Logo for MeetAnOstoMate
Support | Friendship | Relationships
26,431 members

What's the right thing to say or do?

Thu Dec 01, 2016 7:14 pm
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

We’re often critical of how folks react when they know we’re ostomates.  I’m not sure that’s fair.

Why should we have any expectations as to what folks might say to us relative to our condition?  Chances are we just made them a heck of a lot more uncomfortable than we are.  We have or had a disease, our bodies were changed and only we know how it affects us.  We might have pain, curtailed activities, a crappy diet, expensive medications among so many other uncomfortable things affecting us because of of new bodies.  All that and probably anger.  And we wouldn’t dare let anyone know we felt sorry for ourselves because that would imply we’re weak.  Hey, we got this!  We need to deal with it in the very best way we can.  Our friends, acquaintances and family don’t have a clue.  If we put every ounce of energy into explaining exactly how we felt, that would only be valid for that moment in time.  We might feel so different in a day or an hour from now.  I try to avoid sharing my health status with anyone except on a “need to know” basis.  I feel like it’s unfair to others.  It puts them on the spot, causes most of them discomfort.  The folks we encounter regularly aren’t trained to handle the news we offer them and they’re really not responsible for making us feel better regardless of how much they might want to.  We feel like crap, tell someone we have an ostomy and they might feel like we just dumped a bucket of crap on them.  I believe most people are good and certainly wouldn’t deliberately say something to make us feel worse; probably the opposite.  Most folks would love to say something to make us feel better if only to show us how bright they are.  I guess we just need to be forgiving.  We need to understand that most are doing the best they can just like we are. 

It is what it is.  Mostly it sucks and if I can accuse someone of being a jerk because they didn’t say the right thing to me then I need to take the responsibility for educating them somehow.  We know that’s not possible because, all too often, there are no words and sometimes even the most loving actions can’t cut it.  I guess, sometimes, feeling sorry about the whole mess is the only thing that makes sense.

Respectfully,

Mike

Fri Dec 02, 2016 1:33 am

Hello Mike.

What a great post! Well thought through and logically presented.

Personally,  I have no problems with talking to people about my conditions (which number more than just a stoma) 'IF' they ask.  However, I try to put across the positive aspects of the condition rather than the negatives as this helps to educate people into understanding that it is a bummer but we can live productively and positively with it by doing aoutr Personal Best (PB) at all times.  I am an avid watcher of the paralympics where people put their disabilities 'on show' for all to see and learn something about. They are proud of their achievements and I am proud of every one of them.

We all know that there are other people with disabilities who could not bring themselves to achieve their PB's in the public eye, but I for one, am pleased that there are those who are willing to do so both for themselves and for the benefit of the observers who can see that they are coping and achieving as best they can.

Best wishes

Bill  

MeetAnOstoMate - 26,431 members
Fri Dec 02, 2016 10:47 pm

Thanks, Bill for your usual kind words.  I must confess, however, a similar topic was posted on another site and I kinda borrowed it.  Sharing with you guys is my intention and for that, I hope I'm forgiven.

Your thoughts about such great performances by folks who struggle to do stuff that most of us take for granted are truly enlightening.  When I first got my new body part I did some research on-line to learn how other folks handled their ostomies.  I was reading how guys and girls of all ages were handling their situations so well.  I was learning from them.  Then, the administratore of the site sent me a note advising me that the folks I was learning from all suffered spinal cord injuries and were disabled in other ways.  I was speechless (wordless), embarrassed, ashamed and humiliated by my own ignorance.  My problems paled relative to theirs.  Their attitudes shamed mine.  So, from being a complete jerk, I decided I better get my priorities in order, learn from these heroic people, try to function and eventually reach my PB then share with all those kind, generous, wise, caring folks like you on this site.  I'm still learning and still trying.

Respectfully,

Mike

Sat Dec 03, 2016 1:35 am

Hello Mike.

I do not think it matters where you get your ideas to post as long as they are helpful in some way, so there is no need to hope you are forgiven - there is nothing to forgive you for!.

I'm so glad you mentioned the stalwarts of the stoma world who have so many other things to cope with besides the stoma. In my  opinion, they all deserve medals for their achievementsin the face of adversity.

I used the example of paralypians because they are in the public eye and people can more easily relate to what they 'see'.  There are so many more people achieving their PB's every day, quietly, out of sight and mostly out of mind of the general public. They are an inspiration to us all!

Best wishes

Bill

Sat Dec 03, 2016 2:34 am

Wow, Mike,

I actually am working through writing a cancer blog piece that deals with exactly what you're writing about.  (on a different site).

Personally, I don't think we need to feel sorry for ourselves, I think we need to accept ourselves. Think about it. . . are we sad because we're. . .us? NO WAY!  Here we are! We're not the regular norm, we're the ostomates norm. Not a bad thing to be. And we're all here for you.

Yes, lots of people are uncomfortable with the ostomy thing.  I have always been a little fearless, so when I had my colostomy, which, I guess maybe medically or socially or nationally I was encouraged or geared to keeping quiet about, I instead got pretty vocal about it.  Hah! 

Being open about all of my medical stuff, even the colostomy,  actually made my girl friends feel like they had a more intimate relationship with me.  But female. vs. male., who knows? 

Good people WANT to hear about our crap/difficulties. In certain faiths, action is all of it.

None of us, ever, say the 'right' things

But your writing on this site is good for all of us, it makes us all think in a way that enriches all of us. . .

Sat Dec 03, 2016 8:55 pm

Hello All!

I thought I would add my two cents to this discussion since posters are talking about PB (...sorry).  I agree that lots of people are uncomfortable discussing the ostomy thing, but why?  The world is filled with billions of people who use prosthetic devices to replace or correct a body part or function; and no one would argue against the value of these prostheses, including ostomy bags.  The issue here is that people are just not comfortable talking about the particular bodily function involved, not the remedy.  I don't remember back in my pre-ostomy days having the habit of chatting at the Bridge table about my elegant bowel movements.  If I did, I would later remind myself that such a custom was more honored in the breach. In short, there's a time and a place for everything, and discretion is key.  I will not bring up the subject of my waste disposal unless it is with kindred spirits such as folks here at Ostomates or unless it serves a valuable purpose without creating discomfort.  If my golfing buddies ask me what's in my bag, I will tell them politely they don't want to know.  That's how I feel and that's my comfort level. Great posts Mike, Bill and NotDeadYet!

Still, while my attitude about these things maintains the status quo, I cannot help but respect those of us who want to take ostomies out of the dark ages and shed some light on our bond with the rest of humanity.  No one should ever be ashamed to wear a bag.  We have hundreds of heros to celebrate.

   PB

Tue Dec 06, 2016 8:59 pm

Once again, PB, you offer a more panoramic perspective in helping us understand.  Your comfort level might be identical to mine or, maybe not.  We’re complex creatures and what works for one might be very uncomfortable for most others.  I think there’s a National Ostomy Day celebration and that’s way outside my comfort zone.  In fact I feel like that’s an attempt to impose our condition to be accepted, if not applauded, by the non-ostomates.   I thought I knew a lot about helping and caring for others, saying the right things at the right times, but was rudely awakened by folks like you, Bill and NDY.  It’s way more complicated.  Sometimes silence IS golden and at other times it might be construed as ignorant.  

I’m just happy we have each other to share this stuff with.  I would never say “I know exactly how you feel” because, even with identical symptoms, we might feel very differently.  But we can have a much better idea having been there.  

Now let’s feel sorry for all those well meaning folks who gave us stupid comments when they learned about our poop bags.  They’ve never been there.

With gratitude,

Mike

Wed Dec 07, 2016 10:07 pm

Being a professional income tax preparer, I have known several hundred customers for over 10 years. As they would come into my office each year, they watched our kids grow up from 9 and 11 to now graduating college (for my older). It has always been common for them to ask how the family is doing and discuss theirs. In many ways they have been more friends than just customers. They were there for me when I had my cancer, and my first surgery, and my chemo and radiation, and my peritonitis, hospitalization, second surgery (ostomy) and my recurrence and rehospitalization. I have never had any issues discussing any of this with most of them, as it has unfolded right before their eyes (so to speak), and most all of them have been way more thankful that I have recovered and am doing well than grossed out about the poop bags. In fact, we had a visiting preparer from another office when we were really busy one year, who was very depressed one day. Her best friend had just been diagnosed with colon cancer, and they were recommending surgery and ostomy, and her friend was terrified and didn't know what to do. I was able to give her lots of first-hand information to pass on to her friend. She was amazed that I was doing so well and she had no idea I even had the ostomy. I think it helped both her and her friend a lot.

Wed Dec 07, 2016 10:31 pm

In my opinion, there is no right way.......really. We can plan what we think is the right response but will it be? There are so many variables in life, we just do the best we can and our best not to make a situation worse.

I must agree with PB, no one wants to talk about anyones output. It is something we are not taught to do in a social enviornment. It isn't even something we talk the most about here.

Wed Dec 07, 2016 11:15 pm

Hi Mike and all.  I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year.  I can tell you that when I came to this website six years ago I was truly impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become.  I also came to appreciate that having an ostomy is not the same thing as having a disease.  Pardon my pun now, but ostomies and cancer don't belong in the same bag.  One is a solution, the other is a problem.  Celebrating National Ostomy Day is also well outside my comfort zone.  That's like celebrating National Wheel Chair Day.  Come on!

I think there is a need for improved public awareness of ostomies, but I am not sure how that's best done.  There remains some social stigma attached to our situation, and it's acutely felt among our young.  We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else.  I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family.  People will know how to react when they see how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.

On a personal note, my son has been suffering from ulcerative colitis for years just like I did.  I am very concerned because people with UC are at a higher risk for colon cancer.  Years ago my GI told me to get annual colonoscopies to be on the safe side.  I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate.  Since then I have always conveyed a positive attitude to my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day.  Father and Son moments!

Someone once wrote that our children are the letters we write to the future.

   PB

Tue Dec 27, 2016 1:53 am

I just tell people I have an ostomy/ileostomy and if they're uncomfortable with it, that's their problem. I really don't care. They're adults...deal with it. 

Fri Dec 30, 2016 6:57 pm

I think I learned a lot from the responses from so many bright folks who had good and bad, mostly bad, experiences with usually well meaning friends and family.  I think I learned why this happens.  The main reason is we’re only human.  That means each of us is about one in 7.4 billion.  Each of us is different from every other human on the planet.  In addition, what we think and feel today might be different from what we thought and felt yesterday.  Even when one offers consolation to another who experienced the exact, same symptoms, treatments, prognosis and results, their emotional acceptance or endurance might have been quite different.  A compassionate comment offered to one might be received as a stupid platitude by another.  Then I wonder what we expect from others.  We share our stuff with folks who were never trained to fill us with glee after we tell our story.  Is anyone capable?  Sometimes I think it’s more difficult for the person we dump our stuff on.  I wonder if it’s not more difficult for caregivers who really love us and feel such empathy and helplessness.  I guess I just keep coming back to “It is what it is” and I’ll deal with it the best I can.  That might not be acceptable to all others but I’m open to any suggestions.  I feel sorry for all of us sometimes; I feel sorry for me sometimes.  Then I feel so proud of all of us in how we help each other and tolerate the silliness, if not stupidity, we endure from some real jerks.  I think we need to be the best we can be and we’ll actually find some real satisfaction, with ourselves and all those around us who try to do the right things.  We don’t need the others.

Wishing you all the best for 2017,

Mike

* Please, do not post contact information, personal information or advertising.
All times are GMT - 5 Hours