Frustrations in Ostomy Care and Advocacy

Ariestar85's post regarding anger and frustration has stayed with me. Re-reading it and the many responses is making me feel a myriad of emotions and causing my own anger and frustration. Not about having an ostomy, I made peace with that and am grateful to be alive. My frustration and anger are directed at the lack of knowledge/compassion within the medical community, accessible education for patients and families, technological advances in treatment, and financial assistance for supplies, to name a few.

I know we have the UOAA in the US. Is anyone here active within that organization? I can Google with the best of them, but would prefer to get information from someone who has experience.

From article https://www.hmpgloballearningnetwork.com/site/wmp/content/ostomy-statistics-the-64000-question

"Number of Patients
Currently available estimates of the number of patients vary. One report estimates that 450,000 people in our country currently have a stoma and that 120,000 new surgeries are performed each year.1 The United Ostomy Association estimates that slightly more than 500,000 Americans now have some type of stoma. Another market research report2 stated there were 800,000 ostomy patients in the US in 2000, and that the number would grow at an annual rate of 3%"

The article is part of a series called The Ostomy Files through the support of ConvaTec, A Bristol-Myers Squibb Company, Princeton, not sure if that affects the reporting, but it does pique my curiosity. There are a lot of us in the US and worldwide, surely we could have a voice?

Is it just wishful thinking?

No, I agree. Ostomies should be put out into the world, acknowledging and embracing them, and they should be shown off along with the people who have them. It's so hush-hush, and not many people even know how to deal with them or what they are. It's a shame, really; there's nothing wrong with having one, and it's a beautiful thing—a second chance at life.

It is a beautiful thing, indeed.

You ladies are spot on. I think it's just going to take some time and much effort to get ostomies recognized.

A president, a politician, someone famous, for example, having one would increase awareness tenfold.

Embarrassment might be holding those people back.

As for locally, if any medical professional says "it's not a big deal," that is definitely a red flag. And I would call out that professional. If it were a doctor who said that to me pre-op, I'd shove my bag in his face post-op, saying smell this. No big deal, right? I'm going to leave it here in your trash as a token of your good advice to me. "No big deal" right?

Luckily, my own surgeon never said that to me. I don't recall anyone saying that to me, so I can't comment really. I can make stuff up though...😆. I do know a patient has access to information with just a few keystrokes, which makes him responsible to find out more information or follow up on this type of "no big deal" surgery pre-op.

You would do it if searching for a car, right? This should be second nature to most. "Google it."

Re: that angry and frustrated post. The comments? Did you see where a member called out the judgmental dickheads? - that disturbs me more than the original post.

The internet is a great resource for ostomates. That's where I stumbled on this website. Found it by accident.

It would be so helpful for hospitals, nurses, and surgeons to compose a list of ostomy websites.

Warn about hernias, especially right after surgery. Introduce and advise about support belts. I used to wonder what the 3 tabs on my Hollister bag were for. A couple of months AFTER surgery, I found out they're clips for a bag retention belt. And the top clip was to aid in burping. Duh 😳

Ostomy supply companies. No one told me they offer free samples and have ostomy nurses available for consultation. Found that out on this website.

It is bewildering at first. I remember looking at an ostomy supply catalog. Wondering. What the hell is all this stuff, and how is it used and why.

Once you're savvy about supplies, "insurance" is next on the learning curriculum.

Living with Your Ostomy | Hollister

Wanted to add, yes, I did a lot of research myself and because of that, I found this group.

My comment about not wanting to Google it was in reference to the UOAA. I can, and have researched it; I was just wondering if any of the folks here had experience with the organization.

As always, I appreciate everyone here!

Google does have answers, but not as in-depth as they should be, in my opinion. They give the basics, but you ask different things, and they say the same answer lol 😆. It is true, though, when you first get one, we are left to figure out the harder stuff. As my case in point, not enough awareness or people, even in a medical setting, know what is going on or how to deal with it. Unless it's, of course, a doctor that specializes in this field. Sometimes even then, when you're a complicated case, they don't know what to do lol.

Hi there,

I have researched them, and in my personal opinion, I am not too thrilled with them.

I'd love to know more. I fear, as with any large organization, over time they have become less focused on the people and the cause, and more on money and lobbying.

Hi Nini 4

It is frustrating that ostomy is not more well known. Growing up, my mother would take her old roommate with us places. Claire had a urostomy. The amount of things that I learned so, so slowly seemed to hugely impact my life. They were things like, yes, you can be allergic to your pouch and wear it for over a year miserably, thinking it was just the way things were. I know to explain to medical people now because they don't know about it. A celebrity talking about ostomy would go a long way for education. Sad that Matthew Perry of Friends died, and not saying anything bad about him. Even though Perry described in his book that the horror of having a temporary ostomy scared him out of drug use, I was heartened just to hear words with ostomy in it. On the local level, I belong to a group having an ostomy celebration of life because the woman running the group is a powerhouse and had been dreaming for years of throwing a party about it for everyone, put her own money down, and rented a hall. I am grateful for the upcoming gathering. The times I see and hear experiences about ostomy give me relief. Thank you for the post.

Nini, that's what it seems more like to me. More focused on money and lobbying. The biggest question is, if you're having an organization for ostomy, why do you have to pay a steep price or pay to be a member or pay to hear someone speak on an ostomy problem and tools that might help fix it? And some of the information is not accurate. For example, if you need emergency supplies, they say that the companies you use will send some to get you through, or the other options they give you aren't accurate. I went through a weird period of time where I had just received my monthly order, and then I had emergency surgery, so my bags were the wrong size. I tried all the numbers they have listed, and I also told the company I use, and they refused to help out even though I told them I would show them proof that I had just gotten out of the hospital. So, emergency supplies don't exist for us. The UOAA needs to change that info.

I wanted to go to their annual conference, except it was in Houston, TX in the middle of August last year—100+ degrees. My goal in the summer is to be a turtle and not sweat. Then I found out the UOAA conference is every 2 years. I follow them on Insta, and the UOAA is working on an awareness campaign for Ostomy Awareness Day on 10/5/24! They are trying to get all 50 state governments to recognize the day.

I will look into it. Thank you for the information.