New Member Seeking Advice on Ostomy Supply Challenges

Hi., I'm Julie from the U.S. 43 yr.s old andI've had an illeostomy since I was 4. I was born with spina bifida and I'm partially paralyzed from the waiste down but I'm one of the fortunate ones, I can walk with th aid of short leg braces.  My illeostmy is the same one since age 4, I havent had to have a revision yet and hopefully never will.

I got married at age 21 and lost all my benefits which I had no clue was going to happen until 6 months later. My husband is self employed. I've been fortunate enough to be able to buy ostomy products on Ebay but sometimes I get supllies older then what the seller has stated and the wear time is like 1 day. I have signed up for the convatec ostomy access program where they send you a 3 month supply..which unfortunatly never lasts 3 months. Yesyerday I got a call from Convatec asking me to send in my husbands tax returns to see if I still qualify. I'm afraid they will say no. As of 2 months ago We had to cancel our health Insurance because the cost has risen to high to pay..not that ostomy supplies were covered anyway. I feel I have no other options but to divorce my husband and go on assistance but I dont want to.  I don't know what to do anymore. Any ideas out there? And thank you for reading this.

Julie

Wow, lots of experiences you must have to share with others.  



Supplies:  some companies will give you a cash discount, you could call and ask.  You could also call the manufacturers like Hollister, Convatec, etc and see if they have any programs. UOAA:  check your local chapter and ask if they accept donated supplies; it might be a way for you to get some supplies temporarily.  You might also encounter an ostomy nurse at your local chapter meeting who could do a stoma check/help on supply issues in your particular area.  



Hope this helps.  Glad you are on the forum...you have years of wisdom to share with others I am sure!

Julie I'm so sorry that this has happened to you, Ostomates really dont need this kind of thing happening to their supplies because we depend on them!!! I'm glad  Whoa the Nurse got back to you with some suggestions & I truley hope they work. I have nothing to  offer you , But hope for the future & my best wishes. I live in the UK & on our National healthservice , all ostomates get FREE supplies.Is there any form of Ostomy Charity Or contact group in your state who can help you?? I'm shure there is a silver lining somewhere & hope it shines on you soon.. Oh I am a Urostomate so things are not quite so complicated for me. Anyway all my love & good luck.....Peter..

Hi Julie, Sorry to hear about your harrowing times lass, you must be at your wits end.



I think i may be able to help, i run a foundation that amongst other things, sends donated ostomy supplies to developing countries and disaster areas, and if the following information i give you is of no use to you, then i cant see any reason that the foundation cant assist you in some way.



There is an oragnisation in the states (i'm from scotland by the way) called Friends of Ostomated WorldWide, i think there url is fowusa.com

They also send free ostomy supplies to folks and if you contact them and explian your circumstances they may just be able to help you out lass.



If you have no joy there then send me a message and i will give you my contact details.

Take care lass.x

Julie:

Must be devine intervention...was looking for a conference and bumped into something on a WOCN web page that could help you:



www.ostogroup.org



They say they will supply you and appears they are supported by the major manufacturers!



See what you think....good luck and fingers crossed!

Words of Encouragement from Ostomy Advocates I Hollister

Thanks so much for that research Nurse Whoa---This looks like a great help to our North American friends who may need this service. As  I stated before Ostomates have enough problems , Its help.. that is needed not hassles......Once more Thanks!!!

Hey Julie, how's you, just popped in to see if you have had any luck sourcing your ostomy pouches.

I don't know if this is of any help to you, i have a friend that lives in Tennessee and she has a few hundred convatec one piece drainable pouches going spare, she has switched brands and no longer needs them.

The flanges are pre cut to 1"1/4, so they may not be of use to you.



She was going to send them over here, and then i remembered about this post, so if you think they are of any use to you then let me know and i will arrange having them sent over to you.



I will get back to you with the exact pouch details