Seeking Advice: Partner's Ostomy affecting Intimacy

I can recommend an excellent book that may be helpful in addressing these issues: It's in the Bag and Under the Covers: Stories of Dating, Intimacy, Sex, and Caregiving About People with Ostomies, by Brenda Elsagher (Andover, MN: Expert Publishing, 2011). The author has an ostomy herself and the book is composed mostly of stories about people and couples in similar situations. A lot of good advice here! Good luck!

Hello, I have had a colostomy for 4 years. I wished I had it 50 years ago. It will be permanent. I am widowed after 40 years. I am on 4 dating sites, and most don't even know I have a bag. The ones I get serious with, I tell them! I have not been rejected yet! I wear a t-shirt if we get intimate. Your hubby better be glad he has the bag! I am a very sensual guy and could care less about the bag. I am 6'3" and 280 pounds!

Thank you so much to everyone who has replied to my post - I really do appreciate everyone's comments. I would just clarify that I know it's early days yet, and I do understand that my partner feels unable to participate in sex at the moment, it's more the fact that he's told me in no uncertain terms that it will never happen while he has the bag. He's not even willing to entertain the idea.

I'm also aware that if he does get the reversal, that in itself could cause a lot of issues, which may have the same or worse negative effect on body image. However, in his head, all he can focus on is getting it reversed, and nothing I can do or say can get him to see it any differently right now. So, yes, for his sake, I hope he does get the reversal as it's what he wants. From my point of view, as long as he were able to eventually come to terms with it, it would make no difference if he kept the ileostomy permanently .... except maybe if he decided this meant no sex ever again!

NJ Bain - your 2 cents was very frank but certainly not talking out of your arse! You're right that I do need to make it clear to him that I have needs too. I feel totally rejected in respect of all forms of intimacy - even hugging and kissing are off the menu. I miss just getting close and feel forbidden from touching him at all. It's very lonely.

Hillbilly Bee - I can definitely stay loving and compassionate for a long time yet. I think I need to try focusing on the now rather than the future. My best friend tends to be my "counseling" and she did point out that looking on the good things that have happened, like the fact that he's had the operation to remove the cancer and it's been a success, are better than worrying about negatives which may very well resolve themselves in time.

Jenerprise - I so hope you are right that he probably just needs time to get over it all. I think it just came as such a shock to me when he announced his intention not to come anywhere near me until after the reversal that I never stopped to think it might just be his way of asking for some space to get over what he's been through.

NewInMexico - My partner's diagnosis of rectal cancer was approximately 3 months prior to his surgery. He had no symptoms beforehand and only a routine screening picked it up, so yes, massive shock to the system. His late wife died of cancer 18 years ago, so I'm sure he was also thinking of that and the effect his illness would have on his four children. To be honest the last four months have been the worst of my life, worrying what the future would hold, but I seem to react by wanting more closeness in our relationship, while he reacted with distance. You are correct that I am assuming we may never have sex ever again (dramatic!) and I should be viewing it as WHEN, and when he is ready (not if). And thank you for your suggestions regarding sex. I need to get a bit braver myself and go for your last suggestion, if I dare... But nothing ventured nothing gained, so I will try.

Buffi - the reversal and my partner's high hopes for it is actually worrying me more than the bag. There are so many posts about LARS online, but he never goes on the internet or does any research on things the way I do, so he hasn't read about all the possible issues! He won't even read the leaflets the hospital gave him!

No Fritoes? - I totally get where you are coming from. Cancer never really goes away, even when you've been given the all clear. It's one of those diseases where just the word has almost come to mean death sentence, even though it's really not! Do not look on your bag as a smelly unwelcome reminder of impending death, in actual fact it's your very hope for giving you every chance at being at your 14-year-old's high school graduation, and I'm sure it's not smelly to anyone else, that's just your being self-conscious of it. With regard to your husband, I would really urge you to think about trying sex with your husband again, or at least let him know you just need a bit more time/patience to get there. You don't want to lose that intimacy altogether. And from the partner's point of view, I really can understand how lonely it feels. I'll give your suggestion a go and I hope you can give mine a go too!

Immarsh - Thank you for the advice. I will try, but to be honest, at the moment I'm scared to even attempt touching him as I know he doesn't want it. I also know how rejected I can feel when he rejects my advances, so not sure I'm brave enough until he gives the OK (which he hasn't). Holding hands is OK but any more than that and he tenses up. Hopefully things will get better in the next few weeks and we can start taking things slowly, as you say, I'd like him to see me as touchable, let alone me touching him.

Mikegnv - thank you for the book suggestion, I'll certainly look that one up.

Honestabe - I'm assuming from your post that your bowel habits were worse before having the bag? For my partner, he never had any symptoms prior to rectal cancer diagnosis, so the bag has been a sudden unwelcome shock. You sound very confident and I think this is what my partner is lacking at the moment. Hopefully it will come with time.

I think for now I'm going to leave my partner be for a few weeks and see how things go. If he still feels the same this time next month, then I'll try to explain my own needs and see where we go from there. In the meantime, you are all wonderful counselors and I'm sure I'll be chatting to you a lot!

Mertle x

Feeling in despair this morning as I tried to put my arm around his shoulder/upper chest in bed last night (just for a hug) and immediately got the tensed up reaction holding me off. If I can't even do that, how on earth am I ever going to get any more intimate?

I felt so rejected I slept in the spare bedroom as I couldn't bear to be near him and not be allowed to touch him. I think I'm going to go insane if this carries on indefinitely.

As a 26-year-old male, I used to be... let's say active as hell lol

But I used to feel ashamed or nervous and scared. Give him time. Like you said, temporary. He has been through a lot x

Imagine if it was you....The man has had cancer and his life has changed. Stop thinking about yourself. What he has been through is something all of us hate.

Hello, never done this, but to the gentleman speaking about the bag, he's right on about it once you accept it, (you gotta get over it). I have had my belly bag going on 3 years. At first, going home from the hospital, I felt like I belonged in a freak show at the circus. But I got over it. Tried for a reversal, got 42 new staples, but still had the bag. Sometimes you feel like Job but hearing about others' experiences I guess I'm okay. Just gotta put it in perspective. A recent bout with bladder cancer did that. So I guess you shouldn't complain too much, things could get worse, so enjoy.

Hi Danieldore,
I will give him time. I think I've realized that's really all I can do. Ashamed, nervous, and scared is a horrible way to feel, and I do need to try harder to understand how he feels and realize that this is about him and not about me.

x

Message received and understood. Thanks for telling it how it is. Although it's not nice to hear, it did need to be said and I'm genuinely grateful for the reality check.

Mertle

X

You are so right! No more complaining...

Mertle

X

I truly admire Honest Abe's attitude, maybe even envy him a little, or a lot.

I went into the hospital with a stomachache, I came out with a bag. It was a nightmare, I had no idea what a bag was, only heard of it once in a Tom Cruise movie about a veteran.

It was a total nightmare for two years. My eldest brother and nieces nursed me back to life; that took a year, I was traumatized. I know I developed PTSD over this, that's how bad it affected me. I had a full life.

I completely threw myself into my professional life and a forced transition into a different field. In five years, I have come a long way, but for two years I was a zombie walking around, literally, working, but just in a state of shock. For all these years, I pretended I did not have this condition. I am very grateful my health is stable, but I have not had sex, or had any relationship with anyone with my condition until very recently that decided it was time to reintegrate myself into society by accepting this condition and learning to deal with it emotionally. I have not done that. I have not missed sex, I am not bad looking, average, and I have avoided advances, few of them, always walked away; nothing that could remind me in the real world that I have this bag. I don't think I could deal with rejection. But, it can be learned, we adapt, it just takes some people much longer than others.

Your husband is living inside what I lived, a nightmare, perhaps, I don't know, but for two years, I was out of it, in a daze. To become whole is to accept this condition, face it, deal with it, get ready for rejection; this condition is more mental and emotional and spiritual than it is physical. I wish I could advise you, I ran from it until recently, denied it. That was my way to deal with it, have 'normal' friends who do not know what I have. A perfect way to become alienated from the world and first, oneself. Someone told me this recently; it's true. So, I realized, I must change, I want a full life, but it has taken me this long to feel whole again to a degree.

I do feel your pain, reading your piece brought back the memories of those first few years. It can be done, but it is the most difficult battle you have encountered, it has been for me, mentally, emotionally. Only now I am ready to be brave and face rejection; perhaps. This is hard and takes time and enormous devotion to change. Find him a therapist he can talk to, I did do that, and it helped me enormously. I feel good now, I'm battle-tested, have learned tons, and gained some wisdom, but it has been the most difficult challenge I have ever faced in my life. I truly hope you are not facing this alone.

I am touchy-feely, nurturing, loved hugs, cuddling, kissing, being close, laughing in bed wrapped in the arms of my loved one and vice-versa; all gone for five years, I repressed it and focused on things I could control.

I have found that only poems help me explain this situation. I hope you reach out in messages, there are a lot of decent people here that would love to correspond with you and be there for you now and confront this with you. We must do this, so please reach out, send messages and seek support, some kindred souls will respond with love. Wish you the best, and I will keep you in my thoughts wishing you enough strength to go through this. Reaching the level of confidence to the level where Honest Abe is, takes some longer than others, but your husband can get there.

This site was a godsend for me. It was the only place I found that gave me hope in those dark days, all the information I read made my condition so much better, took time, but the information here was invaluable to me. I came and read daily, and read, and read, and read some more, I am still reading. Only recently I have posted a more complete profile, was not ready before. It took a year to even entertain the idea that I could make a comeback, and then, I got ready for battle, I decided to just throw myself into goals I could control. It is a hard condition that many of us ran away from, try to ignore, and some, just have an easy time with it. Also, get him to support groups right away, it helps to see other people dealing with this, with the same issues, and to see some happy, it helps, gives hope. Enough to get your strength back again, to find that light at the end of the tunnel. You also need support, you are also having this condition, whether you want it or not. Wish you the best again. I wish I could be of some help; it is hard, but can be done.

Mertle Dove, this is a subject that is so personal I rarely go there but I'll take a shot, you are on the other side of the spectrum. Once the existence of the new normal takes place all bets change.
Honestable, this is in your direction, when I changed from normal to new normal. Instead of a sexual it became nonexistence. As you're a sexual being, I no longer understand that part of me, I shut down completely when it began.

I had a colostomy and urostomy in September last year. The doctors said it would take 6 months to recover, but I was back full time in 4 months. At 79, I still work every day and eat anything I want to. I very rarely have any problems with the bags. I feel very blessed! My problem is that my wife thinks I'm a freak from Mars or something. She wants absolutely no touching! She has never been too affectionate, but we had a fairly decent sex life until now. There has been no response to my efforts, and she says "I'm too old". She's in good health, so age should not be an issue except in her mind. It makes for a very lonesome life and a constant temptation to look elsewhere. Many (many) years ago before we got married, I had a very good friend who, although married, was my sex partner. I often think about having another similar relationship, but I have absolutely found no way to meet anyone. It sure can get old living this way!!

Thank you for your replies CuriousSoulAstray, Angelicamarie, and flynfshr.

I've kind of come to the conclusion that there's really nothing I can do to change the situation at the moment and that I should focus more on trying to understand how my partner feels and just allow him to work through his demons in his own space and time.

I think I do now have a much better understanding of why he feels so unsexy with an ileostomy. Apart from the fact that he sees having a bit of intestine on the outside rather than the inside as unnatural, he's also worried about the smell (which I don't notice), the fact that he can't control the output, worried about how the bag looks, whether it might drop off, the crinkling noise it makes, the noises that come from the stoma itself, the bag ballooning under his clothes and people noticing it, whether it might leak, and the constant reminder that the reason it's there in the first place was because he had cancer. Certainly nothing on that list that makes a person feel sexy!

Only time is going to change his perspective on his ileostomy, so time is what I'll give him. Yes, I'll miss the sex and the intimacy while he's coming to terms with it, but I understand why it has to be this way.

What a great response! I, myself, have not had an issue with my bag. I was just happy to be given another chance at life. I was not supposed to survive the sepsis. My surgeon said she'd never seen an abdomen like mine on a live person before. I guess I'm just forever grateful and thankful to be alive. It's better than the alternative.

Sorry, I am enjoying being intimate more than anytime in my life! My partner accepts my colostomy and we have a ball!

I can't speak for your partner...but I haven't entered into, or even tried to pursue any kind of relationships or intimacy since my surgery a year ago. My body has changed, this is true...but psychologically...because it wasn't my choice and came with no warning...having an ostomy wasn't something I'd ever imagined. I used to model, and loved my figure.

I lost a lot of weight, gained most of it back, but my shape isn't the same, and I still have trouble even looking down at my stomach. I'm so uncomfortable with it that I won't even put myself in a situation where someone can see it. I wear baggy clothes...perhaps your partner is having trouble also accepting this new body despite you being positive. You don't feel sexy at all, cause you look down and think "I'm sick".

My ex, who was a doctor, broke up with me after my surgery...while I was still in the hospital...over text. I'm sure that didn't help my situation either.

Hello, you appear to be a very attractive woman! I have had a colostomy for 4 years! It has saved my life! I was on 4 dating sites and dated numerous women until I met the one that is moving in with me! I am sorry you feel the way you do about your ostomy! I don't understand why people can't accept it and enjoy life! My neighbor is married and has had an ostomy for 30 years! I believe your ex was totally wrong if he left you because of an ostomy!

If you love him, don't give up. Continue to read up on the subject and continue to be positive toward him. He needs you now more than ever as he is in a fragile state with the recent cancer and temporary ostomy. Be patient and listen to him. Ask if you can help him in any way. Continue to let him know that you still find him attractive and that the bag does not make you love him any less. Let him know you are present for him and anything he may need. The worst thing you could do right now is abandon him physically, emotionally, or mentally. When I had my emergency surgery, I cried for a week. I felt my life was over but I had the love and caring of my friends and family and this awesome site. It took a while, but I am doing so much better. I left my spouse recently but it had nothing to do with my ostomy. It had been coming for a long time, I just chose to stay with hopes he would change but he did not. You are lucky because you have someone to love so if you love him, don't give up on him. Good luck! I hope things get better for you!!

Agree, if he loves you everything will be okay! It is with me!

Don't wait. You should both know now if arousal is possible. It's not too "hard" to find out. If your partner is impotent, there are other options to learn about. I knew an urostomate that was impotent post-op but then he had a penile implant that he and his wife were happy to have.

I had colostomy surgery done and it pretty much ended my sex life. It resulted in impotence and I'm at the point now of thinking about getting a penile implant.

No, go to a urologist and get Trimix injections! With an auto injector! I am 67 and sex is better now than in my 20s! I have ED with a colostomy! I am tired of telling people about this and them not agreeing to do it! There is no pain, I can go for hours!

You're right, Abe!

Yes, it's sweet!

Get an ostomy wrap to wear. Then it is out of the way. Hope he can get over his reluctance.

Wish I could talk to you in person! Most women don't even know I have a colostomy! The ones that do could care less! Do what you've got to do! The only problem I have is my back and neuropathy! Your hubby should be glad he's breathing! There's no reason not to be intimate! Good luck!

Wow! I can relate to your situation. Between my sternum and my pelvic bone, I am a train wreck! I think the only thing that can love me is my cat. :( Your doctor left you and my spouse tried to kill me... but I cannot prove it. All I have to show for it is my ileostomy! He gave me the meal that started everything. I just wish the doctor would have taken blood samples. I was just so sick and close to death that saving my life was the most important thing at the moment. I have just been cut so many times in my stomach and abdominal area that the muscles are shot. No way can I lose weight! It just won't come off. I mean, I am not obese or anything like that, I am just very unattractive in that area. I wish men weren't so hung up on looks. There are a lot of women who would make very good, loyal wives if they would accept us for what is in our brain and hearts instead of our stomachs. You are a very pretty young woman and anyone would be lucky to have you. Don't give up on yourself!! I am going on 67, so I have been through life, but there is so much I want to see and do before I go to Heaven. I hope I get the chance! Take care and God bless!!