How did you 'out' your ostomy?

As a teenager it's very hard for me to tell my friends about my ostomy because they don't quite understand. However, they do support me quite a bit. I only told them three months after getting my bag, and it was quite a relief, though only a few of my friends know, not all.

Some of my family members don't even know yet.

How did you tell people about your ostomy? Was it easier for you to tell them or keep it a secret? When did you tell them, who knows, and what was their reaction?

I don't find it embarrassing. I just think it's hard for people my age to fully understand the situation.

There is a balance between telling some people and keeping it a secret from others. I know that at work there are people who would probably be sorry if they knew as well as people I want to be distanced with anyway. So I only told one woman at work, a pretty mature person who isn't up for all the stupid games most people there are playing.
I told my oldest friends and cousins.
I told people I knew could handle it and be supportive. If I am not sure aobut someone, I do not tell them. The people I tell have to already be emotionally "safe places" for me.
But I do understand what a burden it is to keep it secret.

What I get from the people I do know is important. Mostly they don't think about it or mention it so things are normal. Some of them make jokes about it which I love (if my stoma makes some noise, my friend excuses himself)
When I have moments of impatience and I just want the entire process to be over, I could suddenly say "I can't effing stand it anymore!!!!" and my friend knows exactly what I am talking about.
Because I decided to be more closed about it than open, I only need small bits of support from friends and it's enough for me.

I am always open if it comes up. I only bring it up if it fits naturally into the conversation, because otherwise it's weird, but my entire family knows and just about all of my close friends know. I find that it is SO much easier if people know. No one has reacted badly. Most people don't really understand it but if you put yourself in a position where they can ask questions and know they're not making you feel awkward, it's totally fine.

I really feel like the key is in the delivery. If you make jokes about it, make everyone feel like you're comfortable about it, etc, they'll be comfortable too.

Just yesterday (I'm a teacher) we took our students to Disney for a field trip, and the security guard came and said,"I need to check your bags!" and one of my fellow teachers goes, "Ok, Steph! Show him your bag!!" and we all had a good laugh. It's so much better if everyone knows.

Steph,

That was a good one, I'm going to check all your bags.

All my friends know as they saw me through my year of h___ with large and small bowel scarred in so they were all cheering me on to find help however it had to be done. After I had the adhesions taken off my small intestine and my ileostomy, a friend and I came up with this whole monologue of one-liners: It's all in the bag, I'm a bag lady, I don't take cr-- from nobody, don't be left holding the bag, I carry portable luggage, we all come with our own baggage some of us more than others. And on and on. (of course the whole serious part is as long as the inner workings keep working all is really well with the world)..Thought you'd get a kick out of our one liners.

rupindah, I am in my 50's and became an ileostomate to save my life from this unreal gut scarring issue from a GYN surgery which on review did not need to be done, too long of a story. BUT, if it helps any, I find it easier to let my close friends know, then if there is any issue, it is not like explaining things from ground zero, having them get over the shock, then dealing with the issue at hand (such as I HAVE to get to a bathroom to empty REALLY FAST).

That is just my take. Again, I am not a teen. I applaud all the young people dealing with all this. You are a very brave and strong group. None of us get a bag by choice though, so stoma's save lives. Good luck and I am positive that the friends who are worthy of you will be very accepting and glad that you are now well.

Rosemary

I was very open about my surgeries and experience with the ostomy from the point where I was finalizing my decision about surgery. For many people in my life, it was the first time they were learning about my UC or how greatly it affected every day of my life. I felt a strong need to be open about my experience and maybe raise some awareness. I was tired of all of the shame and hiding that had gone into my years with the illness. So, basically everyone who knows me knows I had these surgeries and did have an ileo. I was amazed and humbled by the outpouring of support I received, especially from people I know only from the running community! They have been so wonderful to me. I really haven't experienced anyone reacting to the news in a negative way. I'm older though and really not inclined to worry about what others think of me at all. Not sure I could have carried that off in high school.

Sounds like you and your friends are handling it well. especially with the issues with food at friends' houses. MUCH better to be up front rather than to have their mom's saying, why aren't you eating this or that?

Good idea. I know, bag jokes abound. Hope your take down goes well. Rosemary

When I went for the surgery I told only my two sons. I did not want visitors at the hospital. It was the first that I was a hospital inmate. After the surgery I did not bring up the subject but did not hide it.

Same with my parkinsons. If someone notices one of my symptoms I tell them.

NOBODY CAN SAY WE ARE FULL OF S##T.

Dan

I only tell people if in conversation my illness (or someone else's) comes up. Many people in my life know...but at the same time many don't.

It's really personal and there isn't a right or wrong.

I've been pretty open about mine, as I was very sick before, and in the hospital several times, had to go on disability, needed a second surgery w/bed rest etc. I kept a carepage blog for family and friends, and then it extended to co workers, friends of my partner's etc. So, some people in my life know way more about me than I do about them.

As I get better, I see less reason to make a big deal about it -- as some others said, if I'm not sick, it's not necessarily something I'm thinking about....

I think it's important not to do things that make you feel bad about yourself, though.... what that is depends on who you are....

question are you a female or a male not that it makes much of a diffrence! but i figured by reading your thread if you would have questions about clothes plus summer is comming ...anyway im 18 i had my stoma at 17 and i told EVERYYYYYBODY i was actually telling people before i got it and what really helped me is i took pictures of my stomy and my bag and put it on facebook .its all on there AND OUT THERE i got a lot of replies like OMG what happened i told them and in my pictures i made sure they saw my smile to know that what happened to me is for the better! Also i may just be a strange person but i for somereason was able to bring it up with strangers and to my suprise i helped a couple of people. one lady in the grocery store we somehow started talking about it ohhh because i needed a restroom and then we got into my bag and then she told me she has always had chronic pain and sometimes bleed through her bowels but do nothing because she didnt think it was a problem ......i told her a little how i thought that to! and here i am not that i regret it but you have to be aware of what can happen and risks i also helped my aunt who i wasnt as close to and now we are developing a relationship this thanksgiving she asked to see my bag i showed her and she said to me girl you are strong i could never go through that 3 weeks later she had 3 in. of her colon removed and stayed in the hospital/rehabilitation for about 3 months shes in her 60 or 70 she doesnot have a bag but i think allowing people to know or find out is so helpful and honestly when i had my bag i felt it was my job to let people know . because when things like this happen to other people we think omg suxs to be them and after my surgery i realized i am the same person and my friends know me as crazy jackie and i have a poop bag is what we called i told them but ina humors way i would joke and say thats the quickest poop i ever took! or when it would make noise i look around like who was that ..... when i went back to school i had no idea what to wear so i started dressing like asn old lady and wore whatever people started to cal me grandma ....somepeople thought it was a mean nick name but i went along with it i said i am grandma i cant move as quick so i would always tease with my friends and make them walk slow i would be the last one eating and the longest in the restrooom ..... i guess im talking to much but i think you shouldnt be afraid ..... it was really never a thought for me to be afraid of someone finding out and what really boosted me confidence is when i missed wearing my regular clothes like leggings and half shirts (thats why i asked if you were a girl) but one day i said forget this bag because its gonna be there and i went to school with my favorite half shirt on and black leggings i was SOOOOOOO CUTE but the downfall was i obviously diddnt know when i went to the bathrooom so during the day when i had got up to switch classes my bag was fulll and visible because of the shirt i kinda held the bag only becasuse i was scared it was gonna burst but i didnt hide it and no one said anything ...im now doing online classes but i dont think everyone knew about my bag but thoes who did kinda admired me!!!! what we are going through (people with ostomy bags) are strong brave people because one of my friends who is a teen my said to me i could never go throught that jackie and i thought my bag girlllll I COULD NEVER HAVE A BABY lol .....sorry for writing so much but i hope i helped in any way

Post Edited (Jackie_0mg) : 2/29/2012 4:50:06 PM (GMT-7)