Thanks, but no hero worship! LOL I will fall off of that pedestal way too fast! The funny thing is, the website I found it on was wrong. It referred to the number 2 saying it was 2012, but the example did not have a number 2 in it! I emailed the website to let them know of the error so future ostomates could understand it! They emailed me back and thanked me and said they corrected it! That was cool!
Hope it helps everyone!
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 33,456 members. Get inside and you will see.
It's not all about ostomy. Everything is being discussed.
Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.
Privacy is very important - the website has many features that are only visible to members.
Create an account and you will be amazed.
Donate some. Friends of Ostomates Worldwide.
FOW-USA 4018 Bishop Lane Louisville, KY 40218. Some of these people are desperate for supplies. I try to donate anything that I no longer use or samples that didn't work out. Then I throw in a few of my own pouches as I get a mini one-piece from Hollister, so it's probably good for kids or smaller peeps. Ty.
I do two things with extras. 1) I make a kit for emergencies with the products I need for changing the skin barrier - adhesive removers, skin barrier prep, skin barrier and bags, etc. You can put a set in the car, glove box, under the bed, in a closet, a suitcase-- anywhere you can grab it and go if you have to. In case of a storm or earthquake, you have extras. 2) There are two charities who give supplies to people who have no insurance. Friends of Ostomates Worldwide fowusa.org, and ostogroup.com. I send extra supplies I don't need. The things I use, I store and keep. If I have leftovers, I don't order it for a while. I store things on a closet shelf.
I had that trouble, too, of receiving more supplies than I needed. Finally, I just asked the supplier not to send any more. I'm a Kaiser patient and I know that I can always order more when I finally need some, but I still have lots in my closet waiting to be used.
Fortunately, when I had private insurance, they paid for all that I needed. Then, once Edgepark made a mistake and sent me two orders back to back (for 90 days' supply)! So I had lots of extras, and they filled up my closet. Unfortunately, when I went onto Medicare, they cover 2 a day. Period. Which is, of course, WAY inadequate! I no longer have a full closet, and life is getting difficult. I am working my way through this problem, trying things like liners, etc., and working on getting a prescription for more that maybe Medicare will honor. Having said that, I store a small supply in each bathroom, with the rest in my closet. I do have some spare supplies that didn't work out, and I thank you for the places to donate them! I really appreciate that!
Dear all,
Just 7 months into life with 'Enigma' Urostomy stoma. I use an under the bed storage system but realize that I am running out of space. The suitcase suggestion is terrific. I would normally keep it in the attic but we had a heatwave this summer in England so..........
Hope everyone is well. I too am slowly building a backup stock - just in case Brexit takes its toll.
Hope everyone is well.
C
Hi Cat6, yes, I always bring extra supplies or things I don't use (samples, or products that didn't work out) to my Ostomy group. Everyone can take everything/anything they need. And we do. It is a great way to try out new products without expense, or things you may not have seen before, but don't want to take a chance ordering. Every few months, my Ostomy Group 'clears the decks' and delivers supplies to several ostomy-specific charities. I support this as everyone is not as lucky as us. However, I have no problem ridding myself of product for which I have no use. My problem was storage of usable supplies and a minimum six months supply (yes, I rotate my stock). This has been solved, thanks to freedancer. Cat6, be generous, but always have on hand enough for your own needs.
Hi Cat6, yes, I always bring extra supplies or things I don't use (samples, or products that didn't work out) to my Ostomy group. Everyone can take everything/anything they need. And we do. It is a great way to try out new products without expense, or things you may not have seen before, but don't want to take a chance ordering. Every few months, my Ostomy Group 'clears the decks' and delivers supplies to several ostomy-specific charities. I support this as everyone is not as lucky as us. However, I have no problem ridding myself of product for which I have no use. My problem was storage of usable supplies and a minimum six months supply (yes, I rotate my stock). This has been solved, thanks to freedancer. Cat6, be generous, but always have on hand enough for your own needs.
Colie123, I use an underbed system for my knitting stash. Isn't the suitcase idea great? Freedancer is practical and smart. If you read my replies, I have six old steamer trunks that are enormous. You could easily store two years' worth of supplies and accessories. I have suitcases I never use, and probably should have donated, but I'm glad I didn't. I can now grab a suitcase to pack without unloading supplies. If you're just bursting out of the under bed storage, the suitcase will serve you well. As your supply grows, look around for a stationary storage area for your overflow. Some of the replies I have received have focused on donating supplies. I already do this via private ostomy charities and donating items to my ostomy group, who also donates our 'overflow' to important charities. Living in the climate I do, I cannot stress the importance of having AT LEAST a month's worth of supplies in a place that will survive a disaster. As generous as we are on this site, we should strive to continue to be so. Don't find yourself on the receiving end of charity. If you have nothing for yourself, you cannot help others.
I guess my small shelf with a couple boxes of each doesn't really compare. :) Despite being in Canada (Ontario), our provincial health care system doesn't provide supplies but rather they give 480 grants twice a year, regardless of income. That definitely doesn't allow for stockpiling. Duoderm and M9 Drops seem more like a luxury ostomy item when you pay with your own money/credit. Private health plans, through employers, were great as they really have no clue how often one needs to change. I hear some change daily. I change about once a week. It would be worth getting a part-time job if it had benefits.
Newbie Dana, have you considered using a drainable pouch? A one-piece is almost as easy to change as a closed-end pouch but obviously will give you longer wear time. I use closed-end pouches, but not as my usual appliance. My output rather demands that I use a drainable pouch. I love the closed-end pouches: I use them at home when I'm not eating much and not going out. When I'm out (at a dinner, meeting, or presentation), I carry a few with me and if needs be, rather than draining and cleaning up, I take off my onesie and replace it with a closed-end. They are easier to change, requiring less clean up and time. Like me, you might be happier 'mixing it up', you'll be able to get enough from Medicare to cover your needs if you order a month of drainables every so often.
Dls,
Hey, have you gone to your Ostomy group meeting and been crowned Queen since you have the secret code to unlock Convatec expiration date yet? Cannot wait to hear about that! Lol
Puppy
I have an antique dresser, washstand, 3 drawers, and a closed end with a door. All my supplies are in that. What supplies do I have? I called to order pouches last week and was told that when I get down to 4 or 5, I should call back (Edgepark). They said Medicare will only cover so many days at a time. It has been 4 months since I have ordered. I have had one of their reps tell me one thing and then told something else by this one I talked to. I may just call back and see who else answers my questions. I am down to my last box of 10 pouches. She wanted an exact count and wanted to know how many (exact) days they would last. How the heck would I know? I told her I changed every 5 to 6 days if I didn't spring a leak. Needless to say, she wasn't very helpful.
There. Now I am through venting.
Wow! I am surprised that Edgepark has questioned you! They are in the business of selling supplies, not gauging your use! I would tell them I have one pouch left! What are they going to do, come check your supply dresser for supplies? Not! I tell them to send me everything my insurance will pay for every three months! Fortunately, I have Medicare as secondary so my primary dictates my limits and they are very generous!
Your antique washstand sounds like a perfect storage place! I am lucky to have a huge double linen closet and cabinets under my counters! I have plenty of room and plan to fill it all up before my Medicare becomes primary in the years! Lol
Puppyluv, Medicare is my primary, and they do put a limit on what we need, every three months and ask that Edgepark ask how much we have left. I guess I was over the limit for my 3 months, so they said they couldn't send me any until Dec 26. Unreal. Even though I haven't ordered any for 4 months. Next time I talk to them, I will take your advice and say I only have 2 of 3 left. Evidently, I am only allowed 10 per month. LOL 3 boxes for 3 months. And no matter how many I use, they will only send me 3 boxes which I guess I must use in 3 months or they won't send more if I still have so many left. Crazy system.
Red, that is crazy! The people that make these decisions do not have an ostomy or associated with anyone other than patients that have one! Let them get up close and personal with their shit and see if their views on supply needs change. As I say, I will be storing up on my supplies so when Medicare does become my primary, I am not left with "not holding the bag"! Hahaha! I will have a choice to let my primary go when I am 65 and can take up a supplemental plan! May have to rethink that! Lol as long as my husband works, I am good!
Puppy
Hey everyone, I finally got fed up with Edgepark. Now they wouldn't send my supplies until Dec 26 because I have 6 pouches left. And one of the pouches I have used from day one, they no longer carry. Today I had to change because of a small leak. Now down to 5. So I placed a call to a new supplier, Liberator, and they were very helpful and also have what I need and then some. The gentleman I talked to even made some suggestions, and I was surprised he knew so much about ostomies. So goodbye EdgePark, and my supplies are now on the way.
Little Red,
I am really surprised at that! I have always received great service from Edgepark. Some of the people are more knowledgeable than others and some will dig deeper for you, some won't. I did call Liberator once thinking they were an ostomy company versus a supply distributor, I called for samples, and they were very nice as well and wanted my business of course! I would also go to them in the event Edgepark became an issue. I am not sure if they file your insurance, do they? Some do not! That is my only requirement other than getting the right supplies to me at the right time. Keep us posted on any issue you may have getting changed over and how they do! We are all just one order away from a mishap! Lol
Take care
Puppyluv
Hello vollovr. I have not tried it myself but many others have commented upon it here. Unfortunately, you are unlikely to get many replies by posting a different topic on someone else's post because the tilte of the post indicates that it is about something else. Your topic has been discussed in other forums and blogs but they are a bit difficult to find. If you scroll down on 'LATEST FORUM' topics there is a post entilted 'Cannabis As An Alternative Medicine' where this discussion has taken place. Alternatively, you could try posting your own separate blog or forum topic.
Thank you for raising this as it has motivated me to contact admin to ask if they could have a 'FIND TOPIC' icon, which would make it much easier to locater past posts on any subject.
Best wishes
Bill
Hi all, I keep my extra supplies in a cool, dry place and do my best to rotate to use the oldest first and the newest last. I suggest to all of my support group members to always have extra on hand... just in case something happens and the monthly shipment is delayed. I also pick up samples of various ostomy products when I can and share them at my support group. Samples are not as common as they once were as suppliers are more strict with giving things away.
Little Red, did you get your Medicare problems with Edgepark resolved? Someone is scamming you. Here in NYS, if you are Medicare primary, you get 20 one-piece or 5 wafers with twenty bags per month, plus all accessories written on your original script--which may be changed by your doctor at any time. No one can ask how much you have left, it's none of their business. As a Medicare recipient, you pay (in NYS) 20% of your order plus your Medicare premiums. Never used Edgepark--not likely I will. However, you can use ANY DISTRIBUTOR YOU WISH, as long as they accept Medicare (they all do, it's their bread and butter). Let 'em have what for, and never suffer unnecessarily. I am not Medicare eligible yet, but as my health insurance is for life, Medicare 'piggy-backs' on my primary, so I won't be paying the 20%. Before you start shouting, make sure you know the absolute parameters of your coverage--here in NYS it is the same for all ostomates, and even with the 20%, it is quite generous. I sometimes order up to my limit to continue to build my emergency stockpile.