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I need some help and hope and i am hoping someone can help me. I have had my J Pouch for about 15 years. Everything was ok till a couple of years ago. Started pouchitus one right after the other. My wonderful GI doctor that has been there for me forever, said he did not know what to do. I was having a lot of pain like contractions and when it would start i would just breath until it was over. I lost most of my bowel control. He sent me to the Cleveland clinic. The doctor did a scope and new right away because of all the infections in my J Pouch it has become week and the pain is the spasms and that is why i lost control. He put me on Belladonna/Opium and it gave me back my life no pain and most control back. The bad thing i had to quit my job because the medicine is so strong it keeps me from evening driving very much.
Well i got social security first try from what i heard was very lucky.
So the problem is in Nov i have to go on Medicare. With my husbands insurance now i pay 30 dollars a month for 60 suppositories.
I started looking into medicare and was over whelmed. The medicine is 1300.00 a month without insurance is 15 thousand 600 dollars a year.
Since we are down to one income now and it looks like even with medicare part D for prescriptions it is not even listed as one of the medicines it pays for and for a year its around 4000.00 total for your medicines. I don't know what to do we cant afford it at all but the idea of going off it and getting sick again permanently is more than i can bare.
Is anyone taking this medication and can help from somewhere.
I am going to e mail my doctor at Cleveland clinic and see if he can help me or know someone that can.
I also thought about writing the company that makes it.
I don't want to loose hope but so scared if i cant get help i cant take it and than my life will be over.
Please Please if anyone knows of anything or is in the same bucket as me please let me know.
I do feel so alone.
Thanks so much for your time
Frances
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I am also taking the suppositories and I am on medicare. You are right, they are not on the list of meds, so it's about $900 for 60. I did find a few coupons online and the pharmacy at CC did take them ( this got it down to $900). I live in FL and there is not ONE pharmacy that will fill this prescription for more than one box. They have very strict opiate laws here. I'm assuming you are seeing Dr. Shen also. His wonderful secretary has to HAND carry my script downstairs to the CC pharmacy and then they mail them to me. I really don't have any advice, except stock up if you can. I have a kock pouch, so only use them once a day at bedtime. Sometimes I try using them every other night. I'm not seeing the dramatic results that you mentioned, but it has helped the spasms i was having. I also tried the liquid opium (didn't help me that much) and it was a struggle to get the insurance to pay for it. Dr. Shen had to write a letter, once again his secretary teresa is fabulous at handling this.
Good luck, i would definitely contact the company and hopefully they would do something for you.
Please post if you have luck with contacting the company.
Yes you are right i see Dr Shen. I have been on the suppositories about 2 years and need them every 12 hours. I have to call Theresa every 3 weeks and she sends me the script in the mail. I cant afford what you even pay so i dont know what i am going to do. No medicine should cost that much. With the other medicines i take my limit will be 2 months then nothing. I have to find something i cant go back to pain and no control. Even with taking it every 12 hours i still have leakage issues and some accidents at night. Thanks for spending the time to write back. Its nice to know i am not alone but my future is very scary.
Have a good evening
Frances
Im curious as to why you think you have to go on medicare D for your medications? ....aren't you still going to keep your husbands employee group health plan? You can have both medicare and his plan...and if you do, you should be able to defer the medicare part D prescriptions bc you have credible coverage...if you were to lose your husbands insurance you would then just show you had the coverage to get on the D plan...I would call medicare and confirm all of this...worth a try....
Hi Goldie,
That is were it gets a little confusing because my husband is going to be retiring and not sure how long they are going to has spouse medical they are slowly eliminating it. So i am going to see about having medicare and his ins as my second ins. but we dont know how long that is going to last. He has to do more researching and call them. They wont talk to me i am not the employee. He said he will call them tomorrow. I hope he does because the stress of this is making me sicker. Thank you for taking the time. I added that to my questions.
Thank you
Frances
You are entitled to continue coverage through COBRA for at least 18 months after he retires, as long as they offer plans. You will have to pay the premium costs though. Expensive, yes. But as my husband and I found out (at least in the county and state we live in) the employer sponsored plan was much better coverage than what we'd get on the open market. We don't qualify for Medicare yet. It is complicated if you become eligible for Medicare while you are covered under COBRA, so be sure you get all the details.
http://www.medicareinteractive...script&script_id=127

When you say they are planning on dropping spousal coverage, do you mean not allowing family plans or they just will not pay for dependent coverage? Our plan has always only been free for the employee only and we had to pay for my spousal coverage.

Jan Smiler
My husband works for the city so i have always been under his health insurance over 30 years. Very lucky to have had that. I am 53 will be 54 next month and my husband just informed me that in order to keep his insurance i must be 55 when he retires. But the spousal insurance will be for 3 years and than it will be medicare. Since i had to quit my job about 2 years ago we are down to one income and back to living paycheck to paycheck. He could have retired last Jan. but stayed for the 2 years waiting period that social security requires.
If he stayed working i would stay on his ins for at least 3 years but he needs to retire he has bad feet and he works outside on his feet all day. I carry enough quilt that he has to still work. He says he does not mind but we have been married for 30 years and i know better.
We cant afford cobra i looked into it.
I have a couple more things that i am going to look into. I know in my heart that i can find help somewhere.

Thanks for taking the time to write
Frances

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