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To Tell Or Not To Tell ???

Posted by Laurel

Hi everyone, I just wanted to share my thoughts on when to tell and when not to tell others that you have had surgury. Ive had my ilesostomy 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 noone really got it. After a while I decided not to tell and it has been a far better outcome for me. Here's a few benefits of not sharing...

If you are wearing appropriate clothes noone can really guess what's underneath. Ive tried to explain my stoma to a few foreign massage therapists before and the language barrier make 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 noone 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, work place whereever you are and tell people you have been sick and need to go home to get some important medicine. Noone would deny you that.

If you get a major 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 exclaimation 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 about what they may tell your other friends and before you know it everything gets ackward.

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 on line and via other specialised contact streams.

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


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Head : I understand your thought process and I agree. I really hate keeping secrets but there really is no need to be an open book.
Sasquatch : 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 prospective, 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 from the beginning
Bill : 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
Jackiee : 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
benisthebest : me too i donot tell unless i really have too its something personal and its better to keep it to my self xx
Peaky49 : I’ve had my ileostomy for 36 years there are friends, 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 do 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.
Donz14 : 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 :)
Teddiee : I agree with the majority here - NOT TO TELL. I have only told guys about it when I’ve been with them some good time....when they are REALLY interested in me. Even then, I don’t go through the rigmarole of telling them EVERYTHING. I never, repeat NEVER say “I’ve got a BAG, or I have to wear a BAG. It’s the BAG word that does it - OR - the word COLOSTOMY. I’ve got an Ileostomy and not many folks have heard that word. When the dreaded time tell...I say “I have to wear a DRESSING on my TUMMY”. It sounds soooo much better than “I’ve got a BAG on my Stomach”. NEWLY MET “prospective partners” would, more often than not, run a mile at the first mention of the word “BAG”. I then go on to say.....”There’s some enzymes I can’t digest”. I’ve NEVER, EVER said I have to poo in a bag stuck to my stomach”!! Well.....think about it for a minute....which do you think sounds better, if you did not have an Ostomy and did not even know what one is? The “I have to wear a dressing on my tummy” has always been a 100% “success” for me. If they ask for further details, THEN I tell them how VERY I’ll I was.....and that I’m just fine now (no horror stories about smells, leaks, etc. Lol). I tell them I can swim, run, horse ride....this makes me sound as if I’m not gonna be restrictive in activities within the relationship, which, fortunately, is the case for me. I am pretty fit. I’ve had my Ileostomy for 47 years!! and it does not stop me from doing ANYTHING really. In the beginning, when I first had it, a leak was a MAJOR catastrophe. After a good few months, I just “got on with it”. Now, a leak is just that....a leak!! No big deal ...just Get on with it!!”. If you think about it from another don’t see many amputees getting their stump out to show all and sundry!! “Hey! Wanna see my stump?”. I CANNOT, for the life of me, condone folks “showing off” their bag, sorry, DRESSING, in a skimpy bikini!! Victoria Beckham NEVER wears a bikini because of childbirth scars on her tummy. She wears some FABULOUS one piece all-in-one Swimsuits!! For Swimwear, Tankini tops with waist-high black skimpy shorts look great...and right on trend. I HATE to see photos of guys with a good portion of their BAG showing above their hip-hugging shorts!! For goodness sake....get some WAIST-HIGH shorts!! Many male MODELS wear waist high shorts and look superb!! Gone are the days of “budgie smugglers” for men, both in swimwear and underpants. Boxer shorts look Men with their Bags on show have commented “Well...this is ME”, take it or leave it”. I’d rather “leave it” - thanks. No, I’m certainly not a “prude” - and I’m well used to seeing an Ostomy Bag, having had this one for so many years, but I do certainly NOT want to see anyone else’s on show - and I’m pretty sure folks who do not have an Ostomy being faced with one clearly “on show”. I’d be embarrassed, and I’m pretty sure they would. They would not know where to look. Stare at the bag?, quick surreptitious glances? NO. I’d rather have folks look at ME!! So folks......the saying...”BETTER DRAPED” is quite appropriate with regards to “bags on show”. AND...“DON’T TELL ANYONE, unless you ABSOLUTELY have to!!
Jackiee : Love these posts. I am new to this as was with my partner when had the op and didn't bother him at all. I think 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 am sure I'll find one somewhere x
Peaky49 : My hubby and I had one date and then I was in for an ileostomy. I figured he’d run but he didn’t hung around and 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’d 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 had ran! LOL!! I agree I don’t care to see bags hanging out for the world to see like a badge of honor or 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 night in hotels with a friend and have kept my modesty that’s just me. I’m probably old school being 65 though!
Teddiee : You were VERY lucky Peaky49, to find and have your amazing guy stay with you right from the beginning of the ordeal you’ve been through!! Yeah....I’m 67, but a very young 67. I dress in modern clothes, make-up, the lot- making sure I don’t look like “mutton dressed up as lamb” though!! Lol. I am VERY open-minded and do think that folks SHOULD be themselves - up to a point!! The majority of us have been through a lot of suffering and pain. My Crohn’s started at 17, when attending Medical College to become a Doctor. Well that went through the window as I just couldn’t GET to college. Waiting for the bus....the sheer exasperation of have to RACE back up to my house to get to the bathroom- and I’d be in there on and off mast of the day. Having to leave a UNI Class to race to their loos!! If going out anywhere, I’d pray no-one was already in their loo as I made my dash? You been there folks? Someone in the loo when you NEED to go. It’s a bad enough situation for anyone......but if you’ve got Crohn’s real’s just horrific. I used to go out wearing pads....just in case.....and we would have to sit in seats nearest the loo wherever we went. So yes, we do need a badge - or a medal - for sheer endurance!! Back to the topic.....I will reiterate somewhat......people with other disabilities don’t try and shove them down in your face by saying “look at me”. Having your bag ON SHOW is just so people CAN look at you. I’ve asked many people about this over the years....and ALL I asked said they would NOT want to see a BAG being worn for all and sundry to see. They said they would be VERY embarrassed to see one. Folks....this is because most people don’t know ANYTHING about Ostomy Bags. They think you have a huge piece of gut hanging out from your tummy, contained within the bag, not the strawberry-like Stomas we have. They think there may be a chance of some poo on it.....yes, they do. No-one will shift me on my opinion of BETTER DRAPED.’re not HIDING something - just TACTFULLY concealing, by covering your bag up!! You are preventing and avoiding any embarrassment for people being faced with seeing one, usually for the first time. I’ve seen some sights in my time - but I certainly don’t wanna see other folks’ bags ON SHOW - thank you very much. I’ve got one.....had it for saved my life......full stop. Put it nicely away and get on with life, LOOKING “normal”.
Teddiee : I forgot to add.....yes we DO need to make people aware of Ostomies...and what they are...but not by blazenedly 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 Hugs to you all. xx
Angelicamarie : Teddie, how true amen to that! Angelicamarie