Life and Loss - My Journey Post-Urostomy

Let's start by saying that I don't have, never had, and never will have a body part that is worth my life. Given the choice of "We remove this or you die of cancer," that's not even the beginning of a question for me or for my husband.

That said...when I had my urostomy a couple months ago (and it's taken about this long to be able to assess the damage), to save my life the surgeon also removed my uterus and, because of where in the bladder the tumor was, a substantial part of my vagina. Not to put too fine a point on it, I'm a 10-year-old girl again.

Last week when I visited my gynecologist and, well, it could have gone better. There are things we are going to try, I'm willing to try pretty much anything, but she didn't seem overwhelmed with optimism. And if these measures (topical HRT, dilators) DO work, it'll be months at best.

I don't have it bad in my life at all, really. A husband who isn't going anywhere, a very aggressive form of bladder cancer that was caught and fully removed at a very early stage. But I'm not kidding, this is a serious loss for me. I handle my stress by joking when I can and ahead of the urostomy, I quipped, "Hey, I'll still be a woman AND I'll be able to write my name in the snow." Now it doesn't feel that way anymore. This isn't about my interest in sex, or my husband's desire for it. Not really. It's about a body blow to my self-esteem, my self-image, and grieving a loss no matter how necessary it was.

I've always heard that when you can't think of any more to say, it's time to shut up. This seems like a good time for that.

Life will at times deal us the bad cards and it is our ability to deal with that that gives us our chance at life. It is a very tough existence and at times we require inner strength to find our way.

Kat, your path has been very difficult and I sit here and admire you for your strength. You are a very tough and lovely person.

Ken.

Being a self-proclaimed sex maniac where a minimum of three times a week was not enough to being impotent is a very big step and one I have still not come to grips with fully.

I still have the outside equipment but unlike being a 10-year-old boy, I am more like a 100-year-old. It does nothing now but just sit there and be annoying.

I have found that there are other ways where satisfaction of a degree can be achieved by both parties, it is just a matter of learning that what was is no and may never be again.

I don't want to try to understand the finer points of your limitations, but just because part of you will not work properly has not shut down the rest of your body. Don't get me wrong in any way, I am not suggesting anything in particular just that there are other options to what you once considered was making love.

I am in no way happy with my new experiences but like you, the remove the bladder or die was not even a question, so, regret all I like, we need to make the best of what is left. And like everyone else, it is not just you or me that is affected by the change, but also our partners.

God bless,
Bob

This is my comment.
It is a good comment.

Word play .... (for mmsh and anyone who likes word play)

First, I agree with your comments. Vaginas are really nice things to have. But not necessary. Vaginal sex is only one part of sexual possibilities.

Second - while I understand your comment (you can have sex by yourself, but not intimacy) - that can be debatable. And ... yes, intimacy (all kinds) with another person is highly desirable.

I am most intimate with myself. That allows deeper degrees of intimacy with others. Just a bit of semantics - I realize. A little word play. Intimacy is one of those strange words that can mean so many different things.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Kat65,

You have already overwhelmed me with your strength, attitude, focus, perspective, and your 'Self'. Just know that when you need a listening ear, this is one place you can find one.

Be gentle with yourself and with whatever you are going through each moment.

Carol

This is my comment.
It is a good comment.

MMSH has a point, Kat, but what's true for the goose is also true for the gander. Consider this bit of British humor which addresses gender equity:
https://www.youtube.com/watch?v=nGRPFUYUUdQ

MMSH,

We are not far apart. I get you. The hunt .... fishing .... are rarely (or only partly) about the 'hunt (kill)' or the 'fish' for many of us. Much of it is about relationship .... with fellow hunters, fishermen, lake, dog, birds, deer, forest, atmosphere ... so forth. I wilderness camp - weeks at a time - for intimacy with the environment, spirit, and me.

I agree, the physical act of sex is a small part. Good - really good ... but not all there is. I had to get a little 'tongue in cheek' with the subject. Penis and vagina are nice to have but not necessary. Fun things to play with. There are always alternative skills and techniques for really good 'sex'.

I taught psychology (including human sexuality) for 15 years - sex therapist 13 years before that. I always had my students determine what intimacy and 'sex' meant to them - their own definition not from the textbook or other source. The responses were always amazing and full of insight.

Intimacy always involved relationship..... then .... a relationship with the self is preliminary to intimacy with another person. "You have to know yourself to give yourself to another person" [according to them]. Key words were trust, honesty, openness, sharing, support and sex was almost an afterthought. Also, ... other similar terms. Every semester they amazed me. When I would ask if they were that way with themselves (trust, honest, open) - that threw them into a loop of thinking.

So - WORD GAMES with the possibility of life skills - relationship stuff. Sexual intercourse is fun and feels good but is a relatively small part of 'sex'. I never taught a class I didn't learn from.

The 60's is about the right time - but the statement holds true for me. If I can't give those things to me, I got nothing to give anyone else.

I am enjoying this conversation but it probably isn't helpful to the topic. Maybe we can chat again. I enjoy debate and sharing ideas.

dawneagle.

Thanks all for your input. I'm feeling much less alone in this now. And DawnEagle and MMSH? Please feel free to keep it going if you want. It is helpful and enjoyable to me to read your interactions.

I hope you understand the spirit that this is sent in. I don't mean to be whiny or minimize your situation. I just want to share what happened to my marriage; so maybe you'll appreciate your man even more!! After 25 years of marriage and 1 child, my ex said that he didn't see me like a woman anymore, after my ileo, the fight of my life to survive, due to a heart attack, stroke, comas, seizures, etc... to sum it up, a 4-month stay in 2 hospitals. He left me for a woman 20 years younger than me! He was a jerk through the divorce process and he's still a jerk. God bless you!

Kat65,

Speaking of penis.... well, we almost were ....

I hope this makes you smile....

From MSNBC online news - about Leaning Tower of Pisa...
"Vendors in Pisa caught selling erotic souvenirs such as underwear with the famous tower posed as a penis .... can face fines of up to $700".

Dawneagle

I'm sorry to hear of your struggles. I've been offsite for a while, due to an antisocial reclusive misanthropic kick that I may or may not be coming out of.

I am misanthropic from time to time. More am than not. That may be due to my egocentrism. I might also be considered skeptical or churlish.

I seem to like me better than most others that presume to be part of this race that tiny beings living on this rock seem to be involved in. Darn, there goes that tongue twisting around in my cheek again.

Or that may be due to not having an 'other' in my life that is as intimate and permanent as I would choose ... someone like Kat65 perhaps has. Someone that can conceive of intimacy and staying power beyond penis and vagina. I still have a tiny piece of me that longs for Walton's Mountain - while not believing in it. Something like Cinderella.

So Sinfulson, what is it about this particular post that brings you back onsite? Perhaps you can be brought back to humanity - or not. Always a choice.

Kat65 - when you get tired of this banter, say so. I can easily turn it off. People seldom get my humor anyway. Sinfulsot triggered my warped thinking. My hope is for some entertainment value while you cope with serious but workable situations. My classes came up with 96 terms for penis but only 52 for vagina. Sex - screw ... seemed to have unlimited terms to connote desires, plans, wishes, hopes ......

Dawneagle

This is my comment.
It is a good comment.

Mmsh

Close enough - give to get love is good. Dawneagle

If I may, I think what she is driving at is the opposite of that, MMSH. More like, if you have no love to give, you need to start with being able to love yourself first in order to be able to share that with another. Then, with luck, you get it back. Put another way, if you don't give a s#!t about yourself, no one else will, either. Has to start with what you have inside you to offer.

Plus, an analogy about killing is fairly distasteful.

Kat65
My respect and honoring of you grows minute by minute. I like you.

Thank you, it is now even more clear. I will delete my replies and refrain from any more posts in this thread.
Good luck with it, and my warmest regards to all.

It is more the author that drew me to respond. I just happened to log in and perhaps shared too much as to why? Maybe a little but not really getting into it or something like that...

Well, I do enjoy being a bad influence.

mmsh,

I am sorry you took off your replies. I have done that in the past and wish I hadn't. I always enjoy your posts and they always make me think. I thought we were having some light banter - if it was no longer 'light' for you - my apologies. Light meaning 'not too heavy' and light meaning bring light to a subject to see more clearly.

Words are powerful tools and I try to remain cognizant of that fact and use them carefully. Sometimes, I fail in my caution.

I hope we can connect again.

dawneagle

MMSH,

Even though a bell can't be unrung, or a spoken or written word be erased from having been said, or written. Of course they can be repealed by you. They are your words. But I do agree with Dawneagle in that, your words are always so wise, humorous, and informative it would be a waste to remove them from these threads. I respect your words and really like to read them.

Keep on posting, I guarantee, everyone is interested.

Hi Kat,

I read your post with both sadness and empathy. I was sick as a child (12) and had my ileostomy at 15. But I still had to deal with the diseased rectum which wasn't removed, in hopes of it healing eventually. It didn't. The doctors, parents, and I gave it 4 years, and then I demanded final surgery.
Unfortunately, some things went wrong, and I ended up with bladder damage (no feeling). I was also still a virgin, and was dating my soon-to-be fiance. He wanted us to wait, but I wanted to find out if I "worked" before we married. We were together 3 or 4 times, and I was very upset because I felt nothing.

Although it was the 60's, I didn't talk to my doctors, for fear of them talking to my parents. But I did talk to a therapist, who advised me to "give it time". I really didn't believe him, but I went ahead with the marriage, and eventually did have a healthy sex life with my new husband. I'll never know if what I began to "feel" was the same as what I would have felt if I hadn't had surgery... but it was good and satisfying. And I had no comparison, so I learned to accept what is.

That was more than 40 years ago, and I've been divorced for more than 15 years. In that time, I've had a few relationships with men who had "ED" issues, but at this stage of life, we learned to cope, and "do other things". Exploring new opportunities gives you another "new start", that may or may not be as good as the old, but it's better than the alternatives.

Recently some girlfriends (all 55+) and I went to an adult bookstore to look for some "TOYS". At first, we were somewhat inhibited, but then we got into it and had a lot of fun "shopping". There are gadgets out there that can really be helpful. Unfortunately, I bought one that didn't work, and when I went back, another salesperson was there, and I again had to get over the inhibitions. He couldn't figure out what I'd be doing with the product I bought... since I didn't have a partner. I'm not going to go into all the details here (sorry people)... but I did tease him that I didn't think I'd have to "explain" the mechanics (of what I bought) to him.

Give yourself time to mourn the loss, but then find some good substitute "activities" that you and your partner enjoy. That's what it's all about.

Best wishes to you.

Marsha

Are we missing the point here, people??

Take care, Kat.

Immarsh, I am sort of inserting a new topic with a request.

We have lots of helpful ideas (and such) for each other and I am so very grateful. I am also curious.

You have been at this for a long time. With the 'bag' problems we all complain about, I think about what it might have been like 40 years ago. So my request - perhaps you could do a blog or a new topic and share with us what all has changed with appliances, meds, anything else you want to share. I am 68 and have a great aunt that had surgery - still don't know the details - about the same time. I have wondered what options were available to her. I have to believe we have made some progress ... have we?

Have you already done that and I missed it? Where?

My thanks to you ......
I see your posts and always read and appreciate them.

Dawneagle,

I thought you were out in the wilderness. I guess you can get internet out there. Is anything sacred anymore?

X_

Hi, glad at least that you are on the road to recovery. I think you just need to not rush things, you will feel a lot better as the months pass by. Be proud of your ostomy, you could be dead without it. As they say, time is a great healer. Wish you all the best for the future. My urostomy gives me little trouble and I talk about it to anyone. Mike.

Kat and Godswoman, my heart goes out to you both. I am a 70-year-old woman. I had my bladder removed for cancer six years ago. I was lucky. We caught it in time that the cancer had gotten into the inside musculature of the bladder wall, but not outside. So I had "only" the bladder removed and did not have the need for any chemo or radiation treatments. I did have an after-surgery complication that sucked at the time, but even then I was able, most of the time, to keep my sense of humor. I am single (twice divorced) and have a wonderful gentleman in my life. He has stuck with me through everything and is a constant joy in my life. I agree with Dawneagle, the first and most important thing is to love yourself... as you are. I'm put in mind of Whitney Houston's recording of "The Greatest Love of All." The second most important thing for me was to make the most of every day. I am just so grateful to be alive. I volunteer at the local senior center. Among other things, I head up a workshop there for writing our memoirs. I live in a small central NH town. I belong to a regional writers' club and am a member of an art group made up mostly of seniors. Some are professionals, some semi-professionals, and most, like me, are amateurs doing it for the love of it now that we no longer have kids to raise and jobs to fulfill. If you can find it within yourself to know your own worth, your own value to the world around you and to the people you love and who love you, life can become better than it has ever been before. Positive energy is being sent from me to all of you that you can come to that place.

I kind of tend to agree with Kenny on this one, (Now, there is a paradox, isn't it? Kenny and Me agreeing on something?) Kidding Kenny!

But I lost track of the original subject started by Kat. You ever notice how someone responds to your malady and the first thing you know a whole dissertation takes place?

Having said that, I will defer to those who know more about the subject matter than I.

However, MMSH, I wish you would reconsider your deletion decision.

Miss your comments.