To Share or Not to Share: The Dilemma of Disclosing Surgery

Hi everyone, I just wanted to share my thoughts on when to tell and when not to tell others that you have had surgery. I've had my ileostomy for 30 years this year, and my life has taken me into different family groups and friends several times. At first, I wanted to tell friends of my ordeal, and while they were sympathetic, no one really got it. After a while, I decided not to tell, and it has been a far better outcome for me. Here are a few benefits of not sharing...

If you are wearing appropriate clothes, no one can really guess what's underneath. I've tried to explain my stoma to a few foreign massage therapists before, and the language barrier makes it impossible, so I just say "no massage stomach," keep the towel on, and they never know.

If you need to undress in a room with others, like at the gym - just keep your back to the room, put on a long top first, and no one can tell.

If you have an accident and are showing stains, that's just a coffee spill to others or an accident with dropping food. If your accident is worse than that, just leave the party, workplace, or wherever you are, and tell people you have been sick and need to go home to get some important medicine. No one would deny you that.

If you get a major accident, then just leave. Later, when they see you have changed clothes, you tell them you were too hot, too cold, and decided to change.

The spares that I carry are in a small toiletries bag, and if ever I have to explain what's in it (like when going through customs), I just say "medical supplies." Feeling no need to go into the big long explanation, and it's never been an issue.

It's really rare that "normal" people sit around talking about how they go to the toilet or how their sex life is these days, so why should you feel it necessary to talk about your intimate life?

The downside to not telling is that you are keeping a secret from your friends that you may wish they would share with you if the tables were reversed. But then you have no control over what they may tell your other friends, and before you know it, everything gets awkward.

So, I prefer to keep my mouth shut to the outside world and just have comfort knowing there are others that are going through similar and that they (you) can be found online and via other specialized contact streams.

What do others think about telling or not telling? Happy to hear your thoughts.

Laurel

I understand your thought process and I agree. I really hate keeping secrets but there really is no need to be an open book.

I get where you are coming from. Myself, I'm a little selective about who I tell. I'm not out to show it off to the world, but it doesn't bother me if people know about it either. I look at it from this perspective: what if there were someone dealing with what I was before surgery? If they knew about my experiences, could it help them? I actually had a chat with a guy I work with right after I came back to work from my surgery. He explained that at some point in his future, he would most likely end up with an ostomy. Had I not been fairly open about my ostomy, he might have never known I had it and wouldn't have come to me with questions. I was able to ease his mind about the concerns he had about what he could and couldn't do with a bag. Honestly, I could have used this sort of advice pre-surgery. I made it through without it, but it would have been nice to have it from the beginning.

Hello Laurel.
I think that you have explained the argument for not telling very well and I respect your point of view.
I, on the other hand, am not particularly bothered whether I talk about the stoma or not. There are certain jobs I do not thinks are wise to do - like heavy lifting, so if that situation arises, I will tell the people I'm working with what the problem is and why I don't want to lift heavy things. Once they know, there seems little need to keep the conversation going, unless something else crops up that interferes with the work. One morning when I was late to meet my line manager, I felt the need to explain that I had trouble that morning with my stoma and to my surprise she was very understanding and shared with me that her husband also had one, so she was well aware of what can go wrong. Before the stoma, I was chronically incontinent, so it was prudent to let people at work know that I was not being rude if I left the room in a hurry.
As you so rightly say, most people do not need to know and I have plenty of other things to talk about and listen to without bringing the subject of stomas up.
Mind you, it's great to be able to talk openly about it on this site because it gives me some practice for what I might say if and when I do have to discuss the matter with the big bad world outside.
Best wishes
Bill

I don't tell unless I really have to. I am single now and have told a couple of guys that I was starting to get intimate with and they ran a mile. Xx

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Me too, I don't tell unless I really have to.
It's something personal and it's better to keep it to myself. xx

I've had my ileostomy for 36 years. There are friends and acquaintances that still do not know. I've never seen the need to try to tell unless they are truly interested in my health. When I do tell, I start out from the beginning and tell them how bad life was beforehand. That does seem to help with them understanding. It's not just about the ostomy; it's also about the disease - Crohn's. It's never made a difference to my hubby as far as our sex life. Yes, I've had to leave a variety of places due to accidents. That's going to be a fact of life. The ostomy saved my life, and I'm sure to tell that to anyone that I may talk about it with.

Hi all. I've had my ileostomy for 14 years and used to really stress about who I should or shouldn't tell. Once I got over the fear that everyone could see it, which of course I now know they couldn't, I decided to only tell those who needed to know. At the time of my surgery, I was a solo mother with no partner. A bit hard to have a relationship when you're sick all the time! Once I recovered from the surgery and felt healthier than I had for a long time, I entered into a new relationship. I told him the first day we met and it was never an issue. We later married and were together for 10 years. For reasons which had nothing at all to do with the ileostomy, we split up and once again at the age of 48 when I met someone new, I had to have the same talk. But again, it was never an issue for him and we are still happily together now. For someone to run a mile when their partner first tells them means they are not worth your time. It doesn't affect who you are as a person or stop you from going out and having fun. It also doesn't stop intimacy. In fact, it was more my issue than his as I always feel embarrassed at first, but you have to push past that and get over it and remember it doesn't bother them, so don't let it bother you. So to all out there, don't be scared to tell the people who matter to you. But as for casual acquaintances or work colleagues, it's really none of their business and doesn't affect your relationship with them, so why bother to tell them? On the other hand, if you have a close relationship with a friend and want to share, then go for it :)

Love these posts. I am new to this as I was with my partner when he had the op and it didn't bother him at all. I think the wording could be changed. You have been lucky to find new partners that are not bothered. I know there's a lot of decent blokes out there and I'm sure I'll find one somewhere. x

My hubby and I had one date and then I was in for an ileostomy. I figured he'd run, but he didn't hang around and was very supportive. One year later, the Crohn's ate out at my stoma and I had to get it revised, plus get my Barbie Butt. Very serious surgeries back to back. I figured he'd run for sure this time, but he didn't. 6 months later, we got married. Now together 36, married 34. He probably should have run! LOL!! I agree, I don't care to see bags hanging out for the world to see like a badge of honor or a look at me type thing. If it's absolutely necessary, that's different. But like what was mentioned, I don't think the public wants to see it. I feel it's not helping our situations. If a friend were to ask me, "May I see your bag?" then I'm going to show it to them. I've been places, spent nights in hotels with a friend, and have kept my modesty. That's just me. I'm probably old school, being 65 though!

I forgot to add... yes, we do need to make people aware of ostomies and what they are, but not by brazenly showing them out in public. We are getting there by the fantastic events you can go to, great sites (like this one); the sheer amount of videos on YouTube and from the amount of companies out there jumping on the bandwagon to produce and supply us with our necessary products - and make a tidy buck for doing so! These companies are making a fortune! I'm in the U.K., so I get all my stuff free, on NHS prescriptions. I was shocked to find out the cost of a box of 30 bags! There... I've had my rant on this now... I think... lol. Hugs to you all. xx

Teddie, how true! Amen to that! Angelica Marie