Crohn's/Colitis self treatment seminar

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73monte
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Date Joined Mar 2007
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   Posted 4/17/2009 7:57 PM (GMT -7)   
Last night I attended this seminar put on by the local C/C chapter. It featured a prominent (Toronto), GI, that has a book out as well. His name eludes me right now. He gave an overview of mild, moderate and severe flare ups for Crohn's and Colitis, then gave a self directed treatment approach, to possibly get a jump start on what the Doctors will do, or to minimize damage, Doctors visits and improve quality of life. 
 
My take on it all, was somewhat dissapointing. In a nutshell, he recommended a clear fluid diet until symptoms subsided, then progressed to Prednisone if they hadn't. He was a strong advocate for Prednisone and said that it was still the best drug out there for IBD. He seemed to suggest that it was a good idea to keep Prednisone on hand and self administer if necessary. He wasn't suggesting that it should be taken indiscriminantly by any means, but didn't seem to be concerned with the other effects of the drug. 
 
There were about 100 people attending, and it seemed like the audience knew so much more than given credit for. When the floor was open for questions, the questions were about sophisticated drugs, future treatment options etc. He seemed to defer most of that to his book. 
 
I will say that this GI has glowing reviews on the Rate your MD website. He was resoundingly criticized for being late for appt's, but explained that it's because he gives his patients as much time as they need in an appt. with him. 
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


LMills
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Date Joined Apr 2008
Total Posts : 1753
   Posted 4/17/2009 8:05 PM (GMT -7)   
As bad as prednisone is I will always have it on hand...most other people in my family with medical problems do for an as needed basis.

I still am disappointed to hear that this GI had nothing else to say. I'm always happy when they talk about alternatives pertaining to probiotics and treatment against MAP or environmental triggers...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 4/17/2009 8:18 PM (GMT -7)   
Every GI I've ever had has reminded me that if planning a trip away to always make sure I have pred on me just in case it's needed, it's not a bad idea, granted it's possibly more in mind for experianced IBDers than for newbies although it usually doesn't take long to become experianced with this DD. In my case now, pred has no effect so I no longer make plans away with pred I don't often go away but when I do I just make sure I've got all my natruals that I use with me.

Sounds like this particular GI was more about promoting his book than anything which is ashame.


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/18/2009 8:06 AM (GMT -7)   
I agree with PB4 Pred is a great med, yeah it does have side effects, but it is one of the best drugs to get a flare quickly undercontrol. I will put myself on it and do quick bursts, but like PB4 this is probably better done by those with having Crohns for a longer time than for newbies. Also, what he said about putting yourself on a clear liquid diet is right on. Giving the bowels a rest is always recommended. Not sure what you heard that was so disappointing, maybe you could clarify.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

73monte
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Date Joined Mar 2007
Total Posts : 1496
   Posted 4/18/2009 11:30 AM (GMT -7)   

Hi Gail,

It wasn't so much what he had to say that I found disappointing, it was more what he didn't say. I think that was the feeling from most of the crowd. I think that people were looking for more answers to harder questions, as opposed to the basics. I guess it's natural to hope to hear some cutting edge new findings or novel appoach. Everyone just seemed to have somewhat of a letdown feeling. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/18/2009 1:07 PM (GMT -7)   
Hi Tom was wondering if you are aware of the Gem Project for crohn's and that they are going to put 5.5 million into research over the next several years. You might want to check it out ...lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1496
   Posted 4/18/2009 5:40 PM (GMT -7)   

Hi Gail,

Not aware of the Gem project that you mention at all. Have you posted info about this before? Hopefully something good comes out of it. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/18/2009 7:20 PM (GMT -7)   
You can find out about the GEM project at the CCFC (canada) website...I don't know if such a thing is going on in the US or if it's strictly in Canada.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/19/2009 6:41 AM (GMT -7)   
Hi Tom Just go into goggle and goggle Gem Project... Of course me being me I went in and did a extensive search on Michael J Howorth... and read about some of the last projects that were worked on for crohn's... lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~

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