Crohn's and a stoma (ileostomy)

[Viney]

Originally Posted by jkchops

Ok, im sure many of you reading this will not have heard of either and have no clue what Crohn's disease is or what a stoma (ileostomy) is. However, some people may know what either of them are and may have them.

I have Crohn's and a stoma. I was wondering if there are any other people on this site who have either and ride a bike.

If you have Crohn's and/or a stoma then could you reply to this thread along as long as you feel comfortable in doing so.

If you do not feel comfortable replying on this thread then maybe you could send me a private message/email me to talk about this sensitive subject.

If anyone wants to know anything about this or is interested then they can pm/email me.

Thanks for reading.

Jason

My mate has Chrons. Took the doctors 2 years to figure it out although He had worked it out in 6 months. He also rides a bike, and still does. If you want to talk to someone about it, i can pass on your email addy etc. PM me if you feel the need. Personaly serious illness scares me, so im one of the head in the sand brigade

Jason, Scooby - I always thought Crohn's was quite rare. But it turns out I know three people with it near me. One being father and son, and I understand it can be hereditary. The other lad has been in and out of hospital for as long as I've known him, although it's a couple of years since we last met.

Are there 'hotspot areas' in the country or is this just a strange anomoly?


Any way, I wish you both well in the future.
M.

Saw this... just thought I would post it up.

http://news.bbc.co.uk/1/hi/health/4740632.stm

I'm really glad you guys can keep doing what you love best while living Crohn's. I was told I had Crohn's 6-7 years ago, though it turned out to be ulcerative colitis instead, and fortunately, mild at that. Drugs keep it in remission, so now in my rather late 40's, my insides are normal, instead of the dodgy state they had been in since my late teens. Crohn's, UC, rheumatoid arthritis and many others are all autoimmune system problems.

Interestingly (or maybe not), there's a US doctor who thinks immune system problems are another sympton of modern society. He's allegedly had good results with UC sufferers by introducing parasitic bowel worms to patients. The theory is they have a mechanism for suppressing the immune system of the host locally, to stop themselves being destroyed.

I've got a very good friend who has Crohn's and an Illywotzitthingy (bag), though her Fistula (or 'Wormhole in space running through her gut' as I understand it) has just been removed and she recovered from that far better than she has past ops.
A similar mis-diagnosis left her very much touch and go after an emergency op for a while. Now 6 inches of her insides are permanently outside (in a jar possibly somewhere).

(Please for give my crude way with words about somthing so serious, but she claims I have been the one to bless her with a sense of humour about the whole issue - going on three years now - she gives me a run down on what the specialists say, and I give it back to her in childish terms that are easy to understand. I know not everyone will appriciate that kind of a response though, so appologies.)

Though not a biker she does occasionally have a similar issue with her bag when driving on long journeys - the seatbelt goes across just the wrong place!

There are places that do bespoke bike leathers, made to measure n all that. Perhaps a 'dungeree' style would be better suited for you as it then wouldn't have a waistband across the more sensitive areas.

Definate Kudos for you talking so openly about it (everyone in fact), and I sincerely hope this will only add to your confidence when approaching any difficulties that it may present you with.
Crohn's does seem to be one of those diseases that whilst still being comparitively rare for actual sufferers, a lot more people know someone, or a friend of a friend etc.

Originally Posted by philipMac

Saw this... just thought I would post it up.

http://news.bbc.co.uk/1/hi/health/4740632.stm

I read this earlier today. It certainly is an interesting development and a totally opposite idea from the old theory of an 'over active immune system'.

Originally Posted by jkchops

I read this earlier today. It certainly is an interesting development and a totally opposite idea from the old theory of an 'over active immune system'.

I would still not be in too much of a rush to write off that sort of idea either. I'm sure you know this, but its not strictly speaking an over active immune system, the idea was it is an innapropriately active immune system, getting mixed up between self, and non-self.
I should say that I am not strictly a immunologist, I am a geneticist, with some knowledge of immunology. As chazzyb was saying, the brits (among others) are working on infecting people with internal parasites, hookworms and ascaris to try and give that "branch" of the immune system in check. These things, providing you are not almost starving to death, do you no harm. I have been to some very interesting and promising sounding seminars talking about this approach.

So... yeah. So there you go, the guys are trying

Tell your local MP to give more money to science out there, so loads of your good people dont have to come over here !