here is what i have

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summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 10/26/2009 8:26 PM (GMT -7)   
(sorry guys its nothing funny, lol)
 
so in another thread we talked about how we would like to see a segment on ostomies on the doctors tv show. so i have been working on a letter, please give me honest opinions!
 
 
I am writing on behalf of the members of the ostomy board on healingwell.com.  Everyday we answer and ask questions regarding ostomies.   There is so little information readily available and must of it is misinformation.  Because of this we read posts from people who are afraid of surgery because they dont have the correct information.  So many people suffer from ulcerative collitis, crohns disease, chronic constipaion and other diseases, pumping their bodies full of dangerous drugs and suffering needlessly because they dont understand ostomies.  Many people think they will be confined to their homes because of a smell, or that people will be able to tell just by looking.  They think they wont be able to wear the clothes they want to.  Or that their quality of life will be compromised, that they will be unable to run, or swim or hike.  Or that their diet will be restricted.  When in reality, all of these are misconceptions.  People with ostomies can, and do, anything they want! 
If you could spend some time on your show clearing up some of these myths up, maybe fewer people would continue suffering out of fear.  Many of the people on the board with ostomies held on needlessly to our colons, because we didnt know how much better life would be with an ostomy!  Your show is always good about providing factual information in a way everyone can understand.  And if you would touch on this subject and let people see someone with an ostomy, it would go a long way into clearing up all these misconceptions.
Please take this into consideration.  Thank you for reading.
Members of the ostomy board on healing well.com
 
 
(mods, please let me know if its ok to use the website name!)
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 10/26/2009 8:34 PM (GMT -7)   
I enjoy watching the doctors' show and would like to hear what they have to say about ostomies. Good idea, summerstorm.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/26/2009 8:37 PM (GMT -7)   
well it wsnt my idea alone, it was an idea from another thread, i just wrote the letter, lol.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 10/26/2009 8:37 PM (GMT -7)   
Way to move things forward

Go for it and if they need any more help I for one would sign up to help.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 10/26/2009 9:10 PM (GMT -7)   
Sounds good to me. Just a few typo's but your content is super. Go for it. Rosemary

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/26/2009 9:54 PM (GMT -7)   
lol i always have typos! ill have to check it super careful!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/27/2009 5:21 PM (GMT -7)   
I am writing on behalf of the members of the ostomy board on healingwell.com.  Everyday we answer, and ask, questions regarding ostomies.   There is so little information readily available and much of it is misinformation.  Because of this we read posts from people who are afraid of surgery because they don't have the correct information.  So many people suffer from ulcerative collitis, crohns disease, chronic constipaion and other diseases, pumping their bodies full of dangerous drugs and suffering needlessly because they don't understand ostomies.  Many people think they will be confined to their homes because of a smell, or that people will be able to tell just by looking.  They think they won't be able to wear the clothes they want to.  Or that their quality of life will be compromised, that they will be unable to run, or swim or hike.  Or that their diet will be restricted.  When in reality, all of these are misconceptions.  People with ostomies can, and do, anything they want!  Another big problem is that people are made to think that surgery is "giving up" because of all the negativity regarding it.  Surgery is not giving up, surgery is taking back your life and winning, beating the disease. 
If you could spend some time on your show clearing up some of these myths up, maybe fewer people would continue suffering out of fear.  Many of the people on the board with ostomies held on needlessly to our colons, because we didnt know how much better life would be with an ostomy!  Your show is always good about providing factual information in a way everyone can understand.  And if you would touch on this subject and let people see someone with an ostomy, it would go a long way into clearing up all these misconceptions.
Please take this into consideration.  Thank you for reading.
Members of the ostomy board on healingwell.com
 
 
I added a little piece about how surgery is not giving up, and fixed a few typos, someone please proofread for me! 
 
 
 
 

UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 10/27/2009 5:41 PM (GMT -7)   
Summerstorm- I think it wounds great! hope they pay attention to you!! Thanks for taking the ball and moving it forward.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/27/2009 6:23 PM (GMT -7)   
I like it, too, it looks like you've found the typo's but I'll look at it again in the am...when I have a brain again!!!

Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 10/27/2009 6:52 PM (GMT -7)   
Sounds great! Let us know what the response is. I would love to DVR that one!!!
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 10/28/2009 10:33 AM (GMT -7)   
Great idea. Summer,  but remember that there are ostomates  whose quality of life has changed. I can lo longer wear pants with a belt, because my stoma is right on the belt line and very large.  I almost look like I am half [regnant.  Left half.  Still when I remembeer before surgery how miserable I was and how much better I feel now, I am thankful fopr the cholostomy.  I think that for everyone who can go on with little change in their lifestyle, there are those who will need to make some major adjustments. 
 
 
ralph
When there are no more choices, tha decision is easy!


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 10/28/2009 5:33 PM (GMT -7)   
Ralph,

You should try NASCARon's cool invention to help keep stoma protected. It was posted awhile back but I think if you look up name you would find the post with pictures and everything. Works great.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/28/2009 8:17 PM (GMT -7)   
and its posted!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/28/2009 8:21 PM (GMT -7)   
ya'll go to thedoctorstv.com and vote for our idea, its under surgery and the title is ostomy information
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 10/28/2009 8:50 PM (GMT -7)   
Ralph, I have the same problem. I feel like I'm pregnant on my right side with all the gas that fills up my bag. Part of my bag hangs up over any waistband and that's what fills up with gas. I can't always "burp" it wherever I am. Anyone tried Gas-X and know if it works? I'll try most anything. Right now I just don't eat much if I know I'm going to be out where I can't quickly get to a restroom.

Summerstorm, I'll go vote for it!

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/28/2009 9:44 PM (GMT -7)   
take gas-x BEFORE you get gas, like if you are gonna go out and dont want gas take the gas-x then. Right after surgery i would take 2 gas-x in the morning then two more in the late afternoon.
I found that kept me from getting gas.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 10/28/2009 10:10 PM (GMT -7)   
Summerstorm, thanks. I'll give the gas-x a try. Whatever I eat seems to go through me pretty quickly, too. Does it help to take it before eating? I don't worry if I'm just home...I can take care of it easy here.

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 10/28/2009 10:42 PM (GMT -7)   
Summerstorm, I just went to website and voted. I also wrote a comment. Keep us posted if you get any response from them!

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/29/2009 5:34 AM (GMT -7)   
try those things that melt in your mouth if you think its not staying in you, and you can take immodium to slow down your output, or eat things like bananas, or french fries or peanutbutter they will slow down your output
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


BetterHalf
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/29/2009 9:49 PM (GMT -7)   
I voted too!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/30/2009 8:42 AM (GMT -7)   
thanks guys! maybe we will win!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/31/2009 3:08 PM (GMT -7)   
Great job, summerstorm! I just voted, too.
 
Here's the link for anyone who wants to vote: http://thedoctorstv.com/produce/vote?sug_cat=6&sug_sort=created_at
 
I hope it gets on the show!
 
 
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/2/2009 9:29 PM (GMT -7)   
so yall we are up to 130 points but we need more, so please vote!
Sadly, the first topic on the surgery page is now froma woman who has an ostomy and says she is depressed about being stuck with it for life.
And thats just what we dont want people to see ostomies as!
So please vote and help get this idea on the air!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/7/2009 9:56 AM (GMT -7)   
i posted on the UOAA website also and now we are to 160 and other people have posted their own questions asking the drs to do a show also!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/7/2009 5:40 PM (GMT -7)   
I voted the other day!
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