Hi,
I was so sad to read about your husband and his inability to accept how you look now, and I hope things are getting better. I posted here a long time ago, some time after my first surgery when I got my ileostomy and then right before my second one. I was the one, not my husband, who didn't see how he could ever love me or be attracted to me for how I looked -- but then again, I was down to 95 lbs, (barely needed band-aids to cover what little dimples I had left on my chest, let alone a bra!) and had this bloody gross alien (yes I felt that way too) sticking out of my stomach, with disgusting green slime coming out. I couldn't imagine how I could possibly be any uglier, I felt so completely disgusting and horrible that I was sure I would be rejected by anyone who found out I had it.
The first time my ET nurse changed my bag in the hospital I was adament that my husband leave the room, because I was sure he'd bail forever if he saw the whole gross thing. I cried as he just stood there and very scientifically watched the process, because I was freaking out myself, and couldn't believe he wasn't running from the room, retching. I asked him how he could stand it, and he just shrugged his shoulders and said, "I've cleaned a lot of fish!" Well, good for him, because I wouldn't have ever believed I was someone who had signed up to see my insides on the outside this lifetime, and I didn't really have the stomach for it myself.
It helped enormously that before I even left the hospital some very dear friends asked to feel the ostomy and see the bag (yes the initial see-through kind), which made me feel very loved and accepted, and I was shocked at how many visitors matter-of-factly told me they either have a family member or a friend with some type of ostomy! Like, ok, this is just a normal thing, why wouldn't we still love you?? The biggest thing was probably that as soon as I got home a friend came to watch me while my husband went out, and she asked me what I most needed. I jokingly said "a shower" and she said ok, let's go! I said no way, I wasn't going to let her do that, even though I was so weak that I had to sit in a lawn chair to take a shower, and I had about enough strength to either soap myself up but not hold the removable shower hose to rinse off, or to wash my very long hair but not condition or rinse it. I cried and told her I was too embarrassed about how I looked, and she told me she had cared for her fiance when he was dying of cancer and would be honored if I would let her do this for me.
It was such a huge step, a spouse is one thing, but a close friend? Eek! And it was the best thing ever.
I went through a time of looking up ways to hide the bag, like the bag covers made by "Yentl's Secrets", but really, once I got into a cloth covered permanent pouch system, it wasn't an issue anymore. The real issue has now been that I've gained over 70 lbs since I left the hospital, and he's much more turned off by my weight! I used to be 120-125 lbs, very skinny and "sexy", but now I think I looked anorexic and I'm way happier with a little fat on me. I'd love to lose some weight but fell and hurt my knee in February so I've been unable to exercise since then, AND am having some hormonal problems that have made me put on a lot of weight as well. (As one woman in my local ostomy group said, "it's not the bag, it's the extra 100 lbs!")
And seriously, we have had our share of marital problems before and after the surgery, and one of the many big things that I truly believe has kept me in the marriage HAS been the whole issue of well, this one has been able to be attracted to me with the bag, but can I trust that someone else would? That's a real concern for many people.
I went from not even having a single stretch mark after having 2 kids and always having been able to dress very sexily, to suddenly (in a matter of 8 months) having a 12" scar in the front, a stoma, a bag, 40 additional pounds over my normal adult weight (and more since then), a very bumpy worm-like scar in the back from the proctectomy, and a 3" scar on my upper back from a pre-cancerous mole removal. Talk about major self-image problems... which still continue to this day, since I have added another clothing size since last winter, so the clothes that fit me last year didn't fit this year. I have spent an awful lot of time crying in dressing rooms the past year. I had weight issues as a young adult, but when I got sick and stayed underweight, all that went dormant, but rose up again when I got well and finally gained a healthy amount of weight. I think a lot of issues can go under the rug when we're sick, but as we get well they come up again - marital problems, self-esteem stuff, etc.
I guess the bottom line is (sorry for the looong post) that we need to learn to love ourselves first, bag, stoma and all. That will make us balanced and emotionally healthy enough to face our intimate relationship issues; but until we heal our own stuff about ourselves, it's more confusing or can be more of a struggle in our intimate relationships, to know what to do (stay, leave, date, etc.) Hopefully you can find a therapist or someone in a local ostomy group who can mentor you, like I have.
Good luck and please let us know how things are going!