Advocating for Change: Writing to Lobbyists and Legislators

Aug 30, 2018 7:44 pm

Hello Osomates.... Since June 2018, I have been enduring bleeding of the stoma and swelling. My stoma nurse and surgeon are following these episodes. My stoma nurse said because my stoma is not predictable, I'm to change one to two days. Yes, I do irrigate; however, my surgeon didn't tell me about irrigation. I learned about irrigation on this site. First of all, there are all kinds of cures happening today. It took effort and people who suffered with illnesses to come together.

I reside in the state of Kentucky. As of 2017, the population was 4,454 million. One letter to anyone will not persuade anyone, nor get attention. Ostomates, if we want a change, we have to write our lobbyists, senators, and congressmen/women. Some of us who will never be reversed, this is food for thought. Insurances will only pay for so much, simply because they want to save. However, do they wear a pouch with waste? Yes, there are ignorant people simply because they do not know (about ostomates). Yes, this site is our refuge and we understand one another, though each of us arrived for different reasons we arrived.

We as ostomates must educate individuals responsible for change. If that means taking our equipment off and showing them, I'm willing if we can just get there. If you want change, we must take action.

We have no more control than they do when they have diarrhea. The difference is, they have tissue. We need supplies.

Thanks for your time.


Aug 30, 2018 8:42 pm

I agree with you 100%, most people don't understand. Even healthcare workers in an emergency room many times don't have the knowledge to properly treat an ostomy patient. I can't imagine that there is any more knowledge in an insurance company or government office dealing with medical supplies. My last ER visit, if I hadn't been able to change my own appliance, the staff would have had to call wound care down to the ER to take care of it for them. The doctor was not comfortable taking the appliance off herself!!!

That said, we ostomates are not the only ones who deal with tightening belts on medical supplies. I've watched this very thing happen with my Mom, an elderly COPD patient, on oxygen 24/7, taking breathing treatments 4 times per day. She has to be re-tested yearly to prove she needs oxygen in order to have the cost of the equipment covered. The oxygen supply company will only allot a certain amount of supplies per month, if something goes wrong and she runs out, she has to buy replacements out of her pocket.

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Aug 30, 2018 8:56 pm

Sasquatch... here's an example.. .. When I first saw the bleeding, I went to the ER. The doc came in with the nurse. I wear a two-piece, I just took the pouch off. The doc said, "Why does your skin look like that?" The doc had no clue. She thought it was my skin. There's never anyone from the stoma dept in the ER. Heck, sometimes they don't know. Needless to say, it was a wasted trip. The same way I went was the same way I left.

Thanks for replying!


Aug 31, 2018 5:44 am

Hello Angelicamarie. I agree with so many of the points you raise. People do need educating on these issues but in order to achieve change, the people who make the decisions are the ones who need it most. Very ofen they will ignor things that don't directly or indirectly affect them on a personal level, and ignoring things makes them 'ignor-ant'. One of the most effective ways to achieve change is to identify these people who are the decision makers and target them for personal education. That's what 'lobbyists' do in the political field. It usually takes time, effort and resources to lobby effectively and there are so many other people doing it as well. Especially those who have vested interests in not contributing any of their own resources to the wellbeing of the rest of society. It is these folks who usually get their own way in terms of achieving change for their own benefit at the expense of those who are less able to put their views across.

Best wishes


Aug 31, 2018 6:28 am

Bill... what made me post this was my stoma nurse. She told me to start writing to the lobbyist. Of course they don't want to rock the boat. Heck, it might interfere with their pay. She then said if they knew what ostomates go through, perhaps they would change things (meaning the amount of supplies that's allotted). However, we are the ones that are forgotten. I do believe if we started writing letters to those that make the decisions, it would make a difference. They are voted in. Let's face it, there are many ostomates. Some of us pay for insurance and some don't. There has to be something that we can do collectively. NUMBERS COUNT!!!


Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Aug 31, 2018 1:38 pm

Hello Angelicamarie. Once again I agree with your sentiments about lobbying when you say that there has to be something we can do collectively. Unfortunately, I have a very cyincal view of politicians, which is why I feel that they are more likely to be empathetic if they have actually experienced the problem themselves or have known someone close who is willing to talk to them about their experiences.  Otherwise the subject is too remote for them to begin to understand or care about.

Best wishes