangerous and illegal nasty thing in the hands of Australians, so they will have to be smuggled in and only ridden in the dark.
Thanks for commenting, everyone.
Dr S: I take your point that public profile and research interest are two different things, and thanks for pointing out the progress of research. But public profile is still important; employers, for instance, are likely to be a lot more sympathetic if they have a better appreciation just what an employee is going through.
Furthermore, unless things have changed very dramatically and very recently, general practitioners often know bugger-all about Crohn’s. I went undiagnosed through my first lengthy bout at 17, despite the fact that I was obviously seriously ill and tests for various viruses, bacteria, and parasites kept coming back negative. Finally, on my second bout I got so emaciated I ended up in hospital. Once a surgeon who knew what Crohn’s was saw me, he diagnosed me in literally five seconds flat (though he did a colonoscopy to make sure).
My bad experiences with GP’s continued a couple of times when I had flare-ups. None of them seemed to know the first thing about treating flare-ups with prednisone; if I’d followed their advice I’m pretty sure I’d have made myself seriously ill (I had to call my specialist and he advised me appropriate treatment in the end).
Now, I appreciate that GPs do the best they can, and they can’t expected to be experts on every obscure autoimmune disease out there. But I’d prefer the obscure autoimmune disease that they are ignorant about to be one other than my own…
Paul: cancers do put my experience in perspective; Crohn’s isn’t likely to kill me. But you’ve hit the nail on the head about the odd dynamic you get occasionally where people are inordinately curious about your personal experiences, and then get all squeamish when you tell them the truth.
Quoll: the fact that it’s a disease of the developed world is well established, and there’s a number of theories about why this is the case (a mycobacterium that is common in refrigeration was one that popped up in the literature, I believe). It wouldn’t surprise me at all if parasite loads had something to do with it, though it’s clearly not the complete answer as the majority of Westerners don’t have Crohn’s.
Bil: that’s a fascinating idea, if not one that’ll be ready to implement in time for my little exercise.
It just so happens that my research interests have taken a turn into the embedded software area, so we should definitely have a chat about your concept.
Thanks Robert, I’ll send you an email. If you tried to send me one and it bounced it is because there is a spam filter somewhere set too tight. I’ve been missing a few emails lately.
My sympathies, Robert. Crohn’s is a mongrel of a disease and I’m pleased that you’ve been in remission for 10 years. Long may it last. I’d be happy to donate to your and Damien’s fund-raiser.
Glad it’s you chaps doing the ride, though. I feel like bed rest just reading about it.
No sympathy required Jane. It’s interfered with my life remarkably little. I have a challenging and rewarding career, a wonderful partner (who’s just reminded me to mention our affectionate cat), and a loving, supportive family. I’ve traveled all around the world, and seen large parts of Australia. There is virtually nothing I’ve not been able to do because of my Crohn’s.
I feel sorry for the people whose symptoms are infinitely more severe than my own trivial ones.
Congrats Robert on managing so well with your illness.
Certainly a correct early diagnosis can prevent years, even decades, of unnecessary anguish by sufferers of any chronic condition. It amazes me how often a patient presents time and again with a constellation of symptoms over a period of years, and how incurious many doctors are about joining the dots. There’s a lot to be said for a holistic approach, instead of simply assuming that any one symptom or bout of illness exists purely in isolation from another.
Now, if only some nice glamourous celebrity could front up with endometriosis and improve the level of public understanding of the predicament of the thousands of women who suffer from it. Like your case of Crohn’s, some people have symptoms that barely trouble them — others are completely debilitated and lose their health, their careers and their entire social connections as they become “invisible” victims of an illness that swallows their life.
Any volunteers?
Col du Tourmalet,
Colon du Toilet
Sympathies to you Robert.
I’ve only met one other Crohn’s crony. It took almost a year for his diagnosis, a very worrying time for him & partner, as his weight and health slowly declined. Fine now.
Tawonga Gap, what a beautiful place. Cheers!
Nice topic to stumble across after a tummy attack robbed my daylight saving reversal hour. I have problems that were thought to be crohn’s for a while. B12 deficiency caused irregularities and a few colonoscopies but no answer to why. Have to inject 1mg of hydroxocobalamin four times a year. Amazed at how many Crohn’s sufferers bobbed up from around here when the subject was first raised. I’d never heard of it before and tend to shut up shop when it comes to talking about illnesses mainly because it seems to be all people my age want to do. Good to see you have an active exercise attitude Robert and good luck with managing the problem.
*Raises glass of picaprep in salute*
It’s hard not to always sound like you’re diagnosing or prescribing things when discussing illness, particularly if that is what you’re supposedly trained to know about. Reading the kind of article I posted is part of my day job/profession. Translating broad findings and phenomena into specific ‘treatment’ is of course, the most important and difficult aspect of all healthcare.
The social and cultural aspects of disease always interests me as well, as there are many conditions that are specific to different cultures, the way we live as societies and individuals influences the illnesses we get, whether we want or like that or not. Perhaps confronting to us all one day.
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A commentary that links from the article I posted discusses exactly the interplay between immune function and ‘parasites’ and gut microflora. Which seems to raise a question of whether ‘parasite’ is just a loaded term suggesting that everything inside us, that is not actually us, is ‘bad’ and ‘dangerous’. Though seeing the as bacteria/microflora inside of us outnumber us on a cell to cell basis, the truth is that we are not all that we think we are, and the boundary between out there and in here is not as clear cut as we might think.
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Not everyone has Crohn’s, but it is growing, as are a number of other immune mediated diseases (eczema, psoriasis, type 1 diabetes, rheumatoid…) in developed societies. Steroids are generally thrown at them when they are bad, but these can certainly have a lot of potentially bad effects themselves. As you rightly point out, despite peoples morbid fascinations, most of the time people just don’t talk about their illnesses, except to health professionals, and even then they might not always tell everything. So it is actually hard to know how prevalent or common some conditions are on an everyday basis, because almost everyone avoids talking about it due to stigma, embarrassment and perhaps a ‘yuk’ factor. Then someone might say something, and others appear out of the woodwork.
Quoll: Yes, “parasite” is a rather loaded term (rename them “symbionts” and see what happens?), and you make some very interesting broader points.
Helen: Picoprep is Teh Evil. Fleet is still evil, but much less so in my opinion (you only have to drink two 250 ml glasses of the stuff, not three bloody litres.
Just my 2c on bowel prep solutions
…And in case you thought that was just an in-joke, no, it’s literally true. Mum died young of bowel cancer, so every 4-5 years. Bleah. About to start on the Glyoprep now. Bleah.
And Robert, Frank Fisher, as you probably know is a fellow Crohnic, and constant bike rider who has campaigned widely for humane toilet facilities, transferrable medical records on smart cards, so travelling patients who need treatment can quickly update/inform medical staff.
So when you pedal, do a few turns for Frank. I’ll get on and have a look at Damian’s site when the climate stuff has cooled down a bit …
Cheers, Roger, not familiar with Frank. Would certainly endorse humane toilet facilities!
Still have considerable reservations about electronic health records; definitely appreciate the advantages, but some advocates (no idea whether this applies to Frank, obviously) have a naive attitude to privacy and security.
Helen, good luck with the glycoprep, and hope your colonoscopy is as much a non-event as mine.
The comment about Fleet is also not really a joke, by the way – if it’s OK with your doctor, Fleet is a lot less unpleasant. Something for next time…
I think there are a whole cluster of auto-immune diseases (my daughter has Behcet’s) that probably have a common cause or causes and just vary widely in their presentation. Get a good prevention/treatment for one and you probably get it for the cluster, which is a good justification for a substantial research effort.
I can’t believe i just got around to reading this post, it’s nice knowing of other people with Crohn’s but…
Just my 2c, i thought that the first glass was alright, it was the second and third that was a bit rough. But then again i don’t recall having to drink three litres of it. Also the motions that came afterwards, to me, were much easier that the (literal) crap i had been putting up with.
Anyhoo, good luck with the biking. You must be confident of being in remission to attempt something like that!
I realise the guy must be busy with his preparations – but no posted training plan? I’m not sure I’d want to go anywhere near some of those rides without some serious kilometres in my legs, crohns disease or not. Good luck to him and you too Robert – you’re going to need it. Plus, take some spares – hill climbing at speed is going to break stuff like you wouldn’t believe judging by my recent experiences.
I <3 people with Crohn’s disease
Trust me, he’s been doing some fairly serious kilometres, Dave, and he’s doing more at Easter.
Robert,
more info about Frank
here, and here
Bicycles, Crohn’s, sustainability, academia, engineering (different types tho’ but) – you guys have a lot in common
Robert
Non-event, yay!
Dave, what would you suggest? I was planning on the obvious ones of tubes and tyres, brake pads, a spare wheelset, a chain, perhaps a cassette, and the tools to fix them all. Anything else?
Helen: go and have some overcooked meat and red wine to celebrate tomorrow!
Spares and tools – I’d carry on my person or bike: two tubes; a patch kit; spoke key; bicycle specific multi tool (allen keys, screwdriver in folding thingy); a small chain breaker; a tiny set of pliers; a rubber or plastic shim if you blow the side out of a tyre. Skip the C02 cartridges and buy a good dual action mini pump to mount on your frame. It’s tyres and spokes and chain that bear the brunt of the work when climbing, so that’s where failures will be occurring. Either that or a crash as there will be lots of participants and not all of them used to bunch riding.
Sit down and work out how the adjustment on your rear derailleur works – if you crash you can often bend enough stuff subtly that it won’t work properly without tweaking. Know how to adjust spoke tension to bring a wheel back to true-ish. Know how to break a chain and fix it again (very simple with a little saddle bag sized chain breaker). A typical crash will see the rear derailleur bent upwards, usually ruining a couple of chain links. The chain will work fine with them removed, but you have to be able to do it first.
Most of the tools will fit in your back pocket or in a saddle bag. Most wheels you’d know will happily function with one missing spoke if you back off the brakes and fiddle with the tension, but with two missing you are stuffed. Anything more serious than can be fixed with those tools will require a sag wagon and two broken spokes will ruin your day, as you can waste 30 minutes trying to refit one.
In your luggage, take a spare pare of wheels as you said, a couple of suitable spokes, a couple of folding tyres, some cables, a cable cutter, a couple of spare bar end plugs, a chain, a couple of sets of brake pads, spare cleats for your shoes, small first aid kit for scrapes, some Paracetamol. Put a few km into the spare wheels to make sure they’re OK before you go. Most of the other stuff could probably be purchased in France (plenty of bike shops there) so take credit cards with plenty of spare capacity because France is awfully pretty, but not cheap.
I don’t know how Crohn’s disease is affected by alcohol, but personally I would avoid having a big night before the Col de Tourmalet as the dehydration would quite literally kill me.
David: it’s only going to be a small group, so the support vehicle won’t be far behind most of the time, so I won’t really need to carry tools on the bike (I’m also likely to be a faster climber than some members of the group, so I’m not going to delay anybody if I have an issue).
The spare wheels are going to be the low-end Shimanos that came with the bike. Not nearly as nice as my custom jobbies, but they’ll do if I have a crash.
Mini pumps are useful for only one thing IMO – pumping up to 20-30 psi before doing the rest of the job with CO2. Besides, you can buy CO2 cartridges in bulk for about a dollar each. Cheap at the price.
Sorry Robert – I thought you were doing the etape? I would have thought that’d be thousands of riders. I never liked c02 much – I’ve had multi-puncture rides around here and watched other riders put a couple of cartridges into a wheel only to realise they forgot to dig out the glass from the tyre, or patched poorly, at which stage they’re always borrowing my pump
But, if the sag wagon is close and it’s a small group, then carry as little as possible.
Nope. The Etape this year is the Mont Ventoux stage. The charity ride I’m joining is just a small group, and it’s an entirely separate thing.
I agree that you definitely need a pump as well as a last resort, but CO2 is the greatest thing since sliced bread in this context as far as I’m concerned
Equipment suggestion? Rear vision mirror. Having personally witnessed a 15 year old girl being crushed under the wheels of a truck, I suggest a rear vision mirror. And maybe a whip aerial….with a flag.
Robert and Damien, I salute your efforts. I’m a relative of a Crohn’s sufferer, and a cyclist myself. All the best!
I hope all is as well as can be Robert.
I saw an article in ABC that amazed me. A trial of infecting people with hookworms saw great success and none of the 10 infected wanted to be cured of the worms after the trial. Amazing that this worked and amazing that someone thought of it in the first place
The article does mention Crohn’s by name but I thought the study was about gluten intolerant people – but I have no idea and no experience on this topic so I thought I’d alert you to the link
http://www.abc.net.au/news/stories/2009/10/22/2721267.htm