more education needed

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Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 4/26/2009 4:46 PM (GMT -7)   
So i went to the girlie dr the other week, one i hadn't seen before, and she came in and started asking me the questions and all that good stuff.  Well i told her about my ileo and she looked at me so sad and said,
"Oh that must be so difficult for you, and so hard to deal with"
And i said, "no it's reallly rather convient"
and i told her about having UC and she said
"i guess compared to living like that it's not that bad.  But it still must be so hard to have to live like with that" 
And i said "no it's still rather convienent, much easier than going the old fashioned way"
She just looked amazed that i would think that way.  the whole time she is looking at me like i just watched someone kill my puppy and she feels so sorry for me, like an ileo is a death sentence or something.
It amazed me that someone would think of it like that, and a dr none the less, didn't know enough to realize that they weren't horrible and awful.
I think that's part of the reason people are so scared to have surgery because of reactins like that to bags.
I think that somehow there needs to be more information given to people, esp medical professionals, so that misconeptions like that don't run rampant and scare people who could get their lives back by having surgery.
Just a little mini rant, lol

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 4/26/2009 5:17 PM (GMT -7)   
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined Nov 2007
Total Posts : 49
   Posted 4/26/2009 5:34 PM (GMT -7)   
I'll second that!!
I also feel this way when I hear "Your too young to have a permenent ostomy, surely something can be done." 
33 yrs old, Mama to my darling daughter (7yrs) and my little boy (3 yrs)
Diagnosed with UP in Feb 2005 Developed into UC by Jan 2006
Hospitalized July-Aug 2007 Pancolitis Contracted C Diff.
Salumedrol, Antibiotics Prednisone Imuran 100mg
Double dose of Remicade every 4 wks STOPPED BEING EFFECTIVE
Had a total colectomy Aug 1st 2008 2 step J-pouch, disconnected and reconnected
2 takedown sugeries, infections, leaks, multiple drains
Will be keeping my loop ileostomy, will not be removing disfunctioning pouch at this time

Regular Member

Date Joined Oct 2008
Total Posts : 262
   Posted 4/26/2009 6:08 PM (GMT -7)   
I agree Summer.  I know exactly what you mean. When I had my ileostomy I would get "the look" all the time when someone found out I had it.  Like...OOOOHHHH...and they would sort of treat me with kid gloves and say the same things your doctor did.  I always replied that Nope!   It was much better than dealing with the constipation all the time, and I was so very grateful to have my little stoma!  I felt very blessed that it gave me my health back and for that I was and ever will be so very very grateful!!.......Cheryl

Hysterectomy 1998
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
3 Hernia Repairs, 2004
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
I have underlying connective tissue disorder (Ehlers Danloss Syndrome) which is the reason for the two failed surgeries)
Ileostomy Reversal March 9/09

Veteran Member

Date Joined Nov 2003
Total Posts : 518
   Posted 4/26/2009 7:08 PM (GMT -7)   
OH!! I cannot believe how many health care professionals just don't understand or even know anything about ostomies!!! It makes me crazy!!! And it's across the board--doctors, nurses, aids, etc!!! There are so many of us ostomates yet I'm always treated like an oddity.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 4/26/2009 7:24 PM (GMT -7)   
when i went to the dentist the hygeneist (sp?) had no idea about them either, she however didnt act like the dr did, she was interested, i think she was jealous, lol.

I just think its pathetic that drs, i mean i know thats not a girlie drs specialty, but that she knew so little to think of it as a hindrance or handicap.

And i really think that makes it so much harder onpeople trying to make the decison for surgery because their drs (even the GI's) dont know enough about the people who actually living with them, all they know is what is in their books.

Forum Moderator

Date Joined Feb 2003
Total Posts : 1251
   Posted 4/26/2009 7:33 PM (GMT -7)   
I guess I'm lucky in that I've never really gotten 'the look' except, funnily enough, when I was in the USA attending an ostomy meeting with a friend I was visiting. They had companies at the meeting that day showing off their products and it was actually two women from a pharmacy supply company that were going 'oh you poor thing' when I told them I'd had my ileostomy since I was 10 years old! You'd think that since they actually supply ostomy products they would have known better! They couldn't (or wouldn't) believe that I didn't mind my ostomy at all and am extremely greatful for the life it's given back to me.

Ladyhawk, I hear you with the 'you're too young to have an ostomy' thing. People don't understand that you're never too young and that a lot of people have them since birth. I just ask them 'how old should I be?' lol
I have had an ileostomy for 33 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Regular Member

Date Joined Jun 2007
Total Posts : 302
   Posted 4/26/2009 8:25 PM (GMT -7)   
I had such a good experience with my new gyn doctor last month. Since I was new he had the get to know you meeting in his office before the ugh treatment. After a few minutes into the meeting I told him that I had an ileostomy. He was sooo kind, telling me stories from his own family--his wife and an uncle who had one and no one in the family knew about it until he passed at 90. He sincerely said that he would have never know I had one when I walked into the office. Geee that made me feel okay. Doctors of all people should be sensitive to our feelings.

vette guy
Veteran Member

Date Joined Nov 2006
Total Posts : 650
   Posted 4/26/2009 10:29 PM (GMT -7)   
I'd send a letter to the AMA.  Sorry to sound kurt, but doctors like that are in the wrong profession, and  attitudes like that can make an ostomate  feel like they aren't whole.  Feel free to give us the name of the doctor. I'd be happy to write a letter myself.  My blood is boiling right now!!!
Oh, and BTW....I'd find a new doctor!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 4/27/2009 7:34 AM (GMT -7)   
Well let me clarify, she wasn't being mean, she thought she was being sympathetic towards me.
It was just so amazing to me that a dr would not know the reality behind an ostomy!!!
Other than that she is actually a very nice dr and she is very knowledagble about the girlie part of doctoring, lol.
I was upset more over the fact that she didnt know anyhitng about them, then about her saying anything to me. Sorry for the confusion.
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