I was diagnosed with UC in Sept of 2002 and have never had my condition in remission. For the past 6 years my entire life has been destroyed becasue of this disease. I have tried everything to get things under control to no avail. I currently have no heath insurance, have been denied medicade, medicare and disabilty--so I have no help anymore. I have spent over $150,000 of my own money trying to get the best possible care and all I have found out is that the GI docs are clueless about this disease. I tried remicade at $8000 per treatment and it did nothing--except take $50,000 from me--I've been on prednisone, imuran, asacol, pentasa, cipro, flagy, you name it, I've tried it. I'm just hopeless now--doctors wont see me, I have no more money, I'm too sick to work, I lost my home, my credit has been destroyed becasue of the bills I couldnt pay and hospitals wont see me cause of the money I owe them.
I use the bathroom upwards of 20 times a day and this has been going on for as long as I can remember, I have not had a normal bowel movement in 6 years, I have fissures that make every bowl movement so painful I feel like Im being tortured, and I cant sleep--if I do actually fall asleep I wake up an hour later soaked in a pool of sweat becasue of the prednisone.
They say all you need to do to survive is eat, drink, and breath and I can only do one of them. All I can do is sit in my home thats been forclosed on and breath, breathe by breathe, praying for a miracle, until I'm actually kicked out of my home--to go where?? I have not a clue what will happen to me. I've lost friends, my family can no longer help, and its all because I got this debilitating disease when I was 22 and in the best shape of my life. I was robbed of my life like so many of you and I would give my life to allow any of you to rid this disease of your body. Why us??? So many of us!!!
The only drug that can give me any sort of normalcy (if you can call it that) is prednisone, but the side effects are tough to deal with. It doesn't stop any of my symptoms, but at least I can make it to the store and back without having to use the bathroom if I'm lucky. I cant find any general doc to even prescribe me prednisone because they feel I should be with a gastro doc--which I have had 8 of--and all they do is make me see them every month (for $100) and then give me my $20 prescription, so now I have to buy the meds oversees--which I dont even know how safe the stuff I'm taking is--but its all I can do now.
I've tried every alternative therapy as well--acupuncture, probiotics, all the weird and strange things you hear about--I've not seen a therapy out there that I have not tried. I fell lucky to have been able to try these things, but now I'm literally at what I feel like is my end. I wish I could be homeless, but with my condition I cant even do that--no toilets out in the street--so what do I do??? The failures of the American Medical System I have experienced all too well and its maddening and sad to see everyone who is in this boat--but its life I guess.
Today I decided to write--to tell all of you I'm sorry for your pain, and maybe to get advice on what to do--I will wake up tomorrow with absolutely nothing left and nothing will change--I'll be stuck in a body that rejects what is needed to survive--and with about a weeks worth of food--until I'll just sit and wait until I'm dead. I can't ask for help anymore--I'm a burden on everyone around me and dont wish to say to everyone that asks and cares that "I'm ok"--I'm tired of telling that lie.
I wish everyone the best--and I'll prey for your health--I just wish I could help you all
Love and Blessings
Angel to be