Rebuilding Self-Esteem Post-Ostomy Surgery

I have had an ostomy for a year now due to cancer, and soon it will be made permanent as I am having a pelvic exenteration. I just don't know how to feel good about it. I feel like I will never feel attractive ever again.

Hi.

I have had my ostomy since January after a rupture and emergency surgery. I have been struggling ever since, so much so that I thought about taking my own life (which I am not proud of and feel ashamed, but I got that low and have been under the crisis team for two weeks now, so dealing with it). I joined this site to get some support and advice, and the other members have been great.

It is hard to look at yourself and think anyone could find you attractive. I have been with my partner for 10 years, but we haven't slept together since the operation. I tend to sleep in the spare room, not just because of the way I look and the 2-foot scar from my waist up to my chest, but I suffer from PTSD after the near-death experience, so I have nightmares.

I wanted to tell you that because it isn't how other people see you, it's how you see yourself. I am not a great one to give advice, but don't be so hard on yourself. Attractiveness isn't just the way you look; it's who you are as a person.

Stay safe.

Paul.

Hi Paul,

Thanks so much for sharing your story. Your honesty helps me a lot. I too have had those dark times. I have stage 4 cancer (diagnosed in 2018) which has relapsed and sometimes wish my doctors hadn't bothered saving me at all. I'm now due to have pelvic exenteration surgery at the age of 35. I'm finding it all really tough.  

Hi 

The dark place is all-consuming and the same as you. Sometimes I wish the ambulance would have taken 10 minutes longer and I would have died on my living room floor.

But it didn't, and I am still here fighting every day. You are in a horrible place right now, and it is bound to feel overwhelming, but you need to keep fighting. When I came out of the hospital 4 weeks later, I had a tattoo done on my back of the grim reaper, and it says "Death refuses no man, but the will to survive will always outweigh the ability to die." I look at this every day, and it gives me the strength to get through one day at a time. You have a bigger battle than I do, but you can get through it. There are always people out there willing to help in any way they can. 

Paul 

Hi Kitty.  

The two words we need to deal with are “feel” and “attractive”. If your use of “attractive“ suggests pretty or good looking or the like, think about someone who is physically beautiful but feels like crap because of who they are rather than how they appear. Paul makes a lot of sense and gave you good advice. Contrary to his opinion I think he’s a great one to give advice.

You might believe that “beauty is only skin deep”. I don’t. I believe that saying is but a “skin deep saying”. We should look for the beauty inside folks and inside ourselves. If we really try we’ll find it and, if necessary, make the changes to magnify it.

Thanks for sharing your feelings,
Mike

Kitty8282,

I'm sure many ostomates have asked themselves that same question. When I had my surgery, I was 56 years old.
Waking up as an ostomate (colostomy) wasn't a pleasant feeling or sight at all. At that time, I had been married 31 years. I felt that I would never be intimate again.
Initially, I named my stoma after an enemy. I even looked at my stoma as something nasty. However, I had to change my mindset. After all, that stoma was part of me. I had to learn to embrace me. If I didn't love me, who would? Is it always easy? Not at all! I hope in time you'll feel different. It didn't define me as a person, and it won't define you.

Good luck,

Angelicamarie

Hi Kitty,

There aren't many of us on this site who haven't been in that same dark state of mind that you are describing. We are constantly inundated with messages about what makes a person attractive, and as a result, we are constantly comparing ourselves to an impossible standard. It's hard to escape that. Body image issues are exacerbated when disfiguring surgery takes place - we wonder if we will ever be acceptable again. I guess it requires some rethinking about what attractive means. If you believe that attractiveness only pertains to what is on the outside, that is going to be a difficult journey. The older we get (and hopefully more mature), we realize how fleeting physical beauty is. That genuine beauty shines from within and creates an aura of acceptance and comfort within one's own skin. And why do you think that an ostomy or exteneration surgery makes you less worthy of feeling attractive? You have every right to decide how you want to dress, feel, live your life, and in whose company you wish to be. You are still the same person you were before your surgery. Never let anyone tell you otherwise.

I don't mean to minimize the emotional struggles that this surgery can bring. There is no question that this is more than many people have to deal with, and you are awfully young to be facing this. If you feel that you need help with this, and there is no shame in needing help with something that feels so daunting, consider reaching out to a professional counselor. A counselor can help you put what you are dealing with into some kind of perspective that makes sense for you and help you find coping methods that can improve your mood. I also have an ostomy as a result of cancer, and I struggled with my diagnosis and surgery. When I had to admit to myself that I could no longer cope without help (and I was a professional counselor), I found a counselor who helped me climb out of that pit. That was 5 years ago. I look back at that time and I am so thankful that I got help - it made a huge difference.

This site is full of helpful people who have been through similar experiences to yours, as you have already seen in the replies to your post. We are here anytime you need us, Kitty. And we care about how you're doing, so please stay connected with us.

Laurie

I would say I used to be attractive but now feel disgusting because I have a stoma. nbsp
I feel like I'm a good person. But it doesn't stop me feeling disgusting nbsp

I got my stoma at 35 years old. I also lost my chance of having my own children and will soon have a pelvic exenteration as spinal nerve removal. It's hard to think about life after this xx nbsp.

Thank you, Laurie. Your words mean a lot.  
8 days until my pelvic exenteration and part of me hopes I don't make it through the surgery. I think living with the aftermath is a much harder option. Thank you for caring xx  

Kitty, yes, living with the aftermath is hard. And I understand why you feel the way you do right now, but please bear in mind that you don't have to feel that way forever. My cancer diagnosis and ostomy surgery put me in a deep pit of despair that I thought I would never get out of. But you know what? I just don't feel that way anymore. I won't lie and say it was easy - it wasn't. Some days were rougher than others. But I let myself wallow for a while (which, sometimes you need to do), and then I decided that I didn't want to live the rest of my life that way. So I made a pact with myself that I would do whatever was necessary to feel good about being alive again. Step one was finding a compatible counselor and engaging in the work of grieving the loss of the way things used to be. Step two was redefining who I am and what I want from life in whatever time I have left on this earth. Step 3 was realizing that I didn't have to go it alone. I am lucky to have family and friends who love me and will be there to support me, whatever I need. They don't care that my body looks different than it used to. You know why? Because it just doesn't matter. I could have 7 ostomies hanging off my body - it doesn't change who I am fundamentally. I have, little by little, over the past 5 years, come to a place of understanding that. If I could wish anything for you, Kitty, it would be that you could be in that place too. I think, deep down, you want that too. I think that's why you reached out to us on this site. I'm so glad you did. Lean on us, Kitty, when you need to. We'll prop you up when you need us to, until you don't need it anymore.

Laurie

Hi Kitty.

Don't be hard on yourself, almost everyone here has a story like yours of varying degrees.

Just keep moving forward, you will improve and start to see things differently as you progress.

I have had very dark moments myself as many others here have, make no mistake, but it does get better.

In 12 months' time, you will probably have a completely different outlook.

Don't give up, you have lots of things to experience and lots of places to go yet.

I hope your next chapter is as good as it can possibly be for you.

Take care.

Axl

Kitty, I will be turning 80 in a few months, and as the rest of us, our looks change over the years. The people who love us don't say, "Hey, your looks have changed, so I don't see you as the same person." It is kind of the same thing; your looks may change in different ways. But you are still the same person. It is the beauty inside that does not change; that is what people who love you see. You just hang in there and know that you are still lovable. Feel free to vent here anytime you need to and believe it will get better. Please keep us updated. Best wishes and stay safe.

Just a few humble lines from a faraway land to add to the many words of advice and wisdom offered. Chucking it all in has occurred to many diagnosed with that dreaded disease, what prevents it are the terrible consequences of it for those near and dear to you. Dark thoughts, despair, and despondency are common amongst cancer patients but the ones who manage to overcome these falsehoods are also the ones who turn out to beat that scourge. So, surely, you will be attractive again, just buck up and fight back. The prayers and good wishes of many here go with you.

Thank you all for taking the time to message me. I am so grateful. It helps me feel less alone. Thank you and sending you so much love xx

Simple answer: YES, it's still only a year and facing more surgery soon, so won't be making you feel too good having that on your mind. Just need to build your confidence back and some Bruno Mars therapy. Turn up the volume and get "Just the Way You Are" on. Look in that mirror and sing along and believe every word. This time next year, you will be on the beach in your bikini! One life, live it. Never let a stoma rule your life... Look at the little bag, the size of your hand. You're not going to let that rule your life... Time to start making that bucket list for all the things you're going to do when you feel well.

Fully understand your present state of mind, Kitty.

Of course, wanting to feel "attractive" is important. It's about self-esteem... how we move forward... how we live. It's no sin to want to feel good about yourself.

I wish I had some profound words of wisdom for you, but I haven't. However, I would like to share this story.

The other day, I was lining up to pay for fuel at my local servo (obeying the 1.5m social distance rule, of course) and a man in a wheelchair was in front of me. Nothing out of the ordinary. I thought he must have been buying a newspaper or something, but he was actually paying for fuel too. I assumed he must have had someone with him in his car, so after I paid, I purposely watched him wheel himself back to his vehicle. He was alone.

He opened the driver's side door and somehow slid himself into the driver's seat. He then folded up his chair and connected a strap attached to the back of the chair to a mechanical device that hydraulically lifted the chair and placed it on the roof rack of his car. He then somehow secured the chair to the roof rack, all the while sitting in the driver's seat.

I was gobsmacked. I have never seen anything like it. As he started his car, I felt like going across and asking him about the "chair lifter," but I didn't want to embarrass him or myself. Just being a witness to this extraordinary event was well worth arriving a little bit late for work. This man was obviously not going to let a wheelchair stop him from living his life.

The point being, I think, is that at some stage in our lives, most of us will be dealt a curveball... some more than others, but it is, I believe, a test of our own mettle as to how we react to these "setbacks." Suffice to say, at the time, it's very hard to see a way through.

Chin up, Kitty. You are not alone.

On this site, plenty of the "Altered Plumbing Society" have been where you are now.

Good luck.

V.J.

P.S. Feel free to keep posting regarding your progress. We are here to support you, even if it's only in words.

Hey Kitty, you got lots of good suggestionshere and I'm certain all that wisdom came from compassionate hearts.  I just need to add a thought that might be controversial but my experience was pretty OK with it.  I know we're told how important it is to be tough; be strong.  I found that to be too difficult at times and it was OK to feel sorry for myself.  Maybe just a little and not for long but it was OK for me.  

That was a long, long time ago and I'm glad I allowed myself that little bit of reality.  Just my thoughts.

Respectfully,

Mike

Hey Kitty, I just want to add that there are lots of different style bag covers you can use. It helps that you don't have to look at the see-through bag all the time. Best wishes and stay safe

Hi Kitty, just checking how you are. I sent you a private message, but it has not been read (no pressure, just checking in with you). The message said, "I don't sleep much," and I know how lonely the dark place can be. I spend a fair amount of time there myself. If you just need a chat or to vent some steam, I'm here. I probably don't have the answers you need, but like so many are doing for me, maybe I can help you find them.  

Take care.  

Paul.  

You will; you just don't know it yet!

Sometimes we make the mistake (or others do it for us) of thinking we are defined by our job title, the salary we are on, the house that we live in, the color of our skin, our age.

We are not.

You are not defined by your colostomy. I am not by my urostomy.

We are still the same person. Yep - we may feel as if we are drowning at times. There are challenges; I am not about to sugar cake the situation but........

Life is never fair. There will be challenges and there will be folks out there who will see you...........and nothing else.

You take care of you

C

Before my ostomy surgery, of which I was told I had to have for my survival, I was quite the social butterfly and always on the go. Still coping after 2 years and sometimes feel like a freak show due to the removal of rectum and installation of ostomy. Living in a small beach community, I've been very private. I'm getting better with time, knowing I'm blessed to be alive, and I'm very grateful to all my wonderful doctors for saving my life. I'm looking forward to the day that I hopefully find someone like me that will bring out the old me - sexy, adventurous, and can love someone the way I want to be loved......

Hi Kitty.....Hun, you were rocking the looks and life before this journey....nothing has changed, you just do it now with a bag attached..... What is attractive or beauty? Looks or what you are on the inside out.....

I truly think all us ostomates have had the same feelings you describe. I certainly did. My revolution came when my ostomy nurse told me she has had an ileostomy since she was 19. She's now in her late 30's...all I could think after was how dare I sit and have a pity party for myself when this lady at 19, just getting into life, sex, school, etc., had to deal with it way before me. And I know there are many mates that have had it even younger....

Now don't get me wrong, I am certainly no beauty queen, but I am blessed to have an incredible husband, my boys, my sister, my grandkids, and some awesome ostomates on here...Always count your blessings, my friend, there are so many.....

You are you, just with a bag attached...wounds heal, scars show bravery, you are here, you are beautiful....