Hi, everyone, I’m new to this group. First of all, I’m the mom not the patient. My son who is 24 was just diagnosed last week. This came out of left field for us. We havent even seen a Hepatologist yet. We have an appointment on June 16th at Weil Cornell in NY.
Background: my son was diagnosed with UC when he was 6 years old. He was more acute than chronic when it came to flare ups. Had about one a year, usually in the fall. He had his last major flare up when he was 14. It was the worst one he ever had. Was on asacol for many years and then they added 6mp. Fast forward to last year. It dawned on me that he had not been seen by a gastro for about 3 years and I figured he was overdue for a colonoscopy. As luck would have it, he started a flare the night before. Oh, he stupidly refused to take his medication around age 16. He said he was fine and didn’t need it, wrong! Anyway got him to see a new doctor and they did the usual battery of tests. They found that he had a number of precancerous polyps. So off to the surgeon. Jeff had his entire large intestine out in June 2014. We were under the delusion that this would cure his disease. Had another surgery to connect to the j-pouch and then the problems started. In March, 2015 the decision was made to take him off the j-pouch for 6-8 months for complete bowel rest. Last week he calls me and tells me he is jaundice. Off to the surgeon. He orders tests, etc and put him back in the hospital. After having a sonagrm, MRI, and that endoscope, they cleaned out his bile ducts and found evidence of liver changes. PSC. Why in everything I read about UC is this never mentioned? I feel like I’ve been punched in the gut. So, here are my questions. What is done to treat this disease? How does it progress? I’m so confused, I don’t know where to start. How do I know when the disease gets worse? What should we expect? Like I said, I’m so confused. What ever information you folks can give me, I’d so appreciate it. It’s been such a stressful and intense year for our family. We feel like we can’t plan anything because we never know how Jeffrey is feeling. Our life has been on hold for so long, all revolving around our son. Will we ever be able to live again?