Newbie - Husband Diagnosed Recently / Where To Start!

Hey everyone …

So my husband was diagnosed with UC when he was 14. He missed a lot of appointments due to family circumstances and not getting to the hospital. Because of this, he missed a hospital letter stating he may have a disease PSC (we only found this letter a month ago - dating back to when he was 19). Because of me forcing him to go to the hospital, the docs later diagnosed him with PSC - in February 2017. He’s had MRIs, Ultrasounds, Colonoscopy etc. Latest hospital appointment the doc told us to check out the British Liver Trust. My husband has been losing weight fast and at the moment suffering from a stomach bug that I recently had. He doesn’t always tell me when he’s got a flare up as doesn’t like to worry me. But I am concerned because I need to know these things to be able to help him. Sometimes has bloody stools I have figured or bloody urine. What can I do to help him? Any vitamins to take or avoid? He avoids lamb and beef - mainly eats chicken or fish. And doesn’t eat seeds or nuts. Please any advice is welcome, I am only 21 - my parents are really helpful but I need advice from others who have gone through the same. My husband is 27 fyi. Any advice is very very appreciated as I am stumped as to where to start.

Sorry about your husbands diagnosis but welcome to the PSC family. One of the most important steps in his care will to be sure he’s under the care of a hepatologist associated with a transplant hospital. We have had a number of patients from the UK to join this forum. Just for starters, I would like to post a reply I made to another UK member back last year. It will give you a bit of information to consider for the days ahead…Do feel free to reply with any questions you might have.


fcmmark Moderator
November 11
Hello. I know that the diagnosis of PSC liver disease was quite traumatic to you as you think of your life and your family. I do want to give you hope that there is a future out there and that with good management of your PSC you can live a pretty normal life during the early years of diagnosis. The very first thing I would recommend to you is to go to a major hospital there in the UK that does liver transplants such as the Queen Elizabeth hospital and put yourself under the care of a hepatologist. This is a physician that specializes in the diagnosis and treatment of liver diseases. Most regular GI doctors are not fully qualified to deal with such a life threatening illness like liver disease. I want to direct your attention to a video link I will provide you of a patient with PSC in the UK that had a liver transplant at the Queen Elizabeth hospital. I’m not suggesting you are there yet, but hearing this patients experience who is one of your countrymen might be a comfort to you. Once you find a good hepatologist, there are medications they can prescribe to eleviate your itching. All of us here on the site have our favorite remedies for itching, but for me the only relief I found was by taking a medication called Rifampin. I took 300 mg twice a day for 4 years prior to my transplant. You might ask your GI or hepatologist about this medication when you see them. As far as the other symptoms you mentioned such as pale stool and dark urine, these all go along with liver disease. Make sure though that you are drinking plenty of water each day. Also, many patients who have PSC also either have UC or develop it later after diagnosis. You might also ask your doctor about Ursodiol. This is a medication that helps thin the bile so that it will flow better through the beaded strictures of the bile ducts. With the itching you are having you may need to have an ERCP to clean out your bile ducts. This is an endoscopic procedure that needs to be done preferably at the transplant hospital by a doctor that does this every day. It is a very invasive but effective procedure but needs to be done by a highly skilled advanced endoscopist. I wish you well and I hope you will feel free to post again any questions or concerns you might have. Here’s that link. This was from a course I took on liver transplantation through the University of Birmingham.

I am sorry your husband has been diagnosed with PSC. I’ve had it for 17 years with no transplant. I remember how scared I was when I got the diagnosis. The first thing I was told was no two cases are alike although there are similarities and the second is there is no cure yet. The hopeful news is the doctors all over the world are looking for treatments and cures. I have been in 3 clinical studies in Sacramento, CA. The first two failed but I had good results from the third. I am confident they will find treatment and cures in the next 2 to five years. Right now I am not taking any meds for PSC except I take pancreatic enzymes which help digest food in absence of bile.
It is very important that your husband find a good hepatologist. Even better is a hepatologist who specializes in non-viral or cholestatic liver disease. You need to be put on a regular monitoring schedule to monitor complications. You should get an annual MRI or ultrasound to check your bile ducts,liver, spleen and pancreas. You are at risk for a deadly cancer called cholangial carcinoma. It is important to catch it early. You need a colonoscopy annually or every 18 months to monitor your UC and to survey for a deadly form of colon cancer. PSC is a risk factor for this cancer. You will need monitoring blood tests that include a complete blood count and a complete metabolic panel. You also need to discuss with your doctor the symptoms of bile duct infection and when you need to go to the hospital. Most people with PSC have itching. Your doctor can prescribe meds or light treatments. Many patients, including me, get fatigued and many do not. The most important thing is for the patient to pay attention to his body and get to know how active he can be. Also the patient must be in charge of his own health. Don’t be reluctant to ask questions and don’t stay with a doctor who doesn’t answer them. If you keep your complications at bay, keep doctor appointments, eat sensibly ( no alcohol) and love your liver you can have a very full life for years or decades without a transplant.