 Poster: A snowHead
|
|
I have just been struck down with this disease of the bowel and my first thoughts are im going to have to stop wearing salopetes and im going to have to ski in the trees if you get what I mean,but is there anyone else with I.B.D who skis and have you any tips for me like which resort has the most toilets.
|
|
|
|
|
|
Obviously A snowHead isn't a real person
Obviously A snowHead isn't a real person
|
meandrew, poor you  Crucially though, you have got time to get to know the triggers, meds and coping mechanisms (before the ski season) with your GP/Consultant.
|
|
|
|
|
|
Well, the person's real but it's just a made up name, see?
Well, the person's real but it's just a made up name, see?
|
meandrew, I hesitate to mention this because it's got no medical back up and I'm sure the doctors on this forum will (ahem) pooh pooh the whole thing... but I have a friend with ulcerative colitis, who had an attack once every 10 months or so (but was very good about taking the meds and so was fine in between these flare ups). 4 years ago my friend had the worst flare up they'd ever experienced and, wanting to find something - anything - to help, I googled around and found a page about a diet http://www.scdiet.org/ My friend was in a pretty desperate state and so decided to give it a go, but it was a major decision to do this - it is a very restrictive diet.
We're both the kind of people who are largely skeptical about these sorts of things (not least because the people on that website seem like evangelical nutters), my friend has continued to take the daily meds, and I'm sure a number of alternative explanations can be found... but the fact remains that my friend has not had a flare up in the 4 years they've been doing that diet, whereas before they were having a flare up every 10 months or so and that pattern had been happening for 15+ years.
|
|
|
|
|
|
You need to Login to know who's really who.
You need to Login to know who's really who.
|
I have a good friend who has tried everything and whose life has been ruined by this illness. It all depends on how bad you have it, and she has it bad 
|
|
|
|
|
|
Anyway, snowHeads is much more fun if you do.
Anyway, snowHeads is much more fun if you do.
|
|
miranda, i have been checking out all the info and it seems as though there is no silver bullet cure as everyone has a different trigger and response but the sc diet seems popular on the uc sites.Stress is also a personal thing aswell as a trigger which is probably right as I didnt get to go skiing abroad anyhow this year and all my kids did I think the sight of my children skiing in Utah and Austria tipped me over the edge Frosty the Snowman, does your friend get to ski or have they not been able to? Im hoping it wont be around next winter I will just have to see .
|
|
|
|
|
|
You'll need to Register first of course.
You'll need to Register first of course.
|
|
meandrew, she is not a skier, but certainly would not be able to. I have an employee who has it and he would be able to ski if he was a skier.
|
|
|
|
|
|
|
|
|
|
|
|
|
| meandrew wrote: |
| miranda, i have been checking out all the info and it seems as though there is no silver bullet cure as everyone has a different trigger and response |
That seems to be true. I coincidentally met a 16 year-old girl yesterday who has had the condition since she was 10 and the doctors have said she needs surgery as soon as she's finished her GCSEs, but the two people I've known up until now who've had it have been men under stress in their early 20s - 30s. One, as I said, has definitely made excellent progress on that diet (and actually is now so used to it he thinks nothing of drinking vodka and soda or a glass of dry wine in the pub instead of beer, eating plain steak and undressed salad in a restaurant instead of steak and chips, having cheddar and fruit as a dessert instead of sweet stuff etc.) The other took the meds until he felt better and then stopped... so things went pretty bad... and he had to have a fairly brutal operation. But he's now completely well as a consequence of the operation and, um, hasn't looked back since. And then, unfortunately, you have someone like Frosty the Snowman's friend, for whom nothing seems to have worked. So it seems that there's no rule as to how an individual is affected and how they respond to different treatments, but that giving different treatments a go is therefore definitely worthwhile. Certainly, the two friends I have mentioned above have both been skiing without a problem (though would not have been able to whilst experiencing a flare up).
I wish you all the very best - looking after your physical and mental health can only be of help with any condition I guess - and am hoping to see a happy ski trip report from you on snowHeads in the near future.
|
|
|
|
|
|
You'll get to see more forums and be part of the best ski club on the net.
You'll get to see more forums and be part of the best ski club on the net.
|
|
|
|
|
|
|
meandrew, Fecal transplant, sounds horrible but very effective by all counts.
|
|
|
|
|
|
snowHeads are a friendly bunch.
snowHeads are a friendly bunch.
|
kevindonkleywood, what the heck is that if its what it sounds like 
|
|
|
|
|
|
And love to help out and answer questions and of course, read each other's snow reports.
And love to help out and answer questions and of course, read each other's snow reports.
|
kevindonkleywood, dont think its all about bacteria UC its a auto immune disease which does effect everyone different I took probiotics when I was ill and they made me worse I have found that just eating healthy and drinking loads of water is keeping me on track at the moment so i will leave the transplant on the back burner for a bit cheers. 
|
|
|
|
|
|
|
|
I'd love to send yo a private message meandrew, but I dont know how to on this forum.
Anyone able to help?
|
|
|
|
|
|
You know it makes sense.
|
|
Sollophonic, Just go to the top right hand corner of the page and it will open a message box. At top left (well an inch or two down) of the new screen is a circel with new post in it/ Click theis then type in the user name as seen on the forum.
|
|
|
|
|
|
Otherwise you'll just go on seeing the one name:
Otherwise you'll just go on seeing the one name:
|
|
Hmm, tried to send a message, but I think I have to subscribe to something to do it
|
|
|
|
|
|
Poster: A snowHead
|
|
Sollophonic, no you don't , everyone can send PM's but they remain in your Outbox until the person receiving it logs in and picks it up. Then it transfers to your Sentbox.
|
|
|
|
|
|
Obviously A snowHead isn't a real person
Obviously A snowHead isn't a real person
|
Checked my outbox theres nothing there.
Odd system this.
Most other forums just let you send messages and pick em up.
Would like to communicate with meandrew, maybe they can try messaging me if they want
|
|
|
|
|
|
Well, the person's real but it's just a made up name, see?
Well, the person's real but it's just a made up name, see?
|
|
Sollophonic, is the message in your sentbox? If so, Meandrew has picked it up.
|
|
|
|
|
|
You need to Login to know who's really who.
You need to Login to know who's really who.
|
|
BTW this is no different from any of the other forums I post in.
|
|
|
|
|
|
Anyway, snowHeads is much more fun if you do.
Anyway, snowHeads is much more fun if you do.
|
Sollophonic,i I have tried sending you a message but i cant as im down a big hole in the ice dont know what to do other than give ya my email but is that frowned on.
|
|
|
|
|
|
You'll need to Register first of course.
You'll need to Register first of course.
|
So between the two of us we both cant send a message.
It is different to other forums, in that I have just picked up a message off another one with no problems
Nothing in Sentbox, outbox inbox or anywhere.
Very Odd
meandrew. Hint. Do a search 4 my username and look for shiny things with strings
|
|
|
|
|
|
|
|
|
meandrew, you can be rescued from down a crevasse, Sollophonic, that is probably why your PM failed, as Meandrew has a problem with their email address . meandrew can you check in your profile that your email address is correct, then let me know on this thread if it isn't.
|
|
|
|
|
|
|
|
|
meandrew, you have been rescued from the crevasse.
|
|
|
|
|
|
You'll get to see more forums and be part of the best ski club on the net.
You'll get to see more forums and be part of the best ski club on the net.
|
thanks all sorted 
|
|
|
|
|
|
|
|
hi friend i am an other ulcerative colits patient . i wana tell u something that diet has really big role for managing the symptoms of this disease . i am on SCD diet right now . There also a book available in the market and that is really helpful for managining symptoms please check it . ( Breaking the Vicious Cycle: Intestinal Health Through Diet ) Best of luck
group health spokane wa
Last edited by Ski the Net with snowHeads  on Sat 6-08-11 3:37; edited 1 time in total
|
|
|
|
|
|
snowHeads are a friendly bunch.
snowHeads are a friendly bunch.
|
|
michealleo, im thinking about trying this i to have heard good things to,I hope you are well at the moment.
|
|
|
|
|
|
|
|
FAQ
i think the stress of waiting to get the good conditions finally did me in although I did get the best Glen coe had to offer very late on end of March.I will be trying to carry on as normal and see how I go and keep taking the meds and hopefully I will be one of the lucky ones.Thanks 
