Struggling with Stoma - Seeking Support and Understanding

I've had my stoma for 7 years now. In that time, my confidence has plummeted to non-existent. I have gained weight and hate everything about my body, especially my stoma. Prior to surgery, my partner of 22 years told me honestly that he wasn't sure if he could be intimate with me afterward. To this day, he has never seen it, with or without "the bag." To begin with, I wore "customized knickers." Now, intimacy just doesn't occur at all. I am ashamed and embarrassed by my body, and he is, for want of a better word, repulsed. Does anyone else feel their stoma has actually ruined their life, not saved it? I would have my stoma reversed tomorrow if it was an option, even despite all the risks. Is anyone else going through something similar?

First of all, I'm so sorry you are going through this and will be praying for you! I can say yes, I have experienced similar but not to such an extreme. I can say my stoma has saved my life; without it, I would be DEAD. I wouldn't be able to see another sunset, or the birth of my soon-to-arrive 12th grandchild (awesome pics in my profile). Although my wife of 30 years and I split, and the stoma sure played a part, I am able to move forward with the love of an awesome God, family, and friends, and support from people on this site. Praying for you!!🙏

Wow! Grandchild 12! Congratulations... I'm pleased life has worked out so well for you. Keep enjoying the sunsets and welcoming more grandkids. 😁

Cplumber's response will resonate with anyone here replying.

It's spot on..👍

Choose life. With a bag.... it is manageable...

Your feelings are human and normal, hon. 

If your partner really cared.. ask him to wear an appliance for a day.

Fudge him if he says no way. 

 

You control your life, you make your choices. Sit back and be miserable or change your mindset, get off your ass and live to whatever level you choose… it's all on you and you alone. Change the way you think can change your life. You get up each morning and either start with… oh god, why me? OR, you get up each morning and start with… today is gonna be a great day, let's enjoy it. Your choice, your mindset.

How to Manage Emotions with LeeAnne Hayden | Hollister

I'm sorry your partner is treating you that way. It would make me question… does my partner really love me? Do I want this partner around any longer?

I found out I had rectal cancer after having two heart attacks. My husband, whom I spent my time with 24/7, was by my side every day until he passed on 12/19/2021. He didn't get to be there to go through my surgeries with me. I've done most of my adjusting through my children. I was in denial of having a permanent colostomy bag. If it weren't for my children, who knows what or where I would be. 

Before my diagnosis, I weighed 264 from 2019 to 2022. My weight went down to 195. And I know what it feels like to be loved and accepted. All I am going to say is… had I been re-attached, I could be wearing diapers and shitting myself or have a bag and live life to the fullest. From time to time, I do have a private pity party where my emotions are uncontrollable, but it's rare now. Time you start loving yourself and live life.

This group of people is awesome (once in a while there is that one person you might want to block). Everything happens for a reason. God has a plan for each and everyone in life. Hugs.

Your partner should support you... no matter what. Living with an ostomy is hard enough. But a partner that does not support you is cruel. People who don't have an ostomy have no idea how we feel. He doesn't want to be intimate? Why not? What? He might touch the bag? Doesn't matter if you're 100 pounds or 200, there are plenty of ways to have sex without him stressing you out about your ostomy.

Self-esteem is exactly that... it comes from you. Not others, not a reluctant partner. Maybe some counseling would help.

Do not let him continue to bring you down.

Hello Gnomeo.
I am sorry to hear your account of your husband's response to your stoma as it must make you feel dreadful.
I am writing a series of rhymes at the moment about DIY and the reasons why I have been so keen on it over many years.
Basically the morals/messages and conclusions of my contemplations have been not too dissimilar to Alex's reply (although I would not have expressed it in the same way). 
 I have long-since felt that other human beings (in the main) cannot be relied upon for support in times of need. Therefore the concept of doing things for yourself comes into sharp focus.

This attitude and mantra has served me well over the years in its many forms, which is why I wish to document it in rhyme at this time.
As and when I get to the rhymes relating to stomas, I will eventually post them on here
In the meantime, it's worthwhile you being aware that you are not the only one who has felt let-down by other people in this regard and in many other aspects of life.
I also have written on the juxtaposed concepts of 'kind & dink' (dink being the mirror-image of kind).  Too many humans (I believe) are inherently and instinctively unkind. They don't seem to be able or want to change in this regard, so (I feel) it is up to each individual to decide whether or not to let 'their' attitudes and behaviour negatively affect our own.
It takes time, patience and practice to be 'independent' of others, but it can be well worth it in terms of our quality of life.
I tend to view 'unkindness' as a form of 'bullying', which helps me to place these people in a category where I will not let their behaviour negatively affect my own. Indeed! where appropriate, I will expose their attitudes and behaviour as being unacceptable (to me at least).
Best wishes

Bill

I have had my stoma for 5 years. I've never hidden it away from anyone and have always been open and honest. In January, I had my reversal that didn't go to plan, so now I have my ileostomy for good. This wasn't the plan, but it's what I'm left with.

At times, I have lost my self-esteem with regards to being intimate with someone and thinking who would want to be with me in that way, but in reality, we shouldn't be so worried.
I think we have to realize that some people will never get past the bag, others are worried about hurting you or don't understand how things work, but the vast majority won't care about it because it's you as a person they want to be with.

It's hard to build your self-esteem and confidence, but that really is the key to success.

I've built mine from naturism, which I know really isn't for everyone, but it amazes me how many people have their own hang-ups that they barely even notice yours.

Good luck. I hope you find your own way forward. x

 

 

Just wanted to add a tidbit from my daily ostomy life.

Yesterday I'm talking with a couple of human resource ladies... young ladies, in my cubicle. It's quiet where I'm at. Right after I say "Good morning," my stoma lets out a loud, long blast of gas.

I just patted my ostomy bulge and said, "Quiet, you." Then continued my meeting with them. Am I embarrassed? NO. This is real life. I control my self-esteem, not the approval of others.

You need to get to this place. The harshest critic of us... is ourselves.

It makes me sad to think you have lived feeling this way for seven years. You don't say the reason you ended up with an ostomy, but it's a good bet that you had little to no other options, and perhaps, like me, it actually saved your life. Having an unsupportive partner is not something that anyone should have to go through, but it's a reality sometimes. Maybe you need to look at whether continuing this relationship is the right thing for you. I have been lucky to have a very loving and supportive partner, and honestly, if he hadn't been, I don't think we would still be together. Only you can decide what the rest of your life will look like. Your ostomy does not define you. If your weight gain makes you unhappy, maybe look at why it occurred. Your ostomy should have nothing to do with it, but being depressed and suffering from low self-esteem definitely could. Losing weight is not easy, but doing so might help increase your feelings of self-worth. Don't let your husband determine how you feel about yourself. You are NOT repulsive!! I'm glad you found this site, as there are so many of us here who can relate to what you are going through, and hopefully we can help to uplift you. When I first got my ostomy, I was repulsed by it, just like you. I didn't even want to look at it, let alone have to deal with it. I've come to love my little stoma, yes, love. It's given me life I would not have had, and made my life so much better than before. You can get there too, but only if you take the steps yourself. Welcome, good luck, and stay in touch.

Terry

Sounds to me that he is the one with the problem. The word shallow comes to mind. I don't like this for you. Things have a way of working out... when you least expect them to. And remember, it is always darkest before the dawn. You keep keeping on and being the awesome person that you have tucked away and forgotten was there. Do something that makes you feel good. I started doing skin care on myself every night and morning... working towards that "glass skin" lol (Amazon has all kinds of good stuff - COSRX products are what I've been getting) and it is actually fun and relaxing, makes me feel good and it's working! Paint your nails. Whatever makes you feel good. But whatever you do, don't you dare allow someone to take away your spark! Now... YOU GOT THIS. Tight hugs!!!

Hello again,

Please keep us informed, we're here to help.

We have "been there." Intestinal disease or injury. Surgery. The shock of seeing our ostomy for the first time. The bewilderment of "how the heck do I deal with this?"

Then... the worry. "What will my partner think?" Can I be intimate again without stress?

And for those of us who are single... Dating. To tell or not to tell, and when.

Damn hard stuff to tackle. Especially with a partner who is being a superficial ass.

We're here to listen. And we "get it."

G-Day Gnomeo,  A good looking lady like you should have no problem finding a guy that will love you for who you are and admire you for surviving 7 years for whatever reason you had to have an Ileostomy. Controlling insensitive pricks are not worth you feeling bad about yourself so go find Mr Right.   Regards IGGIE

Dear Gnomeo... so...

He told you before the surgery that he was not sure he would be able to be intimate with you after the surgery...

Seems he had a big mental block ready and set well before he actually had a chance to even try and see what you actually looked like.

I am 6 months in, I also had a hysterectomy that put me into menopause immediately, so hormones all doing funny things, a vagina that is not exactly long enough to play much ball games and my own insecurity...

 

We waited a while, with my partner, before even trying it...

He was scared to hurt me or simply that I would not like/enjoy it anymore...

I felt less than sexy with a scar still rigid and a bag in the way (I have a urostomy and my bags end exactly on top of my pubis).

I found wraps and tried them... I empty everything just before going to bed, in case we get in the mood, wear my wraps so that nothing moves around too much and... if the magic happens, I have nothing dangling and he doesn't even notice.

It can be managed in a way to keep everybody from seeing bags, if it makes them sensitive... but nothing will work if you guys don't even want to try... which seems to me to be your case.

 

You have gone so low as to think of yourself as horrible, which you are not... go spruce yourself up and love yourself a bit more! You owe it to yourself!

 

As for him... he didn't even try, did he? He decided well before that you would be less of a woman and undesirable...

If you missed "just sex" and all the rest went well, I would suggest you enjoy what you have if it makes you happy...

But what you have is unhealthy and toxic and depressing you lower each day...

I know the idea of being alone after so long wrenches your soul... but often the old saying: better alone than in bad company... is actually true...

 

Also, what would you lose?

You already have no sex, no support, no tenderness... so making space might actually invite some of it into your life again :-)

Spot on, Terry!

As others have said on site - time to adjust - yes - but, at the end of the day, we need to feel not only happy to be alive but set goals, love ourselves, and know that we are more than ostomy. Yes, it takes time, but there are many tricks and self-help things to boost one's appearance and confidence.

 

;-)

 

 

Gnomeo,

 

I don't know whether you update on appliances and keep an eye out for changes and what is available.

For many years, I used the Nordic companies for the supply of my bags - various including small little cap ones for intimacy.

In more recent times, I have chosen to use Salts - a UK supplier - for one reason: their Comfort B bags are silky, come in black, white, and a beige tone, and are far more non-medical in appearance than other appliances on the market. One can still match sexy underwear in white or black and not feel that the bag is a blot on one's side. Just saying, one does not need to feel we are 'stuck' with a "medical appliance" as a permanent detractor from our body image!

 

I am by no means a vain person, but I like to not only look good but feel good. A silky toning kinda helps enormously to improve and 'discard' the image that the plastic 'skin' tone used to impose.

 

Then, of course, so much is down to not only how we present ourselves to the world but how we please ourselves - the us being our so many complicated elements of what makes us unique.

 

Think on, Hon, and maybe take stock, and just maybe find a new friend who may support you to change the way you view yourself. Then, and only then, may you reach for the sky. Don't hide away in tears and shame. It's just not helpful and not good for you, for your friends, and least of all for anyone who really loves you!

 

Take care, and be the you you would like to be!

 

'Beauty begins in the mind. Let your mind explore and lead you to some place of fun, peace, joy, and put the work in to be the best you that you can be for yourself.

 

You may be surprised not only at what is possible. Those who think they 'can't' generally end up not being where they desire, but those who think maybe, yes, definitely maybe, think there is a chance. Yes, I can. Think maybe it's working. Yes, yes, I know I can. Well, hell, WTF, I'm doing it!

 

Too many days, too many months, a year, then these drag on.

 

Do something!

 

I know it's easy to say this stuff, but I know, only too well, from my most recent months, that there is only one person who can really help one, and that person is oneself. No matter how loving or supportive, or not, folk are, when it comes down to it, we make our own reality.

 

Think on.

 

Hug

 

Good luck

 

Jayne

 

Please forgive the bluntness. Sometimes we all need a little push, and then we can maybe get ourselves unstuck.