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rowana
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 2/16/2009 7:57 AM (GMT -6)   
ok..this may sound a little crazy, but i have been thinking about writing to Oprah about this awful disease and maybe she would do a show about it. she seems to have a huge influence on the world today and maybe she could help get the word out there for people like us. maybe even give us some direction. can you imagine us all on stage telling our stories? i think it's a great idea. anyone on board? who knows...maybe she would give some of her millions to help find a cure idea
rowana

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/16/2009 8:34 AM (GMT -6)   
I've been writing her for a couple years now. So far, no go. I've even written to Montel Williams, but his show is off the air now.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


rowana
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 2/16/2009 8:38 AM (GMT -6)   
well that sux! so much for that idea! i still think it would be a great show. guess she doesn't have enough bathrooms for us all;)

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/16/2009 8:41 AM (GMT -6)   
No by all means, go ahead and submit a story! I think that if we have enough people writing her, they might give it consideration.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


rowana
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 2/16/2009 10:12 AM (GMT -6)   
yeah...i was thinking that too actually. did you send her a letter in the mail, or an email?

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 2/16/2009 11:25 AM (GMT -6)   
Oh, do it!!  The more people who write to her, the better!  I think I'll try it to just to add to the volume of emails.  This disease NEEDS exposure!!!

DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/Sunflower Seed Diet
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Remission
 
 
 
 


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/16/2009 11:37 AM (GMT -6)   
I think I just might do it as well. I thought about it before. People need to know about this. I never did before it happened to me. I wish I would have known before hand about it. Or at least had some idea about it. And if we all started to wright about this to her than She would have to put us on the show.

EdwardC
Regular Member


Date Joined May 2008
Total Posts : 48
   Posted 2/16/2009 11:46 AM (GMT -6)   
If Oprah doesn't care, there is always Maury. But then again, that might not be the best avenue to discuss our disease with the public at large.
Mild pancolitis with some diverticular pockets diagnosed in April '08
Currently on 400 mg Asacol X 6 per day


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/16/2009 11:51 AM (GMT -6)   
There is Trya Banks show, Rachel Ray show, and the boonie hunt show. Oh and dont forget about the ellen shoe.

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/16/2009 12:38 PM (GMT -6)   
I usually use the online submission page when I send my story into Oprah.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 2/16/2009 12:42 PM (GMT -6)   
I think it's a great idea! I would be happy to share my story.
31 yr old female
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any meds for now. May be on 6mp soon?


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 2/16/2009 12:54 PM (GMT -6)   
Yeah, just don't go with Dr. Phil!! He actually did a segment on his show about IBD once and gave horrible misinformation. Saying stuff about how people do not go to the bathroom 20+ times, it's just not normal, and that blood isn't something to worry about; just ridiculous stuff like that. 
There was a message board on his website with a bunch of IBD'ers going off about how inaccurate it was. I don't know why this guy calls himself a doctor.
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg
First Remicade infusion 2/5/09


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/16/2009 12:59 PM (GMT -6)   
I heard somewhere that he really isnt one. I have never liked his show. And to me this just gives me one more reason.

Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/16/2009 1:07 PM (GMT -6)   
Ok so Im on the oprahs web sit looking to wright her. If you go where it says be on the show and hit where it says health. There is one where it says Do you have an embarrassing medical problem?. Well I think UC works for one lol.

EdwardC
Regular Member


Date Joined May 2008
Total Posts : 48
   Posted 2/16/2009 1:33 PM (GMT -6)   
Jerry Springer: You are not the father but you have IBD!
Mild pancolitis with some diverticular pockets diagnosed in April '08
Currently on 400 mg Asacol X 6 per day


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/16/2009 1:44 PM (GMT -6)   
lol Thats just want we need. That would be the best one. lol

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/16/2009 2:49 PM (GMT -6)   
Dr. Phil is basically a fraud; he had his license revoked years ago. (check out his wikipedia page)

Is there anyway we can contact Dr. Oz as well (since he's always there on when Oprah talks about health problems)? If we keep flooding her email, maybe she'll do a show on it.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 2/16/2009 2:57 PM (GMT -6)   
I'm curious what exactly would you want the public to know about UC or CD?

q
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/16/2009 3:07 PM (GMT -6)   
I would just want the public made aware that such a condition(s) even exists. Maybe even understand (a little) of what we have to endure every day. IBD is not a glamourized condition due to obvious reasons and many people that have it are afraid to speak out due to close mindedness of the society.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/16/2009 3:33 PM (GMT -6)   
Plus before I ever got it I had no idea that these kinds of things happen. It was the end of the world as I knew it. I really think if i had any idea about it before it all happend to me if would have been a little easier for me. Plus so that way people that do have it and they feel like they are the only ones that have it, they could see that they are not and that there are even faces to people that have it. It could be real and they could feel like there is someone like them. and they could maybe feel a little normal. I know thats what this web sit has done for me.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 2/16/2009 6:01 PM (GMT -6)   
Awareness - more money for a cure/better treatment - more compassion and understanding about making more public bathrooms available.
27 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.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/16/2009 6:08 PM (GMT -6)   
Maybe it could be along the lines of the story in MORE magazine (although I suppose that is a competitor) this month called "Ill in a Day's Work" about what it's like trying to work when you have a chronic disease. I posted about it on a weekend a while ago, it's the issue out now with Emma Thompson on it.
Anyway, make it a little broader than just UC.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Probiotics (Ultimate Flora, 50 billion). Doing much better, but still having some bad days. 


JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 2/16/2009 6:08 PM (GMT -6)   
How about that new show "The Doctors" that covers just medical topics? It's on the same time as Oprah here in Baltimore.
33 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
Meds:1600 mg Asacol a day, Ferrex, Pre-Natal Vitamins, Lovenox, on and off Prednisone (40 mg then taper)
 


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/16/2009 7:04 PM (GMT -6)   
I think if ALL of us started trying to get these people to do a show about it or even articles on it, it would do some good.

Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 2/16/2009 7:06 PM (GMT -6)   
FitzyK23 said...
Awareness - more money for a cure/better treatment - more compassion and understanding about making more public bathrooms available.


clean bathrooms too lol.
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