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04-06-2010, 02:16 PM   #1
Hedgehog
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Good programme on new Crohn's treatments

Hi all,
Apologies if you already know about this documentary on the community channel, but someone gave me the link and it's an excellent programme about new treatments for Crohn's and you can watch online.

Here's the link to paste:-
http://www.communitychannel.org/inde...275&Itemid=139

I found it really encouraging.

Gail
xx
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04-06-2010, 02:37 PM   #2
CrohnsHobo
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Thanks! We don't have this in the states, or at least in San Diego.
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04-06-2010, 03:57 PM   #3
Astra
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Hey Gail

That was fab, thanks! The worms are a bit extreme tho! URGH!!
xxx
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04-06-2010, 05:26 PM   #4
CrohnsHobo
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There was someone on here that went to Mexico to have the worms done. Very scary proposition in my eyes. If I remember correctly it was really expensive also.
04-06-2010, 05:27 PM   #5
Hedgehog
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I was amazed at the bloke who was free of Crohn's for eight years after his transplant! Bit of an extreme treatment but how good must he feel!!!
Yeah the hookworm treatment is a bit yuk but I felt better to know that they die after five years in your intestine. I can cope with that. Bring it on lol!
Gail
x
04-06-2010, 05:34 PM   #6
CrohnsHobo
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My Dr. offered the stem cell treatment to me as an alternative to surgery should the metho/humira combo not work for me.

So far I have been able to avoid surgery/transplant. My family was very divided on what they though I should do. The rounds of Chemo for the transplant scared me quite a bit.
04-06-2010, 05:53 PM   #7
Lydia
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When they mentioned that smoking was bad, I looked up how bad smoking was for crohns and I am very glad I quit now. You reduce your chances of flaring by 65% if you quit smoking. Holy smokes!!! I grew up around with 3 chain smokers too, I am sure that didnt help me either.
04-06-2010, 09:12 PM   #8
Crohn's 35
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There is a Canadian Crohnie who was on here "loves to travel" was her name. She swears by it.. she must be doing well on it. The worms creep me out. LOL

I read half the webcast, the symptoms can be aggrivated by, Stress, Nsaids, diet, and smoking. I have quit will be 9 years, glad that I did and my husband did too, smoke free home. Good for you that you quit Lydia.
04-07-2010, 08:53 AM   #9
Brad P
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Good video. Over 2 years old so hopefully there's been advancements since!
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October 2009 - Back to work, life getting back to normal
March 8th, 2010 - off work due to Crohn's, scarred stricture.
May 19th, 2010 - Roux en Y duodenal bowel bypass surgery (gastrojejunostomy)
October 2010 - Fully recovered, back to work...again!
May-July 2016 - Bad Crohn's flareup (apparently)
04-07-2010, 05:00 PM   #10
GoJohnnyGo
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One doctor I saw offered to set me up with a university study involving worms.

Thanks for the links Gail.
04-07-2010, 05:02 PM   #11
GoJohnnyGo
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Lydia said:
When they mentioned that smoking was bad, I looked up how bad smoking was for crohns and I am very glad I quit now. You reduce your chances of flaring by 65% if you quit smoking. Holy smokes!!!
I quit a year and a half ago and the results were both immediate and dramatic.
04-07-2010, 07:55 PM   #12
David in Seattle
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Lydia said:
When they mentioned that smoking was bad, I looked up how bad smoking was for crohns and I am very glad I quit now. You reduce your chances of flaring by 65% if you quit smoking. Holy smokes!!! I grew up around with 3 chain smokers too, I am sure that didnt help me either.
What's interesting is that smoking actually seems to REDUCE UC.

A very interesting show, thanks for the post. I don't know why the worm thing would be so costly, I mean, the only parasites involved are the hookworms, not some bloody pharmaceutical company that has a patent on the worms! Seems like if you could get a supply of the larvae, you could do it pretty easily yourself. I recall years ago hearing about the same approach being effective against asthma, another disorder with autoimmune factors.

I actually don't find it all that intimidating. A bit creepy, yes, but it's a bit like how they've taken to using leeches to drain blood from swollen body parts, or maggots to debride wounds. Again, not huge patentable molecules with a ton of toxic side effects. And if the hookworms don't work, I think they can be eliminated fairly easily, at least in areas where they're not endemic.
04-07-2010, 08:09 PM   #13
Lydia
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The funny thing is I remember going outside for a smoke and cramping up after a few drags, and toughing it out because I felt I really needed the cigarette. Rediculous. lol. My husband calls it smoker logic. He says a smoker will read a book about how bad smoking is and they will quit reading instead smoking. haha.
04-08-2010, 01:55 AM   #14
autumn_rose
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I found this quite encouraging, and even more so once someone mentioned the fact that it's two years old! Haha. Thanks for the link. I messaged it to my boyfriend- he doesn't have CD, but I want to make sure he knows what he's getting into with me, lol.

Lydia, I love your tid-bit about smoker's logic. lol. I will have to quote that for sure!
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04-08-2010, 11:37 AM   #15
Hedgehog
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The weird thing is that I gave up smoking two years before I had any symptoms of Crohn's! I was a social smoker - couple of ciggies a day and none some days. But I gave up because I was getting other inflammatory problems - sinusitis and asthma. Then I got Crohn's!!! Still, I'm glad I gave up as it looks like it's not a healthy pastime for Crohnies.
Gail
x
04-08-2010, 12:17 PM   #16
CrohnsHobo
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David in Seattle said:
What's interesting is that smoking actually seems to REDUCE UC.

A very interesting show, thanks for the post. I don't know why the worm thing would be so costly, I mean, the only parasites involved are the hookworms, not some bloody pharmaceutical company that has a patent on the worms! Seems like if you could get a supply of the larvae, you could do it pretty easily yourself. I recall years ago hearing about the same approach being effective against asthma, another disorder with autoimmune factors.

I actually don't find it all that intimidating. A bit creepy, yes, but it's a bit like how they've taken to using leeches to drain blood from swollen body parts, or maggots to debride wounds. Again, not huge patentable molecules with a ton of toxic side effects. And if the hookworms don't work, I think they can be eliminated fairly easily, at least in areas where they're not endemic.
http://autoimmunetherapies.com/helmi..._purchase.html

This company offers them for $2,900 USD.
04-13-2010, 09:01 PM   #17
fromthegut
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Hi Freinds,

That was really good. I have been looking for outlets for my stress. I love that he uses stand up comedy. I've been very stressed altely and when I leave this board it really affects me. It is nice to see people getting better and offerig hope.
When I am stressed I have been pickign up cigarettes. Not a long tiem smoker but occassional. I really think that I am a very very sad person. And angry but sad deep down. Unfortuantely when I talk or share my feelings it affects a lot of people. I need to find my own healthy outlets.
I have had a lot of sadness lately and I seem to focus on it. My disease falred very badly after a friend of mine passed away. Then her husband decided to move back to his home country. I kiss them both dearly. I became very scared and isolated or not being around healthy people.
I know people will try to tell me to get professional help. i may have to try that. I do find Yoga to be very very ood. Just have to fidn the right clas/ teacher who can support me. Anyway.. thanks for lsitneing. My emotions very much affect my gut.
04-14-2010, 12:19 AM   #18
David in Seattle
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I'm sorry you're so sad. I know what you mean. In addition to the possibility of counseling, many areas have support groups for people with Crohn's/UC. You might find such a group particularly helpful. You can search for one here http://www.ccfa.org/chapters/?LMI=7

Good luck & you are not alone.

David
08-21-2010, 08:17 AM   #19
DustyKat
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Bump.
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