Treatment for Crohn's Disease

before anyone reads this and decides to try it for themselves... please note that smoking tobacco is NOT a good thing to do with Crohns and can make it worse.

(Obviously lots of stoner types mix weed with tobacco which would kind of defeat the point here assuming the conclusion of the research on that small sample is even correct)
 
Dis86 said:
That's incredibly unlucky. It has a very very low mortality rate. Particularly if diagnosed.
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Dying from complications associated with Crohn's is a very different matter. I also know a couple of people that have died, mostly attributed to their Crohn's.
 
Haly said:
Dying from complications associated with Crohn's is a very different matter. I also know a couple of people that have died, mostly attributed to their Crohn's.
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What sort of complications? I'm interested as I've got Crohns...
 
dowie said:
What sort of complications? I'm interested as I've got Crohns...
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Not sure if I'd be infringing on the 'no medical stuff' rules! Hopefully not.
But bowel obstructions, increased risks of certain types of cancer etc, more serious infections due to the medication suppressing one's immune system. Those kind of things.

(Source being a few Crohn's/IBD support groups on Facebook, as well as a family member having it)
 
dowie said:
What sort of complications? I'm interested as I've got Crohns...
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In all 4 cases they went on to have colostomy bags and 3 of them had it reversed but then went back and had the full colostomy.
My best mate Neil died last year when his reversed colostomy started to leak inside his body, after 3 weeks we thought he was now ready for discharge but dropped dead the following day.
My drummer Paul apparently had most of his bowels removed before he joined us but 2 years later it killed him through complications.
The two women ended up with cancer through Crohns.
In all 4 cases it was complications with the illness.

Just to put a dampener on things, the drummer before Paul was called Gary who came all the time to watch us and give advice but on Monday night he blew his brains out with a shotgun :(
 
Haly said:
Not sure if I'd be infringing on the 'no medical stuff' rules! Hopefully not.
But bowel obstructions, increased risks of certain types of cancer etc, more serious infections due to the medication suppressing one's immune system. Those kind of things.

(Source being a few Crohn's/IBD support groups on Facebook, as well as a family member having it)
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No I don't think it would be breaking the rules on medical threads... that relates more towards advocating treatments or amateur diagnosis of thing etc.. i.e. when people ask for advice.

Though I'd have thought that dying after a bowl obstruction and/or issues with cholecystectomy bags (as per Grey Fox) would fall under the stats for deaths related to Crohns - certainly the bowl obstruction... I mean that would seem to be a direct result of Crohns.

A related complication would surely be something like gall stones causing issues with the gall bladder and/or blocking a bile duct and causing pancreatitis etc.. Or some inflammation affecting other organs perhaps. Or the reactions to drugs you've mentioned.


Deaths from Crohns are supposed to be rare though so it is unusual to know multiple people dying from it... however now you've mentioned that this comes from support groups on facebook that changes things somewhat... if you've got a few hundred or thousand people then no doubt there will be some prominent sad stories about deaths :(
 
It's not that big a group! Also, one death was a close friend of mine's girlfriend at the age of 32 which was a bit more sobering. :(

I think the key thing is to be aware. Keep an eye on potential issues etc. But I'd still consider deaths associated with it to be uncommon rather than particularly rare.
I figure it depends on the severity of the disease. As I'm sure you know, each case is so individual, it's all a bit vague really. I get the impression that some people are able to manage it with meds better than others are able to.

Having seen what it's done to my mother, she certainly seems to be regularly dodging much worse things than I'd envisaged before knowing much about it. :/
 
I had to wear a stoma pouch for a year, but after that I got the reversal and I've been in remission ever since. That was back in 2006.

Wow. Can't believe that was 10 years ago...
 
Craig1981 said:
I had to wear a stoma pouch for a year, but after that I got the reversal and I've been in remission ever since. That was back in 2006.

Wow. Can't believe that was 10 years ago...
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Nice one, presumably you're still taking meds(I'm assuming immunosuppressants) to maintain remission though?

There is a UC/Crohns thread on here somewhere too btw... someone posted a link to the trial of a potential vaccine/'cure' related to MAP bacteria

there are also a few other new treatments that look promising
 
oh congrats, that is a nice position to be in :)

Do you still get followups periodically with a gastro consultant or are you discharged now and just need to go back if it flares up again?
 
I've never seen a consultant since the day I left hospital. I think I was fairly lucky in my case. The part of my bowel that got diseased was relatively small, at least it looked that way to me on the x-rays that I can remember. I've been pretty much symptom free ever since. No bowel pain. Occasional bouts of the runs, but I think that could usually be down to a virus or something I've eaten not agreeing with me.

I live in hope that I stay that way the rest of my life. But I'm always on alert for any danger signs. If that day comes I'll be straight to the doctors, trust me.
 
If I was unlucky enough to have Crohns I'd immediately just go buy weed.

I don't smoke or drink, but it's at least worth a shot for someone.... if it works cool, if not oh well you tried.
 
dowie said:
Deaths from Crohns are supposed to be rare though so it is unusual to know multiple people dying from it...
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To be fair all 4 had Crohns disease and died but whether Crohns was the major factor I don't know so it wasn't correct for me to put "I lost four friends to Crohns".
Apologies if I upset anyone.
 
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