Redefining 'Broke' for Better Ostomy Care

I thought I wrote about this concept before but, well, my memory is broken. Anyway, we’ve heard that suggestion and some of us live by it. Being ostomates, we need to do things we never did before and, hopefully, we’ve learned to do them a quickly, easily and as effectively as possible. We need to define “broke”. Sometimes we might accept our methods because they’re “good enough”. They might just be borderline OK but we’re content with getting to that point. Maybe we struggled long enough and we’re just happy we’ve gotten this far. Take a break. Enjoy the progress and let’s reconsider down the road. Some folks tell us they go seven to ten days between changes, never had an accident and never had recognized any odor. Certainly, they have colostomies rather than an Iliostomy or urostomy. Some might advertise they change their appliance in three minutes. Wow! “Why can’t I do that” we might think. We’ll, maybe we can. Maybe we can at least improve our situations by getting more time between changes, having fewer accidents, eliminating odors and reducing the time spent changing the appliance. If we accept where we are in this venture because it ain’t broke but it’s still a pain in the butt, maybe we should redefine “broke”. I know I suffer from the compulsion to make everything the best it can be. That could annoy the crap out of lots of folks but I have difficulty accepting stuff that’s not as good as it could be. I rationalize by thinking if Cavemen and Cavewomen used the “ain’t broke” philosophy, we would still be living in caves.
Maybe I just have too much time on my hands.

Mike

I totally agree. You should have been an industrial engineer and helped perfect ostomy supplies. They could use improvement. More competition is also needed. After all, how much should a plastic bag really cost? Much less than what most of us are paying. Filters need a lot of work also. Convatec used to have contests where people could suggest improvements that they would explore. Don't know if they still do. A friend of mine who was a double ostomate in Sydney BC won twice. She shared your philosophy as well but is now deceased.

Thanks for your reply, Funnygirl.  I actually was an IE and I have made some adjustments to my own equipment that I've shared with you guys.  I don't remember anyone having good experiences with filters and I worry about all of us aging and losing our dexterity.  I use the E-Z Vents to burp after no success with filters.  

Your suggestion about user input to the manufacturers is great.  I learned something every time I've talked with the reps.  We should share our suggestions with each other and the manufacturers.

Respectfully

Hello Mike.  Great post which I agree with in its entirety, even down to the memory bit. I'm always experimenting yo try to make things 'better', even if they seem reasonable. I have a concept of JND (Just noticeable Difference), which motivates me to alter things, knowing that I might only get the tiniest of benefit. However, an accumulation of several small improvements, can emerge as a noticeable improvement.  Almost everything I use nowadays is made or adapted to precisely what is best for me.  I know I've said this several times before but I think that many things we use should be tailor-made to suit the individual. we all come in different sizes, shapes and textures and we change over time so, why is everything made as a one-size-fits-all?

I''m catching my plane later today so I might not be on here for a month or so but I look forward to catching up when I get back

Best wishes

Bill 

I'm reminded of two expressions. So, here they are:

First, if it ain't broke, break it (that's always been one of my favorites).

Second, perfect is the enemy of good enough.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi Bill.  I feel like you're an echo of my own thoughts.  I feel so strongly about making things as good as they could be in spite of the critcisms.  Folks have said "It's made that way because that's what sells".  That's correct and it probably satisfies enough people to result in reasonable profit for the manufacturer.  But, it was not made for me.  I'm only one in a bout 6.7 billion folks on this sphere.  I know what works best for me and if I could modify something to adapt better to my needs, I not only have a better product but the satisfaction of an accomplishment.  I can only imagimne how folks like Tesla, Edison or Madam Curie must have felt after their zillions of successful tweaks.

Please have a safe, productive trip.  Hope you have fun.  We'll miss you and anxiously await your return.

Sincerely,

Mike

Hey Nicky-T, nice to hear from you.  I've complied with your first suggestion too many times.  Never deliberately, just stupidly.  I get the second suggestion and I learned ages ago there's no such thing as perfect.  There's not enough time in life to seek perfection except in personal relationships knowing we'll never really get there.

Thanks for the thoughts.

Mike

Hi Mike,

I loved your post. I never thought of myself as a perfectionist, yet I try to do my best, and am my own worst critic. Good enough, doesn't work for me, for cooking....and many other activities. Having had my ostomy for more than 50 years, I've really had the opportunity to be grateful for all the wonderful changes from the "dark ages" of plastic wafers, reusable rubber bags, and flammable glue that burned the skin if the wafer was applied too soon. Ironically though, back in the day....NY ostomates had the opportunity to speak and meet with the president of one of the larger ostomy suppliers....Then United Ostomy. Some of us suggested that "he" have product designers wear an ostomy pouch (filled with water) to get a better sense of what we need. He actually did that....and he wore it as well. We also "tested" / wore new products for him. It was an interesting time. Today, we deal with big corporations....and anonymous people who "help" us choose products. We ostomates need to communicate our needs more effectively... For the companies....the bottom line is profit, but without our feedback and constructive criticism....progress stops. And yet, some things never change, and we adapt products for our own personal needs... That's a good thing. Thanks for the post...

Marsha, you’re welcome. We’re indebted to you and folks like you who persevered under the worst conditions. By your efforts we’re using state of the art appliances and accessories that we can deal with so easily compared to what you went through. Thank you so much! I’m not sure I would’ve handled my situation as I did if I had to deal with the rubber bags, the glue and the emotional pain of my affliction. You’re a hero.
With sincere gratitude,
Mike

I think the more we tweak to fit our needs the better. It sure would be nice if we had a say in improvements or design changes / adaptations.

I also don't think it should cost so much for our appliance, but unless we can make one ourselves we have no choice but to wear what they provide and tweak it if we can to help us in whatever means needed.

Hi Mrs.A.  I don't want to think it's all about money but it sure looks like that.  I guess as long as we buy the stuff that's what will be available.  Also, as long as we pay the price, that won't change much.  However, I did get the feeling from both Convatec and Hollister they were interested in our experiences with their equipment.  Both made suggestions and asked me to get back to them with comments.  

Thanks for pitching in.

Resspectfully,

Mike

Maybe we could make a suggested list of what we would like to see in the products we use. For instance, no filter or a bit shorter pouch. How about more color choices? Ya think if we order every three months for 10 years or however long with the same company, we could get a box free? Perhaps a product of choice.

Thank you, Mike, for the thread!

Hi MrsA.  You certainly offered some stuff to think about.  I know there's power in numbers and if enough folks were involved we could get all kinds of concessions.  

Thanks for the input.

Mike