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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