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Posted 5/23/2006 12:38 PM (GMT 0)

I had an ilestomy performed on January 23 of this year after many years of crohn's disease.  I find the ostomy a "no-brainer".  I have had my share of accidents but all seem to be for a reason that I can fix.  My only regret and it is getting to me, is that I wish I never told some of the people that I did tell about the surgery.  I remember my husband saying that his family should know because they will figure it out eventually anyway.  But now that I have been living with this, no one would ever know unless you told them.  I am felling very exposed.I even have a couple of close friends that I wish didn't know about this.  Yes, they would know about the surgery but I could say I just had a resection.  Of course, the people I told had to tell their significant other or mother or whatever......I could kick myself.  Any thoughts!?

Posted 5/24/2006 12:39 PM (GMT 0)

Artist,  Why are you upset over this.  Are they no longer speaking to you?  Are they teasing you or something like that?  Believe me, things could be alot worse, so don't get down on yourself for letting people know.  There is nothing to be ashamed of.  I am a police officer, and you want to talk about a group that can really ride you hard?  Wow.  These folks can.  But let me tell you.  I was up front and honest with anyone that asked me what had happened, and I have been shocked at how kind and understanding the folks I have talked with have been.  In fact, I have found out that there are alot of people on the department that have the same U/C or Irritable Bowel symptoms and alot of them didn't understand what was going on.  Many are now seeking treatment. 

I guess what I am trying to say is that I doubt seriously that you sent in a special request for anything that has happened to you to happen to you.  This is just a part of life and there's not alot we can do about it.  It is times like this that you find out who your "TRUE FRIENDS" and "SUPPORTIVE FAMILY" are.  Trust me.  My eyes were opened wide.  Folks I thought were my true friends won't even talk to me or are embarrased by me.  Personally, I've moved past that, and you will too.  Hang in there.  Like I recently said.  God never gives you more than you can handle, but he's recently spent a little more time on me.  Ha ha. 

God Bless.  Phil

Posted 5/26/2006 10:47 AM (GMT 0)
I have had nothing but support.  No one gives me any kind of greif.  I joke about it with one of my best friends all the time.  But bottom line is that I think it's private.  I'm not saying I wouldn't have told anyone, but I wish I had left it to my mom and two of my best friends (obviously my husband and kids).  I'm not ashamed at all.  This procedure saved my life, literally.  I guess I just don't think it is necessary to know this about someone.  Now my sister in law knows this intimate aspect of my body, but I'm sure she would not want to share intimate details regarding her bowel movements or her mentrual cycle....again it's a privacy thing for me.

Posted 5/26/2006 11:22 AM (GMT 0)

Ok, I see where you are coming from.  I can agree with that, in which I don't go out and publish the fact, but if someone asks then I'm not ashamed to talk to them about it.  I can understand your regrets in telling some folks, but realize also that it is done and you have to move past that.  As long as you are not feeling any guilt, that is what is important. 

Take Care.  Phil

Posted 5/27/2006 6:33 AM (GMT 0)
Artist, I'm with you.

I don't have an ostomy yet, but I browse here for... reassurance?... (hope you all don't mind) because it has been a definite option for me for quite some time now.

I was really sick in 2004, stuck in hospital, and the doctor told me I was probably going to need a permanent ileostomy. The only reason I don't have one now is because I got some relief from Remicade, but it's still possible I may end up with one eventually. Anyway, I got out of hospital in 2004 to discover that my family had told all their friends and associates that I was probably going to have an ileostomy. *They* said that it was important that people knew what I was going through and that I was seriously ill. *I* would argue that it's private, and that if people didn't know I was really sick, then they were really clueless and not worth bothering about anyway.

Anyway... the damage has been done. No privacy for me now, if I do end up with a bag. It bothers me a lot.

Also, I feel as if I'd like time to adjust to it myself, without everybody probing about it and being so *sympathetic* and **understanding**, if you know what I mean. Sometimes it's hard enough going through something, without everybody knowing - in detail - what it is you're dealing with.

Artist, I've only shared my perspective because I think we share similar feelings on this issue. Is that sort-of how you feel? That you just need a bit of time and space and privacy?

Best wishes to you,

Ivy, really from the Crohn's forum.
Posted 5/29/2006 9:59 PM (GMT 0)
Dear Ivy...I appreciate the understanding.  I must say my quality of life is 200% better.  If you are at the point where a decision must be made soon, I would encourage you to do it.  For me, I was becoming house bound because the urge to go would be so fast and frequent that I was becoming incontinent.  More importantly, I had a stage 4 colon cancer in 1996.  Every year my colonoscopies showed my crohn's worsening and my risk for reaccurance of cancer was extremely high.  I wouldn't change my decision to get the surgery, but I certainly would not be as free to share the info with anyone but the people I mentioned in my previous post.  As a matter of fact, I didn't tell anyone at my work place except one supervisor. And I'm a nurse...I was out 3 months, by the time I got back I was starting to feel that exposed feeling again, so I kept my mouth shut.  Some of the nurses even has the balls to ask if I had to get a bag.  I don't care if you are a nurse, that's none of your business!!! 

Posted 6/23/2006 9:26 PM (GMT 0)
Yes. I wonder how I'd handle that question if someone asked it of me. What did you say? I can't think of *any* way to deal with it without revealing the truth.

I.
Posted 6/24/2006 4:53 AM (GMT 0)

Hello :)

I have had an ileostomy since March of this year.  I had it in order to get relief from Ulcerative Colitis and a constant cycle of prednisone and imuran which eventually became completely ineffective.  I am only 24 years old and I had just finished my teaching degree and started working.  I was extremely frustrated by my quality of life and felt restricted in looking for a contracted position because I knew when going into an interview I could not guarantee them 100% that I was the right person for the job because of my health.  So I decided to continue as a teacher-on-call until my health issues could be resolved.  Now, I had a very traumatic experience with my ileostomy as I had several seroius complications during recovery.  Instead of it taking the usual 2 months to feel a lot better it took me closer to 3 and a half months ( I am just now starting to feel like myself).  Despite all of the problems I have had I am certain I made the right decision by having the surgery at such a young age. 

Where am I going with all of this???

I told all of my closest friends about the surgery as well as my family.  They had seen me struggle for years with UC and I saw no harm in telling them about the surgery.  It would have been more of a burden for me to hide it from them.  And they have been awesome!  Very supportive and surprisingly curious about the surgery and how it has changed my lifestlye.

Maybe it is the teacher in me or maybe it's just my personality but I am not ashamed about my ileostomy.  It is really starting to improve the quality of my life and I am proud to say that I have survived all of those complications.  I have no problem at all educating others about what I have been through and in fact I think it helps me to deal with and accept my lifestyle.  I have a chance of having a j-pouch made in 6 months or so, but even without that chance of going back to a "normal" lifestyle I think my feelings and perspective would be the same.  So I say be PROUD of surviving all you have been through.  It is totally up to you who you share your information with.  It should certainly be your information to disclose to who you want but never feel ashamed or less because of it.  Sorry if I rambled on a bit there :-) .

Earthgirl

Posted 6/24/2006 9:14 PM (GMT 0)
It's funny, isn't it? The more I read on support forums, the more I think that the people who are *determined* not to feel bad about themselves, are the ones that don't.

It's almost as if, if we expect to feel bad about ourselves, we will.

Badly expressed, but am I right? It seems too twee to be true.

I.
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