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Sex life on hold

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Posted: Sat Jun 09, 2018 6:00 am

I’m new to the forum and I’ll start by saying that I don’t have an Ostomy myself but my partner recently had an operation for rectal cancer (May 2018) and now has a (hopefully) temporary illeostomy.

His histology results came back good so no chemo required and he’s hoping to have the reversal sometime in the next few months depending on the results of the contrast x-ray.

He’s recovering well from the operation but the bag is a huge issue for him with regard to body image and he’s told me in no uncertain terms that he will not have sex, or even be intimate, with me until after he has the reversal. I’ve assured him that the bag is not a problem to me at all and I don’t find it offputting in any way, but in his head it’s a huge problem and one he just can’t get around. I ordered him a wrap in the hope that it might make him more confident knowing that the bag is covered and secure, however he explained that just knowing he has a bag of poo hanging from his stomach is sufficient to totally squash any kind of sexual feelings he might have.

We don’t even hug anymore as he’s so conscious of the bag that he holds me away from him whenever I go to put my arms around him. I’m really missing the intimacy we used to have and I can feel myself starting to withdraw from him as time goes on. 

I really don’t want this to adversely affect our relationship but I feel so frustrated and depressed about the situation. I keep telling myself that four or five months isn’t that long to wait (if everything goes to plan!), but it’s going to feel like the longest few months of my life. I’m a very touchy/huggy person and I feel like I can’t even do that now. Holding hands and a quick peck on the lips is about all we do now.

If anyone has any advice they can give me or help me understand how he is feeling just so I can get my head around it I’d be most grateful.

Posted: Sat Jun 09, 2018 7:09 am

They mess up a lot of nerves down there. He may not be able to do anything even if he wanted to. Just something I up out there to consider. He may be blaming the bag when it is not the bag.

Posted: Sat Jun 09, 2018 8:07 am
xnine wrote:

They mess up a lot of nerves down there. He may not be able to do anything even if he wanted to. Just something I up out there to consider. He may be blaming the bag when it is not the bag.

Good point xnine, I was assuming he’d tell me if that were the case but maybe not. I guess I’ll find out when the bag’s gone.

Posted: Sat Jun 09, 2018 11:00 am

Mertle Dove,  Planning for the reversal is a positive attitude, but reality can change a relationship if the inability for a successful reversal is NOT considered.  A successful reversal is dependent on so many things.  Overall health, the reason for the original surgery, and unexpected  complications can quickly shift the end result.  It is ALWAYS wise to respect the possibility that a reversal may NOT happen. 

Acceptance is (I think) the most difficult part of ostomy surgeries.  Not only do we have to come to terms with the reality that our body is no longer the body we have known and loved, but we also have a total head trip to learn to deal with as far as our image in the eyes of our loved ones.  EVERY ostomate that I have spoken with encountered negative reactions from family members and personal friends when they discussed their surgery with these folks.  Disguised as sympathy, a reaction of positivity only for the reversal can be a damning thing in a relationshp. This doesn't mean that the feelings for the ostomate changed, or that their respect for the ostomate diminished, but rather that the lifelong stigma that has been associated with the "bag" is ingrained in our psyche whenever this situation has even been considered.  Even most medical professionals don't have enough experience dealing with this type of surgery to offer anything valuable on the subject, but hopefully compassion is part of their own character so that they can help the ostomate with clarity about life with an ostomy.  My own hospital team, surgeon, wound nurse, and dietician were WORTHLESS when it came to help both before and after the surgery.  Mechanical at best, and not very forthcoming about the REALITY of the situation. 

HOWEVER, this site was invaluable helping me to come to terms with my new body and my new lifestyle.  The information and support offered here were REAL, and very helpful in dealing with everyday life situations.  Humans are a very judgemental species, and learning to change THAT attitude is a very important first step in the acceptance of an ostomy surgical outcome, and it begins with the patient.  Wanting things to return to "normal" is to be expected, but should NOT be the "bar" that is set for success in order to continue to partake in and enjoy our lives.  Hopefully, LOVE is UNCONDITIONAL, and does not dissipate with changes in our lives such as our physical appearance, especially when they are due to medical issues.  And the greatest love is standing strong and helping the ostomate to accept his life AS IT IS, rather than as it might have been.

Peace

Posted: Sun Jun 10, 2018 4:28 am

Thank you so much for sharing your feelings on this very personal subject and what wonderful replies you have recieved. Relationships can indeed be adversely affected by these sorts of conditions and maybe you both should consider some practical help in terms of personal counselling for the relationship side of things. 

Best wishes

Bill

Posted: Mon Jun 11, 2018 3:43 am
dadnabbit wrote:

Mertle Dove,  Planning for the reversal is a positive attitude, but reality can change a relationship if the inability for a successful reversal is NOT considered.  A successful reversal is dependent on so many things.  Overall health, the reason for the original surgery, and unexpected  complications can quickly shift the end result.  It is ALWAYS wise to respect the possibility that a reversal may NOT happen. 

Acceptance is (I think) the most difficult part of ostomy surgeries.  Not only do we have to come to terms with the reality that our body is no longer the body we have known and loved, but we also have a total head trip to learn to deal with as far as our image in the eyes of our loved ones.  EVERY ostomate that I have spoken with encountered negative reactions from family members and personal friends when they discussed their surgery with these folks.  Disguised as sympathy, a reaction of positivity only for the reversal can be a damning thing in a relationshp. This doesn't mean that the feelings for the ostomate changed, or that their respect for the ostomate diminished, but rather that the lifelong stigma that has been associated with the "bag" is ingrained in our psyche whenever this situation has even been considered.  Even most medical professionals don't have enough experience dealing with this type of surgery to offer anything valuable on the subject, but hopefully compassion is part of their own character so that they can help the ostomate with clarity about life with an ostomy.  My own hospital team, surgeon, wound nurse, and dietician were WORTHLESS when it came to help both before and after the surgery.  Mechanical at best, and not very forthcoming about the REALITY of the situation. 

HOWEVER, this site was invaluable helping me to come to terms with my new body and my new lifestyle.  The information and support offered here were REAL, and very helpful in dealing with everyday life situations.  Humans are a very judgemental species, and learning to change THAT attitude is a very important first step in the acceptance of an ostomy surgical outcome, and it begins with the patient.  Wanting things to return to "normal" is to be expected, but should NOT be the "bar" that is set for success in order to continue to partake in and enjoy our lives.  Hopefully, LOVE is UNCONDITIONAL, and does not dissipate with changes in our lives such as our physical appearance, especially when they are due to medical issues.  And the greatest love is standing strong and helping the ostomate to accept his life AS IT IS, rather than as it might have been.

Peace

Hi Dadnabbit, thank you for your amazing reply. I do totally agree with everything you’ve said, but at the end of the day it all comes down to how my partner feels about it, not how I feel about it. I can honestly say I’ve never reacted with negativity regarding the his illeostomy and have tried to get him to see it, not as something disgusting (which he feels) but rather just as a different way of doing things. But then I don’t have a stoma so I can’t really understand fully why he feels the way he does.

He did try to explain his reasoning behind refusing to be intimate. Basically he can’t cope with the thought that he’s basically “pooing” all the time and has no control over it. So the thought of pooing during sex is totally offputting for him. None of my suggestions such as eating marshmallows beforehand to stop the output temporarily, or wearing a wrap, can convince him otherwise. His focus, even before the operation, has always been how soon can he have it reversed, and nothing I can do or say can change his viewpoint.

I guess all I’m really trying to find out is whether other ostomates have felt the same way and whether and how they managed the process of coming to terms with it. It’s still early days as he’s only just over four weeks post surgery, so maybe other people felt this way initially and managed to overcome it?

It makes me sad that his attitude of “I won’t come anywhere near you while I have this” is preventing us from getting back to normal. If I knew how to help him accept life as it is rather than how is was, I would be doing it, but I’m really struggling here to make any progress.

Posted: Mon Jun 11, 2018 3:50 am
Bill wrote:

Thank you so much for sharing your feelings on this very personal subject and what wonderful replies you have recieved. Relationships can indeed be adversely affected by these sorts of conditions and maybe you both should consider some practical help in terms of personal counselling for the relationship side of things. 

Best wishes

Bill

Bill, thanks for the suggestion, but unfortunately my partner is not the kind that would even consider counselling of any kind. I’d be more than willing, but he’s more the type that has to work through things on his own. He’s not much of a talker, which is why I’m on the forum and not him!

To be honest I wouldn’t normally discuss such a personal subject on a forum, but desperate times call for desperate measures!

Posted: Mon Jun 11, 2018 9:11 am

Mertle Dove,

I totally understand where your partner is coming from.  The results of my UNNECESSARY surgery (that's a whole drama on its own)  have created for me a situation of being unable to trust ANY doctors.  I won't even allow a doctor to touch me.  Your husband's desire for the reversal surgery is very normal, but he should do a LOT of research regarding the surgery, because quite often the results are less than stellar.  The outcome is one of those with very varient results, and can end with a quality of life that is sorely lacking.  Right now, being able to go about daily chores and life's needs may not seem to be all that, but if he were to be relegated to a bathroom life, with constant need for facilities, the quality of his life would alter drastically and having a "bag" might not seem as horrible as it does right now.  Good luck with your support for him, it is INTEGRAL for his recovery, and your willingness to research on his behalf is truly impressive and a big plus for him.  Don't forget to take care of yourself, too.

Peace

Posted: Mon Jun 11, 2018 11:20 am

Mertle Dove,

  I have to chime in here so please forgive me for being blunt.  4 weeks post op is also pretty early.  And every ostomate is different when it comes to body image.  I never had an issue with sex and having an ileostomy.  But then again, I'm a confident guy.

  Not to be negative but there's always the possibility that the reversal may be postponed or not happen at all.  And your partner may have to come to terms with that.  If he's capable.

  And not for nothing, if I had a partner and they told me they weren't having sex with me until after the reversal, I'd be like, "Ok, well, good luck with that then.  I'm going to go find someone who isn't so self absorbed and takes my feelings into consideration too."  The audacity that he expects you to just stick around and wait for him to get his head around it is not fair to you.

  I get that it's tough to deal with shxtting in a bag and having no control over it but, because of it, he is alive.  And control is an illusion in all aspects of life.

  I might be talking out of my arse but maybe give him a few more weeks and see if he comes around.  And maybe explain to him that you have needs that need to be fulfilled and if he is unwilling to even entertain the idea, you might have to re-evaluate your relationship.  Just my 2 cents.

 

Bain

Posted: Tue Jun 12, 2018 5:00 pm
Hi, whoever suggested that perspectives change over time was absolutely correct. I’m 6 month’s post-op at this point, am becoming a pro at self care and feel completely different about life than even 3 months ago. It’s difficult, but if you can stay loving and compassionate for a while longer, your partner will most likely shift toward a more positive view of things. In the meantime, if he won’t consider counseling, you might consider it for yourself. Bless you!
Posted: Tue Jun 12, 2018 6:04 pm

Hello.

i would not even concern myself with this yet. It is still super new and I am sure he is overwhelmed and exhausted by it all. He probably just needs time to become comfortable in his own skin again. Patience!! Smile

Posted: Tue Jun 12, 2018 6:16 pm

First off, I want to thank and applaud you for doing the research and seeking help to better understand your partner and his needs at this time! Every person's journey to surgey is different, and every ostomates experience post-op is different too. From your post, I gather your partner's ileostomy is due to rectal cancer. Without furhter information (did he have UC or Crohn's prior to his diagnosis, how long from cancer diagnosis to surgery, etc.,), it is diffiult to understand what is triggreing his insecurities and feelings. People with long suffering symptoms who have bags, saw surgey as a chance at a better life. While having a complete coloctomy for most of us means cancer is no longer on the table after years of screening, scares and various forms of pain, incontinence, and other insecurity inducing aspects of IBD. But if he was just recently diagnosed with rectal cancer with no other issues leading up to his abrupt surgery, that alone is probably a major factor in his ehavior right now. Cancer. Mortality. A complete life flip. Most of us have/had time to process our situation. Cancer takes your breath away...

I had UC for 17 years and the two things I was afraid of were cancer and a bag. As an American, I had to ask for the surgey. There is to much money in big pharma for anyone to every suggest it as a solution to a better life here (a rant for another time). It took forums like these for me to make the decision myself (and stop fearing the bag) and find a surgeron, who I told upfront and day of surgey, there wouldn't be a second, reversal surgery. Pooping in a bag all the time was a glorious alternative to how I had been living. And as a lot of people have mentioned, reversals can be tricky. It's another go under the knife, it's more back pain, nerve damage, time off from work and life, more toilet breaks as the intestines heal (again), etc.,

Even after making the choice, having the surgery and living with an ileostomy, there have been days where I wish for my old body back. I wish intimacy or dating wasn't so scary (I was estranged from my husband when I had my surgery and he never came back), I wish I could tell you your partner will come around. But right now body image, performance mechanics (as someone suggested earlier), pain, and shock are all normal. I do know 3 months after surgery I was feeling great, then 6 and on (I am 2 and a half years since surgery). Every day it gets better. And then a leak happens or something unexpected, but it does get better! It helps to laugh and make jokes and find funny ostmates who help to normalize the experience (facebook is great for that). I joke about mine, alot! And as for sex and intimacy, maybe change WHEN you have sex when he is ready. Mornings after going all night without eating/drinking are great for slow motility (after emptying the overnight waste, of course) and mid-afternoons are good too. I HATE doing anything at night, there is always so much happening in my digestive tract where it's not fun unless it is really fast.

He will get his groove (and 4 weeks is seriously nothing for figuring that out just yet). I just hope you get to get a little of your own.  Sex begets sex, perhaps ask him to just be with you while you address your own needs. That might help get him back to you too;-)

Good luck...

Posted: Tue Jun 12, 2018 6:45 pm

Great reply! I was also taken aback when I read your thoughts concerning Reversal....that the bag might have seemed not too bad at all, if complications afterwards 

Posted: Wed Jun 13, 2018 12:33 am

I was diagnosed with Stage 3b rectal cancer 9/11/2017, and had chemo, radiation, then surgery in January. I think i understand how your guy feels - my cancer diagnosis has been hanging over my head like a loaded gun. My first set of tests in May came back a mixed bag, one elevated tumor marker but my CT scan essentially clear, still adding to my fear that I will die within 5 years. That could be the real reason why he is shut down. Only he knows that for sure, but if you can ask him to talk to you about his fears, he may open up and surprise you.

I have not had the wherewithal to have sex with my husband. My colostomy bag is an unwelcome, smelly, constant reminder that I have a pretty good chance of not being at my 14 year olds high school graduation. Four weeks out of my surgery and I was still in a great deal of pain and still coming to terms with this demon hanging off my left side. I had an awesome support team- from my oncologist to my regular provider, a nurse practioner who I swear is an angel from above. Even my kids were understanding about my diagnosis. You all have made me realize I am quite fortunate, and I have been rather selfish where my husband is concerned. 

My take on things is that your man, and you, are dealing with so much. Can you touch him, gently using your fingertips? He may need to ease back in to intimacy. For me, the more the matter is pressed, the less I want to participate, but I try to make sure that my husband knows I love him and I'm ever so grateful for his support and patience. 

Posted: Wed Jun 13, 2018 7:49 am

Hi Mertle 'DOv,   You received some great replies, to what must be a very frustrating delemma.   I had my ileostomy surgey when I was quite young ( 15)   and have had it for more than 50 years.     I had a lot of adjustments to make...when first dating, intimacy, childbirth,   divorce, and out in the singe world again.   My husband also had an ileostomy, so while that wasn't  as specific issue for us,   it did keep us together either.   But we were married for over 24 1/2 years.....and one situation threatened to tear us apart, early on.   We had both hope for me to become pregnant, and were thrilled when I did.   But ironicaly,   my then husband had an extreme fear, of having sex with me.....afraid of hurting the baby.   In the first weeks I joked about it,   but then I started to feel rejected.   I let him know that the next 8 months would be uppsetting and frustrating for me   and our relationship, if he didn't start making an effort to see me as " touchable".   We started slowly,   with holding, touching, kissing.....some simple massage.   I had to guide him as to  where the " baby was", and positions that didn't cause as much stress.   I can't say it was easy,   but after having baby #1,   he was more prepared for baby #2.      And while an ostomy is quite different.....the need/ fear, of not getting to close to others.....stems more from self, than from anything someone else feels about it.     The best suggestion is for you to let him know that intimacy, has nothing to do with the ostomy.   It's him, ( all of him) that yu want to be with),   but start slowly...    Hold hands at night.....try giving him a back or shoulder massage....have him get use to be touched, intimately......even if he has no reaction.    It took me more than a year to respond sexually after my last surgery......too much nerve damage,  made me nervous and anixous as to whether I'd ever function again.    There are lots of physical,  abd emotional,  adjusments to make, and althouh it's been 50+ years for me,   I still find myself anexious if I'm in a new relationship.    Best of luck to you.  and your husband.   

 

 

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