Struggling with Acceptance: Is Love Possible with an Ostomy?

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nini
Jun 14, 2011 8:20 pm

Hi everyone,

I'm Niamh... I've been a member for over a year but have been a bit quiet. Just felt I needed to post this... I'm feeling really down at the minute.

I've had an ostomy since 2009 after 2 years of hell with UC. I had a boyfriend all through my illness but he couldn't accept the bag after the op and the relationship broke down 9 months later.

I've only recently felt like getting out there and meeting somebody. I'm a really loving and affectionate person and miss having somebody to share my life with. I met a really nice guy a couple of months ago and we started to date. It was playing on my mind about telling him about the bag so last week when we were chatting... I told him.

He seemed to take it really well.... just saying nobody is perfect. The following week he was hardly in contact with me so I knew something was up. Eventually last night I got talking to him and it turns out that he doesn't know if he can get his head around the bag. I've explained to him that it was a life and death situation and that I should be able to get the reversal done. He was very apologetic about it but doesn't make it any easier to accept.

I really think I'm destined to be alone forever.... I keep thinking back when I was first told I had to have the bag and the horror that went through my head. I don't think any man will ever accept this.

What's the point in even trying anymore to find somebody???

shakyjakie
Jun 14, 2011 11:14 pm

Oh Nimah, my heart goes out to you. First of all, someone who can't accept you for who you are honestly isn't worthy of you. I know it's not easy, but I'm sure everyone who has what you've got has dealt with the same emotions and has gotten over it. Don't get me wrong, we all have days when we are depressed, but just keep telling yourself that there's always someone worse off than yourself. And trust me, you're stronger than you think. I'm a great believer that there's someone out there for everyone, and after a few attempts, I've found mine (mind you, it only took me 30 years, ha ha). Anyway, what's the rush? Just enjoy their company and make friends first. Then, when you're not expecting it, someone will be there for you. Lots of love and be strong. Take care. xxxxx Jackie

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shakyjakie
Jun 14, 2011 11:20 pm

We all have days when we are depressed, but just say to yourself, there's always someone worse off than yourself. Anyway, what's the rush? Make friends first and when you're not expecting it, you'll find someone who likes your bag or no bag. Be strong and start living your life. If anything, my ostomy has given me loads of confidence as anyone who has gone through that can face up to anything. Be strong and take care. Love, ShakyJakeExxxx

Primeboy
Jun 14, 2011 11:32 pm
If you believe what you just said, you will create a self-fulfilling prophecy. Here's another option: believe that the right man will accept your situation. A negative attitude will telegraph an unfortunate message to the world that you're "damaged goods." How you feel about yourself affects how others will feel toward you. Time for some self-esteem. Go for it.
Froh
Jun 14, 2011 11:47 pm

You're feelings are entirely justified and will come and go. If it gets too hard, please seek help. I have been treated for depression and it has helped me enormously. The fact is life is full of creepy people but also wonderful, supportive and joyous ones and it is to those whom you must turn. Create a network of love.

As to finding a partner, that will take time. But it helps if you can look in the mirror and deal with what you see yourself, and that takes time too. The time will come. Just remember we have all made a life and death decision and when I see that damn thing (which I still hate, lol) and the scar, I think: Man! You are a survivor! And others feel that way about me too.

Take care.

 
Words of Encouragement from Ostomy Advocates I Hollister
mild_mannered_super_hero
Jun 15, 2011 12:15 am
What if the man had a bag too?............
Good luck
Past Member
Jun 15, 2011 12:36 am

MMSH has the point. You came in here for support, so try and get it.

There will be someone in here for you. Just keep making contact and stick with it.

For example, you said you got your bag in '09 and this is the first time I have seen you in the

forum. Don't give up. I am a guy and I realize that this is a girl thing but

Good luck and happy hunting!

Snowwhite
Jun 15, 2011 2:04 am

Oh for God's sake......we all poop. Some of us do it a little differently. If you are scared of the bag, then whoever you meet will be scared too. You were very lucky your boyfriend isn't in the picture......would you want to have to make sure he is okay every time there is a leak, pain, hospital visit? He should be doing that for you!!! I do not understand one thing. If you have an ostomy and tell a potential partner about it and then add that a reversal is in the talks, does it make it seem not so real and not so scary to you? Does it make us with permanent ostomies less than those who could not get reversed? As a beautiful woman, (yes I am chatting to you!) smile, talk and do things you did before getting the ostomy.....THAT IS THE REAL YOU!!!!! That is the person that should get dolled up and flirt with the next man that winks at you. That is the person who secretly craves the acceptance of her body. And that is also the woman I am. I cry, I laugh, and I am terrified to tell a man. But when you find the one that shrugs his shoulders and says "Do you like to rollerblade on our next date?", the sky will shine more brightly and you will laugh to imagine that you could have been stuck with someone who did not have you or your relationship in the right priority.

Sorry for the harsh, also nasty remarks. I hope you read this over and over till the bulb lights up and you get it. You get that you are no different and the man that falls in love with you adores and loves the bag because it made you a better life. You would never have met him if you didn't have a bag. So be proud of the bag's ability to help you find a great man!

Little tough ostomy love.

Past Member
Jun 15, 2011 2:28 am

Hi Nini........I can feel the sadness, heartbreak, and fear in your words, and it breaks my heart. It can feel like the end of the world. Hope it helps to know that you're not alone. My marriage ended as a result of my illness and subsequent ostomy surgery, so I can relate. May it help to know that this site is full of men and women who have survived the loss of their relationship or are in the midst of living with rejection. If you read profiles, you'll find those who have never had a relationship, be it due to illness or maybe just paralyzed by the fear of rejection. Sad to imagine never allowing yourself the opportunity to be loved in an effort to avoid possible heartache. Ostomy or not, love is always a chance. Much better to be rejected than to live pretending to be anything other than who you are. Would you turn your back on anyone you really loved? If your answer is no, then you've just answered the relationship question, sweet girl. Anyone unable to accept you with "accessories" didn't love you in the first place.

The world is full of shallow people. Try looking at our situation in another way. What about appreciating the fact that our "Bag" is our "JERK" detector!!! Wow, consider all the pain it probably saved us in the long run, huh? When I see my ex, I can't help but think to myself................"Thaaaaaank you", I've already had enough "Shit" in my life, GOOD RIDDANCE!! (We can also count on KARMA...LOL)

MMSH also has a wonderful suggestion...we ostomates should stick together!! As a matter of fact...MMSH and I have been blessed to find each other. It's true, they do save the best for last!!! I plan to be with this man for the rest of my life. We've only been together since May, and I've never been happier. SO DON'T give up or let it get you down. Your life of love isn't over. I'm telling you......IT CAN BE OUTSTANDING!!

Your friend, BEG

bes0642
Jun 15, 2011 4:43 am
Browneyedgirl hit the nail on the head. Our bag is a Jerk Detector. If any guy treats you like crap over the bag, tell them "TO KISS YOUR STOMA". Enough said.    After everything you've been through to survive, you don't need dudes like this in your life. They don't deserve you.
PJT
Jun 15, 2011 2:14 pm

Hello,

Sorry to hear you're down in the dumps. I have to agree with everyone's excellent advice on this topic and I would also like to add that I was once in your shoes. Young and single with an ostomy and a lot of questions racing through my mind. Am I ever going to have sex again? (Yes). What are girls going to think? (Usually not a big deal). How am I going to tell them? (Wait to get to know them better).

You're just going to have to trust me on this one but to the right person it really doesn't matter. It's totally irrelevant. You're new to this but in time your ostomy will become nothing more than an inconvenience. You are an attractive woman. Project a positive attitude and a sense of humor and you'll be fine.

Paul

P.S. How are things in Dublin? The attached picture is me with my grandmother taken on my last visit there in 1957! I really need to get around more often (LOL).

Login to see image

Primeboy
Jun 15, 2011 8:52 pm
There's more wisdom and sanity in these 7 words than in all the philosophy and psychology books ever written. Nice work, Snow!
nini
Jun 15, 2011 8:55 pm

Thanks everyone for your replies. I was having a bit of a meltdown yesterday...it's only the 2nd one since getting my MLA (my nickname for it...means Bag in Gaelige!) so not doing too bad! I've managed to curtail the blubbering today so reckon that's a good sign!

I know my post probably gives the impression that I'm a negative, glass half full kinda person but I'm very much a positive person...was just having a bad day! That said, I'm still disheartened when it comes to thinking about finding that special somebody.

You're right shakyjakie... he's not worth it and it's better to find out that he's shallow and immature now rather than later on down the road.

mild_mannered_super_hero..... I would be thrilled. At least they would have had a similar experience and understand what it's like. It doesn't seem to be happening on here for me. Not many members from my part of the world.... but here's hoping

snowwhite....thanks for the kick up the ass! Maybe it didn't sound like it in my post but I totally accept my MLA... it has given me my life back. I have been offered the pouch surgery and I'm still considering whether I want to go for it or if I will just keep the bag permanently.

Thanks Browneyedgirl. Jerk Detector....I like that! So true!

Paul... thank you for the kind words. Dublin is grand.... a bit doom and gloom with all the economic problems but hey I don't let that stuff get me down. Life's too short! I love the photo... do you know what beach it is?

Snowwhite
Jun 15, 2011 10:39 pm

There is a genius among us!!!! And to think most people think their brains are in the arse!!

Snowwhite
Jun 15, 2011 10:46 pm

Please do not thank me for the kick in the ass. I know you were hurting but I hope you are like me....when I moan (and I do), my mom or friends will stop me right on the spot and never allow me to think I am not a whole, beautiful, smart woman. You are too. And like you, I cried today because I got Bell's Palsy last week (a condition that affects your cranial nerve and half my face will NOT move...free botox!!!). I just laughed until I cried. What else am I getting myself into!!! So cry and laugh so hard until you pee your pants because it is a lot funner than crying about spilt poop!! Just show the world you are ready to give and receive love and it will happen.

Past Member
Jun 16, 2011 3:10 am

Good luck with finding someone halfway decent.

As for finding someone else with an ostomy, even if you do, it doesn't mean that they will not break your heart.

Take care.

PJT
Jun 16, 2011 7:42 pm
Hi Nini,

I asked my mom where that picture may have been taken. She said the Bray was my grandmother's favorite beach.

Paul
Immarsh
Jun 17, 2011 10:29 am
Hi Nini,

I was so pleased to read all the responses to your post. Although I've only been on this site for about a year, I've had my ostomy for more than 45. I'm 62 now, so you do the math. I dated when I was a teen... with my ostomy, and told some, and didn't tell others. I eventually married a man who also had an ostomy, but that didn't bring us any closer. We did stay married for 24 1/2 years, but after my divorce, I was out in the single world again. Honestly, I have more issues about my weight, and other body scars and flaws, than I do about my ostomy. I realized at a very young age that if it was an issue for a guy, then he wasn't the one for me. These days, I take it slowly... meet someone, and decide if I want to tell or not. Everyone has a different comfort level, and you'll get a lot of sharing and insight from fellow/sister ostomates. So hang in there and think of your stoma as your "badge of survival". It takes time, but you'll find the right person when the time is right.

Best of luck

Marsha
Immarsh
Jun 17, 2011 10:43 am
Hey Paul,

I love the picture of you in Ireland.....I have pics of me long ago with my grandmother at the beach in Coney Island. Those old B&W all have the nostalgic feel...

Nini....hope to get to visit Ireland sometime soon.... Right now....I'm in "Oz"/ Australia, visiting my son and his family.

Greetings to all...

Marsha
nini
Jun 18, 2011 12:11 am

Thanks Marsha

Lucky you over in Oz.... better weather I'd say than here in rainy aul Ireland!

godswoman
Jun 18, 2011 1:44 am

It took longer than I expected to adjust to my ileo in 2008. Mine is non-reversible, as a result of severe Crohn's. My hubby of 25 years bailed for a healthier, younger model. I'm not trying to compare notes, just empathize. I'm convinced that there are at least 2 good men out there who can appreciate us for who we are and not let a stupid bag get in the way! Don't give up, but it might take a while to find just the right one, who deserves a terrific gal like you.

nini
Jun 19, 2011 10:14 pm

Hi Godswoman

So sorry to hear that.... what an ass! I hope you're doing good now.

I know you're right... it's just a matter of keeping the chin up and remaining positive.

Thanks for the kind words,

Niamh x

austen
Jun 21, 2011 10:35 pm

Hi Niamh

Sorry to hear about your story, there are asses in all walks of life. I have two small stories for you:
1. My cousin lives in Dublin and since my operation, she has told me that her boyfriend has an ileostomy. It took him about 4 weeks to tell her because the poor man didn't know how she would take it. The two of them are still together and very happy.
2. My own wife, what a woman! She has never made an issue about my MALA (brilliant, I'm robbing that one) and sometimes I think she enjoys it. Maybe for the fact that I can't fart anymore. Ha Ha.

Anyway, my point being that there are so many nice people out there that understand it is a life or death situation, and these people barely notice your MALA. You will meet someone someday.

Keep the faith, Cailin (don't know how you got the fada).

By the way, if you want me to come to Dublin and sort these boys out, just ask.

nini
Jun 26, 2011 10:55 pm

Ah... thanks Austen. Two positive stories... definitely helps to hear them!

You're welcome to use MLA anytime.

Take care, Niamh.

P.S.... Ctrl + Alt + A =

baggette
Jun 30, 2011 6:22 pm

An 'ostomy sister' I know met a young woman who was single when she had her ileo (permanent and irreversible, by the way) and she said the bag actually did her a favor while she was dating... as she said it instantly "separated the men from the boys" without her making a lengthy investment in time and energy to find out which side of that fence they fell on. She's happily married now.

Ian
Jul 12, 2011 3:02 am

I had an Irish workmate once. He told me the Pogue Mahoney was an Irish greeting. It was an eventful St. Paddy's Day for sure. I don't know much about dating and such, but I know how to duck. And it sounds like you do too. The round will only last 3 minutes.

Past Member
Aug 07, 2011 11:04 pm
Hi Niamh,
I'm afraid I don't know much about dating these days too, but from reading these posts of encouragement, you should feel good to see so many people behind you. I signed on to this site using my phone and only really had limited access until this weekend, but now have my laptop back in action. It's a great way to share your worries and anxieties as well as have a laugh, so make sure to use this and never feel alone! I've had wonderful family support through my recent illness, but still need a place to discuss with like-minded folk here.

But as the good folk keep saying here.......Keep the Faith! Your mate can't be far away!

Take good care, Colm
LMS67
Sep 07, 2011 12:39 am

We all have up days and down days, just so the ups outnumber the bad. I love all the great comments. I think the jerk detector comment is right on the money. It will weed out the weak-minded who can't accept it. Then again, what if you were in a terrible accident and your face was scarred up or you lost a limb? Then these same idiots would run then too. I try to use humor to keep my spirits up. I have a song that I sing when I need a pick up: "He thinks my stoma's sexy, it really turns him on. You know he won't forget me, I got my little bag on" (Sing to the tune of "He Thinks My Tractor's Sexy"). When an invitation says BYOB, I think, of course, I will bring my own bag. Little things like this just keep me laughing. My favorite is when my family members, who also have stomach issues, say they have to hurry to the potty. I just smile and say, "Huh, I'm pooping right now" - LOL. Laugh and the world laughs with you! Take care, Lisa.

Lalu
Sep 19, 2011 8:01 am
Browneyedgirl, coming up with calling the bag a "jerk detector" has to be one of the most clever and useful things I've heard. Even with my holier-than-holy memory, I can probably remember that most useful two-word phrase.

Nini, Nini, Nini - It's rare that I want to hug and slap someone at the same time. You're only destined to be alone if that's the destiny you choose. If it's true that no man will ever accept your situation, you are most certainly hanging out in the wrong places.

My apologies in advance. I often talk about the husband I lost last year who was everything to me. I'm sorry if anyone is tired of hearing about "St. Michael", as two of my friends, also named Michael, used to call him. I've had Crohn's disease since the mid-1970s and met my husband in 1999. My ostomy joined the family in 2009. Before even the thought of an ostomy came into the picture, Mike once told me that his mother had had some kind of surgery in her abdominal area and every day his father would spend time with her, doing something at the surgery site. With what I know now, he may have been changing bandages. Mike never knew what his father did, but specifically told me he didn't know how his father was able to deal with it and he didn't think he could do something like that.

My stoma, Walter the Wenis, was a surprise addition to the family after two failed resections. A friend of Mike's told me that at one point he said he knew I was broken and just wanted to get me home and take care of me. I was horrified over the whole thing and in denial. He changed the bandages on my open wound and did 100% of the handling of Walter - changing the appliance, cleaning me up, changing the bedding, doing laundry, etc. This was the man who previously had said he didn't think he could do what his father did, which couldn't have been half as gross as dealing with a stoma. Mike died of cardiac arrest less than a year after my surgery. I don't put his death on my own shoulders, but I'd be a fool to think his death was totally unrelated to my - "our" - situation. He was under a lot of stress before Walter came along - our (lack of) money situation, work (actually lack of work), my health before the surgery - now I was no longer working and while we were, for the short time we were together, the most important person in each other's life, after my surgery I became the complete center of his world. My heart breaks each time I read about the healthier half of a couple leaving shortly after his or her (usually his) partner and by extension, the whole family, became stomatized. While I always appreciated all that Mike did and made it a point to regularly let him know how I felt, I really had no clue that he was part of such a minority. I previously thought what he did was closer to a "normal" response and the morons who walked were few and far between. I couldn't possibly imagine my father or one of my brothers walking out of their marriage because of something like this. Mike's concern was with my health and my life, not a bag of doody. As a matter of fact, before the surgery he sometimes would complain about a situation and fantasize about having a bag of poo to leave on a person's porch, so I was actually fulfilling his fantasies, although he never took advantage of the opportunity my surgery had given him.

There's certainly a difference between being in a fairly new relationship and learning the new partner's a bag person and being married or in a relationship when the partner becomes stomatized. I may not agree with the thinking, but can kind of understand someone not wanting to start a new relationship when there's already something perceived as a negative. I guess each person has some kind of unspoken limits - what if the person lost a hand in a freak accident? Has scars from a fire? Lost his or her nose from sticking it into too many people's business? OK, maybe not that last one. What about someone who's unemployed? Not as educated as one would like? What about if that person never learned which fork to use first?

What ever happened to "in sickness and in health"? Do people say "I do" without thinking about what they're saying? Again, my apologies. I know I get long-winded. If I ever move back to NJ, Primeboy, do you give seminars in how to say so much in so few words, as opposed to my style of saying very little while taking up lots of space?

Nini, there are too many people saying the same thing in different ways for you to not hear it. If a man's going to walk, take it as a gift that you found out early on and never forget that he's missing out on a good thing, while you're already dealing with a problem ass - you don't need two.
Past Member
Sep 19, 2011 1:01 pm

.....Lalu, "SALUTE", "GO" girl !!!!!!

You make me so-o-o proud, BEG