I get severe stomach pain in the right upper quadrant, nasuea, followed by vomitiing. Sometimes the sclera (whites) of my eyes turn yellow on the sides. In most cases, I experience pruritus (itching) all over my body after symptoms have subsided, and the itching can last up to a week.
I posted my blood work levels in a previous post, I've had blood drawn a handful of times last month.
Hey there Textbook,
I am glad you got an appointment with your GI doctor. Hopefully you start feeling better soon! You'll be in my thoughts today. Keep us updated on everything. It does seem odd to me that you have had so many of these in recent months. Don't ever be shy about pushing your physicians for answers to these questions.
Hi Textbook, I, like everyone else here, have Primary Sclerosing Cholangitis. Along with this diagnosis I was also diagnosed with Ulcerative Colitis, they usually go together, you might want to check for that as well. I know all too well about the itching my friend, I seem to only get it on the bottoms of my feet. When I do, and when it's bad enough, I find the closest carpet and rub my feet on it, like a wet dog. This is soon followed up by large blisters. This, at least in my case, is due to increased bilirubin levels in my blood. Why the itching occurs only on the bottoms of my feet is still a mystery to all. Thankfully, this disease is possible to live with. I was diagnosed with both aforementioned diseases at the age of 2, (PSC is rare to begin with, but only 15% of patients with it are children). To my recollection I never really had any pain, though I have a very high pain tolerance, they often don't give me pain medication for my liver biopsies. I received my first liver transplant at the age of 7 and, after 6 months, I was re-diagnosed with both diseases. Only 4 months ago I received my second liver transplant. I'm sorry to say, but your days of fatty foods and processed sugar are going to drastically decrease (if you don't want more pain and/or itching). The best things you can do when having a flare-up with itching, is to DRINK WATER and AVOID SALT. Trust me, this is no easy task, I'm 16 and have been dealing with this my entire life. It is doable. Good luck, and, if you have any questions at all, from symptoms to medications, feel free to ask, that's why this page is here.
I went and got my blood drawn this morning so that it would be available for my doctor's appointment this afternoon. Blood results show elevates liver enzymes but my white count is normal. I saw my doctor and he told me to go to the ER. I drove to the hospital and I was admitted. I am staying here overnight. I have thrown up four times today. They have me on morphine for the stomach pain and zofran for the nausea. I will see my doctor tomorrow morning, and I will ask him what we're doing.
Thanks everybody!
I talked to my primary doctor on Tuesday morning at St. John hospital (same hospital I stayed last month) and he asked me when my appointment with UM was. I told him I had just faxed all of my records over and they were supposed to call me back to schedule the appointment but I didn't currently have one. He said he knew the person who ran the Hepatology department at UM. I asked if he could make a call. He made the call and informed me Tuesday afternoon that UM hospital would accept my transfer. Once they told St. John a bed was available, St. John discharged me and my wife drove me to UM (it's about an hour away). UM has pulled my blood a few times and performed an abdominal ultrasound. They've also had me on IV antibiotics. Many doctors and residents in the hepatology department have come to speak to me and each one said they wanted me to get an MRI before anything else. We've been trying to get an MRI since Tuesday night, but it's not happening. It's now Thursday and one of the liver residents just called the MRI scheduler and they said "no way, not today" so I am going to be discharged and they will schedule the MRI as an outpatient appointment in 2-3 weeks.
When I asked if there is anything I can do to prevent another episode, he said no. He said they are spontaneous and there's not really anything I can do. If I have another episode, I have to go back to the ER.
My most recent episode started Sunday night and lasted pretty much all day Monday. By Tuesday morning I was feeling fine again, although suffering from a pretty strong headache. I'm not sure if that was caused by the morphine, or throwing up four times, or a combination of the two. The headache lasted until Wednesday evening and I can say right now that I feel perfectly normal. I am just hoping that I can get the MRI soon and that I don't have another episode for a while.