Over a year ago my life turned to a living hell when Ulcerative Colitis struck at its fullest and my quality of life was 0.
(here’s a link to my previous posting: Does Smoking Really Help UC )
I had all the symptoms described in all of your stories, 20-30 movements a day, no appetite, weight loss, bloody stool, arthritis, and so on. My family life was in ruins and friends were not in my life anymore. Then in March of last year I finally found Dr. Stephen Hanauer at the University of Chicago and he finally started a treatment that got me back on track and where I am today (butr more to that later). Yes, he told me to start smoking and eat read meat, which is quiet the gig if you are 39. And yes he knows a cardiologist who will probably deal with that issue later in my life, which I definitely enjoy again until such time.
I also went through a 10 day hospital stay after he took me off Humira and started me on a regiment of cylcosporin and some other goodies. Over the following months my condition improved considerably and my life started to be fun again.
We have started to reduce a lot of the meds I was taking and progress shows in one movement per day, which is always in the morning right after getting up.
Currently I am still on Cyclosporin (100ml twice per day), 5mg Prednizone, 50mg Mercaptopurine, 4.8g Lialda, 4mg Lopramine, 2 pills per week of Bactrim to avoid Pneumonia ans some blood pressure medicine to fight the issues that cyclosporine causes…and yes, a few cigarettes a day.
The goal is to get rid of the cyclosporine and the prednisone completely over the next few weeks and just make it on the Lialda and the Mercaptopurine. And yes, I will continue smoking (being fully aware of all the issues that can bring), knowing that I still haven’t found a smoker with UC and nobody in my smoking family ever had cancer or related issues. I can enjoy my life again and eat everything, though I am still a little careful with too much fiber.
Hope things are going well for you as well.