[Closed] Crohns any good news

Have met Phil, he have managed with it
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Chomp mentioned in another thread that he has it as well.

My mate's Crohn's / IBS resolved itself after a few years, he seems OK now but has had to cut down on the beers.

A friend of mine has it and she does fine.

Mrs mw had crohns for about 8 years without a single flare up or any ill effects. Minimum dose of asacol daily and cut out cheese which for her seemed to be a trigger food and you would never have known she'd had it. For the first few years the 6 monthly meeting with the consultant mostly revolved around him convincing her that she did actually have the condition as she was convinced that they'd made some sort of mistake.

Have a friend who has it; once the initial badness has passed she seems to be doing just fine - she's a fitness instructor and wipes the floor with me when we're out riding together. We've also done multiday backpacks There is a bit of trial and error to see what foods really trigger a bad reaction (she can't eat ice cream for example) but once those are know it's just a case of avoiding them...

Get used to talking about poo... and always carry bog roll but honestly I don't think those that aren't close to her know.

I've had IBS for 21 years. Comes and goes in severity but you just learn to live with it. Make sure you get an emergency key to enable access to disabled toilets at any time as many are locked to the general public.

Never really been able to isolate what sets mine off. Changes over time. Once I could barely look at a pizza without near catastrophic consequences. Pizza is fine these days.

The BiL has it, like the above you'd never know. He's fit as a fiddle, has a few beers now and then etc

Mate of mine has it and this year he's competed in the navy field gun tournament. When he was diagnosed he was in a very very bad way indeed but now he's fit as a fiddle.

IBS has been mentioned above, and while IBS is no fun at all it is far less severe than IBD (crohns or colitis).

I was first diagnosed with Crohns over 20 years ago, and while I was very very ill for the first few years, I'm in pretty decent shape now, with no major flare ups for several years.

Time is a major thing, as it's the only way you will learn how food and activity affect it. It can also take a while to find the right drug treatment - taking immunosupressants was the big turning point for me. Day to day, avoiding high residue foods, cooking all my own food from fresh, and cutting out booze seems to keep me well. Also (and this may sound silly, but..) eating slowly and chewing food about a billion times helps a lot. Exercise makes a huge difference, although during any flare ups rest is what is required. At all times, sleep is a good thing. More so now that I have two young children :o/

The main problem now is the initial acute phases have left me with extensive scarring and strictures - only thing that will fix that is surgery. If the disease can be got under control early, then hopefully that can be avoided.

Keep your spirits up - while it is a nasty illness, it can be controlled and managed and there is no reason why your daughter will not be able to live a full and active life. There is plenty of support and help out there too, so you're not alone.

Is the stuff about fecal transplants curing it real, or just internet nonsense?

Hi Sig,
Don't know if I can help but I can try.
I've had crohn's since my early twenties. I'm in my forties now. I wish I didn't have Crohn's but I do ok in spite of it and it doesn't stop me doing most of what I want to do with my life. I have a difficult but very rewarding job and Crohn's hasn't held me back. I have a wonderful family. I'm pretty fit and active and enjoy life. Every so often the Crohn's causes trouble (on a few occasions quite big trouble) but there's way more positives in my life than negatives caused by Crohn's.
I also see it from a different angle as I work as a paediatrician and have a special interest in gastroenterology. Most of the teenagers we see cope incredibly well and it's pretty humbling to watch them deal with difficult stuff in such a positive way.
The medicines we have now are much better than when I was diagnosed and there are lots of potential new treatments in the future.
It's difficult to give you any specific advice over a forum but hang in there and stay strong for your daughter - she's going to need lots of support from you.
There's lots of help out there. Crohn's and Colitis Uk is a good place to start, they have an excellent website. There are also lots of support groups, particularly if you're attending a bigger hospital with a larger population of patients.
Be a bit careful on the Internet - there's lots of crazy stuff out ther which is unlikely to be helpful.
Let me know if I can be of any further help.
Andy

OP - tell your daughter that Steve Redgrave has it, and he still managed to win a gazillion gold medals.

Best of luck.

My sister in law has it. It has made some aspects of her life difficult / painful, but she does everything she wants to.

The good news is that now you have a proper diagnosis, you can fight it.

Have a friend with it and a family member. The friend had part of her bowel removed but leads a full life and had 3 kids. The family member has found the drugs have calmed it and appears to be through the worst (at one stage bowel removal and a bag looked a possibility).

Tough times @sig123 especially given it's your daughter, as a father myself I can only guess as to how tough this must be.

RL player Richard Moore was diagnosed this whilst at Wakefield a few years ago - he lost a LOT of weight initially, but once they'd sorted him out ( medication wise ) he returned to the game with Wakey & went on to play for Leeds ( & is still playing now ).

Thanks for the kind words it helps a bit, we are currently on day four of the six week course of these horrible shakes she's been given and no food, it's gonna be hard .

Ugh - elemental diet? Yeah, not much fun at all. It should really help calm things down though, and put you in a position to look at keeping it under control long term.

My mate got really bad with it years ago, so much so that I remember going up to the hospital and when I saw him I thought that was it. But he got the bowel removed and colostomy put in and he's never looked bad since, that was about 15/16 years ago, we'd have been around 20/21.

He has lived and now lives a full life, has 2 children, cracking wife, good off shore job and is as fit as anyone I know. Plus he's no shy about about showing aff his colostomy in the changing rooms etc, and never should he be. We went on holiday a couple of years later and he asked me if I wanted to see it, whosh aff his towel came before I could think, tbh I was more shocked at the size of his cock! 😆 lucky bastard! 😀 Was just his way of normalising it with all the troops.

Plenty of hope for you, even when you think all is lost. So keep the faith mate, and good luck with everything.

IBS is an entirely different thing from Crohns as far as I know btw and shouldn't be confused or linked to each other.

Jesus what a turn around shes started her treatment now and what a difference its made , shes back going out and full of life you would never now shes got crohns, Hospital says there is no evidence what so ever that food is a trigger yet alot of people say that they have triggers any thoughts on this?
SIG (ONE HAPPIER DAD).

Really pleased to hear that things are on the up. Long may to continue. In general I'd say listen to the doctors above anyone else if they say there's no proven link then I'd take that as true. But if you think otherwise or just want to cover all the bases then it can't hurt to keep a food diary for a while to see if anything in particular corresponds with a flair up.

Excellent stuff...road to recover can be long but sounds like she is well sorted and on the way.

Good news. 😀

A guy i know swears by slippery elm to manage his crohns. He avoids antibiotics and eats unprocessed, predominantly organic food.

I have had Crohn's for nearly 40 years. It affects people in different ways so just just because some magic potion works for the wife's uncles 3rd cousin, doesn't mean it will work for you.
I was really bad to start with because the docs were crap at diagnosing it. Mine started in my mouth leaving a cobblestone effect inside the gums.
Good old Prednisolone is keeping it at bay with only 3mg daily.
They reckon it's stress related. Quite possibly was with me. I gave up being a Commercial mechanic and went self employed window cleaning.
Best move ever for me, the last 10 years have been trouble free as I do what I want to a degree and have a stress less existence.
I do hope she gets the better of it and manages to stop it controlling her life.

Just a update Emily is doing amazing, just heard that there is a bit of a break through that they may have found a vaccine to cure crohns. They still need funding for further research taking place this year. His name is Proffesser John Hermon Taylor if anyone wants to take a look at his 30 years research so far. Donations can be found on his site. 🙂

Had it for about 40 years. It affected me really bad to start with as it took some diagnosing.
Its been under total control the last 15 years and I put that down to a career change. It would seem to be stress related in my case.
Nowadays I don't give a toss about about work and its fantastic.
3mg Prednisolone daily and 1 1/2 tablets of Mercaptopurine as all is good.
Hope things work out well for your daughter.

Bad IBS here as people who know me know my war cry of "TOILET!!!!!!!!" get out the way as I normally get a 30 second warning and then have to explode followed by cramps I found eating the wrong foods and alcohol trigger it for me.

Learned from a very young age to cope and it's never held me back in anyway just keep spare underwear in my bag as well as wet wipes and a tissue pack.

Glad to hear Emily is doing well.

I was diagnosed 15 ish years ago (wow, hadn't realised it was that long ago) and was rushed in to have parts of large & small intestine removed.

To be honest it's not been plain sailing, but on the whole; most days I don't really notice it. That's partly due to just getting on with it (us humans can be pretty resilient, and I often forget about this until someone reminds me) and not letting it affect my life.

I don't take any meds, and apart from a couple of small operations (rectal abcess twice, which was about as fun as you'd imagine) I haven't been back in hospital for more than a day.

I do go to the toilet a lot (I mean a boat load), and I've not had a solid poo since the operation. I also have a kind of 'knowledge' of where toilets are and will happily go in any public bog regardless of condition (as I know it will be worse once I'm done).

All day rides are out, as is any hope I have of surviving the zombie apocalypse but with a bit of planning and preparation (H) I can do just about anything I want.

I have one of the other forms of IBD Ulcerative Colitis.

IBD is not to be confused with IBS - IBD is an inflammatory disease, IBS is a syndrome. Not saying one is worse than the other, just that they are very different things. One of the difficult things with IBD can be getting a diagnosis but now that's done they can start to look at how to treat it.

The reality - IBD currently has no cure. It is however a disease which goes through cycles of remission and flares. Its an auto immune disease - food can make symptoms worse during a flare but it's not the cause of it in the first place. As mentioned above it can be controlled and you can continue to lead a normal life.

Try the Crohns and Colitis UK website for information both for yourself and for your daughter. Also, some hospital trusts have specialist IBD nurses who will be the first point of contact - my colitis is managed with the nurses rather than GP and I have a direct line I can contact them on.