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Regular Member

Date Joined Jun 2007
Total Posts : 302
   Posted 9/9/2008 1:04 PM (GMT -7)   
 I have been struggling with this thought for the past few days. Do you think it is a good idea to let people know that you have had your colon removed completely? I have experienced many well meaning people who overdo the sympathy drill. They will come up to me and say "How are you dear?" And pat me on the shoulder, back or arm . I don't want to be pitied! I am fine. Then I'll tell them I am fine, but they don't believe me and pat my arm some more. urrrrr. I think I'll just have to go shot a bear to prove I'm still able to do anything I want to do!!!! If I had it to do over.......
You all are the only ones who really understand, so I am venting on ya'll--sorry.

Regular Member

Date Joined Aug 2008
Total Posts : 367
   Posted 9/9/2008 2:54 PM (GMT -7)   
Don't be sorry nene, I wondered the same thing even though I haven't had my surgery yet. When I tell people I'm having surgery they want to know what for - so I tell them! I think I'm going to start being more vague, because like you, I don't like the reaction I get.

When was your surgery?
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
The whole world is at your feet; so paint your toenails Red!

Regular Member

Date Joined Jun 2007
Total Posts : 302
   Posted 9/9/2008 3:30 PM (GMT -7)   
My surgery was last year. This last week I visited my daughter in another town. These people hadn't seen me in a few months, so they just thought it was alright to let me know they were sorry.Even though they didn't use words, I knew. The problem is that they are good, kind people that just don't know what else to do. I am hoping that with time most people will forget about the surgery because I really am FINE. Guess I'll have to get thick skinned.:)

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 9/9/2008 8:26 PM (GMT -7)   
i am very vague about it. Most everyone knows i was sick, they dont' know what i had though. What i tell them is that i had a weird reaction to an antibiotic which pretty much ate holes in my stomach. And that is true, just not the whole truth. Then when they asked what was done, i say i had the affected part removed and some repaired, all true. People still act like they feel sorry for you , which honestly, if someone told me they had to go through all that i would probably feel sorry for them too, lol.
But anytime people find out you have some kind of health issue they act like that. I finally told some friends that i had seizures in the past, which to me is far more embarassing than having a bag, and one of them hugged me and said, "oh you poor baby, i am so sorry!" i know she meant well but it was kind of funny. I told her it was fine, and that i didnt' have any problems now. So, she was like, oh ok.
So i think the best thing to do would be to say something like, "oh i feel much better now, but thank you for your concern." that's pretty much what i said to her

New Member

Date Joined Aug 2008
Total Posts : 11
   Posted 9/9/2008 11:40 PM (GMT -7)   
wink  Hi I tell not quite everyone but I do finding myself saying something like "well before I had my colon".. That leads to the fact that I don;t have a colon. I guess I went thru hell the last 4 years with the UC and I have had my illo for 9 months and feel great that I find myself sharing.. I would say I used to be quiet and shy and now watch out... I think all of my good friends have been great about it and some people I don't even really know are just curious about it.. Well Take care..

Forum Moderator

Date Joined Feb 2003
Total Posts : 1250
   Posted 9/10/2008 12:33 AM (GMT -7)   
People have different opinions on this. Some like to keep it to themselves reasoning that's there's no reason for others to know. Others, like me, think of it as 'teaching opportunity' and will tell anyone.
I've never really had anyone pity me, it's more like 'wow!  I would never have known!' They are usually amazed more than anything.
've had someone virtually say to me that I'm lieing cos they know perfectly well that you'd be dead without a large intestine! Boy, did they learn something that day? lol

I have had an ileostomy for 32 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

New Member

Date Joined Sep 2008
Total Posts : 1
   Posted 9/10/2008 12:56 PM (GMT -7)   
I had surjery back in 1984. Most people I go to church new what kind of surjury  i had, but i do not go around telling anyone what i have. Kind of a private thing.

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 9/10/2008 7:37 PM (GMT -7)   
Hey grentk,

I too had my surgery in 1984! There are a few of us veterans around here, huh?

I don't broadcast the fact that I have an ileostomy but I also think of it as a training opportunity if given the chance to open others' minds. I think that a lot of responses go right in line with the way that others find out about the surgery and how it is presented to them. A positive, upbeat attitude tends not to elicit so much of a sympathetic response; but more of a "wow" response.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Veteran Member

Date Joined Mar 2008
Total Posts : 624
   Posted 9/11/2008 6:01 AM (GMT -7)   
I would tell everyone about why my colon was removed (when i have it removed).  
People are so very very naive about bowel conditions - especially colonic inertia - i had never heard of it or even thought it was possible until 18 months ago when i was diagnosed with slow transit - it was a shock.  i am now so much worse and i dont care who knows what it is - the more people know the more better informed they are i think - too much of this hush hushness when it comes to bowels yet the world can talk about everything else deemed taboo..

1997: Diagnosed IBS
2003: Pelvic floor repair surgery
2006: STARR surgery for mucosal prolapse/Obstructive Defaecation Syndrome.  Also diagnosed with slow transit
2007: No difference. Had MRI scan showing a partial volvulus 
2007: Therefore surgeon recommended a sigmoid resection which resulted in immediate colonic inertia
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  In discomfort/pain most days.
Scared to have TC as told I could become incontinent - but looking to have surgery before end of year hopefully

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