9 years ago, I had a complete collectomy and j-pouch. I have recently been diagnosed with UC related lung disease and also found out that my UC is in my pouch with ulcers at the connection site of pouch to small intestine. Also I have cuffitis and pouchitis. I also have a very high ANCA read and have been told by Dr. Targan at Cedars that because of that, I can't take any anti-TNF drugs and that Prednisone is my only option along with rectal foam. I am trying to get UCERIS from Europe as it is not approved in the US and is supposed to be more effective than Cortifoam {which I am on at present along with my oral Prednisone}. The Prednisone is keeping my lungs clear but as I try to taper off, my productive cough comes back. Targan has said that I will need to stay on Prednisone forever and hopefully the foam will help the pouch issues. I have gained 10 pounds, don't sleep well and have intense moods to manage.
My questions are:
Would it be wise to go to either the Mayo or Cleveland Clinic to get hands on help from multiple doctors and go on clinical trials. I know that Dr. Targan is an expert but I feel a but alone navigating this with multiple doctors to coordinate with. I am so worried that because I had dysplasia pre-surgery and am being told that I have a very severe and unfortunate case of UC that will not relent, that I will lose my pouch and or get cancer and not sure what the heck the lungs will do. I am a mom of two and age 45. I feel like I have many years to live and with the lungs and pouch in this shape, I must get help in any form. Does anyone out there have similar issues and if so, what are you doing to heal? Acupuncture, diet, drugs, lifestyle?
A bit overwhelmed.
Thank you for any advice, DPKmalibu