If money were no object....Who would you seek for CD treatment?

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redspot321
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Date Joined Jan 2006
Total Posts : 303
   Posted 7/26/2008 5:33 PM (GMT -7)   
Anywhere in the world. Who or what facility is on the cutting edge of crohns disease research and treatment?
 
Which study would you like to be involved in? Who is the authority on Crohns??
29 YO Male
 
-CD diagnosed in 2005 illieum
-63cm bowel resection in Feb 08
-Steroid dependant following surgery
- LDN Naltrexone started May 08 been a happy man since!!


Kenny23
Regular Member


Date Joined Aug 2005
Total Posts : 128
   Posted 7/27/2008 12:02 PM (GMT -7)   
Hmmm.
___________________________________________
I am sorry, but rule 10.

Post Edited By Moderator (MMMNAVY) : 7/27/2008 5:07:58 PM (GMT-6)


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 7/27/2008 12:47 PM (GMT -7)   
I'd sign up for England's U of Nottingham hookworm study or fly down to the Mexico clinic and buy them.

belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 7/27/2008 1:20 PM (GMT -7)   
I am sorry, but Rule 10.

Post Edited By Moderator (MMMNAVY) : 7/27/2008 5:07:06 PM (GMT-6)


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 7/27/2008 2:10 PM (GMT -7)   
I'm guessing Kenny just meant that the morality of such has been debated not that it is immoral.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 7/27/2008 3:25 PM (GMT -7)   
Amen, Bellensteen!!!! Kudos!

Me? I'd do what I've done and have been doing: Mayo Clinic in Rochester, Minnesota, no question.

2nd choice: Cleveland Clinic in Cleveland, Ohio.

3rd: Johns Hopkins in Baltimore, Maryland

4th: Massachusetts General in Boston, Massachusetts

My symptoms begain in mid-1975. The locals had NO IDEA of what was going on w/me. I was Dx'd at Mayo Cinic, Rochester, in early 1976. Unfortunately, I couldn't tolerate the only medication they offered me at that time and didn't have sense enough to return to Mayo to see what else they had to offer.

By early 1978 I was hospitalized locally w/a full obstruction. The surgeon's here were trying to tell me the Crohn's was all up and down my small intestine and wouldn't even discuss what surgery they might be doing. I released myself and flew to Mayo Clinic, Rochester, entered the hospital thru ER and the Mayo docs could make no guarantees but said it looked like the Crohn's was confined to one area and that they would most likely only have to remove 12"-18" of the mid-ileum. The surgery and recovery was easier than the tubal ligation I had had done locally several years previous despite the ligation was "just" a "smiley" incison and the resection a full open abdomen. I then enjoyed a 20 year remission of symptoms.

When disease activity returned in 1998 I had the option of many meds not available when I was Dx'd and have been fortunate to experience at least symptomatic remission most of those 10 years. A recent visit to Mayo indicated the need for a resection of a high grade partial obstruction at the old resection site. Since symptoms are still pretty mild and intermittent I'm pushing my luck again and dragging my feet about scheduling the surgery. But I would NOT have surgery any place else but at Mayo Clinic, Rochester!!!

My family and I have been going to Mayo, Rochester, for some 50 years or so now. Its an absolutely fantastic medical facility and the epitome of efficiency as well as providing tremendous medical care. It is a 12 hour drive for us but well worth every second of the drive!
 
Drs Sandborn and Tremaine at Mayo, Rochester, are two of the leading IBD researchers in the country. Hanauer at ... Northwestern in Chicago, Illinois is another. Dr Wolf in Atlanta, Georgia. I can't remember the names of one or two Cleveland Clinic doctors who are leaders in IBD research and treatment.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 7/27/2008 4:30:44 PM (GMT-6)


Kenny23
Regular Member


Date Joined Aug 2005
Total Posts : 128
   Posted 7/27/2008 4:08 PM (GMT -7)   
I never said embryonic stem cells were immoral. I would never say that because I support their research and use.


I can see how you interpreted what I wrote as a personal opinion, but I think the majority of people understood it was meant to describe a topic whose morality is debatable.


Belleestein, are there embryonic treatments available at the moment that are not in clinical trials or being developed? I imagine that therapies with the most promise are still years away requiring you to find a doctor to go against proper procedure to sneak you the therapy under the table. You would surely have to pay a hefty price and face unknown risks. And that is what I meant by rogue doctor.

I was only using my imagination to the unrealistic question of what I would do if money was no object.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/27/2008 4:16 PM (GMT -7)   
I have no problem with you all discussing stem cells, because I do support their use as well. I am sorry, but I deleted the morality/political parts.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 7/27/2008 5:28:35 PM (GMT-6)


redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 7/27/2008 4:53 PM (GMT -7)   
Kasper87 said...
Id definetly do the stem cell transplant. and is <2 years I am going to STOP any medicine i am on and go on Prochymal as soon as it comes out. Stem cells are going to do it. rest of my life or not, ill be healing.

WOW. How do you know its comming in 2 years? Anybody tried to get in on clinical trials for this stuff?
29 YO Male
 
-CD diagnosed in 2005 illieum
-63cm bowel resection in Feb 08
-Steroid dependant following surgery
- LDN Naltrexone started May 08 been a happy man since!!


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 7/27/2008 6:41 PM (GMT -7)   
CrohnieToo said...
Amen, Bellensteen!!!! Kudos!

Me? I'd do what I've done and have been doing: Mayo Clinic in Rochester, Minnesota, no question.

2nd choice: Cleveland Clinic in Cleveland, Ohio.

3rd: Johns Hopkins in Baltimore, Maryland

4th: Massachusetts General in Boston, Massachusetts

My symptoms begain in mid-1975. The locals had NO IDEA of what was going on w/me. I was Dx'd at Mayo Cinic, Rochester, in early 1976. Unfortunately, I couldn't tolerate the only medication they offered me at that time and didn't have sense enough to return to Mayo to see what else they had to offer.

By early 1978 I was hospitalized locally w/a full obstruction. The surgeon's here were trying to tell me the Crohn's was all up and down my small intestine and wouldn't even discuss what surgery they might be doing. I released myself and flew to Mayo Clinic, Rochester, entered the hospital thru ER and the Mayo docs could make no guarantees but said it looked like the Crohn's was confined to one area and that they would most likely only have to remove 12"-18" of the mid-ileum. The surgery and recovery was easier than the tubal ligation I had had done locally several years previous despite the ligation was "just" a "smiley" incison and the resection a full open abdomen. I then enjoyed a 20 year remission of symptoms.

When disease activity returned in 1998 I had the option of many meds not available when I was Dx'd and have been fortunate to experience at least symptomatic remission most of those 10 years. A recent visit to Mayo indicated the need for a resection of a high grade partial obstruction at the old resection site. Since symptoms are still pretty mild and intermittent I'm pushing my luck again and dragging my feet about scheduling the surgery. But I would NOT have surgery any place else but at Mayo Clinic, Rochester!!!

My family and I have been going to Mayo, Rochester, for some 50 years or so now. Its an absolutely fantastic medical facility and the epitome of efficiency as well as providing tremendous medical care. It is a 12 hour drive for us but well worth every second of the drive!


Drs Sandborn and Tremaine at Mayo, Rochester, are two of the leading IBD researchers in the country. Hanauer at ... Northwestern in Chicago, Illinois is another. Dr Wolf in Atlanta, Georgia. I can't remember the names of one or two Cleveland Clinic doctors who are leaders in IBD research and treatment.


I've also seen Dr. Tremaine at the Mayo. Great doc and very nice guy.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 10mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 7/27/2008 7:17 PM (GMT -7)   

Geeze, probably a GOOD GI that could work me in quicker for starts!

My hope is that they one day come up with a cure for this "D" disease! 

I read the article on the small bowel transplant...I wonder if Crohn's could still invade a new bowel...I am assuming so since it can hit the digestive system pretty much anywhere...


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/28/2008 4:14 AM (GMT -7)   
Rider Fan, are you male or female, if you don't mind my asking?

And I think I remember Dr Lashner or Lasner at Cleveland Clinic is also one of the leading IBD docs and researchers.

Yes, Indigo, my understanding is that Crohn's "can" return and hit the transplanted intestine - but do NOT take that as gospel. After all, they strongly suspect that Crohn's occurs due to a combination of immune system AND environmental factors w/some genetic component tossed in for good measure.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 7/28/2008 4:59 AM (GMT -7)   
I think the best GI in the world is the one with which you have developed a trust relationship.
Belleenstein:

30+ years living with Crohn's.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/28/2008 5:50 AM (GMT -7)   
Amen, again, Belleenstein. You are wise beyond your years, my friend. :-)
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/28/2008 6:01 AM (GMT -7)   
Ach, RedSpot, I forgot your other question: "which study would I like to be involved in?"

IF I had the option - the Israeli developed Alequel autologous vaccine and the Japanese developed Adacolumn apheresis infusions.
 
Mayo's Magnetic Imaging Enterography - trying to develop the software to make it as good or better than CT Enterography.
 
Non-Crohn's? Functional MRIs of the brain (what little I have left).


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 7/28/2008 7:05:21 AM (GMT-6)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 7/28/2008 8:01 AM (GMT -7)   
CT, I'm a male.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 10mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/28/2008 11:38 AM (GMT -7)   
Thanks, RiderFran, I figured you probably were ... I'm not.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 7/28/2008 4:13 PM (GMT -7)   

I would find the absolute best doctors for CD, arthritis, fibro etc and I don't care if they are in some far away place.....

thanks to insurance I am getting pretty good care though

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 7/28/2008 7:36 PM (GMT -7)   
I have a great GI out here in Central Oregon. Couldn't be happier. However, I would look into the stem cell too. Anything that would help cure this, is worth looking into, at least in my view.
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