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What's inside?

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Sat Jan 24, 2015 5:12 pm

We often hear or read stuff about people’s appearance while wearing an ostomy appliance. We certainly emphasize physical beauty today and, to some, being an ostomate eliminates dating possibilities and, sometimes, professional advancement. Sometimes we get comforting suggestions from caring folks telling us things like “Nobody can see it”, “it doesn’t change who you are”, “Nobody cares” and a common reply to those ostomates looking for love relationships, “beauty is only skin deep” and “It’s what’s inside that counts”.

What is inside and how does it attract or repel other folks, especially those looking for a partner? I think most people are mostly good most of the time. Some are special in that they care more and give more. Some are more compassionate, understanding, empathetic and forgiving. Some will try to feel others’ hurt to share the pain and some will try to walk that mile on others’ moccasins. When we look at these special people we don’t immediately see their internal beauty but I think they do and, to them, that’s more important than others seeing it. I’ll bet many of us are, or can be, special like them. What we’ve gone through certainly changed us to some extent and how the people around us treated us probably taught us some things about love, true friends, real family, and maybe not so true and real folks. We probably needed to say, “please and thank you” and “I’m sorry” more often and, hopefully, as sick as we might have been, we pushed ourselves to express our love and appreciation. A very bright man wrote, “The saying that beauty is only skin deep is but a skin deep saying”. That’s something to think about.

I believe there are a lot of really beautiful people here who deserve to be loved in every way. What’s most important IMHO is that they know who and what they are. The peace and comfort from one’s own goodness is priceless. Recognition from others is just a bonus.

Anyway, that’s my opinion but how would I know?

Respectfully,

Mike

 

Sun Jan 25, 2015 3:32 pm

 

 

Well Mr Desktop, I have read your piece several times and I still can't get what you are trying to say???

What ARE you trying to say??

Are you saying there is not a stigma associated with being an ostomate?

Or are you saying there is, but in the long run, it doesn't matter?

Please explain?

VJ.

P.S. In my humble opinion, deep down, we all know the truth.

 

Sun Jan 25, 2015 4:22 pm

Hey VJ, thanks for your thoughts. Unfortunately, you force me to think which is way more difficult than just writing stuff. I guess what I'm trying to say is there's more to what makes a person beautiful than just their physical appearance. It's just a word and may not be the one defining our total perception of another human or even ourselves. It's easy to assign labels like smart, nice dresser, good short iron player, etc. but to conclude that someone is a beautiful person takes more scrutiny. We use words often without really meaning them. We say we “hate” something that we just dislike, we “love” something that we actually like a little and more things are “unbelievable” than understandable. Just words. Beyond that, I just think there's a big difference between, “Wow, she or he's beautiful” and “She or he is a beautiful person”. I hope it's not just semantics; that's certainly not my intention.

Is there a stigma? Who determines that?

IMHO, I continue searching for the truth with concerns, at times, that if I find it I'll be unable to accept it.

I respectfully appreciate your thoughts,

Mike



Last edited by iMacG5 on Mon Jan 26, 2015 12:16 pm; edited 1 time in total
Sun Jan 25, 2015 5:00 pm

I agree with your first paragraph Apple Mike, but I need to give this 'topic' some more consideration.

It is a public holiday in our Great Southern Land today.......Australia Day! or as the indigenous folk call it, Invasion Day. Today commemorates the arrival of the first Europeans.

I will reply after I have collected my thoughts.

Maybe others might want to join the discussion?

VJ

 

Mon Jan 26, 2015 2:07 am

Well, Mr. Mike, for a man that does not like to think, it seems you've been thinking quite a bit. :)  

I agree, outer beauty shouldn't be important at all.  But when we are young, that outer beauty is what first attracts. Depending on what we are looking for, if the inner- self is not as appealing we move on. Unfortunately,in this day and age vanity and narcissism seem to be the status quo in society. Some are only looking for arm-candy. To those people it doesn't matter what the inner self is made of. Those people are usually superficial and believe they have the perfect life.  This reminds me of an article I read some time ago about a young, rich, beautiful (in some eyes and definitely in her own) woman who hit and severely injured a man on his bicycle.  Her biggest concern was not hitting the man and possibly killing him, she was upset "he" put a dent in her car and she lost her license for about six months!  She should of been thrown in jail! In reading her responses to anything, she truly believed she did nothing wrong and that it was unfair they took her license. It boggled my mind. I am sure that woman attracted many men if she never opened her mouth. But her personality made her the ugliest person I have ever run across in my years.  

Along this line the internet can play an important role in that you can actually get to know someone before "seeing" them in some cases. I know, it also leaves things wide open for scam artists and other culprits. But the idea is appealing to be able to hide behind a screen until you are sure you are not going to be spurned for your looks or some outward deformity. I have known a few people who have fallen in love with someone that wasn't even close to their image of who they thought they wanted in a mate that met online- before knowing what each looked like. It would be ideal if the world worked this way but it doesn't. 

I can't even say this beauty thing or stigma thing only affects the young. But it affects them the most.  There are people my age and older that still want someone that is HOT. Just look at the dating sites. Most people start out by saying they are young in mind or heart or are active and jog 3489714356 miles a day. Blah, blah, blah. And when did kayaking become so popular?!   I have been on a few sites and I probably looked through 100 profiles before finding a man that peeked my interest. It was usually the one that claimed his happiest form of exercise was walking to the back yard to get to his hammock on a nice day. One thing that really puzzles me is why there are so many men well into their 50's and 60's who have never been married in their entire life? That\'s a whole different topic, I'm sure, but it just popped in my head because I have seen it so much; even on this site.  

If you are not attractive on the oustide it's more challenging getting people to want to know you. If you have health problems, especially something like a bag sticking of your belly, or a brace going up your back, or plastic legs, or funny eyes or a speech problem (even if your mind is at genius level) it makes it even more challenging. The 60's hippies THOUGHT they had all the answers and perhaps were heading in the right direction, but something went drastically wrong in the 80's and 90's. (Personally I believe it was disco.) 

My husband was one of the most intelligent people I have ever known. Brain surgery left him severely disabled - speech, walking, one of his eyes looked outward and didn't move. But his mind was still the same. In the earlier years after his surgery he was still able to function pretty well on his own and insisted on doing so.  Our daughter had a function at school that we needed to pay for. One night we all hopped in the car and drove to school. The PTA moms were in charge of collecting the money. My husband wanted to go in and take care of it. So I dropped him off at the front door and parked waiting for him. He went in proud he could do this for his daughter. Like a normal dad. He came out with a very defeated look. When I asked him what happened he said after he paid one of the mom's she looked at the woman next to her and said "Isn't it wonderful what they are letting retards do now-a-days?" He said they giggled at each other. These were grown women with children and husbands. I was so angry, but he asked me not to go in and say anything, so I didn't. (But you can believe I said a little prayer to the powers that be to curse them at some point in their lives!) How were these mother's teaching their children to accept abnormalities in others? Society needs to change and I don't see that happening, ever. 

We all deserve to be loved and cared for and understood. All we need to do is find one person that makes us feel this way and all else wouldn't seem as difficult. Some of us have been fortunate enough to find that person already and she/he may still be in our life. But it's hard when you don't have looks, money or health that the majority are looking for. You see and hear of it in elementary schools. The fat kid, the ugly kid, the kid with the ragged clothes or speech impediments, slow minds. Life is a struggle for them, always. Not because of the trees, or the grass or the air they breath, but because people they have to deal with in their lives. People don't change much. My story about the PTA mom's above also proves this point.

Yep, there are people who are perfectly content and at peace with who they are and the world around them. That's the person I've tried to become but have always fallen short. I can't imagine what it would be like to be totally at peace with yourself and content with life and truly, honestly be blissful every waking moment. But even Ghandi had a wife and children. Life is a lot easier to handle when you have someone to handle it with. 

Society needs to change a lot.  I doubt, very much, I will ever see that. The majority are superficial. The song "Little Boxes" crept into my mind while writing this. :) 

 

 

 

 

Mon Jan 26, 2015 12:48 pm

P.S. Sorry, Mike, if I took away from your thoughts and posting. I didn't mean to. You made me think, so I wrote it down. (Which is what I believe you are trying to get people to do- my opinion on what you were trying to accomplish.) 

Your thoughts on words are true and thought-provoking. Even the word "beauty" isn't quite used correctly in most cases. The definition(s) basically claim the fact that beauty really is in the eye of the beholder. Some of us just haven't found our beholder yet. :)

How would you know?   Well, I'd say your years of experience, observation and thought make you a good source to listen to and consider.  Thank you. 

 

Hugs

Z

Mon Jan 26, 2015 4:25 pm

Hey VJ, I don't think the planet will be here long enough for me to collect my thoughts so I'll just wish you a Happy Australian Day and hope the Europeans contributed to your country's evolution as they did to the USA. I will, however, anxiously await your thoughts.

Zywie, you certainly collected a lot of thoughts and I thank you for sharing them. I think I was addressing how we use the word “beautiful” and what it means to different folks. You took it many steps further in describing some behaviors that many of us consider totally unacceptable. Times have changed immeasurably. Without incorporating or soliciting religion, there are some basic behaviors that identify a person as decent. Then there are behaviors like you mention that define a person as unattractive even if we don't see them. Hopefully we can recapture the qualities like respect, courtesy, understanding if possible, acceptance if not forgiveness, or just lending a hand. Those virtues are inside and, when practiced, can make one a beautiful person.

Thanks, also, for the song. I guess that's an example of “in the eye of the beholder”.

Oops! I see you sent another note.....I'll read it after I send this.

Respectfully,

Mike

Mon Jan 26, 2015 7:24 pm

Hi Everyone, This is a fabulous topic to discuss - beauty and all of its interpretations. My first thought about beauty is meeting someone for the first time and not thinking one way or the other about them. Then, over time, their growing friendship is like a blossoming rose. The goodness in one\'s soul, goes much deeper than the surface although the surface is what we do see initially- like an advertising billboard. Having a ostomy does present challenges at times. And, I still do not see ostomates once and a while gracing the Sports Illustrated swim suit front cover edition...but I ask why not? We are beautiful people too!  So what if we have battle wounds and need to where an appliance. It is our prosthetic. Our prosthetic is our life line to a rich existence. It is not perfect but it is better than it used to be. One day, very soon, I believe society will want to learn even more about bowel disease and life with an ostomy. Cancer, ALS and Parkinson diseases are discussed very openly today. Years ago, not as openly discussed. Famous people today go public with their health and personal life battles. What about coming forward and talking about life with an ostomy. My wish is that more famous \"living\" people come forward and take pride of ownership of their life with an ostomy. Share your experience so we learn how you made it through the first couple days, weeks, months post surgery. My wish is that a national fundraiser on television to raise awareness for bowel disease begins...maybe another ice bucket challenge or something more creative. How about a GI campaign with the tag line....I had it, beat it and am living a great life once again. Or, I have it, I am living with it and taking each day to the fullest. Or... I am not giving in or giving up just moving forward! Or… An Ostomy is not an end but a beginning.  What about simple TV commercials to raise awareness about the medical products we use.  Once the unknown becomes known, it is less frightening.  Yes, that day will come and it has on so many levels. I feel the momentum in all of these inspirational posts. These writings give me strength and determination. Going back to beauty....beauty is much more than a six letter word. It is the love, compassion and spirit of this group. Helping others, helping ourselves create a beautiful world. Thanks everyone for letting me share.  Have a nice evening. LH

Tue Jan 27, 2015 5:20 am

Have to apologise Mike Macintosh, I still haven't thought of a reply that is worth forwarding. No need for any 'anxiousness'. 

I will give the topic - if that's what this is - some more thought during the week and get back to you at the weekend.

Maybe other members would like to offer their thoughts on being an ostomate?

How do they 'view' themselves?

Deep, deep down, how do members see their life/physical appearance as an ostomate?

Feel free to write.

No-one is going to think any less of you for telling the truth. 

VJ.

P.S. Yes Mike, like America, the Europeans contributed greatly to what Australia is today, but also like America, the indigenous folk were treated very poorly.

PPS. I have an iMac too.

Tue Jan 27, 2015 5:59 pm

Hey Zywie, hard to believe I used the “beholder” reference before I read yours. We certainly seem to be on the same page. Thanks for your kind words.

And thank you LH for taking the time to share your thoughts. You had a lot to offer relative to being an ostomate and I'm sure there are many who share your views. As far as sharing outside “our” community, I think a lot of us feel a sense of security among other ostomates and prefer to remain secretive beyond our group. We're different; there's no question. I think VJ might be alluding to that and our feelings about ourselves. When I started this I wasn't thinking about our afflictions as something to flaunt or hide but now you offer more to think about.

VJ, There is no apology necessary and I can't tell you how happy your iMac makes me. When my company changed from Macs to PCs, I threatened to quit. I became the only employee with a functioning PC and Mac on my desk. Still didn't get a raise though.

I'm not sure we know how we “view” ourselves. Do we separate our physical appearance from our total being? Do we look at our appliance with disgust or appreciation for helping us be here? Do we identify ourselves by that thing or can we identify ourselves as a pretty neat person who has one of those things? Wow, this can get deep. Maybe it should. Maybe we should try to really know who we are, where we are and how we can be better for ourselves and others.

From what I have read on this forum there are lots or really neat folks who don't hesitate to take the time and effort to come to the aid of those in need. I don't know what they look like but I'm comfortable referring to them as “beautiful” people.

Thanks all. Please let's keep “talking” about this.

Sincerely,

Mike

Tue Jan 27, 2015 10:38 pm

Hello. I am so glad to read this post. I am the fiancé of one miserable angry man who has an ileostomy. We have been together for about 6 years and our teenage kids are now beginning to leave the nest and or are reaching that point within a year. My relationship has been riddled w confusing life events and I am saddened beyond words at how my sweetys failed surgery led to his permanent ileostomy. What is most sad for me is not his ileostomy but his very negative self image and self loathing. We were a vibrant happy new couple looking forward to the future w our kids and each other. But through the years he falls deeper into the black abys that no light seems to ever penetrate.  Sometimes he has had suicidal thoughts and even death wishes. Over the past year he has grown angry w me and berates me and makes me feel very self conscious about me being 6 yrs his senior.  I definitely think he agonizes over the fact that no woman, outside of myself could ever love him or that he would even have a chance with a woman if she knew he had an ileostomy. I have very mixed feelings over this. I want to yell at him and question "what am I, nothing"?  Do I look to old for you, are you not attracted to me or is it him?  Whatever it is, it hurts like shit. I loved him before his surgery and I never quit. That bag means nothing to me. I love him as is and honestly there are other personal biases or dislikes that would turn me off completely but his appliance does not happen to be one of them. What I would like to bestow to everyone here is it is completely dumb for everyone to believe that you would not find people out there who would accept or love you.  Don't believe your own thoughts And fears. If there is one, there is more.  I think one important factor might be what type of person you seek out.  As for me, all I can do is pray. I don't want to start my life as a single all over again. Keep your head up everyone. You all have been through intense agony, don't heap more on yourselves. ❤️

Wed Jan 28, 2015 4:39 am

iMike, iMike, iMike……what a brilliant piece of writing!

I was going to wait till the weekend to reply but couldn’t. I totally agree. Let’s keep the discussion going.

I have stolen a paragraph from your post and also a paragraph from Zywie’s post.


iMacG5 wrote…….I’m not sure we know how we “view” ourselves. Do we separate our physical appearance from our total being? Do we look at our appliance with disgust or appreciation for helping us be here? Do we identify ourselves by that thing or can we identify ourselves as a pretty neat person who has one of those things?

Wow, this can get deep. Maybe it should. Maybe we should try to really know who we are, where we are and how we can be better for ourselves and others.

Thanks all.

Please let’s keep “talking” about this.

Zywie wrote.….Yep, there are people who are perfectly content and at peace with who they are and the world around them. That's the person I've tried to become but have always fallen short. I can't imagine what it would be like to be totally at peace with yourself and content with life and truly, honestly be blissful every waking moment. But even Ghandi had a wife and children. Life is a lot easier to handle when you have someone to handle it with.

There has been well over 400 visits to date to this topic….far more than any other topic. Will this trigger other ostomates to contribute to the discussion? Let’s hope so.

So the question still remains, deep, deep down, how do we REALLY see ourselves?

The floor is open.

VJ.

iMike, the reason I have an iMac is because I have been involved in the printing industry nearly all my life. We were always told Macintosh was the best. Funny, now I am a dumb arse truck driver.

Wed Jan 28, 2015 4:50 pm

To Dalai Momma:  Whaaatt??!!!  Sorry sweetie. I think this was suppose to uplift us but instead it made me want to tell you to run to the nearest exit and don't look back! That was my first thought anyway. But then I settled down and realized I should be telling you both to get some help with these problems. Professional mental help. Your statement about him agonizing over the fact that no woman, outside of yourself, could ever love him or that he would even have a chance with a woman if she knew he had an ileostomy - O...M...G.  Either you have an open relationship or neither of you know what a relationship is all about? YOU should be the only woman he should be agonizing over if he must agonize over a woman. I hated everything about this thing too, now I just try to ignore it. Still hate it, but it doesn't consume my thoughts like it use to. I'm about 1-1/2 years post-surgery. Ima girl with no one, all by my lonesome...I won't write what I would like to say to him...I will just try to send it to him telepathically. If this was a surgery he just had within the past 8 months I'd say be patient.  But it sounds like it's been many years and you had 6 before.  This man should be happy you are still trying to be by his side - not treating you the way he is. 

As for it being completely dumb for everyone to believe we can't find someone.  I don't know about dumb. But it's wasting emotions worrying about it. However, it is harder. No one can dispute that fact who has an ostomy. Not harder finding someone to have sex with; but harder finding someone to live the rest of our life with (if we aren't already lucky enough to have that person in our life).

I'm pretty sure you were trying to make us feel better. From what you wrote, (I am not good at reading between lines) you are being abused Dalai. He sounds like a spoiled little brat, on top of being upset about the changes he's had to go through. You don't need to suffer like that. No matter how much you love him and want to be there for him. 

I didn't check your age to see if you two may be 20 something's. But the fact you have teenagers ready to go out on their own makes me think you are both old enough that being too young could not be the excuse for the behavior. I actually have noticed the younger ostomates handle the medical and physical issues a lot better then most older ostomates. The younger ones main concern is how hard it is to find their life mate with these issues.

 

Lady Hope: You gave me a bit more to think about. Not sure I'm happy about that. :) 

VJ:  I'll tell you mine if you tell me yours. :)  Actually, I don't know what I think about myself right now. I'm kind of sitting on the fence about that. I know when I look at myself naked in the mirror I do not, in any way, shape or form, like the looks of this bag hanging off my belly.  But I don't like the looks of the extra tummy it's sitting on or a few other places I've seemed to accumulate more body mass because of this illness and surgery. So it's not just the bag I don't like looking at in the mirror. I do definitely look better in clothes than out of them. That's about as positive as I can get right now. Will contribute more about myself later, if I can figure it out. 

Mike:  I look at my appliance with disgust and wish they could come up with something much better. But I think I'm a pretty neat person with one of these disgusting things that can fix herself up to look fairly nice when I am in the mood to do so. :) 

I'm done for now. 

 

 

Tue Feb 03, 2015 5:20 pm

Hey guys, I think if Dalai Momma was talking to us rather than writing her thoughts, we might feel differently. I really hope so. My interpretation of what I read is one of them has PTSD and the other has zero self esteem. I hope I'm wrong and just not fully understanding. More importantly I hope those guys get their act or acts together or separated for both their goods.

Zywie, I concur with your advice. And you're probably one of many who really doesn't know what we think about ourselves right now.

VJ, you suggested that deep down, we all know the truth and later you ask how we REALLY see ourselves. I'm not sure I know the truth. I'm not sure of how I REALLY see myself. As for aesthetics, it's simple; I feel it would be uncomfortable if not offensive for others to see my appliance. When I was first DX'd with CR cancer I felt damaged or broken. After radiation, chemo, surgery, more chemo then more surgery and more surgery I think I feel repaired with a giant asterisk. I wouldn't choose to discuss all or even parts of this experience with anyone except my wife and you guys, of course.

LH, you profess a most healthy attitude to this whole thing and you should be our “Poster Child”. You suggest famous people come forward and share their ostomy experiences with us and I just don't think that's going to happen because it's all about POOPand we just don't like talking about POOP. I know we see commercials for meds to help with constipation, the big D, IBS and the like but we have bags of poop hanging from our bellies.

What you wrote in the last few sentences says so much to identify the “beauty” we're talking about. Thank YOU for sharing.

I think I screwed up posting this thing in the “Intimacy & Dating” section because that wasn't what I had in mind. I was just thinking about all the beauty demonstrated by folks going through their dilemmas, their caretakers, their sharing and trying to help others. Since you guys wrote all you did I need to go back to the “thinking” board and attempt to figure out what the heck I am thinking?

Napoleon Bonaparte had it in perspective: Conquer the world and keep that damn bag in place.

Respectfully,

Mike

Wed Feb 04, 2015 11:44 am

VJ, is there a connectiion between dumb arse and truck driver?  The thoughts you express suggest you are anything but dumb.  Now the truck driver part I can't evaluate.  Among Zywie, LadyHope, even Dalai Momma in a way and certainly, you, there's a real think tank here.  Maybe the dumb arse (ass in the USA) is me for not knowing what the heck I'm thinking about.

Drive safely VJ,

Mike

Fri Feb 06, 2015 3:57 am

Hello Mike,

So glad you have posted again. I see it as an epilogue and this will be my last post on this subject.

You have had hundreds and hundreds of viewers to your ‘blog’ but only a couple of replies. My invitation for members to write obviously fell on deaf ears.

Interestingly there wasn’t any “I am happy I’m an otomate” replies?

Is it just too hard to publicly comment on our situations? Don’t want to be seen as “glass half empty”.

“Society” does not like that. Maybe that’s a stigma in itself?

One can only admire someone like Zywie who has the intestinal fortitude to call it has she sees it. I salute you Zywie!

And thanks to you Mike, I rarely ‘post’ but your topic fired my thoughts.

Unfortunately it did not fire other member’s thoughts enough, to be brave.

VJ.

 

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