Dating with a Stoma: When and how to disclose?

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HardTimes

Hi folks,

Hope you're having a lovely Sunday thus far!

I'm wondering for all the folks out there that are having the unfortunate experience of living permanently with a stoma (whether ileostomy or colostomy) and getting back out there dating-wise -- how do you do it? I had a brief attempt myself once since having an ostomy (mine is permanent too) and it didn't go great for a number of reasons, one of them being my shame/anxiety about having a stoma, and somehow, he didn't realize it, which was odd because although it's not a bag like most (I have a stoma cap as I'm able to irrigate every day), it's still kind of obvious to feel a piece of plastic there so I guess my real question is, how do you go about dating when you're sober?

I'm trying to bring some levity into this rambling post but it is a very serious question. Realistically, I know there are people out there that will be grossed out, and I'm wondering when the ideal time to tell someone about it is (somewhere between Hi, my name is... and let's get it on, which can be a lot of in between...) Maybe the argument is, if they're that superficial, you're better off without them, but taking myself as an example, I don't want to deal with it as a pseudo clean freak, so why would someone else volunteer to? Maybe getting to know them for a good while and THEN telling them is the way to go, so they have some reason to be invested before they find out about this new and gross reality? Then again, I suppose it's like telling a potential partner any sensitive/awkward situation when you're getting to know someone, such as in the case of an STD, or "here's the thing, my parents live with me/I live with my parents..."

Would be really interested to hear anyone's thoughts on this, especially younger folks like me in their twenties and thirties. (I think it's a different situation when you're already in a relationship/marriage, and the person knew you before your intestine made an everyday appearance.)

xnine

5 Common Intimacy Concerns – And What to Do About Them, from Hollister website. I posted this awhile back. ConvaTec also has an ad posted on here. Premium Content has lots of posts on the subject. Whatever you choose, do not wait till the last minute.

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Maried

Hi.. I am older but I received my colostomy at 23 years old .. afterwards I dated a few men and finally met my husband after 20 plus years and 2 children divorced. I am single and dating again. I never tell a date about my colostomy unless you want them to see you naked and or it becomes serious. Look for a partner with a kind, caring heart. A person that sees more than your stoma. It takes time to meet that person... so be patient and choosy about who you spend your time with.. you steer the ship. And date a lot of people; it builds confidence.

Having a colostomy is not gross to me.. kinda funny.. in a million years I would have never guessed someone has a poop bag on their tummy.

Many of us are very lucky to have this option.. it is just a very small part of your body. Sure better than pooping in your pants or...??

suzielebrocq

I recently completed my PhD and I wrote a workbook for women called 'Surviving an Ostomy: A Handbook for Women Celebrating Sexual Healing After an Ostomy' because of so many concerns around this issue. I was in a relationship when I got an ostomy, so I am not entirely sure of your experience, but I know I struggled with extraordinary shame around my body and my bag. In the research I did for my dissertation, there were many women who struggled just like you and found it very hard to put themselves out there. I think what I want to say is you are not alone. Some people said they put themselves out there on the first date and talked about their stoma, while other people waited until they knew the person better. There are also tips and tricks to making dating and sex a bit smoother as well. I think for me (even with a partner), it was a matter of being brave and taking a risk. I know that is hard though, honestly, even posting my story online feels hard for me as I am always concerned about what people think. Good luck.

Past Member

Married, you are so right. 

I agree completely with you. It takes someone who is very caring and isn't shallow. Obviously, you want someone who wants you for the wonderful person you are. A person that is interested in spending time with you to get to know you, not just scratch the surface. Keep trying to find that person with some depth and substance. That's my thought. Good luck. 

...mtnman 

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
HardTimes

That's reassuring to hear!! Thanks for the post.  

HardTimes

That's really helpful! And congrats on your PhD, I'm looking to enter a program in the near future.  

I think I'll take a look at that workbook :)

mdq58

It's been my experience that if you're embarrassed or ashamed of your stoma/body image, then your partner/date will be too. And it will just be a disaster.

I think the days of casual sex are over for ostomates. If you date someone, think about where this relationship is headed. It will likely head for sexual intimacy. Just let it unfold like you would have before you had an ostomy. If you make a big deal out of it, then your partner will likely feel awkward.

I've had an ostomy since I was 18 - that was 45 years ago. I've always been sexually active and am in a 25+ year relationship.

I know this advice is not easy, but I hope it's helpful.

Feel free to shoot me a note.

Mike Q

Immarsh

Kudos to Susie (Alberta, Canada) for doing her PhD on the topic. I did one of my psychology papers on the effects of being ill as a child, growing up, in and out of the hospital, while still gaining the confidence and self-respect needed to grow into a fully functioning adult... Hi, I'm Marsha, and I had my surgery at 15, and then my final (removal of the anus) at 19... It was definitely a life-changing experience, and I often wonder about the type of person I'd be, had I not gone through what I had... We didn't have stoma nurses back then, so people with ostomies visited newbies and advised on procedures, maintenance, supplies.. That was 16-year-old me, advising a mother to let her 12-year-old daughter go to dancing school, even though her "secret" might be exposed... In today's world, where doctors can replace hands, feet, arms, legs, knees... and even hearts, we're holding on to the what if or how to tell someone you have an ostomy... My ostomy is my badge of survival and courage, and personally, if the person I'm dating didn't know I had been sick, I wait to tell until I feel comfortable, and I think he has the ability to understand. There really is no one right moment. But it does have to start with you, I recently had a very "strange experience" with a relatively new date.. We went out a few times, had lunch and dinner, and talked a lot. I told him about me.... and my stoma, and it didn't seem to faze him. He never said a thing about himself..... so I wasn't prepared for our first sexual experience.. I've been with men who are "large" small..... have ED issues, and it's never interfered.. If you're already getting naked, then you would think that one would discuss any potential issues.... This very nice man chose not to.. He actually had the smallest (working?) penis of any man I've been with.. He did not have an erection..... nor did he ejaculate. He had been in a sexless marriage (his wife was ill) for more than 10 years...... and seriously didn't think he had a problem..

I wasn't "shocked" by the event, but surprised he didn't say anything about it.. If I had to compare, his penis was smaller than my stoma... We were together a few more times before I brought up the subject, but he still didn't think there was anything "unusual" about him or his size... Although we were still seeing each other, I knew he wasn't for me, and told him that he needed to get some more experience dating.. I was his first in 20 years (since his wife died the year before).. I wish him well, but it's just another indication how things work out better when a couple discusses things openly... Marsha

Maried

Great advice and story.. It shows that if you have confidence, your shortcomings still allow you to move forward in love.

HardTimes

I appreciate your advice.  

I think, however, that having an ostomy (for most of us who weren't born with it and were forced to adjust with only a few years under their belt...) that we want to be in a relationship with someone who is understanding and patient. I get feeling awkward, but I think it's like any other trauma one is trying to process, and a partner shouldn't judge you for it. It sort of seems like it's up to the person with the stoma to set the tone, and while that may be true to some extent, such as what your expectations/boundaries are, it's a give and take process. The other person has to also be willing to be ready to handle any kind of awkward/negative thing that happens in daily life, and sometimes humans don't always get it right from the get-go, but that doesn't mean it is a "disaster".  

HardTimes

Wow, that's very powerful. Thanks for sharing, Marsha... nbsp

I agree. Open communication is the way to go. I've certainly learned rushing into things never goes well, and how to ensure that taking the next step is something I want. That's interesting. He never thought anything of it... I suppose he wasn't exposed to much in his life?

Past Member

I second Hard Times' "wow" Marsha, there's a message in there for all of us.

After all, it's not the size of the wand but the magic in it, definitely not nbspall about penetration for most women. I have been with "smaller" guys in the past and they tended to make up for their lack of size in other areas and one used to joke about his "small but perfectly formed" appendage, a sense of humour is essential in any intimate encounter if you're lacking in confidence (always puts me at ease anyway).

Thanks Marsha for your story, "things work out better when a couple discuss things openly" - so true. Your wisdom on this site is much appreciated. nbsp

Franke

I was lucky to have a wife before my car accident. I've had my ostomy for 5 years and I often feel bad for my wife having to be with me because of my ostomy. I know she loves me and I love her. But I sometimes think it would be easier if I was dating or married to someone that also had an ostomy.

Maried

Why do you say that..? Relationships are always challenging. You are very lucky to have a wife that loves you.. Enjoy the relationship ..finding and keeping love at any stage in life is a true gift.

HardTimes

So sorry to hear that happened to you, it's amazing how so many different stories converge for one horrific result... That said, it's amazing she has stuck by you and what a sign that you two were meant to be! I think something like this is the ultimate test for relationships; not everyone, no matter how understanding and kind, can look past it. Hold onto her, she's a keeper :)

Immarsh

Hi, "Hard Times".....believe me, having a spouse with an ostomy is no guarantee that the marriage/relationship will survive. I was 20, and he was 28 when we married. I was "young", but at 28 he was more inexperienced and inhibited with dating. He had his ostomy for about 6 years, and I met his mother at an Ostomy fundraiser. Her line, "Have I got a guy for you". Other than the ostomy, we had little in common. My cage was unlocked, and I was well and wanted to experience life. He was a homebody (anxiety issues), and at first he thought I was a "novelty". We had the ostomy in common, so no adjustments or judging... Sigh. Wrong.. I loved being out and about, and being social. He liked being home. I liked adventure, and he didn't like to drive far or fly.. I loved dining out, he preferred being home.. I was too young to see the "writing on the wall, but he was trying to "parent" his wayward fiance.... Ironically, I really did love him.......he started out kind, sweet, and attentive.. But the novelty waned, and by the time we had two little boys, I realized we'd never be on the same page.. So, to make things easier, I did what he liked and entertained at home. I saved the adventure, beach, etc....to do with my kids & friends. But that wasn't good enough. He wanted me home with him......as he didn't like to be alone.. I even made the wives of his "ball friends" my friends.. I stayed married for 24 1/2 years, and it was a messy divorce. Our combined ostomies did nothing to "keep us together". OK....I'll be honest....showering together with or without the pouches wasn't an issue.. :>)) ; Be grateful for a spouse or partner who is loving and accepting...... Marsha

Past Member

Hi there. I know I'm super-late to this thread, but it caught my eye. First off, I'm not dating, I'm not 20-ish, and I'm a guy. But the 'body image' part of the OP caught my eye.... Specifically where you say "shame/anxiety about having a stoma."

I've had my ostomy for about 6 months, and have spent hours thinking through: returning to work, going out to eat, spending the day at the park, going hiking, riding my bike. Am I going to 'spill the beans'? Make a mess of myself? Get stoma sauce on my pants? Stink the place up when I have to burp my bag? Am I some kind of freak now?

But aside from worrying about the details, I've also been practicing Buddhist meditation. In the excellent book "Lovingkindness: The Revolutionary Art of Happiness" (Sharon Salzberg) I ran across a particular phrasing of a classic meditation:

"May I become a friend to my body"

I've always been at war with my body. Too fat, too tall, too slow, too freckly, eyes that barely work, too this, too that, no large colon, a bag taped to my stomach. Always critical, always at war. Why? To what end? Honestly, why I've been at war with my body the past 50 years is a complete mystery. But then...

"May I become a friend to my body"

I've repeated this a million times in the last four months, and I can tell you, it's changed me. I'm learning to give up a lot of negative body image that I've carried for years. Way beyond my stoma and the last six months.

These days, if I introduce someone to my stoma, and they're freaked by it, then screw them (or maybe educate them). This is my body, my closest friend. I'm not angry with it; I am its friend. I'm not against it, I'm working with it; I gave up feeling betrayed by it, I protect it, cherish it. It is my friend, my partner in life.

So I guess I'm saying, not so different than other responses, the attitude starts with it.

Maried

Always use M9 in your bag .. it really kills the smell. You may get shit on your pants.. but figure out why it happened and/or get advice on this site.. I have lived an almost normal life with mine.. 30 years plus. Get out and do all the stuff you need and want to do now.. life is an adventure. And most problems with your stoma are correctable.

HardTimes

Thanks for your message, that's very helpful! I'll look into that book...

Karlosp

Personally speaking.

Not had a single problem.

Women don't care I have a urostomy pouch.

Not one single one has been put off.

I was upfront about it straight away.

I am now in the best relationship I have ever been in with an amazing woman 10 years my junior and is the first person I have truly wanted to marry in my lifetime of 50 years.

HardTimes

That's very reassuring! Thanks for the comment.

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