Posted 8/15/2015 10:21 AM (GMT -6)
i want to have tea and complain about supplies with you guys :)

I still haven't gotten to the bottom of issue with the supplies I ordered. I hope my doctor will give the thumbs up. I feel kind of dumb, I am ordering some underwear and things that a doctor really shouldn't have to give approval on... He has to laugh when he sees that on the script.

I use edgepark. I set up the account online. it took a few days to get my insurance approved - i actually had to call. after that, i placed my order, everything as free, then they contacted my surgeon's office to get the script and the stuff shipped and arrived overnight. it was really convenient. What i don't understand is why if I want to get mini pouches I need another prescription. I feel bad that they bother my surgeon. It has been concluded that i have an ostomy and i need supplies. That should be enough. Do they contact him every time I want to try a new air freshener?
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!
Posted 8/15/2015 11:36 AM (GMT -6)
btw...If you use Edgepark, please monitor your account closely. I match my insurance EOB of what I'm responsible for to what I actually paid. They seem to be off...sometime by pennies but it builds up over the year. If it's an overpayment then it should be due back to us at least by year end. They claim there is no credit on my account. I'm in the mist of pulling a spreadsheet together to make the comparison.

Also there was a data breach of Edgepark's customer information reported back in Jan 2014. It's file on the Maryland State site: / Try copy-pasting the website. The auto link doesn't seem to be working. You can also try: You'll see Edgepark listed there. I have also downloaded the document. You can email me for a copy. It apparently only affect customer located in Maryland USA. If you are a resident of another State you'll need to go through the state's Attorney General website a search for "Data Breach" or "Personal Information Protection Act".

As for the doctor stuff...I just send my GI and email letting him know my PCP is using an outdated diagnoses and think's I'm still being treated by him for a chronic medical condition. I'm also asking him if there anything such as an annual Ostomy PCP thinks there is. As far as my surgeon is concerned I just need to contact her if there's issues. I'll give you an update once I get a reply.
Diagnosed with UC, July 2010
proctocolectomy with end ileostomy, Sept 2012
Anal stump removed due to complications, Dec 2013
Bye Bye UC!

Post Edited (Peace&Harmony) : 8/15/2015 10:41:59 AM (GMT-6)

Posted 8/15/2015 12:08 PM (GMT -6)
Oh don't get me started with Edgepark...what a pain in the tuccus they are becoming! I am on Medicare with Pa Bl Cross and Bl Shield as my secondary ins. When I had Personal Choice there was never a problem, so maybe it is Medicare? Anyway, they want to know, every month this is, how many days of supplies I have left. How the heck do I know? Sometimes I change every third day, sometimes every second day. Medicare will only allow a shipment if I have just one week of supplies left, so I tell them what they want to hear. I am glad I have extra boxes, just in case, but Medicare doesn't know that.

Peace, my new colorectal surgeon is listed on the form for Edgepark simply because I don't go to a GI doctor, not since my operation. I also have my family physician on there too.
Posted 8/15/2015 12:19 PM (GMT -6)
It sounds like we have things much easier in the UK. It's free for one thing. When I have a problem or want new supplies I just ring my stoma nurses, or see my GP, and someone will sort it out for me. When it was serious (something serious only happened once) the stoma nurse made an appointment for me with my surgeon.

I do think the websites for ordering online make things more confusing than they need to be though. They don't really make it easy to find what you want.
Posted 8/15/2015 3:19 PM (GMT -6)
Christine, Ugg, I have Medicare as my primary too. What number do you give them? Think this is a Medicare thing.
UC 1996

5 asa, predisone, 6 mp
Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3, 2001.
Take down-Jan 3, 2002
Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro
Gall bladder out-Oct 1997
April 2010 bad pouchitis flare-remicade (only 2 doses)
Aug 2010-adhesion surgery
Oct 2013 bad pouchitis flare- endocort, xifaxan, pentasa
Posted 8/15/2015 7:25 PM (GMT -6)
What do you mean "what number?"

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