I to have not been on for long time. So much happening it's hard to put into words without being even more overwhelmed. About 4 years ago I really started having horrible pain and then no control. Had j pouch for about 15 years with many cases of pouchitis. But this was different and alot worse. Working full time and spending more time in pain and in bathroom. The only way to explain pains sorry guys it's like labor pains that come and I do my yoga breathing to get through them and then run to bathroom. My GI doctor that I love and have had for 20years, said I needed to go to cleveland clinic and was there the next day. He did a scope and said that due to multi cases of pouchitis that my pouch had become weak and was causing very painful spasms and that was causing me to loose control. He prescribed me Bedonna/opium suppositories OMG they through me for a loop. But they helped with pain and spasms, but at first sleeping my speech and could not due much. To say the least I went on short term disability. Had to take every 12 hours suppository and lay on left side one time in middle of day. I got used to them after awhile. The doctor suggested permenet disability due to not being able to drive and limited me in other ways. So shocked I have worked my whole life even having to have time off due to pouchitis. I fell into a bad depression for about 4 years and struggled with my whole life changing again. We tried valium suppositories and alot of imodium but the only thing that worked was the belladonna / opium. Thank god for husband ins it paid for it because it's over $1500.00 a month. Last nov. I went on medicare due to husbands ins dropping spouces. Lost my family doctor even though they said she was on my plan. Found out the hard way after seeing her when I hot bill she was not in my new network. That is after I was told she was, that devastated me and have done everything I can do about it. The Belladonna /Opium was not on it either. Went to cleveland clinic in Dec because he told me the only medicines that worked wad what I was taking. He suggested back to valium suppositories maybe they will help more now. I have been on them since first of year and leak all the time bad cramping. Never know how bad it's going to be day to day. How dumb to say I only leak when I walk even at grocery store. If I can't get to rest room for awhile the button burn is bad and then I of course start to bleed. I keep it all yo myself I just way to tired to talk yo family and friends anymore. Went for j pouch scope and test to see if problem with analysis wall and musleses were weak told I have scar tissue and have not gotten other tests back yet. Doctor said I needed to go back to Belladonna /Opium suppositories that seemed to work. I don't know the form but it's yo my ins that they make an exception and cover it. I got a call and was told it was denied. I just lost it and cried and cried. Thank god I was alone. The person on the phone told me to write a letter myself and have him write a letter not a form. My shrink said she would write one also because she sees first hand every 2 weeks how I am. I'm just so tired of fighting for everything. Try to except what I can't change but I just feel done. Been married 32 years and only real problems we have had is my health. My dad passed away 5 years ago and now take care of my mom thank god she lives couple houses down. But that in itself is so stressful and no one yo really help me my sister gives me Sundays off. My shrink us the reason I think I am still here. She is the only one I can truly talk to. If after writing the letter from me and my doctors does not go good. I truly give up. Please forgive me for going on but feel so alone and defeated.