Hi all, I read your post GJ earlier in the day, and had to think about how to respond to this.
I've had my ileostomy for 50 plus years (from when I was 15), but it's never been the ostomy itself that made me uncomfortable about my appearance. I was in a bathing suit (at age 16) the first summer after my surgery.
My loss of positive body image happened from all the effects the steroids had on my body. First, I lost a lot of weight and was wasting away (79) pounds. Then came years of treatments with steroids.... I grew hair down the sides of my face while losing the hair on my head (14 wasn't a good year for this teen). Then they switched meds, and I blew up with about 50 pounds of fluids. My skin turned a lovely shade of "red," like perpetual sunburn, while I began to get stretch marks (purple) on my legs. I looked like a red zebra with purple stripes. Insensitive people would ask, "What happened to you?" and I'd tell them that my mother beats me. Today, that would get her put in jail.
Finally, when I developed osteoporosis and degenerative disc disease, the doctors had to stop the meds... and I began to bleed... actually hemorrhage. So in Sept of 1963, I had an emergency ileostomy... went into shock on the table... and developed pneumonia. I gather my life was touch and go for a time, and when I woke up, about two weeks later, and looked in the mirror, I screamed. I'd lost about 40 pounds (of fluids) and didn't recognize myself. I know my body went through changes, but I couldn't see them since I couldn't stand up without the back brace on... for almost a year.
August of 1966, I was "recovered," was out of the back brace, was finally going back to school, but had to deal with the reality of what my "stretched out body looked like. I have stretch marks from my ankles... up my legs, all over my belly (along with the major scars and pulled-together skin from the site of 2 hernia repairs). I no longer had a waist... and had so much flabby skin (from the brace) on my lower back that I was unable to get into a pair of pants.
I was so glad to resume my normal life that I didn't give any of it much thought... until I tried to get my stretched out "boobs" into a bra that fit me. I was a 16-year-old teen with breasts like an 80-year-old woman "literally" udders... that were empty. Finding a bathing suit that "fit" was more about finding one with enough support that would also hold in the stretched out underarm skin. Ladies... you'll relate to this... A woman in a "foundation" store asked me if I'd recently had a baby. When I said no... she said she had never seen breasts like mine on a teenager. Needless to say, I ran out of the store...
So, through the years, did I sometimes feel unattractive? Obviously, yes. Was I upset, sad, angry, depressed? Yes... to all of those. But even as a teen, I realized that the ostomy saved my life. I did harbor some anger towards my parents for choosing medical intervention that destroyed my body rather than have me go through the surgery. But eventually, I got over that... especially when my oldest son developed Ulcerative colitis and went on the same roller coaster ride of medical intervention (stretch marks and all). Parents do the best they can... and my "job" was to live my life as fully as possible... because I was a walking talking miracle, and my two sons, born out of my disfigured body, were truly a blessing.
I learned to "do the best I could with what I have. I never had the body for a bikini, but I do need to find a one-piece that has enough tummy support to hold the ostomy pouch flat. People, you have no idea how "small" these appliances are these days, compared to the ones I had to wear way back when. Today... finding a suit with the bra support is still more difficult than finding one to support my flabby belly and pouch.
For you men with stomas placed near or above the waist... I really sympathize with you. My ex-husband also had an ileostomy (that's how we met) and he was even more self-conscious than I was. But back in the day... men's bathing suits were more than heavy stretch fabric types, with wide waistbands. He had a half a dozen of those that lasted him about 20 years. I don't think they even make them anymore, and since we've been divorced 20 years, I don't know what he wore instead. Frankly, I like those much more since you could see more of the guy's "butt" and even the "package" up front. The big baggy suits that have been in fashion for the last 20 years... don't really do much for the male body. (Not everyone can or wants to wear a speedo). Love the suspender suit that someone posted. Just as the bra bathing suit industry has adapted and now services women with mastectomies, I think we need to make manufacturers aware of the needs of "ostomates." There are more and more of them around the world...
I don't know how to help others have a better body image... but I do know that "clothing" covers up a lot. Even though I'm quite overweight, I get a lot of compliments on the way I look and the way I dress (for my size and shape). I've learned to live with my imperfections... and now at 67 (and dating) I'm probably less self-conscious than I was in my younger days... I hope this helps some of you...
Best regards...
Marsha