Have you "outed" your ostomy?

I may have asked this a long time ago, but I think I was on pain meds at the time, and I can't find where I posted it or under what heading.  Anyway, are you open about your ostomy with people, or do you choose to keep it private?  What made you come to this decision?

 

I have only shared with some people.  A handful of really close friends, my boss, and about half of my extended family know.  Most of the family members I wouldn't have wanted to know, but other family members told them while I was hospitalized and before I could communicate that I wanted my business private.     

 

This is a link to our "family blog" where I out-ed myself in November http://allbluezooadventures.blogspot.com/2011/11/know-any-good-colon-jokes.html  My very close friends and family knew about my Crohn's disease but it wasn't something I regularly talked about with other friends/acquaintances.

I had a VERY complicated surgery and recovery period that lasted the better part of 2 months and involved 4 trips to the OR in addition to 3 minor procedures. I NEEDED people to know what was going on because I NEEDED help! I have always been the helper, never one to ask for a hand, etc. when my husband was deployed or whatever but I knew I had to put that to the side and allow people to help me at this time and I didnt' think people would understand how much help I needed unless I put it all out there for them to understand.

In that process I realized just how little awareness there is about IBD, ostomies, etc. and I decided that I wanted to try to do something about it. I started researching and found all those blogs that are mentioned in a post from earlier today - those girls have got it down. They are spreading the awareness and doing their thing, I didn't think there was room for me - there was nothing left to tell really. Then I realized - my friends, acquaintances, etc. will never go to those blogs and read the stories those women have to tell because IBD and ostomies are not a part of their everyday lives. BUT, they will read my blog because I am their friend. And maybe they will share it with someone who knows someone with an IBD or who is considering surgery and it will spread that way? I couldn't NOT do it, it just felt right for lack of a better explanation.

So, I decided that there wasn't a place for "mature" (I don't want to say older!) professional women to go for fashion advice after they have surgery to become an ostomate. I wanted to fill that niche by showing people you can still be fashionable, professional - heck even SEXY with your ostomy and still be modest. I do go off on tangents (a lot) and work in awareness, etc. for IBD but I really am trying to stick to the fashion thing.

Geez, did I even answer the question? Oh ok, I don't run up to strangers and say "HI, I have an ostomy!". But if the conversation rolls around to something and for whatever reason the ostomy fits in then I talk about it. Lots of my friends are curious and I feel like I have educated them or at least they have gone out and sought information to be more educated about it because of me :)

And, my new blog is http://detouredfashion.blogspot.com/ in case you wanna check it out.

I am the same as mom2panda. Could have written that myself.

Mom2panda ... what you posted is the same here for my husband as well.

Those friends and family who know us both also suffered to a degree along with my husband and me.  So once he decided to have the surgery there was really no hiding it and they couldn't be happier to have him back like his old self.  Fortunately we have not noticed any kind of discomfort or change in behaviour from anyone.

Insofar as new people being brought into the loop so to speak...I suppose if the situation warrants it, it will be touched upon but not in great detail so as not to make them feel uncomfortable.  He is totally comfortable with it.  His age, no longer suffering and getting this second chance at life makes it easier to contend with and accept which is oftentimes not the case for everyone.

 

I am very open about it, but I also find that as I am healthier and more used to it, I am not always thinking about it, so often I have no cause to mention it. But I don't hide if something seems relevant.

I am too open about it. I was so sick with bi-monthly reoccurring diverticulitis infections, couldn't hide my illness. When I found a surgeon and a plan was discussed, I was still having infections. Every person would ask about the upcoming surgery. Was very worried, and if they were self-informed, these people would ask if I was going to get a 'bag.' I said no, it will be immediately connected. But it did disconnect. My reactions post op were of disbelief because of all the complications. I was mad and saddened. But I told people of my ostomy that already knew my disease and my surgical circumstances. After recovery and now, my openness comes when I can feel something towards that other person. Feelings of empathy, understanding, caring. I will also share my story as an education tool. My world is small though, little family and friends and the educators at my kids school. If I were working and/or in school and/or more socialable, I guess the same rules would apply in first getting a good vibe. Because of my easy going nature, when I do tell people, they are shocked, so in essence I wouldn't have to spill the beans.

I think who you tell and what you tell are individual decisions.
I decided to post my "story" on my Facebook page so that all of my friends there would know why I had been out of commission for so long. I got incredible support from everyone. I was quite overwhelmed.
I believe that in the end, when you are getting ready to get back into your active life that friends and family really don't care that much that you have an ostomy. They are just happy to see you better.

I write a blog online and don't mind who knows - For me I feel that it's really important to share my experiences - both from a 'therapy' point of view for myself, but also to help others - whether that's to educate or support. Many of my friends have commented that they had no idea what an ileostomy was before, or what I'd been going through and it's really opened their eyes. I shower at my running club in a communal shower and people ask me about it and it's really not a problem.

However.. that's just my way of dealing with it and I think it has to your own personal choice about sharing or not. Everyone I know - without exception - has been really supportive, interested and very kind to me about it.

It is definitely the ostomates decision. My husband has not specifically asked others not to make it public knowledge. We do find from time to time that friends of friends do NOT know as most of those who do know have respected his privacy and not gone around telling others. My husband actually has no problem with others knowing since it has saved his life and has given him a second chance at being able to enjoy life once again and be pain free.

However I can readily see and understand where there may be certain people you would rather NOT know for whatever reason. I think I would be a little annoyed if I asked someone not to share the info if I wanted it kept to a close small group that I have taken into confidence. Every one is entitled to their preference as to how their personal information is handled and others should respect that as well. Just my opinion.