Intimacy Issues After Ostomy Surgery - Am I Alone?

There is an old saying "no risk....no gain." I think it's very true (like most old sayings are).
You must "risk" in life... My personal favorite is... "who dares......wins."
A broken heart will mend with time... A broken soul from never risking love will not.

Hi to all, I'm very new to this site so please forgive me if I sound silly. I've had my ileostomy for 7 years next month and since that time I haven't had sex. I have had a couple of partners but have never been able to allow myself to become intimate as much as I really wanted to be. I have also lost other body parts over the years including a hysterectomy when I was 22. Then I lost my bowel and 3 years ago I lost both breasts, so I really feel like damaged goods.... and I don't feel like a woman anymore? I have gotten to the point where I isolate myself most of the time and suffer from depression on and off. I get so lonely sometimes and I just want to curl up in a ball and die. I just wish I could get my head around all of this and meet a beautiful man who would love me for what's inside and not a body that has been totally damaged. I believe there are a lot of selfish and self-absorbed people in the world and they need to open their eyes to what really goes on in the world! Hope this helps. Sad, lonely, and always confused! Take care to all.

I believe there are a lot of selfish and self-absorbed people in the world and they need to open their eyes to what really goes on in the world!!!!"

I agree, Bevck! However, I don't think anyone can truly understand something like this unless they have been there personally. My heart goes out to you. I can imagine how alone you must feel at times, but take heart, there is a nice guy out there for you who will understand you and love you for who you are.

The odd part of this is that I find myself covering up my appliance with one hand when I am going to bed. Like I can really hide it!

As an update to the original thread, I did have a talk with my wife. She did agree to see a counselor, but before I asked her to, I went by myself. She went for one visit and that's all. I guess I'm at a point where I need to make some choices.

Your words are all so very true.    Reading this meant a lot.    I do okay alone but it's just not the way I want to live the rest of my life... so it's time I take a chance again.

Hi Bevck! I'm so glad to meet you and happy you are in our group here! I feel terrible for what you have been through, dear!! Elzie is right, there is a man out there, MANY in fact, who will LOVE you and will want to be with you........those are the men who will be worthy of your attention and your company and friendship. I understand the occasional depression, as most of us do, each for our own reasons. ((Hug)) I hope you are happy and well! We're here for you! Look forward to more of your postings, let us know how you're doing!

Hi, I'm new to this but need to vent a little. I've been an ostomate for nearly 10 years now and have only had 1 sexual partner, who completely destroyed me in every way possible. I went out with this guy for about 8 weeks and had sex maybe 5 times? He always told me it didn't bother him that I had a bag hanging off my gut (his words)! Anyway, it got to the point that I really didn't believe him and felt very uneasy and with very good reason, so I told him that I didn't want to continue the relationship and walked away. He then harassed me, called me horrible names, etc!! Then about 2 weeks later, I went to our local pub where I would go and just talk to people. When I walked inside, 2 males walked up to me and said, "You're the woman with the shit bag, aren't you?" Well, I was completely shocked by what they said to me and walked off and went outside to have a smoke and was very upset. Then I looked over at a wall and saw a picture of me with a bag pinned to it saying, "This bitch has a bag!" This scumbag had taken a picture out of my purse and he took it down to our local hotel and put it on the wall with a bag pinned to it for everyone to see. Since that day, which was over 2 years ago, I haven't stepped near a male and don't think I ever will as he destroyed my heart and soul. I'm only 42 years old and think I'm attractive to men, but I have no trust when it comes to anything, but I miss just having a man's arms around me, touching, kissing, and not just the sex side of it all. It's love and acceptance that I need, but I just can't do it. I have men after me a lot, but all I do is tell them where to stick it as I'm still so angry!! How do I change the way I feel about all of this shit in my head? Please give me some advice as I want love and peace in my life again.
Sorry for rambling on, I just needed to get this off my chest.
Kind regards,

Damagedgoods.....

I'm just in a state of shock at reading your post, can't believe what that cruel arsehole mongrel bastard did to you (and that in no way describes what I actually want to call the prick). No wonder you feel like damaged goods but believe me that effwit is the damaged one, and will definitely get his coming to him if karma has anything to do with it.

Have no words of wisdom to offer, just sympathy and horror that this has happened to a fellow ostomate. "Venting" is a good way to start and feel free to do so here.

Don't give up hope, there are good blokes out there, few and far between no doubt, but you may meet one when you least expect it (and definitely look for a new local pub mate).

Take care,
Hugs on way

Jo x

I just wanted to say...I agree with Jo...this guy has problems. And as horrible as he tried to make you feel....he must be a very miserable and sad person inside to act that way. You did nothing to deserve that kind of treatment and he is, as Jo put it....an arsehole for acting that way. If you want to know the truth....there were probably a lot of other people there that thought the exact same thing. You are not "less than" because a part of your body failed you......and don't let any man.....or any person make you feel like you are.

Personally, I think he is "less than".....something very mentally defective about anyone that would act in such a way to try to hurt another person. I find that much more disturbing than anything purely physical.

Hold your head high.....you are better than this guy........he showed what he is.

Shelia

Well, let me first say hi... Let me continue now by saying you are not damaged goods. So first and foremost, I want you to change your name as how we feel about ourselves is how people tend to treat us. It's so fucking sad that this idiot extended his shit to others who have no clue about you or your journey. So for now, forget him and let's focus on you and your journey and how you feel about being an ostomate.

You are not damaged goods. I would like to consider you enriched goods, altered goods, new goods, better than before goods. Anyway, you will meet all kinds and it's sad your first, post-op, happened to be with a jerk.

On this site, you will find many with compassion and understanding that does not come in the real world. We are here to help and advise and assist in the journey.

We are so special and have insight into life that took a difficult journey to possess.

So therefore, come on back out. Men aren't all pricks and you need to start again, slowly but surely, and you will find the compassionate one.

And yes, you are attractive and are so much more than a pouch. - Michael

Oh, you poor thing to have had to go through that - he is the one that is 'damaged' - in the head, and you are well out of it, girl .... It may take you some time to adjust, but you are really attractive and there will be someone out there for you who will see you and not your pouch. Horrific ... so glad you have found us. Get yourself back off to the ER and please let us know how you get on ....
Rach xxxxx

Thank you to you all for your replies, it really means a lot knowing that there are other people out there that understand! Can't say much more as I feel very overwhelmed!

Damaged goods....

He needs a real man to teach him how to be a man or at least an adult. I know I don't know you but I have a request, please consider changing your username, you look like a beautiful complete woman. Why don't you get a picture of him and tape a couple of double A batteries to it? What a wonderful replacement!!! Hee! Hee!!!

Eddie

I would add, have it printed on a t-shirt...with this caption:

"I had to dump him, I was 2 inches from being a lesbian."

That ought to do the trick.... Be sure to wear it to the pub!!!

Hi, I haven't been able to step back inside that pub since that day!! I wish I could but just the thought of it makes me sick to my stomach. I know it's been sometime since this happened to me but it still feels like it was yesterday. I know that I need to move on and live my life but there is always that horrible thought in my mind that I'm going to get very hurt again. How do I move on from this mental torment which never goes away? Even to this day if a man even looks sideways at me I run and keep on running! Sorry, I'm rambling on again... I'm just very confused and I hate how I look and even hate looking at my bag as it still makes me very sad! I know he's not worth a piece of shit and hopefully karma will bite him on the arse one day! But I know in my heart that I will grow to be a very lonely old lady as I know no man will ever accept me for me! I would like to say thanks to all for your kind thoughts....

Regards,

Damagedgoods.....

(((((((((((((((((((((((((((((((((( HUGS TO U ALL)))))))))))))))))))))))))))))))))))

Hey Babe - please at least tell us your first name so we do not have to call you by your site name! Why are you still here - get off to the ER and get yourself treated!!! Rach xxxxx

Hi Rach, how are you? I went to see my doctor today and it was a complete waste of time! I explained everything to him and he said, "Beverley, I'm sorry you're ill, but you will have to see your surgeon as soon as you can." All he did was prescribe me Panadeine Forte, ordered a blood test to check my LFTs, and told me to go home and drink plenty of fluids. I went in to see the nurse to have my blood taken and she had four tries and couldn't get a drop out of me. She said I was fully dehydrated and gave me a glass of water. Go figure, hey? My doctor told me it's very normal to have green watery output, chronic nausea, and not being able to eat properly. He said the bile is going straight into the bowel. Basically, he wasn't interested in anything I had to say, so I walked out and told him I will find another GP. All he was interested in was me signing his paperwork so he could be paid for the consultation. I asked him if I should go to the ER and he said it would be a waste of time. So, I'm back at square one again. I have an appointment on Wednesday to see my surgeon, so hopefully, I will get somewhere. I will keep you informed about how I go with my surgeon and when I'm going back into the hospital for my biopsies. Thank you again, Rach, for your kindness. It's nice to know others care...
P.S. My name is Beverley-Ann!!
Regards,

Beverley xxxxx

I feel so emotional reading your story. There was me feeling sorry for myself because the last date I went on, my stoma made the most horrendous noises, which has never happened before. I was mortified... Needless to say, I got the usual (I don't think this is working, but it's got nothing to do with your condition). Yeah, right, whatever...

Yes, it's hard dating. I think a lot of the time, is it worth it? Do I tell him before I go out with him? When I get to know him, I don't know. I do find it scary. But what happened to you was a one-off. It will never happen again. He was an absolute scumbag. Please don't let him ruin your life. You are worth much more than that.

We may have a bag, but we deserve to be happy. Is it too much to ask?

Hi Beverley! So dehydrated that all your veins have collapsed and they cannot get a drop of blood, and he just sent you away - disgusting..... With the water thing, apparently having fresh lemon juice or lime or orange in the water (even a slice of ....) helps to let your body absorb more fluid rather than peeing it all out for some reason..... You must seriously feel like crap, has your skin gone wrinkly and if you pinch it, does it stay up in a peak for a while? Not sure what to suggest, but if you feel worse off to the ER with you so they can get some IV fluids in, but probably won't be able to canulate you either if all your veins have gone flat.....? Damn... running out of ideas, try the lemon slices and drink, drink, drink! Rach xxxx

Just had another thought - can you get Dioralyte in your pharmacies over there? Keeps the body's sugars and salts up when you have diarrhea, etc. ... that may help too?
Rach xx

Hi Rach, how are you? Good, I hope. Yes, I'm definitely dehydrated as I went to have my bloods done again this morning and again they had no luck? The thing is, I'm drinking loads of water and energy drinks, but as soon as I put something into my stomach, it just pours out of me like a tap. And yes, I feel like crap to put it politely as I've got a chronic constant headache, nausea, feel like I have gastro all the time, and just don't have an ounce of energy! This is really getting me down in the dumps as all I'm doing is cracking up and crying all the time.... Anyway, I'm seeing my surgeon in 2 days and hopefully he can sort this out for me. I'm also very scared about going back in and having these biopsies? The outcome is what I'm very worried about, and at the moment my mum and dad are overseas in the U.K. for 7 weeks and have nobody to turn to when I need a shoulder. They have only been gone for 1 week and I miss them so much!
Sorry, I'm carrying on again. I'm just having a bad morning! Thank you again for your replies to me and thank you for even caring for a total stranger. You're a wonderful lady and never change who you are. I hope you have a wonderful day......

Regards

Beverley xxxx

Hi Beverley - try the thing with lemon slices or a squeeze of juice in the water - it is supposed to help your body absorb it better .... and see if you can get over the counter Diaoralyte, sure both would help .....
My turn tomorrow to go into hospital. But hope to have internet access so can keep in touch and get some support of my own from everyone! I am okay in there when feeling bad but when I start to improve I start climbing the walls to try and get out! But Mother says I've to stay in as long as I possibly can! I keep telling her they may throw me out in 2 days - we will see? Hope you feeling a little better today you poor love .....?
Rach xxx

Rach is right... What is your name? For now, I'm calling you D...

Just re-read all the posts. Hi Beverly.

Some FYI, I am a man who has a pouch and prefers women with a pouch. Yes, I want to meet a woman with a pouch. I prefer that. I see it for all the good it has done to me and all the good it can and has done for the woman.

You are so much more than a pouch. I try and equate it with a pimple on the arse...

We all get them on occasion, but we don't let it ruin or destroy our male or female qualities. While a pimple might not be the most attractive thing on the planet, and we are aware of it at all times, we seem to overcome it and continue on being male and female.

For the male who has treated you rather quite poorly, it's sad as he is so inept at being a kind and caring soul that his journey can only be shallow.

You on the other hand are the one with the gift. YOU know the depths of pain and hell, and it will only help with the pleasure life and intimacy can offer with the right, good person.

I can't wait to be intimate with a pouch person. Yes, I will say it again, I can't wait to be with a pouch person. WE are SPECIAL. WE are not damaged. Just a bit different. Different is sexy and unique and life-giving. We are better than just normal and have an insight only this journey can offer.

I ask again to change your name as I would like to address you as anything else, but Damaged goods has got to go.

You are never alone on here. We are a good bunch of kind and caring souls who, in my opinion, happen to be better than the rest of the planet not like us. LOL

Michael

Thank you for posting that, Michael. Like Beverley, I have felt like damaged goods since my first colostomy in 2003. Lately, I have felt very hopeless about ever finding someone kind and caring and sensible. Your optimism is like a ray of sunshine in a heavy dark cloud.

Beverley - so we're "damaged" - everyone is damaged in some way - it's just that our damage is so obviously in sight and smell (at times). Frankly, my husband's sh#t smelled a LOT worse than anything coming out of my pouch. He dropped me like a hot potato after 22 years of marriage to take up with his former girlfriend - in exchange for immediate sex with a "pouchless" mate, he had to become a Mormon (and move to Hillbilly Swampsville, Missouri - Swiffer told me that!)

Speaking of which - where is Swiffer? He hasn't posted in a while. Maybe he has found his new love and they have motorcycled into the sunset.

Hello Michael and all, thank you!! is all I can say at the moment......

Beverley xxxxxxxx

Hi there, I just recently joined the club and saw that you posted this last year. Can you tell me what's happened since then with your wife? I ask because I'm in a similar situation and am frustrated.

I am only new to this site as well, and I happened by your post. To be totally honest, it left the worst taste in my mouth. For the life of me, I just cannot get my head around how morally bankrupt and vicious some people can be.
But after sitting back and running this through my head until I could make some sense of it, I realized that this person who did this to you is not worth the anguish he so obviously caused you. Don't let him win because this creep seems like one of those small-minded people who takes great pleasure in causing others pain. And the beauty of it all is that his day will surely come.

Keep your head up, dude.

I just went back and re-read this posting from the beginning. My God, how many of us have suffered this bad stuff (and here I thought I was the only one!) This post resonates with me the most - don't know who posted it as "Guest" - but having slept alone for the past 8 years and missing the same stuff - thank you for saying this.

I can even remember the last day I had sex (with my SOB ex-husband) in September 2002 - before it got too painful because of the giant tumor in my rectosigmoid colon pressing on the nerves in my back. Then surgery in October, after which my ex never approached me again for sex. I did get the snuggling part, at least until I got my first colostomy in May 2003. By that time he was seeing another (whole, unscarred) woman.

In July that year he stopped sleeping in the same room with me - never did again. My colostomy "made too much noise" and interrupted his sleep.

I didn't find out he was "turning his crank" with someone else until my divorce papers arrived in October!

Haven't even tried to be intimate since then. I do snuggle with my doggie (see profile). I highly recommend a cuddly pet.

I hope too someday to find either A) another ostomate; or B) an incredibly sensitive soul who won't be bothered by: my irrigating equipment and occasional sounds and smells emanating from my pouch.

By the way: my son is 21 and he saw Jessica Grossman (ostomy uncovered) on the front of Phoenix magazine. He thinks she is a totally hot babe, pouch and all!

Very good point, and I would add.... Dogs are easier to housebreak, less likely to bring home old cars or expensive shotguns, never leave the toilet seat up, less likely to pee on the bathroom rug (when half asleep in the middle of the night), won't eat all the cookies (unless you leave them out), and... if they get on your nerves.... simply put them out in the backyard.....

Ok, sorry... I couldn't resist..!!

Oh my gosh you guys, I am so sorry to hear some of your stories.

I don't care what anyone tells me. The fact is that if I met Tyler nine months ago instead of nine years ago, I still would be just as crazy in love with him as I am now. His bag is such a stupid little trivial thing, and I *really* mean that. We do everything together - bag and all! Everything from serious cuddle sessions, to intense sexual intimacy. I never smell a damn thing, or see anything objectionable when we're naked together. And, even if I *did* smell something foul, I'd just tell him about it so he could check for leaks, fix the problem, then we'd get right back to business.

I don't understand any of this - I really don't understand what the big deal is for some of these so-called partners some of you talk about. For those of you who had a spouse walk out on you during your time of need - talk about shitty luck to have poor health and then get to contend with a spouse who is so shallow and useless. As for the people who don't experience intimacy with their partners, I can only speculate as to what the problem may be. One thing I will say is that it's entirely possible that your partner is simply being over cautious and afraid that any kind of sex might cause some harm to you. I would strongly urge you to have a serious sit-down talk with your loved one and lay it all out on the table. Tell them what you need, what you are not receiving, and see if you can't reach some compromise.

Tiggy

Not sure. Haven't had the right stuff ever since.