Accepting Ostomy: Seeking Advice & Coping Strategies

Fellow members, I would like to get your thoughts and advice on how you accepted your ostomy. I have had my urostomy for 5 years and I can't get past it. I have lost a lot because of it, and I'm sure I am not the only one that has been through hell. I have talked to a few people and have been offered meds, but I don't want to take more meds. Their advice was just to say you're lucky to be alive, but I don't feel that way. So I guess what I'm asking is how you all deal with it. Thank you.

I don't have your exact ostomy problem. I have an ileostomy right now, mine is slated as temporary and I hope it stays that way. I will be getting chemo and maybe radiation though too in about a month or so. So I am scared that one of the treatments might make it turn into permanent. I just deal with it as it was, have cancer or have it done with the resection and other treatments later. I am also younger by a little bit at 43. But I also think I have a good support system, so that definitely helps in my real life. Maybe you could try to find some new friends in that support group in your area to help you be stronger.

Thank you, I wish you the best for you. I think you're right, maybe I'm just weak.

Hello looking58.

Thank you for posing this question, as I am sure that many (including me) have pondered this subject many times.
Having a stoma can present problems that are complex and multi-faceted. However, they may be viewed as falling into two main facets PHYSICAL (including the medicines) and PSYCHOLOGICAL (including the shock, trauma, post traumatic effects and emotionally coming to terms with it)

We all have our own ways of coping and managing (or not) things in life that don't go exactly to plan and no one way is necessarily better that another.
My own approach to these sorts of problems is to try to clarify what is going on physically, psychologically, and emotionally, so that I know more precisely what it is I am dealing with. In pursuit of this clarity, I will often find answers to the questions I previously posed myself.
The technique I mostly use to create clarity is to compile rhyming verse, because I find that this is an effective way to condense complex issues into a few verses, which I can then re-read to remind myself of my previous cogitation when the same subject comes up again.

If you have a look at my rhyming blogs over the years (available on my profile), you will see that I have taken each problem as it arose and translated it into rhyme. The fact that I am still doing this (and still posting on here) is a clear indication that I have never completely come to terms with having a stoma. However, I feel that when there is nothing more I can do about the physical situation, I can at least do my best to ‘manage’ the psychological and emotional side of things so that it does not have too much of a detrimental effect upon my wellbeing.

I am greatly inspired by those people like disabled athletes, and others who push themselves to their physical and mental limits, show that their disabilities will not define them or their future lives.
I have had a stoma for many years and whilst I still think I would prefer to not have one. This feeling is contingent upon my being physically and mentally ‘well’ if I reverted back to what is euphemistically called ‘normal’.
I do hope that you are able to find your own ways of effectively ‘managing’ your situation and you feelings about your stoma.

Best wishes
Bill

Looking58...

Although we have differing situations as I'm a girl and an ileostomy type, I can totally relate to your feelings. My sudden physical change was due to 19 years of severe infectious colitis and during that time I just wanted to die of embarrassment, pain, rejections of sorts. Yet I would hold on to thoughts of those depending on me and wanting to experience so much going forward. Then suddenly my stoma arrived, yet another mountain to climb. Before I was able to cope with it, my husband of 30 years died, COVID hit. I had more physical and emotional crap to get over. I was getting new meds from doctors to help block my depression, although I wouldn't admit I was, but realized the drugs would only alter my brain and decided to open my anxieties upon friends and family. Once they had learned the full scope of my thoughts, I felt much better. I joined all support groups and allowed myself to just let it out. Now, a year later, I have reverted back to being me, yes thankful to be alive as so many are gone. You took a big step opening up on here, we are all in different stages of acceptance and I'm sure you will also. I have also found that some changes are a good thing as there is much out there for all of us alive today. I hope you realize that a stoma doesn't change your inner self, it's just part of you, not who we are inside.
Stay well my friend and keep reaching out to all that care about you...we on here do care.

Ritz

Hi Looking,

I'm not well versed in urostomies, so I had to look it up. If I'm understanding it right, you no longer have a bladder or reservoir to hold urine.........so it is passed through your abdomen into an ostomy bag like we have. So instead of having a shitbag........you got a peebag. Ok.....got it. So here's the deal.........when you decide to accept it as part of you depends on too many things to list here. Some probably never do. I don't "accept" or "like" having my bag, but I'm getting used to it and focusing less and less on it every day. I've had mine for about 6 1/2 years now........and I've just recently stopped feeling for it when I first get up in the morning, as I always wanted to make sure it wasn't a bad dream. It's not. And it's not going anywhere, so at some point you have to bite the bullet and agree to coexist with it. Once you do that, you then start to think about ways to lessen its impact on your life. Usually small things that wouldn't sound like much, but added up you realize one day a lot of your life IS back to normal, despite that oversized sandwich bag taped to your belly. Maybe you just stop caring about what people think and say "screw them", or maybe you've slowly developed a wardrobe that does a good job of hiding what you have and gives you a bit of confidence when out and about. Maybe it's adding new friends to your circle that understand. They're all pieces to the puzzle. What's important is not to focus on what you can't do, but what you can. And go do it! Life's not going to wait around for you to get your act together, and you don't want to wake up one morning and realize life has passed you by because you weren't paying attention or feeling sorry for yourself. Life's about improvising........ask any Marine. You do what you have to do to make it work. Sure, much easier said than done, and most will have no idea of the effort on your part that it's going to take. But if you're expecting sympathy in today's world.....you're seriously kidding yourself.

So back to your question.......when did we accept our situation? It's sort of irrelevant, in that each of us is different and you really don't want to pick anyone else's situation as a yardstick to measure your own. That just puts too much or too little pressure on yourself. You're clearing your own path through the woods here, and I think that the only thing you can take away from others in your position is the fact that it can be done. And you'll get there. Once you realize that, you won't be so hard on yourself or your situation. And if you're ever really questioning it all........just head down to your nearest Children's Hospital and walk around a bit. If that doesn't clear your head and get you back on track........nothing will.

You'll get there Looking.........we all will. Hang in there Bro. The Calvary in this case ISN'T coming.........but you don't need them. You got this!!

Regards,

Bob

Remember when you were born? Of course you don’t. But there came a time, shortly after that, when your consciousness kicked into gear and you started seeing and experiencing things for the very first time. You set about learning about this new world that you were in, and you did it because you had no choice. You were alive, thus you had to learn how to live. You did pretty good, too. Look how old you are. Many folks never make it near your age. With an ostomy, we’re each re-born. We have a whole new reality to accustom ourselves to and, as before, we have no choice. When you have no choice, it does no good to belly-ache about it; you just plug forward and – it’s amazing! – pretty soon you become used to this reality, and you realize that it really isn’t substantively different than the old reality. You comb your hair (if you’re lucky enough to still have some… I don’t), you brush your teeth, you put your pants on one leg at a time, and every three to five days, you change your ostomy appliance. It becomes second nature, a part of who you are. All those things that you enjoy are still there for you. Spring is still a wondrous marvel. Beer still goes down with a satisfying glug. I had twenty-one years with my first reality. I’ve had fifty-seven since my ostomy. Life goes on, my friend. Hang in there.

Your on the right track admitting you have a problem is half the battle won.

And I saw your comment saying "maybe I'm just weak." No, you're not!!! So many live in denial, keep protesting there. So over it and ready to move on. And every time I mention I have an ostomy to a woman/man I was talking to, I never hear from them again. That's the classic sign they're not over it. So no, you're not weak for admitting you have a problem. Quite the opposite, it takes guts.

Being honest, there's no real answer to how we deal or accept having an ostomy. We're all different. It's just time that helps us. Some are lucky and accept it sooner than others. Meds could help in the short term if you have depression and counseling along with it.

Panther, I agree. It takes guts reaching out and asking for support. Fortunately, I have never encountered someone walking away because I'm a bag lady now. But I understand where Looking58 is coming from. He may think he's weak, but in between the lines, I think he is very strong... I hope so and moves on to a better understanding that we all need to accept ourselves as the same we were and better ourselves to assist others... Now Looking58 and Joe are two more that I'm deeply concerned about.

Ritz

I don't think I could add much to the many wise words offered here. Bob's little speech being the most practical advice. Initially, I had a very hard time with this thing and was sort of slipping away before I got hold of myself. Friends and family are a big help. In my case, a favorite sister and a cousin were pillars of strength. I reached a point where I just sat around and didn't talk to anybody unless I had a drink first, then the words would flow. What do they put in that thing? One must never be negative and play the 'why me' game. It is tough to be optimistic in tough times but optimistic people bounce back faster. Best wishes and may you find your own road to recovery soon.

Looking,

There's so much experience and wisdom in these words, thoughts, and emotions of other ostomates replying to your question on self-acceptance after an ostomy procedure.

I'm unable to offer much more, except to add that you're not "weak" - you're human. We all are, having our good days and bad, and none of us able to go through this alone.

You're so courageous for reaching out via the MAO site, Looking. Stay in touch with us. We each have our stories of survival, Looking. I'm not trying to be dramatic; although I've been an ostomate for 3 1/2 years, and an MAO member since last September, there are enough survival stories on this site to create books and "movies of the week". : )

But, Looking, the most important story is yours, and it continues to be written each and every day, with each decision and choice you make.

Also, contact your closest UOAA support group. Meetings are being held virtually, and there's a lot to be said for the support and understanding of individuals who have endured - and survived - their circumstances. I believe you already know this. : )

Lily17

P.S. -

Bill has written some amazing poetry. I've written a little over the years, but take a lot of inspiration from music lyrics - another form of poetry:

"Do What You Want, Be What You Are"

by Daryl Hall & John Oates (and shortened a bit by me)

Do what you want, but be what you are
There ain't no right or wrong way
Just a play from the heart
It ain't a sign of weakness, to give yourself away
Because the strong give up and move on
While the weak, the weak give up and stay

So do what you want to do
Be what you are ...

You can change,

But you can't conceal
What's deep inside you
It's your game, it's your deal

So do what you want to do

But be what you are ...

You can do what you want to

You can do, you can be
You could do, you could be
You can...

Looking,

All said is spot on! There are no sissies on this site.
It does not matter what kind of ostomy you have or if you are a caregiver for someone that does, you are a superhero! There are many ways to come out on the other side of surgery and everyone here fought to come out alive and healing, and that includes you too! Our healing process differs but we all have the same thoughts, the same feelings, and we each push on in our own time and way! You must find yours, so start living and do it!
Take care my friend and listen to the great advice given on this feed! You are a hero for reaching out.
Puppyluv

Thank you all for your thoughts. They are very much appreciated.

About 20 years ago, I blew out a hip playing my beloved tennis. Then 12 years ago, I was diagnosed with prostate cancer. Then 2 years ago, I was diagnosed with bladder cancer. I had 16 weeks of chemo followed by a cystectomy or whatever the removal of the bladder is called. My wife developed full-blown bipolar disorder, and our 25-year marriage ended. I moved to The Villages in FL. I had a difficult time accepting the new me. Before Covid, I would go to a bar/restaurant, anywhere live rock and roll was (and here that's like 20 places seven nights a week.)

Women would flirt, ask me to dance, and if I had the confidence to tell my situation ("Sweetheart, there's only one thing I can't do for you"), I'd probably be in a relationship. My son said I needed to find a retired ostomy nurse. LOL

I'm educated, financially secure, tall and slim, and funny as hell. I'm just hung up about asking someone out to dinner. So if you get a stoma (permanent), you would be strange if you didn't have issues. I hope time will ease the reluctance.

The most important thing for me was my 20+ year husband who was behind me 100%. The second most important thing was a job to get up and go to on a regular basis (and an employer who was most accommodating to my needs). And a family who kept urging me to get out and do more things (take long walks, start riding my bike again, etc.) and never gave me the option of sitting around feeling sorry for myself. An active life (even one where you aren't as active as you used to be) keeps you engaged to the point you actually don't mind it as much. I won't say you forget it - you never totally forget it - but you slowly realize you can live with it, and it is less important. As long as you can keep going forward, even a little bit, then your life keeps improving a little bit at a time. And you look back and realize it's not as bad as it was. It's not even a point where you suddenly say, now it's OK. It's just that every day it gets a little more OK, and you don't even realize it until you look back.

Keep engaging, work if you can, or find hobbies you can immerse yourself in, keep reaching out to people even just as friends. Don't lock yourself away - there are many people whose lives will be enriched with you in it. And you'll find a bunch of them right here!

OP - I feel the same way about mine - and I have 2.....

You are not weak, you are human. Humans aren't brought up to poop into a bag attached to a weird thing called a stoma that was built by a surgeon. And humans aren't brought up to accept the equipment required to take care of this new reality, which occasionally involves getting their own poop on their hands or even on their toilet seats or clothes. This is truly unnatural.

My colostomy was just built January 3 and so I'm early in this process. I'm finding ways to accept it by meditating and making mental pictures in my head of what life was like when pooping the traditional way. I see in my head me being unable to leave the house before noon due to nonstop pooping, me pooping my ski pants on a chairlift skiing, having to have my husband pull onto the median of a highway on the way to an airport multiple times so I could poop in plain sight of traffic, and then getting on the flight and pooping my pants strapped in on lift off..... I have a million images to work with.

Do you? If so, take quiet time to bring those images forth. For me it makes this bag of poo a Godsend. I can take a 6 am flight! I can go out to breakfast. Doesn't mean I don't hate the bag and the maintenance it requires. Just means it will improve my quality of life.

I would love it if you'd try this and come back and share what you see in your head of days gone by and if those memories help you move forward some.

Sorry to ask this blunt but sincere questions: given what you described about your situation, 

1. Do you suffer from incessant, intractable pain anywhere?
2. Can you carry out normal daily functions or are you homebound and bedridden?
3. Do you ever feel like you would be better off dead than living like this?

Again, my sincere apologies for asking these questions, but, your answers may help me.

Thanks so much for understanding.