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john68
(@john68)
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Joined: 3 years ago
Posts: 1626
June 18, 2020 12:50 pm  

Hi Folks, I am always dismayed by the lack of information, instruction and follow up that is given to a new ostomate. I would like to point out at this point that there are very attentive nurses! But so many seem to be leaving the hospital with no basic training and not their fault. I can’t understand how! Why! Problems that are caused by this just add to the nurses workload. Preventing is easier than cure. The newbie is left in a maze of products confusion and not getting of too a great start causing untold mental anxiety! Please any one needing help keep banging that door keep pushing and in the meantime members here will do there best to help. Follow and read up on the information on VO even if it’s a problem you don’t have cause it may be useful to know sometime.

ileostomy 31st August 1994 for Crohns


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ChrisandBagpus
(@chrisandbagpus)
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Posts: 137
June 19, 2020 11:17 am  

John a excellent post

It is an issue that this forum does indeed help. For me finding this forum helped me to go back to the nurses with the bag system I wanted otherwise I still think I would be still going around the mulberry bush on that.

Here in the UK IMO the nurse are not proactive I think the training discourages also they have to follow the protocol, so you only get the right product and or necessary products (Sprays,belts etc) having proven its what you need before it overrides the cost.

It other countries I'm sure the system is different.

Lastly not sure if I heard you right did you say "There are very attractive or very attentive nurses" ;-) 

 

Colostomy Jan 2020


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LLNorth
(@llholiday)
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Posts: 245
June 19, 2020 1:16 pm  

@chrisandbagpus Hi, I am in the US, and I have found that with my health insurance it is quite a rigamarole to get a change in prescription for supplies.

When I request supplies I am sometimes asked just how many of each thing I have left. 

I am truly appreciative of having good health insurance, but goodness it is a complex system.

Colostomy 4/30/18
I love the smell of coffee in the morning. It smells like .... victory.


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ChrisandBagpus
(@chrisandbagpus)
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Posts: 137
June 20, 2020 4:44 am  

@llholiday

I really appreciate the health system in the UK in that healthcare is provided on need and not on your medical insurance. I wonder how in the US you manage.

For us if you have need you will get the supplies if they are approved by NHS. Sometimes its its own rigmarole to convince the prescriber its what you realy need that's why the VO forum and Eric's foresight to create it its such a treasure trove of advice, support and help. Especially the time member put into reply and composing post for each other, especially when an ostomates life is at times busy (Bagpus can be plantantic and demanding 6 month old :roll: )

Colostomy Jan 2020


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LK
 LK
(@dlkfiretruck)
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Joined: 3 years ago
Posts: 856
June 21, 2020 12:48 pm  

@John68....You are exactly right John. They can do better while we are in hospital then they do. I learned so much more on my own, working thru issues then I did in hospital & the one time I talked to a so called  stoma nurse.

For 8 years I worked with the same supplies I was given when I left the Hospital.  I have  no complaints over our Canadian medical system, Surgery was 100 % covered & my supplies are paid in full & unlimited, all I have to do is order more.  The M9 liquid deoderant & Osto Ez Vents are not covered, they're classified cosmetic. I learned about them here. That bottle of M9 liquid deoderant made it so I could confidently leave the house & be around people & go to church again.

On finding VO & our good man Eric, l read his story & binge watched & rewatched Eric explain so many things that I even took notes. Phone calls were made & samples sent my way. I asked for & accepted  anything they would send me.  I changed products & built up a bit of a supply. I had become a widow five months after my Ostomy surgery due to Pancreatic  Cancer.  Because of issues I had the only places I really went were the grocery store, pharmacy & my GP office.  I was a bit  shocked at the openness & topics discussed here. But it was good. Even Neccessary.

 I often found myself in tears. These were things I had gone thru & others with new stomas were going thru them too, but there would be no 8 years for them.  Once I became brave enough I made my first reply to someone asking for help and the rest is History. 

Thankyou again Eric!

 

Linda


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Dona
 Dona
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Posts: 815
June 21, 2020 2:10 pm  

Well said Linda...

And great subject John.

Understanding, sharing stories, support and wonderfully, friendship is a huge help to us all.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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SqueakyandLiza
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Posts: 628
June 21, 2020 3:53 pm  
Posted by: @llholiday

@chrisandbagpus Hi, I am in the US, and I have found that with my health insurance it is quite a rigamarole to get a change in prescription for supplies.

LL, I am pretty lucky with my insurance, in that if I want to change to something new, as long as it is the same category (ie: appliances, wafer extenders, deodorizing drops) I do not need a new prescription. It is just if I add something brand new that I need a new prescription. And Byram is good about contacting the dr for me to get the prescription approved. 

I am also in the sweet spot where I have met my out-of-pocket maximum for the year, so as long as I stay in network, everything else is covered at 100% for the rest of the year. 

Unfortunately, my second opinion is at an out of network hospital, so that is a whole other (higher) deductible to meet and another out of pocket amount. It will be well worth it if everything gets resolved though. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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