When to Reveal My Ileostomy Bag?

I had my ileostomy nearly two years ago now. I am thinking of starting to see someone again, as my marriage did not last through the lovely bag hanging off me. When is the best time to tell a woman about the bag? Should it be from the offset or hide the fact till you get to know her, or is that deceitful? Ladies, what do you think, and what experiences have you all had in this area, good or bad?

There's no right or wrong way, just what's right for you. I've had my ileo since I was 20. I always tell women at the start that I have an ileo. It's never caused any problems. You might get one that will run away screaming in horror, but it's better to get rid of them at the start before you start falling for them.

From my point of view, Panther is right......best to be honest and upfront, that way you soon get to know who is worth your time or not.

Good luck Lee...xx

I also feel that the best time to let someone know about your situation is straight away, as if they are going to cut and run, they will sooner or later if they are put off by the bag.

I know others feel differently about the timing but really if someone is interested and cares about you in the way you want her to she will hang in, if not she will do a runner.

Good luck mate
Ken

Sorry to disagree. I don't think it's anyone's business about your ileo until you feel confident with your date, i.e. going out more than a couple of times. You will know the right time to share your story. I would do it early in the relationship but not right at the first date. Just my two cents' worth... Best to you! Yaya

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

I agree with Yaya. Don't blurt it right out on the first date, but get to know the woman. Get to know how she copes with situations. Maybe she is a strong person and is willing to learn about your situation and accept it. Then again, after you get to know her and you discuss medical stuff and you find out the thought of an ingrown nail sends her screaming out of the room, I'm thinking an Illio would send her into total shock and the defibrillator would be needed. Also, don't wait till the last minute either by ripping open your robe and say "HEY!!! look at this!"...hahaha

Best of luck to you, go with what your heart and gut tell ya.

I always get confused by this whole question. So if I understand it correctly, you either wait or tell someone fairly quickly that you have an ostomy. By getting to know them, they presumably will get more attuned to it? Is that the case? I just have total confusion over this.

But the way I see it, the person in question is going to have exactly the same feelings about the idea of the bag no matter when you tell them. The issue, of course, is the fact that you have the bag and purely nothing else. Otherwise, we would not be discussing it here. Taking time and building a relationship is one thing, but to then tell someone you are not what you appeared to be is asking for trouble.

I'm in the same boat, man. I'd have a hard time stringing a woman along for very long before telling her. I'd hate to get close to anyone only to get rejected because of the ostomy. I'd rather they know upfront or in the beginning stages before getting too close to anyone....I think it would save a lot of heartache on both sides. I was married for 13 years, been there done that, and at this point could give a rat's ass about any women who see this as an issue. It's best you weed out the shallow ones early.

Just tell it like it is. You must like the lady in question, so if she's interested in you, it's who you are she likes. And if a bag comes between you, she's not the one for you. Good luck, one day at a time.

So nice to hear all your opinions. I haven't met someone yet, just thinking about the dating thing again, but must admit it does worry me. But confidence is low, especially after my wife leaving due to this. But she must have been shallow!

Forgive me for judging but... your wife was no woman if she left you over your ostomy! How self-centered ridiculous!

I was reminded the other day by a fellow ostomate that a study by Memorial Sloan-Kettering Cancer Center found that men are more likely to abandon their spouses when cancer strikes. Perhaps the nurturing nature of women promotes their commitment to that part of their marriage vows which talks about "in sickness and in health". The same phenomenon might also be true when wives have ostomies. It's appears statistically unusual for women to abandon their husbands under similar circumstances. I wonder what happens (or doesn't happen) when children are involved.

I know some men and women, prior to surgery, will prepare their spouses for life with an ostomate. This preparation may involve education, looking at ostomy videos, or even visiting this site. I think that when spouses see how common ostomies really are and how well so many partners adapt to the changes, their marriage will remain on solid footing. Readiness is everything. Healing definitely requires strong social support, but waiting until after the surgery to address this component might be too late.

Hi,
I think it is the most panic-stricken, awkward moment when you have to tell someone about your bag....We always fear rejection, etc., etc....But I have found that I have had nothing to worry about. I normally wait until I know them quite well and have some trust in the person before I tell them. It's a big thing to me! I wish you luck in your search for love! If she is worthy, she won't care.... Nicole

It's normal to feel nervous. Most of us have had relationships before an ostomy. You see them once or a few times, then you or they decide it's not working out. But when you have an ostomy, a lot of people put the blame on the bag. But 90% of the time, it's nothing to do with it.

I consider myself too open about my ostomy. I am also married and she doesn't mind that I have a bag. Also, she is a RN, not that I want her to take her work home with her, but she is quite skilled, and I appreciate it.

So, I said all that to say, while I am not currently in the same boat, I can understand. If I were on the prowl, and something was becoming more regular, it would be a matter of waiting, not for the right time, but when there is a level of trust already in place.

Well, unless your ostomy is awfully quiet all the time (which mine isn't), I think it would be better to be up front about it. I usually tell anyone who will listen my cancer story, and if their eyes glaze over or they look ready to hurl, then I know to forget about adding the colostomy part.

Seriously - I am one of the "leftees" - my husband wouldn't touch me after my first (temporary) colostomy back in 2003 - after 24 years together. A squeamish sort. Had a better offer.

I just attended a support group, and a sex therapist was the invited guest speaker. She recommended getting to know a person and then bringing it up (cancer, ostomy, whatever) at a relaxed, neutral time - when would that be????????? Well, not right before sex was about all she could come up with;

Perfect. Exactly the point!!

My husband sent me off to the spare room to sleep as he was not able to cope with my bag. After 5 years, I left and have dated a few. I told them pretty quickly about "my friend". Some took off instantly, but no one seems to want a permanent partner. They seem to think they can play with my feelings, so now I've given up. Maybe I was choosing the wrong guys. Who needs them!

Hi Boatlady. Please don't give up on men and dating. I had a hard enough time with dating when I was "normal" and felt good. After I had my ileostomy, I thought my dating life was over. I found my sweetheart on a regular dating site. I didn't tell him until our 3rd date, and he has been very supportive, helpful, and understanding. He's a keeper. I know he can't be the only good man out there who likes you for you. Hang in there. He's out there looking for you. I promise. Best of luck to you. Let me know how you are doing. Hugs. Yaya

Hi, I can totally understand your low self-esteem due to your wife's rejection of you. My husband went off me even before I had one (he's much older than me and didn't want to be bothered with being intimate). I've always had low self-esteem, so having the bag made me feel like crap ('scuse the pun!) especially when I still was rejected. We haven't been intimate for three years and even been told it would have been better if I'd died. Plus, it took me over a year to come to terms I have one. Now, I've had it just over two years. If I ever found myself in a new relationship, I'm not sure how I'd go about telling them. I guess when you think it starts getting to the 'kissing' stage, and then I'd have to. But yes, better sooner than later, but talk about it in a positive light, showing you accept it, and that it isn't an issue for you. That may take some practice of talking to yourself! x

Listen to yourself talk, Boatlady. "M
y husband sent me off to the spare room to sleep as he was not able to cope with my bag." You sound like he treated you as a bad child. Don't you know what frying pans or rolling pins are for??? Come on, Boat, you need to seriously revisit your self-respect. Don't let losers control your life. There's an old saying about catching more flies with honey. Well, translated here, you will attract more men with a positive attitude toward yourself. Set high expectations and don't settle for less. Otherwise, your poor self-image will become a self-fulfilling prophecy.

After I had my ileo, I was told not to tell anyone that I was going to date about it right away by everyone in my support group. I met someone on this site actually which did help with the first times but that relationship didn't work out.

When I met my current boyfriend, I told him that I had been told not to tell right away but felt it was important for him to know about what I had been through. He said it didn't matter to him about the "bag" and that was the end of that. I do agree it's all in the person you are dealing with. Don't tell someone until you feel it is someone you are interested in getting to know better....so at least a second or third time getting together. It does take the weight off of the time that you do finally get intimate with that person to have it out of the way.....

It is a trust issue. I've had mine for about 4 years, and have never felt comfortable until it's a known issue. Yeah, I look normal, but there is something in my pants that needs to be discussed before intimacy is an option. It takes a lot longer to get to that point than when I was 20 and had nothing to hide. I don't hide my ostomy and most are somewhat curious about how it works and what happened that resulted in it. In midlife, I'm not on the prowl, but trust is important, before you disclose your condition.

I praise God that this thread was featured, and allowed me to contribute.

It's so interesting and useful listening to all points of view. Why is it that people who have bags appear so nice? I know there are so many people out there in all areas. It's a shame that there is not more support, and when you have these opportunities, they don't tell you about sites like this, which I stumbled upon by accident. I just live in a small town, but the stoma nurse told me there were a lot of people in the area. There is a whole community close to you, and a lot feeling like a lot of us do. Such a shame.

Of course, if your stoma outs you, it's not necessarily do or die, fish or cut bait, insert preferred either/or quip here, but in my overly open experience of approximately one year, I like to say that I have an ostomy, not a bag. If they say "oh you have a bag", I usually respond with, "yes, I like to call it my gear". And in my overly open experience, I usually follow up with why and whether they want to know or not: because of stupid cancer.

From what I remember from a post I saw on another forum, I think the author was female. I don't know how old, had called her stoma (prob'ly by the name she gave it) the jerk detector. If the news of her ostomy is a deal breaker for said jerk... let me use a classic comic book term: 'nuff said.