Struggling with Intimacy After Ileostomy Surgery

I had my permanent ileostomy surgery 7 weeks ago due to Crohn's disease and I've been talking about getting intimate again with my husband and he doesn't seem interested at all.... It almost seems like it makes him nervous and turned off... It just makes me feel worthless and I don't want him to be grossed out by me and not want me anymore. I just feel sad because I was worried this would happen and it just seems like he is grossed out with the thought of sex now that I have this stoma. Anyone else have this issue?

Hello Violeteve.
Thank you for posting what must be a difficult subject for you.
Judging by previous posts on this subject, your experience doesn't sound as if it is uncommon. Sometimes partners are indeed nervous and turned off. A few might even be grossed out by the thought and sight of a stoma, or any other disfiguring aspect to a person's appearance. However, there are sometimes complex alternative reasons for a person hesitating to indulge in sexual activity.
I can vividly recall many years ago when my wife had a hysterectomy. She was going through a negatively charged emotional time and feeling somewhat worthless as a woman. Also, we were not communicating with each other very well about how we felt about this situation.
From my perspective, she had recently had major surgery and there was no way I wanted to hurt her, complicate, or aggravate things physically by sexual activity.
From her perspective (apparently), this was an indication that I was no longer attracted to her in ways that had previously culminated in physical sex. 
How to overcome such obstacles to a continuing positive relationship is difficult to prescribe for because we are all different. Therefore, solutions must be tailored to suit each individual's needs. 
Probably, talking openly about one's feelings and about the reasons for our behaviour is a good way to help each other understand each other's perspective. If this communication cannot  be achieved face to face, then sometimes and independent individual such as a counsellor or psychologist can help that process run more smoothly.

I do hope that you can both work through your present situation to find a more positive way forward.
Best wishes

Bill
 

 

I struggle with the same thing. I even dated a few girls that insisted it was fine and didn't bother them, but I didn't like the way I felt. I feel now that the only way I can be fully intimate and comfortable is with someone else who has an ostomy as well. I'm so sorry to hear you are feeling this way and going through what you are. Just know, there are plenty of good men out there that would give anything to be with someone who looks like you, bag or not. You have to believe that, and be confident about it, we only get 1 life, don't let what saved your life be the thing that ruins it. Much love

Hi V,

The key to intimacy, and relationships in general, is communication. Bill hit the nail on the head... men are from Mars and women from Venus... we don't speak the same language and communication is seldom optimal. And when we don't communicate, we assume... which is never a good thing. You two need to sit down and talk it through... it's really that simple. Don't assume anything about his actions or lack of... ask him what he's thinking and feeling. And tell him what you're thinking and feeling. You guys can work this out, you really can. Just don't sit on the sidelines and wait for things to play out, as that seldom works out well. Dealing with situations like this is what true love is all about. You got this!!

;O)

Hello V

As others say, not uncommon. I had the same situation as Michaelthom, my partner of 36 years never had any concerns but I did. A bit of time and elastic waist wrap to keep the empty bag concealed and look out. Maybe he feels he may hurt you. A little time may make a big difference.

Is it because he's scared he will hurt your stomach/stoma?

Talk to him. Communication is the key to all problems. Tell him how you're feeling and get him to open up about how he's feeling. You know what men are like; we need a nudge to open up... 7 weeks is still very early days. You and your partner have to learn to live with your stoma and further on accept it. Start off with some kissing/caressing. I'm sure it won't be long until you both want to go much further.

I've had an ileostomy since the 80's, so I've had my fair share of short and long-term and one-night stands in the past. The first thing they always said when they knew I had a stoma was, "I won't jump up and down on your stomach." My reply has always been, "You better jump on it, woman!" lol... Fear is normal when it's something new to you. Take one small step at a time.

You nailed this, Bill. 100% a true voice of experience. Communication.

Violet, you are getting advice from men here. Good advice. Wait until to hear from women.

It is normal what you are feeling and will be a true testament of your marriage.

But you both gotta talk openly.

We are not strangers as men. We know as men how your guy feels but we too have stoma so we see both sides.

The women in here will offer ways to "spice" things up that worked for them.

Honestly, be patient. Advice here works, sweetie. This is just a bump in the road for you both.

Hi Violet, when I joined this site after my first surgery (abdominal colectomy and loop ileostomy) only guys reached out to me on here- don't get me wrong, some were very helpful, but sometimes I really wanted to talk to a woman because our anatomy and physiology are different. I wanted to talk to someone trying to navigate this in a relationship and I have a teenager and a tween. I had kind of an opposite issue initially because of medical trauma I didn't want anyone to touch me because I associated touch with pain. I really wanted to get to know my new anatomy by myself before I shared it with someone else. My husband would say we were going through this together, and I would say something like no, his body wasn't going through anything like mine and he had no idea. For me having girlfriends and female family members support me helped me more than any man, my husband or whoever tell me I was beautiful. I'll send you a message so we can talk more if you want. ☺️

Hello, I just had a colostomy May 28th, so I totally understand! I have been with my husband for 35 years, and I was afraid he wouldn't want to be intimate anymore due to my bag. At first, he was afraid of hurting me - so maybe your husband feels that way. We talked about that and now it's no problem for us...and I have found that if I wear a clean Hollister "closed" QuietWear bag we can't hear it crinkling- and he can't see through the bag if it happens to get exposed- so it makes me feel a lot better. I also started wearing sexy bodysuits to hide my ostomy while being intimate, and that has helped build my confidence. I know how hard it is, but you will find ways to make it work!!

Update:  I had my colostomy for 8 months before my reversal.  Realized pretty quickly Hubby couldn't have cared LESS about the bag - it was only me that cared.  

Well put to both of you ladies replying. Proved my point. Thanks.

Hello Violet, everyone gave truly good advice and I agree with all. I think 7 weeks is a bit early for physical intimacy. Give it a few more weeks and it will happen naturally. For now, you need to be affectionate and loving to each other; gradually, the physical side of it will fall into place. That was the way which worked for me. Good luck.

My husband doesn't have a problem with it at all. But, I'm the one that feels uncomfortable. So, I wear a lacy wrap and that gives me a little more confidence. But, I also agree with most of the people here who recommend to have a discussion.

Good posts/advice. Have to have a 2-way conversation about it. Worry over ‘hurting' you is a valid concern. The newness/strangeness was something we had to overcome so it's not unreasonable for the partner to have a similar learning curve. A frank discussion should help reveal the actual issue(s) and potential solution(s). Good luck.

 

After my ileo surgery - it was me who had the body issues (and still do). My partner, after a few days, said "show me". Followed by a hug. 6 years on and I still feel more comfortable wearing a wrap or a cami top but he loves it if I am naked.

As it happens - he had a colostomy in April this year and it doesn't bother me in the slightest, of course!

I'll echo what DexieB said. Give yourself time to heal and definitely speak with your husband. He actually may be afraid of hurting you, may still have those recent memories of you being in pain, post-op, etc.. In terms of being intimate, there are a bunch of things to try and see what works for you. Maybe a non-see through bodysuit with snaps down there, panties that're open down there....I found a company, Rhonda Shear, from which I ordered panties in a smaller size, nice stretchy material, and reversed them so the larger side fits in front and covers my bag completely and the side that's technically supposed to be the front goes in the back and they pretty much become thongs. There will be a lot of trial and error but an open, honest conversation is step number 1. You'll figure it all out and it'll be okay!

"We only get one life, don't let what saved your life be the thing that ruins it."

Such great advice. It really says it all.

I've worn a pregnancy band to hold my bag on place as well as cover the bag up. Amazon also sells a couple of lacy bands, really sexy looking ones, one black - one nude. These could work to help keep your intimate life aside