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LLNorth
(@llholiday)
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February 18, 2020 12:27 pm  

What might be a reasonable amount of ostomy supplies to keep on hand? When I order I am sometimes asked, (because of insurance, I assume) how many of each thing I have left. I have gone as low as eight, but that seems risky to me. 

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


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john68
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February 18, 2020 12:52 pm  

Hi LL, I suppose a lot depends on how reliable your suppliers are, I get 3 boxes at a time which is 30 appliances, I reorder when I open the last box, Our system over here is you phone the local health centre giving details of what you need and the chemist you want to collect it from and that usually takes 48 hours I think you are safe enough doing what you are 

ileostomy 31st August 1994 for Crohns


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dogtalkerer
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February 18, 2020 2:56 pm  

myself, I have no insurance.  I like to keep a box ahead(20) or about an 80 day supply.

given what happened to cymed, I wished I had a 2-3yr stock pile.   if coloplast decides to drop the sensura line, they seem to be pushing 2 piece mio,  I'd think of a 4 yr supply.   8 bags gives you how many days?  what if the shipping company went on strike? 

 


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Lynne
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February 18, 2020 3:04 pm  

I too tend to want to have a larger supply.  I've only had my ileostomy for 3+ months and I change every 2-3 days.  I get 20 per month with my insurance although I can get fewer if I tell them.  I'm working toward a 3 month backup supply.  I think a lot has to do with how you look at risk.  I feel better if I'm covered for the "worst case." If there were a natural disaster (ie earthquake around where I live), or some other reason society/transportation/communication might not function well for several months (hopefully very unlikely!), I want to be covered (pun not originally intended :-)).   Just a peace of mind thing.  Also, I'm planning a 3 week trip and Eric and others advise bringing 2-3x what you might need, so my backup supply comes in handy there too.  Here's hoping no issues for any of us!! :-)


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LK
 LK
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February 19, 2020 12:33 am  

Hi there... I asked this of my pharmacist some time ago,   and,  we even discussed it here too. "In  case of a natural disaster", I believe was the title thread is under.  I was told the army flies/choppers in necesary medications and ostomy/urostomy supplies,   hearing aide batteries, iron infusions heart medications and such. The ones vital for survival of life, including antidepressants, nausea and pain meds. too. Interpreters even.  I live in Canada, your USA forces are stronger and larger then ours.  They very likely have plans in order. It certainly does not hurt to ask and pry a  little just to find out ahead and put yourself at ease, what the procedure is to follow under such stresses. 

Regardless, I too have a three box supply, thirty bags gets me thru, for ne that's 6 months almost. I rotate religiously and mark everything with a black marker. Six months of wipes, sprays and C shaped tapes and anything else I need or may need is rotated out by date on the numbered boxes, as suggested by others here, on the thread as well. Three boxes mark them 1, 2 and 3. Then you know to order on opening the third box as also  as above. 

To figure out what you need, a little tiny white fib may be needed when you do.  For one month I counted everything I used in a pouch change.  Keep track, I  add two months time  for wipes and such. Multiply by three months and there was my goal.  It took about 6 months to gather supplies and several phantom bag changes with horrible leaks,  and faulty wafers or excessive sweating on my tummy ruining the wafer, after all it had to be a bad  batch or two of bags with naughty wafers!  God helps those who help themselves. Sorry if this offends anyone and it is not something Eric or this site recommends. But, it was important enough to me to be prepared. We are always told, have an earthquake survival  bag ready.  Canned goods, tent, cooler cook stove or BBQ.  Full propane tanks  all stored safely for easy access and DRY! Plastic to covers tents excretra.  Food, water....uh oh...Water...? I have juice jugs of frozen water in my freezer as well when I have room,  I need it to clean my skin for a new bag,  Store several containers of distilled water as well. Hand sanitizers cheap at dollar stores,  rubbing alcohol to disinfect the outside of containers that may get soiled. Store everything in leak proof  bags for further safety.  Visit your outdoors stores for high protein foods whatever you require &  freeze dried FOOD products, or your bulk food store too. Dried fruits. They often have longer storage dates. Powdered fruit drinks, and do not forget electrolytes of  some form.  Beyond ostomy supplies, I have yet to get the food items and cook utensils and pots together but know, that the Red Cross, Army and other Gov. agencies  are prepared to help those who need it also. Right down to sleeping quarters and bedding even, if need be. But. inquire about it all. If you experience a disaster, REGISTER with them also, this way concerned distant family and friends can know your safe. Make a list of concerns, questions and needs to get started.  As we tell new ostimates....NO QUESTION IS A DUMB QUESTION!   One more thing, do not forget to buy some of the stronger disposable  bags from a your ostomy supplier. They lock in odours.  Hollister sent me some great samples as did Coloplast. Find out if they biodegrade and how long they take. Date them in stacks of ten. Use them if need be and order  to rotate supply.  Flashlights,  matches,  so not light until it is safe of gas leaks...I'm in a two story home with a basement, minimal yard.  Check out your local camp grounds, school yards and see where you can go if your home and surroundings do not safely have  a tent pitching area, maybe a neighbour would allow it.  If you need for comfort, an air bed and a foot pump for no electricity if your unable to physically blow one up with your lungs. 

This  is my take on it. Any other ideas or changes to improve  on them, please speak up. Also... FIRST AID SUPLLIES TOO FOLKS! Let your imagination roll and go with it! Why not take a first aid course to build confidence at the site of blood and CPR.  Report back Here after a disaster OR if you've experienced one. Please share your experience or what you may have already gone thru, and changes you would make would, to help us make decisions would  be great of  you. Heaven forbid we need them, but if so,  God bless you all!

Linda 

Linda


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LLNorth
(@llholiday)
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February 19, 2020 1:19 am  

@dogtalkerer

Eight bags gets me close to three weeks.

John, I live in the states and I have insurance - I order from a supplier and receive a shipment at my house within a few days, very convenient. The supplier sends me a bill for what insurance doesn’t cover.

 

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


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SqueakyandLiza
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February 19, 2020 3:22 am  

I have insurance which sets limits on how much I can order in a month. Since going off of home health last May (they were providing supplies while I was under their care), I have ordered the max of appliances, paste, adhesive removers and wafer extenders. I have tried several samples, and have changed from a one piece to a 2 piece adhesive, to now a 2 piece click. I get 20 bags a month and currently have a couple boxes of each 1 piece and 2 piece adhesive and one box of clicks. I also have about 10 boxes of the extenders and 8 boxes of paste. It was easy to keep getting the max amount last year, since I had met my out of pocket maximum for the year, so there was no cost to me. This year I cut back on a few of the things I had a big stockpile of and don’t go through as quickly (barrier wipes, stoma powder, deodorizer) because now I’m back to a deductible to meet. 

I prefer the click bags now, but feel comfortable using any of them if need be. So, I feel like I have a pretty good 3 month stockpile. 

As far as any natural disaster, I know whose house I’m heading too (Linda). 😂

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


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LK
 LK
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February 19, 2020 8:52 am  

@squeakyandliza

Too funny Liza! But I would share at the drop of a hat, you or anyone would be welcome! We'll have pie! Eventually.... !

My hubby was a fire fighter and he had the earthquake stuff all raring to go, I  already had the first aid under my belt & the kit done up in a fishing supply box.  But, now I'm the one who needs to rotate and I'm afraid I may need the Armies help before that gets done! Some are just better at this then others,  and not being well enough to run around like he did, makes a difference between ready  or not. 

Remember too folks...those little packets of wipes can dry out so rotating is pretty much vital. I once had a box of pouches I failed to rotate until it was said here 🤷‍♀️ 🙃and at three years  the wafer still worked well. I was very surprised.  So, to try it,  I cut one to size and wore the cut out  hole part to try and avoid a leak, rash  or whatever, and it was fine so then I tried the pouch and it did as well as my new stuff. It did take a long time to gather what I needed but with health issues and so much  less then half the wages, it's a whole other story.  Money, insurance availability it all makes a difference.

Linda


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VeganOstomy
(@veganostomy)
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February 20, 2020 11:37 am  
Posted by: @llholiday

What might be a reasonable amount of ostomy supplies to keep on hand?

This is a great question. Some of it will depend on how your insurance pays out, if you live in an area prone to natural disasters, what kind of access you have for supplies, and what kind of product you're talking about. 

I personally order every two months, so at most I'll have a little more than two months' worth of wafers and bags. But I have very good access to supplies, so I could order something today and get it tomorrow - I've never been in a situation where I had no supplies. 

But I know some people who literally stockpile a year or more because they worry about what might happen if they lose their insurance, job, etc. and can't afford to pay for supplies. 

I've never had my insurance company ask how many supplies I have on hand, but they do cover supplies based on "reasonable and customary level" so ordering way more than the average ostomate uses might raise some red flags. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LLNorth
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February 20, 2020 1:31 pm  

@veganostomy

My insurance requires a prescription from my doctor. Any deviation (I ordered cera-plus seals last time) has to have a rewrite of the prescription, which is for 3 months of supplies each time. I always go longer than that before I re-order, and half the time the supplier asks me to verify the number of each (covered) thing I have left on hand. Had a challenging situation in November, when I needed some larger bags because of an upcoming colonoscopy. The supplier told me they wouldn’t be covered because I had just received my box of supplies at the end of September. Then they did a rush  prescription request to my doctor, which went through.

It takes months to process claims and it is possible that the supplier will end up having to bill me for the box of large bags

I am not complaining - I am really thankful that I have to pay very little out of pocket!

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


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VeganOstomy
(@veganostomy)
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February 20, 2020 1:48 pm  

@llholiday

The prescription model for ostomy supplies is terrible, and I've had discussions with stoma nurses about it. Yes, if everything is fine and there are no problems then it works with little inconvenience, but if a patient has problems or needs to try different products then it's a nightmare. 

My insurance allows me to purchase any supply I need from any company within Canada - then I submit my invoice online and usually get reimbursed the next week.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Valerie
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February 20, 2020 2:03 pm  

I always order all the supplies allowed. A recent insurance hiccup made me miss 2 months of orders. A fairly serious skin condition under my flange forced me to change 2 times a day, for weeks! I also had to try several systems to find the best one to help. Fortunately, I had a suitcase full of various choices, and plenty of my current supplies. A couple of years ago when we were under mandatory evacuation orders due to a wildfire, I was ready with my ostomy "go bag!" I'll always have what I call my "Zombie Apocalypse" stockpile for my peace of mind!

UC at age 18, 1981. Diagnosed at 20, proctocolectomy with permanent ileostomy at age 23, 1986.


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bluesgal
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February 23, 2020 10:42 am  

My local ostomy support group recommends having a 1 year supply in case "the zombie apocalypse" occurs. Medicare provides 20 pouches/month, 20 wafers and assorted ancillary supplies like barrier rings, skin wipes, etc. I have an ileostomy and change the pouch every 3-4 days, so 20 pouches allows me to build up a stock pile. I label the boxes with the expiration date and store them in "chronological order" so that I am always using the item which is closest to expiration. If you find that you are 'overstocked' or that some of your supplies are close to expiration, you can always donate them. FYI I have used wafers that past their expiration date with no problem; I can't see why there is an expiration date for pouches, but the boxes have one. Hope this helps.


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SqueakyandLiza
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February 24, 2020 2:46 pm  

My insurance requires a prescription, but if I want to change something that falls under the same category, the supplier can substitute without a new prescription. For example, I changed from coloplast wafer extenders (2 crescent) to Hollister ones (3 arches) and I changed from 2 piece adhesive coupling to 2 piece click coupling appliances and didn’t need a new prescription for those changes. 

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


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