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I think they would rather my son die....vent.

Posted by on Jan. 14, 2015 at 8:00 AM
  • 72 Replies

My son was diagnosed with Ulcerative Colitis when he was 19.  We did an elimination diet to see if there were foods that were worse and discovered he was gluten intolerant and had some issues with dairy. My son went from 215 to 134 in 6 months and was in the bathroom with bloody stools 10 plus times a day. He was afraid to eat and honestly didn't care if he died. He tried 3 different medications for UC within the first 2 years and the side effects were horrible and did not stop the symptoms only lessoned them. He was given some samples of Asacol from the Dr. and it stopped symptoms, and he was able to eat and start putting some weight back on. He can not eat gluten still but can manages some dairy and not live in the bathroom. It was so hard seeing him so sick and give up on life. He has been on the Asacol for over a year now.  My dh got a different job and was told the insurance was great! What a lie! I have been fighting with them for over a week to get his meds approved and they are saying he doesn' t need them, that the medication is not necessary! Excuse the fuck out of me but it is necessary and the Dr. told them he was on a maintenence dose and this was a lifetime medication. I'm sorry it is so expensive but it works. Are we to go back to being sick all the time and bleeding. Do they just hope he gets colon cancer and dies so they don't have to pay for the meds, WTF!  They told me over the phone that the insurance is still deliberating whether to approve or deny.  so I asked them if they take any longer I can send them some bloody shit in a bag and maybe that will help them out. I am so beyond pissed right now. Just needed to vent. Hope you ladies are having a better week than me.  As of 9 a.m. this morning the insurance company denied his medication and stated he had to try and fail 3 other medications before they will reconsider.  So pissed off right now.

by on Jan. 14, 2015 at 8:00 AM
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Replies (1-10):
MissMackiesgg
by on Jan. 14, 2015 at 8:19 AM
1 mom liked this

{{{{{{{HUGS}}}}}}}

These are for you and your son.

Have you talked the pharm co. and asked if they can help till your ins decides? When my brother had his heart attack, a couple helped till the va started helping.

ctownjessiejo
by on Jan. 14, 2015 at 8:36 AM
1 mom liked this

I'm sorry :( I hope it all works out for you. He could always apply for medicaid for himself.

kellly
by Member on Jan. 14, 2015 at 8:36 AM

Thank you, no the pharmacy won't help but the Dr. office gave me some samples last week. He is almost out. The Dr. called and said the insurance denied it but that wasn't true bc I called and they said it was still pending information from the Dr.. The Dr. has sent over information 4x and suppose to have called but insurance company can't seem to find any of that information. The Dr. called in a different script while it is still in pending status which completely screws me bc now the insurance company will feel like they don't need to approve it. The problem is there are reveiws on the internet about what he is telling him to switch to and some of them are horrible, put them back into flar ups with bloody stools. Why change something and play around with that. Once you flare it is almost impossible to get it under control again so why go down that road when you have something that works. I am going to document everything and request denial letter from Dr. office, which they won't have bc it is still pending information.  I think the Dr. just doesn't want to deal with it anymore but I really don't want to go down the bloody shit road again soooo he needs to get off his ass and give them whatever they need UNTIL they acutally deny it. Thank you for the hugs. I want to stab someones eye out...not yours though lol.

kellly
by Member on Jan. 14, 2015 at 8:40 AM

He could but he is still covered under his dads insurance.  Medicaid will not pay for the prescription he was on and will only pay for the cheaper options he has already tried.

Quoting ctownjessiejo:

I'm sorry :( I hope it all works out for you. He could always apply for medicaid for himself.


ctownjessiejo
by on Jan. 14, 2015 at 8:42 AM
1 mom liked this

That really sucks. I really hope your insurance stops being dumb.

Quoting kellly:

He could but he is still covered under his dads insurance.  Medicaid will not pay for the prescription he was on and will only pay for the cheaper options he has already tried.

Quoting ctownjessiejo:

I'm sorry :( I hope it all works out for you. He could always apply for medicaid for himself.



AcheronsWoe
by Member on Jan. 14, 2015 at 9:00 AM
1 mom liked this

Is the doctor a specialist?  If not, if he's a general physician or family doctor, go immediately to a specialist.  If he is, ask for a second opinion (make sure it's to a doctor YOUR dr will back up) and go there.  Take him to the ER if he has a flare up, any time he is not taking the medication he works well with.  Get as much documentation from as many different sources that will agree that the medication prescribed is the best one.  When he IS on the medication, make sure he sees the doctor who will chart that your son is doing better.  It's a PITA going to the doctor so so much, but I've been down this road where my son's father's insurance refused to pay for the name brand immune suppressant and insisted on the generic, which put my son's health at risk.  Good luck!!!

kellly
by Member on Jan. 14, 2015 at 9:09 AM

Thank you!  there is no generic for Asacol for us to even try.  He has seen a specialist and it is the specialist GI doctor that told the insurance company this is a maintanence medication that has worked for him for over a year. They don't care. They just got the denial letter this morning saying my son has to try 3 different medications and fail before they will reconsider.  WTH!! so lets purposefully play with rectol bleeding and possibly colon cancer bc it is cheaper? I hate insurance companies.  My dh will take this over, obviously I am too nice and he being a former Marine is going rip some ass. So pissed off right now.

Quoting AcheronsWoe:

Is the doctor a specialist?  If not, if he's a general physician or family doctor, go immediately to a specialist.  If he is, ask for a second opinion (make sure it's to a doctor YOUR dr will back up) and go there.  Take him to the ER if he has a flare up, any time he is not taking the medication he works well with.  Get as much documentation from as many different sources that will agree that the medication prescribed is the best one.  When he IS on the medication, make sure he sees the doctor who will chart that your son is doing better.  It's a PITA going to the doctor so so much, but I've been down this road where my son's father's insurance refused to pay for the name brand immune suppressant and insisted on the generic, which put my son's health at risk.  Good luck!!!


cheetah90210
by Silver Member on Jan. 14, 2015 at 9:09 AM
1 mom liked this
So sorry are you speaking to the superior? I'm having issues with my husbands insurence now well not the insurence but the job adding me on because its not enrollment season but I have no insurence and I'm pregnant other then that the insurence is great we have blue cross
Nohora
by Bronze Member on Jan. 14, 2015 at 9:10 AM
2 moms liked this

I'm sorry for your son. Conventional medicine is the worst, go to a functional dr to fix his gut. Is not covered by health insurance but works better and is natural. The only way he can fix his colon is by eating organic gulten free food, no dairy. lost of veggetables on a form of cream soup, prepared with grass feed cow bone marrow broth and supplements given by the dr.

kellly
by Member on Jan. 14, 2015 at 9:18 AM

We tried that first with a homeopathic Dr.  That is why we did the elimination diet and found out about his intolerance with gluten. I believe in natural methods but he is an adult and struggled with the protocol. He couldn't gain weight eating only vegetables, shakes and fish. He was so depressed. Everytime he tried to eat any meat he would flare. anytime he ate fruit he would flare.  The biggest problem is that I also believe he has Aspergers and is just now considering getting tested, but even when the diet was working and there were no symptoms if he stressed out at all he would flare and once you flare it is a 3-7 day thing trying to get it under control. He was already down to 134 and couldn't lose anymore weight, my god you could see his ribs and 20 more lbs and he would look like he was in a concentration camp. The meds keep things under control even when he is stressed out. I don't like meds and always choose the natural route but he is not me and just got tired of feeling so helpless. He has actually had a life not living on the toilet for the last year and couple of months. Now he is depressed again bc insurance company has denied and he is scared. He was on digestive enzymes, aloe vera, chlorophyll and protein shakes. Yes it was expensive and I would pay it again if he wanted to go that route but it didn't stop flares from being stressed and people with Aspergers are stressed.

Quoting Nohora:

I'm sorry for your son. Conventional medicine is the worst, go to a functional dr to fix his gut. Is not covered by health insurance but works better and is natural. The only way he can fix his colon is by eating organic gulten free food, no dairy. lost of veggetables on a form of cream soup, prepared with grass feed cow bone marrow broth and supplements given by the dr.


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