Sex with a bag
May 29, 2013 9:41 AM Subscribe
My sex life is in the toilet ever since my husband had his ileostomy. Please help.
My husband has ulcerative colitis and he had his colon removed in October. He has an ileostomy now.
Our sex life was understandably bad for several months due to his ill health - he was down to 105 lb (I am over 200) and going to the can 20 times a day before surgery. He looked like a skeleton and felt like death, I was afraid of crushing him. Then he was in hospital for 2.5 weeks, then at home following the major surgery.
However his recovery has been excellent but our sex life has not improved. He is very active now, has gained weight and is now only 10 lb under his typical weight at 140, and he is living a full life (including downhill skiing). I have issues with the bag. With ileostomy he cannot remove the bag for sex. He covers it up with a belly band but is still very sensitive about it. In certain positions I feel the bag against me and I'm squishing it and it's just weird. When he tries to initiate by walking up behind me in a chair, my head is at bag height so if I lean back into him he has a bag there.
Before he got sick, we used to have sex weekly in the weekend morning time. I would like to return to this frequency. However this is not the active time for his bag so he likes to change it then, so that time is out. It is awkward to find another time. He is tired in evenings after work and we have a 6 year old kid so it's hard to sneak around on weekend afternoons.
Also I have issues with bipolar 2 disorder, I am being treated for depressive episode now as the surgery incident was very difficult. My sex drive and interest was not the greatest before he was not sick, I didn't always enjoy sex as he has a tendency to attend to his own pleasure before mine and my mind would wander due to the mental overloads of being a full-time worker and mom. I was starting to work with him on this and then our sex life got disrupted.
I thought I could just live with it and fix the sex life later as he is a candidate for J-Pouch surgery to have the bag removed. However as his date for J-Pouch surgery grows closer he is having second thoughts and is investigating having a permanent ileostomy. I have no control over his body and his choice, but it affects me. I selfishly would like for him to put his outside body back to normal so we can have our sex life back (and go to nude beach, etc). He feels the risks of the J-Pouch and the frequency of having to go to the can would be inconsistent with the other things he wants to do in his life (work, ski). This is reasonable so if he wants the permanent ileostomy, he should get it. He goes back and forth though. He needs to decide soon as he is bleeding from the rectum and needs to have surgery to get it removed.
But if he has the permanent ileostomy. I intellectually support this. I am having a very hard time adjusting to the change in his body and I don't know how to approach it. I don't have friends that I feel comfortable discussing my sex life in detail with. Also I have tried one therapist and she was not able to help me work through it. I have limited therapy dollars so I would rather investigate CBT (I am looking at mindfulness CBT) to manage depression symptoms and prevent relapse. There is this notion of radical acceptance - do I look into that? I don't know what to think or where to turn.
I am looking for guidance as to how to accept my husband's new body and find the motivation to find sex pleasurable for us again. Right now he doesn't want to initiate and I traditionally never initiated and I am squicked out by the bag so I don't either. We are at a log jam and we don't know how to break the gap. Ideas on how to improve the situation are welcome.
My husband has ulcerative colitis and he had his colon removed in October. He has an ileostomy now.
Our sex life was understandably bad for several months due to his ill health - he was down to 105 lb (I am over 200) and going to the can 20 times a day before surgery. He looked like a skeleton and felt like death, I was afraid of crushing him. Then he was in hospital for 2.5 weeks, then at home following the major surgery.
However his recovery has been excellent but our sex life has not improved. He is very active now, has gained weight and is now only 10 lb under his typical weight at 140, and he is living a full life (including downhill skiing). I have issues with the bag. With ileostomy he cannot remove the bag for sex. He covers it up with a belly band but is still very sensitive about it. In certain positions I feel the bag against me and I'm squishing it and it's just weird. When he tries to initiate by walking up behind me in a chair, my head is at bag height so if I lean back into him he has a bag there.
Before he got sick, we used to have sex weekly in the weekend morning time. I would like to return to this frequency. However this is not the active time for his bag so he likes to change it then, so that time is out. It is awkward to find another time. He is tired in evenings after work and we have a 6 year old kid so it's hard to sneak around on weekend afternoons.
Also I have issues with bipolar 2 disorder, I am being treated for depressive episode now as the surgery incident was very difficult. My sex drive and interest was not the greatest before he was not sick, I didn't always enjoy sex as he has a tendency to attend to his own pleasure before mine and my mind would wander due to the mental overloads of being a full-time worker and mom. I was starting to work with him on this and then our sex life got disrupted.
I thought I could just live with it and fix the sex life later as he is a candidate for J-Pouch surgery to have the bag removed. However as his date for J-Pouch surgery grows closer he is having second thoughts and is investigating having a permanent ileostomy. I have no control over his body and his choice, but it affects me. I selfishly would like for him to put his outside body back to normal so we can have our sex life back (and go to nude beach, etc). He feels the risks of the J-Pouch and the frequency of having to go to the can would be inconsistent with the other things he wants to do in his life (work, ski). This is reasonable so if he wants the permanent ileostomy, he should get it. He goes back and forth though. He needs to decide soon as he is bleeding from the rectum and needs to have surgery to get it removed.
But if he has the permanent ileostomy. I intellectually support this. I am having a very hard time adjusting to the change in his body and I don't know how to approach it. I don't have friends that I feel comfortable discussing my sex life in detail with. Also I have tried one therapist and she was not able to help me work through it. I have limited therapy dollars so I would rather investigate CBT (I am looking at mindfulness CBT) to manage depression symptoms and prevent relapse. There is this notion of radical acceptance - do I look into that? I don't know what to think or where to turn.
I am looking for guidance as to how to accept my husband's new body and find the motivation to find sex pleasurable for us again. Right now he doesn't want to initiate and I traditionally never initiated and I am squicked out by the bag so I don't either. We are at a log jam and we don't know how to break the gap. Ideas on how to improve the situation are welcome.
You might try consulting the user forums at healingwell.com There is an ostomy forum along with one for UC -- it also may help inform his j -pouch considerations.
The only things that cannot be discussed are illegal drugs (including medical marijuana) but believe me, everything else is on the table and everyone is very well meaning and have seen it all themselves.
Good luck in this. I'm so glad you at least no longer have flares to deal with.
posted by janey47 at 10:03 AM on May 29, 2013 [2 favorites]
The only things that cannot be discussed are illegal drugs (including medical marijuana) but believe me, everything else is on the table and everyone is very well meaning and have seen it all themselves.
Good luck in this. I'm so glad you at least no longer have flares to deal with.
posted by janey47 at 10:03 AM on May 29, 2013 [2 favorites]
Did your husband work with a Wound/Ostomy nurse while he was in hospital? I would get in touch with her or him and ask this question. I am not a W/O nurse, but I know and work with several of them and this issue comes up very often. They can point you in the direction of resources and support groups that may be able to help you work through this with your husband.
posted by pecanpies at 10:09 AM on May 29, 2013
posted by pecanpies at 10:09 AM on May 29, 2013
Before he got sick, we used to have sex weekly in the weekend morning time. I would like to return to this frequency. However this is not the active time for his bag so he likes to change it then, so that time is out.
How long has he had his ileostomy? I ask because if it's relatively new, it may be that the process of changing the bag now takes longer than it will in another few months or so as he continues to get used to it. If that's the case, then perhaps on the weekends he could plan on getting out of bed a little early one morning, change it quickly, and then get back into bed with you? I had a temporary ileo after my colon cancer surgery a few years ago, and I found that at the two-month mark (i.e., right before I had the ileo reversed) I had juuuust started to get a handle on being able to change it without it being a long gigantic production. I imagine that another several months, and certainly within a year, it would have become even easier/quicker.
I wish you both all the best. I can imagine how hard this is on both of you, and you have all my respect for approaching this so lovingly and supportively of his needs as well as your own.
posted by scody at 11:19 AM on May 29, 2013
How long has he had his ileostomy? I ask because if it's relatively new, it may be that the process of changing the bag now takes longer than it will in another few months or so as he continues to get used to it. If that's the case, then perhaps on the weekends he could plan on getting out of bed a little early one morning, change it quickly, and then get back into bed with you? I had a temporary ileo after my colon cancer surgery a few years ago, and I found that at the two-month mark (i.e., right before I had the ileo reversed) I had juuuust started to get a handle on being able to change it without it being a long gigantic production. I imagine that another several months, and certainly within a year, it would have become even easier/quicker.
I wish you both all the best. I can imagine how hard this is on both of you, and you have all my respect for approaching this so lovingly and supportively of his needs as well as your own.
posted by scody at 11:19 AM on May 29, 2013
However this is not the active time for his bag so he likes to change it then, so that time is out. It is awkward to find another time.
I have no control over his body and his choice, but it affects me.
I didn't always enjoy sex as he has a tendency to attend to his own pleasure before mine and my mind would wander
Besides your practical issues with the bag, it seems like there's a running thread here of your feeling as though your husband makes decisions unilaterally without necessarily considering your needs/preferences.
Obviously, this ileostomy is an issue with his body, so he gets the final say in what to do about it. But by marrying, I think you do gain the right to be included in the conversation and considered in his decision-making process ("one flesh" and all that). If you feel as though his (now-injured) body is a fixed set of requirements that's being arbitrarily imposed on you from outside, I can totally understand how that would kill your sense of sexual intimacy and trigger feelings of revulsion, bag or no bag.
The ileostomy is the big practical thing on your mind here, but in addition to dealing with that specifically, I wonder whether you could work on getting yourself back with whatever joint process of relationship- and communication-building got interrupted by the surgery. It's a pretty common recommendation, but have you guys tried couples therapy? Is he still motivated to please you in the bedroom, and have you guys had conversations about how he can do that? Part of the reason why the gross stuff about your own body isn't gross to you is that you're so intimate with that body; so regaining a feeling of emotional connection with your husband might go some way toward helping you reconcile yourself to whatever long-term physical changes may follow for him.
posted by Bardolph at 11:45 AM on May 29, 2013 [1 favorite]
I have no control over his body and his choice, but it affects me.
I didn't always enjoy sex as he has a tendency to attend to his own pleasure before mine and my mind would wander
Besides your practical issues with the bag, it seems like there's a running thread here of your feeling as though your husband makes decisions unilaterally without necessarily considering your needs/preferences.
Obviously, this ileostomy is an issue with his body, so he gets the final say in what to do about it. But by marrying, I think you do gain the right to be included in the conversation and considered in his decision-making process ("one flesh" and all that). If you feel as though his (now-injured) body is a fixed set of requirements that's being arbitrarily imposed on you from outside, I can totally understand how that would kill your sense of sexual intimacy and trigger feelings of revulsion, bag or no bag.
The ileostomy is the big practical thing on your mind here, but in addition to dealing with that specifically, I wonder whether you could work on getting yourself back with whatever joint process of relationship- and communication-building got interrupted by the surgery. It's a pretty common recommendation, but have you guys tried couples therapy? Is he still motivated to please you in the bedroom, and have you guys had conversations about how he can do that? Part of the reason why the gross stuff about your own body isn't gross to you is that you're so intimate with that body; so regaining a feeling of emotional connection with your husband might go some way toward helping you reconcile yourself to whatever long-term physical changes may follow for him.
posted by Bardolph at 11:45 AM on May 29, 2013 [1 favorite]
Perhaps when you husband begins to feel comfortable changing the bag, he could teach you how to do it too. This might help you become more comfortable with the whole thing. Cuddling without sex might also help you each to become comfortable with physical closeness again despite the body change.
Hopefully he is learning about the products available to help with the squick factor, like deodorant sprays for the bag, and opaque bags so you don't have to see what's in it. You mention that your usual sex time is when the ostomy is least active, and that this is a barrier to sex, but I think it might actually be a bit of luck. If he empties the bag right before you guys start getting intimate, he can smooth out the air too and hopefully there won't be so much "squishing" feeling, because the bag will be flat and not refilling during that time.
It sounds like your busy schedules get in the way because bag-changing time now takes up your usual weekend-morning sex time, but there are two mornings per weekend, right? Maybe Saturday morning could be for changing the bag, and Sunday morning could be for intimacy. I imagine the bag change will take significantly less time as he gets more practice with it, too.
I have no control over his body and his choice, but it affects me.
This, I think, is a big deal and something you guys need to work on together. While it's true that he gets to have the final say over his own body, it's also true that his choice DOES affect you. It's not a perfect comparison, but when an unexpected pregnancy happens to a married couple, they usually work through the decision of what to do together, even though only one person's body is being affected, because the decision has far-reaching consequences for both people. And even if an ostomy was not involved, if your husband decided to prioritize skiing over sex all the time, you guys would need to be having a conversation. I can't help wondering if skiing wins in his mind right now because it's so much easier to adapt to skiing with an ostomy than sex. Dealing with sex might feel too difficult, so he's prioritizing the thing that he knows he can still do. It's important to make this decision about surgery with the understanding that your sex life is not a lost cause.
This is a difficult and probably scary time for both of you, so go easy on each other. It sounds like you feel like you should be able to just "get over it," but this really is a radical change in body image for him, and for you to deal with as his partner, so don't feel bad if it takes a while.
Finally, have you looked into support groups? The United Ostomy Associations of America has a great list of local and online support groups here. They might be a better resource than a general therapist (or MeFi), because they know about the very specific issues that come with dealing with an ostomy. Can you imagine that any married couple doesn't struggle with intimacy with such a big change in body appearance? Of course not. So you'd be in good company if you hooked up with one of these groups.
posted by vytae at 11:47 AM on May 29, 2013 [2 favorites]
Hopefully he is learning about the products available to help with the squick factor, like deodorant sprays for the bag, and opaque bags so you don't have to see what's in it. You mention that your usual sex time is when the ostomy is least active, and that this is a barrier to sex, but I think it might actually be a bit of luck. If he empties the bag right before you guys start getting intimate, he can smooth out the air too and hopefully there won't be so much "squishing" feeling, because the bag will be flat and not refilling during that time.
It sounds like your busy schedules get in the way because bag-changing time now takes up your usual weekend-morning sex time, but there are two mornings per weekend, right? Maybe Saturday morning could be for changing the bag, and Sunday morning could be for intimacy. I imagine the bag change will take significantly less time as he gets more practice with it, too.
I have no control over his body and his choice, but it affects me.
This, I think, is a big deal and something you guys need to work on together. While it's true that he gets to have the final say over his own body, it's also true that his choice DOES affect you. It's not a perfect comparison, but when an unexpected pregnancy happens to a married couple, they usually work through the decision of what to do together, even though only one person's body is being affected, because the decision has far-reaching consequences for both people. And even if an ostomy was not involved, if your husband decided to prioritize skiing over sex all the time, you guys would need to be having a conversation. I can't help wondering if skiing wins in his mind right now because it's so much easier to adapt to skiing with an ostomy than sex. Dealing with sex might feel too difficult, so he's prioritizing the thing that he knows he can still do. It's important to make this decision about surgery with the understanding that your sex life is not a lost cause.
This is a difficult and probably scary time for both of you, so go easy on each other. It sounds like you feel like you should be able to just "get over it," but this really is a radical change in body image for him, and for you to deal with as his partner, so don't feel bad if it takes a while.
Finally, have you looked into support groups? The United Ostomy Associations of America has a great list of local and online support groups here. They might be a better resource than a general therapist (or MeFi), because they know about the very specific issues that come with dealing with an ostomy. Can you imagine that any married couple doesn't struggle with intimacy with such a big change in body appearance? Of course not. So you'd be in good company if you hooked up with one of these groups.
posted by vytae at 11:47 AM on May 29, 2013 [2 favorites]
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I don't know a lot about ileostomy in particular, but I do know a little bit about getting over squick. You seem to be managing your squick through avoidance; you don't like to be around the bag, you don't like to feel it, you don't like to touch it, you don't like to be squishing it. However, you love your husband, and this is a part of him; certainly for now, and possibly permanently.
My first instinct is to recommend getting to know the bag. sure, it's gross and weird, but it's also reality. Can you ask him to show you how it works, can you spend time touching it, try to desensitize yourself to it? You're not going to be able to ignore it long-term; I think your best bet is to decide to come to love it as a part of the man you love and a major part of his comfort and health.
Good luck. This is hard under any circumstances.
posted by KathrynT at 9:53 AM on May 29, 2013 [6 favorites]