Embracing Ostomy: Share Your Journey & Body Positivity!

Hi all,

I recently read a post on a topic called "Looking Inside," back from January 2015, which I seem to have missed. I think that so many people struggle to develop positive feelings about themselves, with or without their clothing on, but when faced with ostomy surgery, many begin to doubt their sex appeal and/or body image. How much of that is internal, or a vision of how others perceive them, is personal to the individual. I've admired people with ostomies who have gone online to demonstrate how they change/manage their ostomy, but I thought we could do something different and easier. Let's post pictures of ourselves... clothed, or with our pouch showing... or both, and see what happens. I've been overweight much of my adult life, so body image has little to do with my ostomy and more to do with my shape and size. So I'm first going to post a very old picture of me and my ex-husband on our honeymoon. I'm the "chubby" one, but we both have ileostomies. I hope others will join me in posting what might be a lot of positive feedback.

Many thanks,

Marhsa

Hi Marsha, I posted something entitled "What's inside?" back in January.  Not sure if that's the one you mentioned but I'll comment along similar lines. My point was that unfortunately we typically put too much emphasis on what we look like rather than who we are.  People's priorities might differ and I'm not judging.  I think we should do whatever we can to be the best we can be at what we think is most important.  Phew, that was windy.

I'm a 75 year old guy whose golf swing is more important than my appearance.  Thankfully, my wife of 53 years negates my need to look for a partner.  She also makes sure I don't look like a slob.  

If you want to discuss beauty, I think that's different from what we look like.

BTW, you guys look great.

Respectfully,

Mike

Hi Mike,

Thanks for your very relevant (not windy at all) reply. It was your post "What's Inside" that I recently read, and thought was great. I don't know how I missed it at the time, as it was thought-provoking.

Knowing that you're a "good person" inside doesn't always help one cope when so much emphasis is put on "Appearance". That's what I wanted to focus on with this post.

I truly believe that "Beauty is in the eye of the Beholder", so what we think of another's appearance is really subjective. I married a guy with an ostomy (that's how we met) so it was never an issue for us.

While I do agree with you that who we are inside is much more important than what we look like, our appearance is the first thing people see. I thought this post might help new/older ostomates reassess their feelings about their appearance before/after ostomy surgery.

Growing up female, what you wore, how you looked, makeup, etc., pretty much added to your self-esteem or detracted from it. Weight, size, and shape were another issue. Raising 2 boys gave me another perspective on how differently one views their own appearance. The tall, dark, and "handsome" kid always thought he was funny-looking, while the "cute" kid had so much more confidence.

I was a teen when I had my ostomy, so it was always part of my identity. On this site, women and men alike wonder how someone else (a new partner) would accept their surgery. In my experience, the most important part is "self-acceptance first". For some, it's not an easy journey. How lucky you are to still have your wife to keep you "neat and spiffy" (not looking like a slob), and kudos to you for your golf game!! You both have your priorities in order! I thought this topic (perhaps some pictures) might help people/ostomates realize that a "plumbing" issue doesn't have to be "the end" of the life they had prior.

Sadly, my marriage fell apart 20+ years ago, and my ex died 2 years ago. I look at the picture I posted and see a young couple who came together in their 20s after going through their respective sick childhoods and managed to go forward, marry, and have two wonderful children together. We knew we were survivors... but at first glance, the rest of the world only sees 'the package'. We both had agonized over finding the right bathing suits... ones that didn't let anything show! How young we were! Memories. They make me smile.

Hey Marsha, each of us is surrounded by any number of folks whose opinions affect us in different ways but I think our opinion of ourselves is most important. When I got sick, I learned a lot about myself and, in some respects, was shocked. I had a couple of cancers and before the ostomy, which I swore was NOT an option, I felt physically damaged and emotionally weakened. It was like, “who the heck am I?” Then I learned a whole lot from folks like you, and things are way different now. That's a good thing.

I know we sometimes try to rationalize stuff, but it is what it is. One's stoma might be beautiful, but that's only relative to other stomas. It's still part of guts sticking out of the abdomen that dumps crap into a plastic bag. Difficult to call that pretty, and it's probably way worse for the girls. Being a good, caring, empathic, helpful human doesn't change the appearance of that thing one bit. Knowing we're doing the very best with what we're dealing with can make us feel a lot better about ourselves. Prettier? We need to look way deeper to find real beauty.

You have some beautiful memories to cherish, and I think you certainly have things in perspective. I'm so sorry for the not-so-good experiences, but I compliment you on how you handled them.

Thanks for sharing.

Sincerely,

Mike

Hi Marsha and Mike, I want to thank you for your candid posts about appearance, self-confidence, and life with an ostomy. Marsha, your photograph is lovely and a moment captured in time. Thank you for sharing it with all of us. Being sick and gaining an ostomy taught me a lot about myself, my family, and my friends. I won't go into all of the details, but being able to continue living life was very important. For me, having an ostomy does have its challenges but nothing too difficult so far. These last few days have been my reflection time. My mood is like a rollercoaster.... up, up, up and down, down, down. Three years ago today, I was in the hospital battling for my life and losing miserably. The medications made me more ill and I was dying and in so much pain. I will never forget that the system was more concerned about me becoming addicted to the pain meds than treating my pain. I am sad because my patient experience was not that great. This journey is surreal, an abstract painting of my life as I never had a single bowel issue before food poisoning. The food poisoning led to an autoimmune response that destroyed my colon. Like many of my fellow ostomates, I continue to experience the fallout of UC including pain and joint swelling. Expressing gratitude helps me with my day-to-day living. I am grateful for another day to see my family, go to work (I can't believe I wrote this...LOL), food shopping, church services, and so on. I am grateful to see the sun rise and set each day. I am grateful for the change of seasons, although I do prefer the warmer ones. Although I have an ostomy and it is permanent, I believe one day, new surgeries will come along that may give me the opportunity to be reversed. Life is a combination of the bitter and the sweet. I appreciate those sweet days. Thank you for your posts and wise words of inspiration. Take care - LH Lastly, if you have a moment, please keep my childhood friend Maria in your thoughts and prayers. She had a stomach transplant the other day and her recovery will be touch and go for several months.

Thanks for the reminder LH.  Sometimes, after a terrible day or two, it took a lot of energy to be thankful for just surviving.  I think it's really worth it though and folks like you and Marsha help to put things in perspective.

Sincerely,

Mike

Prev pics ME age 31 recently divorced 2 kids.... Now single again; with freedom once more looking for adventure!!!! No sign of cancer or what was to come..... silly me...

2nd pic Me a few weeks back at age 70 with partner of 30yrs. Ex bladder cancer (8yrs ago) Radical Cystectomy with Ileal conduit plus lymph prostate removal.

Still looking for adventure, being silly, still no sign of ex-wife or kids.... I just keep on Trucking!!!

You lost this partner after 30 years - wow. I am here feeling sorry for myself after 28. My problem is he is still hanging around and I have to see him many times a day. Finances prevent me from walking away - at my age I can't just start over. This house is paid for.

I got married at 21 & divorced at 31..... Met new partner at 41....( pic ) still together but have no great desire to marry again !!!

Ugh, I don't like posting pics on the internet, and other than aging, not much has really changed for me. I think other people look to others to build themselves up to be as good as what they see in someone else. Somehow, no matter if we had every part of our body in the form we think we would like, I think we would find other things about ourselves that are less attractive. Unless you're self-centered. We all know what self-centered people are like, so I will not add to them.

Now, folks who don't care what others think when they see the way they present themselves, I feel sad for them. I think we should all at least comb our hair, dress in something other than pajamas, and wash up before we leave the house.

Self-respect, respect for others, and a good attitude.