hi super,
I would imagine anyone fighting any kind of disease is tough, but it is very important to stay positive. The mental part of this disease is certainly not easy to deal with....especially being told you have a 'rare" disease that effects your liver. you will both learn over time how to deal and move forward with your life. Yes, his life style will/should change, and will effect yours.I think you found a good support group. you will find all sorts of ideas and real life experiences pertaining to PSC...your husband is not alone. I was diagnosed in my mid twenties. Full of life like most people, and was very active withen the community. Things quickly crashed and burned when i was told. quit my job, engagement to be married was history, and the blows kept coming. The most important thing for you is to give as much support as possible, but not draining yourself either. I consider myself very lucky is some ways. This disease has made me a better person in a lot of ways.
In regards with medication, he really has to trust his physician. Everyone's situation is totally different, even tho we are labeled with the same disease. this is the way i see it. we all learn how to drive under what ever laws your country implements...but none of us actually follow or obey the laws of the road....same goes with doctors. im sure if you talk to a liver specialist in canada, then talk to a doc in u.s.a or india....they'll give you different opinions. Ive tried medication to control bowel movements, iching, pain, ect. I found they caused more harm then anything, so I dont take anything anymore. granted...again not everyone is the same. I found living an active life style(daily excersise, hot yoga really helps out with bowel movements, and most of all fatigue) followed with a clean proper diet has helped me termendously. yes, the flare ups happen, but not as much. I only find my flare ups happen just shortly having a yearly ercp/colonoscopy prodecdure and a cleaning of the ducts. Im 37 years of age, and been dealing with psc for 11 years that i know of. at first, all the information can be a bit much, and all the test. Make sure your husband completes all of the test. losing weight is very common, and can be frightening especially when you notice its not coming back...hence why i stress the importance of a "healthy diet"...no fast food, take out, deep fried food. My doctor always told me to eat what ever i want as it will not affect your condition, and only pharmacuticals will help mask the symptoms...until this point, i have proven him wrong. even he is surprised on how slowly its progressing (which i thank my boy jesus). positive life style = positive out comes. ultimetley the stronger you are going into a transplant (if and when), the better the odds are. Last but not certainly least....STRESS i find is the number 1 cause of 98% of my issues I deal with. If he eliminates the STRESS, he will find clarity with PSC. I wish your husband well in his new journey.
Kind Regards,
Romeo