I have had an ostomy off and on for many years. On the last surgery to reconnect, I ended up with an ileostomy. I have to use different bags, and my insurance doesn't cover them hardly. I have a prescription for them, and I still can't afford to pay the co-pay. I was diagnosed about 4 years ago with Ehlers-Danlos Vascular Type 4. So if you know what that is, I already have enough to deal with, and now I am having trouble being able to get my supplies because of the cost. I have tried several different types of bags and found ones that work pretty good, and my insurance won't pay for all of it. They said they are too pricey. Can they do that? I need some advice!!!!

Here's a link provided by another member http://www.ostogroup.org/

I don't know if they can help or not.

Andy and Angie
Unfortunately, insurance can do that. I don't know your specific insurance, but occasionally I have had luck getting a "letter of medical necessity" written and signed by the doctor in obtaining ostomy supplies beyond what the insurance guidelines allowed when nothing else would work for someone...this is in the US and not sure where you are located.

You might also try the link above, your own local ostomy group, or calling the company whose supplies you like..they do want your business and may be willing to work with your insurance company.

I hope this helps.

And if that doesn't work, then file a grievance with the insurance company.... They get upset when an issue goes to higher authority (waves do rock the boat).
Good luck.
Jim.

I have had some luck finding supplies on eBay, where I search for my favorite brands of ostomy supplies (and I won't pay but fifty percent of the retail cost, which is usually outrageously high). This takes a little pre-planning (making sure you have enough supplies to last till you actually find a cheaper provider and the item is actually shipped). Most of the folks I buy from there are good at shipping the item in a timely manner, and they appreciate repeat business. I was even lucky enough to find sellers who had surplus items and really didn't care how much I paid for them as long as I paid the ten dollar shipping cost. They often times sent me more than I ordered, for free.
Good luck,
Ken

Hi, I have a lot of supplies that I did not use due to the shrinkage in my stoma after surgery.

I am looking to bless someone with them, so if you give me your size and the brand you like, then we can see if they will work for you.

No charge, I will send them to you for free.

You get your doc to write a note stating that's what you need. Then, if that doesn't work, get your WOC nurse to get you signed up for some of the programs that Hollister and other companies have. They are really good about it. It's not like you walked in and asked to get stuck with a bag. Don't let them bully you.

Hi, I have some extra supplies that I can't use... (samples that I've requested from companies)...that you are welcome to...also, your ostomy nurse can give you a few to tide you over in an emergency...I go to 2 different hospitals and my ostomy nurses are God sends!! My heroes!! Please let me know what you need...I also have some Coloplast... I'm happy to help in any way : )

I have used Osto Group when I didn't have insurance...they are a blessing. They may, or may not, have the exact supplies you need, but I talked to Marian, who took the time to find some supplies that worked for me. Osto Group is specifically for those who don't have insurance and can't afford to pay the high, and might I add, ridiculous price of ostomy supplies. Unfortunately, we are held hostage to paying the exorbitant price of the supplies because we can't function without them. Okay, so I'm whining a little bit, but I'm sure many people are confronted with how to afford the supplies.

Hi Anyangiet, are you still having problems getting pouches, lass?

I, too, am really glad for all the information here because my insurance only pays for 6 pouches per month, that is all they will "allow" .... who the heck wrote their policies? Good grief.

Andyangiet, did you get your supply problems worked out concerning your ostomy needs?
What brand and type of products work the best for you? Next question, what will work. Not talking about the best.

I have hundreds of wafers and bags and Eakin 2" seal rings. Most of what I have is Convatec.

Rick.....

There is a pharmacy here in Wisconsin that is hoping to fight for ostomates in the Medicare realm to see if there is anything they can do to "up" the number of allowed pouches per month from 20 to at least 30 but ideally 40. They would like to know more about this "letter of medical necessity" and also have requested that I ask you, "how is it then submitted to Medicare?" Thanks.

wounded doe

"Letter of medical necessity": the physician writes a letter which documents the need for more supplies than the guideline amount; this is submitted to the supplier and insurance company.It has sufficed for a few of my patients with private and Medicaid insurance groups. I can't recall if it worked for Medicare, but I would hope they would be reasonable (HOPE!)

Example:
This letter is a request for an increase off the allowed number of closed end disposable ostomy pouches for Mr. X to 90/month. Mr. x has a diagnosis of rectal Cancer and has a permanent colostomy. He has essential tremors in his hands which make it impossible to use drainable pouches with closures. He lives alone and does not have a caregiver to assist him. He is able to maintain independence with his ostomy appliance using disposable closed end pouches, but requires 90/month to contain stool and maintain hygiene, independence and dignity.

Signed by MD

give the reason for requesting more than what is allowed; good examples would be : stoma located in a skin fold or retracted, hernia and surgical relocation is not an option; high output from stoma which disintigrates pouch/wafer integrity; dexterity or mobility issues which make pouches with closures on the end difficult to manage, etc.

Give a reasonable explanation. Your local supplier may want to submit the letter before giving you the extra supplies. If the insurance comapny denies, file an appeal. It is not always easy, and sometimes persistance wins.

For submitting to Medicare, I would ask them to submit it to the person they usually bill to for supplies. They may have to make some phone calls (or you could)...to find out exactly who to submit the letter to.

The UOAA has fought and won keeping ostomy supplies covered...for now. With all the cuts coming...it is scarey. I will try to call one of my local suppliers this week and get a better answer for you on a letter to Medicare.

Good luck!

bluang77,

I have a few samples that are 1 3/4 (wrong size for me) and a few others that can be cut to size. I will send them to you if you leave me your contact info in a message. I'm not a full member so I can receive messages but not reply. Let me know if you need any stoma powder or paste. Check out ostogroup.com. I used them once and it cost a lot less.

Everyone, you should check out Colo-majic Flushable Liners. You can Google and find several distributors. They cost about $65 for 300 liners. I purchased mine from C M Ostomy Supplies because they cost $63 which includes shipping cost. They are a miracle for me. One pouch can last several days when using the liners. No more draining, squeezing, or dirty, leaky, smelly filters. I have a colonoscopy, but I've read you can also use them with ileostomies. I'm thinking it will also help those of you with ileostomies with the leaking, adhesion, and skin problems because the stool will never touch the skin barrier thing or your skin. It all goes into the liner. I know I probably sound like an infomercial, but I am very happy with the results. They'll save you lots of money and peace of mind. At least get samples from all the distributors.

Live well...

I would like to suggest the OstoStore.com. The prices are wholesale. The selection is limited, but if you don't see what you need, you can get a quote by sending an email. Response time is usually a few minutes. I doubt you will find lower prices other than from a charity group like the one mentioned above.

Good luck.

Bluangl77

I will send you 20 Convatec #413182, 1-1/8" stoma, 1-3/4" ring size. These are convex wafers. I will include 20 Convatec bags that fit the 1-3/4" ring wafer. These bags can be either high output drainable or roll up, your choice. I will also send 20 Eakin seals, one Hollister belt, and one tube of Convatec Stomahesive. Additionally, I will include 50 REMOVE adhesive remover wipes.
All for no cost. I will also pay for shipping. Get me your address, and they will be on the way.

Rick.....

Andyangiet,

What size do you wear as far as stoma size? Also, are you flat or convex wafer?

With a little luck, I may have some of your size. Almost all of my stuff is Convatec.

If I have anything that will help, it is free.

Rick.....

I want to say thanks for all the concern from everybody!! I had called Coloplast and they sent me some samples of some new wafers and that were less expensive. They work great right now and hope they will continue to work. I also caused a big fuss with my insurance company and got them to pay a little more, so that turned out good. I have just gotten out of the hospital, so that is why it took me so long to get back to everyone. It is good to be home, a few months in a hospital is no fun. I just wanted to let everyone know how much it meant to me that so many care. It is nice to have people who deal with the same stuff and have to go through the everyday stuff I do. My husband doesn't understand what I have to go through and can't understand what I mean. He tries, but it is still hard for him even after 6 years.

One option would be to contact the supplier and see if they have a patient assistance program. I was able to do this through Convatec the year my insurance decided they were not going to cover ostomy supplies. They base it on annual income level. It was well worth the paperwork that had to be filled out. Call around to more than one supplier. Good luck!

I'm so sorry to hear, I too am having this problem and have thought about robbing an ostomy supply place numerous times but I haven't the guts for it haha but seriously get in contact with all the supply companies that make what you need, most understand your situation and will give you supplies for up to 6 months so you get two companies your taken care of for the year, call Converted and Hollister both been great with me, I'm sorry to hear about your insurance company I'm sure they can't do that but who know they change the rules on us in the middle of the game ass munchies anyway give them a call good luck and hang in their, let us know what happens.

allegromedical.com is what I used to get my supplies from they weren't bad in prices for my supplies know since mine is a permanent one being w veteran I get my supplies that way

I would be forever in your karma debt if you had any 1-3/4 flanges and pouches to go with them I'm using spray on adhesive and duct tape at the moment and the adhesive packs one hell of a sting. I have been doing everything I can to get my supplies for the last 7 years, I lost my job, insurance, and now live next door to a chicken fucker. So life hasn't gotten to bad. But yea if you have any extra still please do get a hold of me, and thank you so much.