Hi guys, I got newly diagnosed on Friday. The doctor is waiting to have a long talk with me until the endoscopy so he can see extent of damage. He was also waiting for my blood work to absolutely rule out everything else, but it all came back negative.
In the meantime, I am having awful abdominal pain every time I eat. There doesn’t seem to be any rhyme or reason to what it is–it’s basically everything every time I eat. I’ve lost so much weight and I’m weak as a result. I’m planning on calling my doctor on Monday, but in the meantime I was wondering if anyone had advice on how to deal with this.
Thanks in advance!
Welcome to this PSC forum. I’m sorry you are having to go through all this but we are here to help in any way we can. Just a few questions
that may help in answering your question.
Are you having pretty serious itching?
Are you having any lower right back pain?
Fever? if so, how high.
Are you having any difficulty with your bowels?
In the meantime, I’d encourage you to avoid foods high in fat/greasy foods, like french fries, and other fried foods. Not to say you have to just quit eating them all together, but to hone in on the problem we need to start there. Try drinking ginger-ale to try and settle your stomach. Also, try taking 3 simethicone capsules at one time in case you have a gas buildup in your gut. This may bring some relief. Will wait to hear from you.
What you are describing are classic PSC symptoms. From your description, it does sound like you have a bile duct stricture that is blocking the bile flow. Your bilirubin is most likely elevated pretty good which is causing the itching, the lower back pain, etc. You probably are going to need an ERCP procedure which I assume is the endoscopy your hepatologist is describing. One thing I would caution you about, make sure that the procedure is being performed by a specialist in advanced endoscopy. Someone that does ERCP’s every day almost. You don’t need your local GI doctor or a resident that is still learning about the procedure, etc. working on you. The higher the experience level, the lesser chance the procedure causes you pancreatitis. I hope they will do the balloon dilation technique and avoid stents if at all possible. Sometimes they cannot be avoided but need to be changed out every few weeks if they do use them to avoid infection. I’ve had 5 of the procedures and did ok. It’s not always pleasant afterward so expect to throw up a few times that evening. But you should notice relief from the itching and other symptoms pretty quickly once those ducts are opened up.I’m sure you will do just fine.
If you should start running any fever and it gets up over 101.5 you need to head to the ER and tell them you are having a possible cholangitis attack. They will get you on IV antibiotics to get the infection under control.
For itching, there are a number of remedies folks use. We are all different so will respond to things differently. For me, the only thing that brought relief to my itching was a prescription medication called Rifampin. I took 300 mg twice a day. That’s just one option to consider. Check with your hepatologist for guidance.
For nausea, you might want to ask your doctor about prescribing Zofran. It’s a good anti-nausea medication that doesn’t cause drowsiness. I also found that ginger beer also helped with nausea. It’s a lot stronger than ordinary ginger-ale.
For pain, please avoid using any NSAID’s such as ibuprofen, Alieve, aspirin, etc. You can safely take up to 3000 mg of Tylenol a day from what my doctors have told me. Of course with any medication questions, always ask your doctors. We are here to give advice based on our personal experience with the disease but are not physicians.
I hope this helps at least get you started in the right direction. Please feel free to ask anything that comes to mind. We have a good group of folks that are more than willing to help.
Mark Wilson, Moderator
Primary Sclerosing Cholangitis (PSC) Support Group
Thank you so much! I appreciate the wealth of information. I contacted my doctor this morning and hope to hear back soon.
I am going to the Center for Liver Diseases at UPMC in Pittsburgh which is also connected to the liver transplant center. They are supposed to be a prestigious liver center from what I have been told. My doctor is certified in gastroenterology and transplant hepatology and seems very knowledgeable and helpful.
It sounds like you are in good hands. Please, when you go to appointments with your hepatologist, take someone you trust with you to take notes and to be able to ask the hard questions that you may not want to ask or think to ask because of the effects of the disease. It always helps to have that second person to advocate for you especially when things are really feeling bad.
Nicole, colitis and psc are linked. A significant percentage of ucers tend to get psc. One of the main symptoms of uc is abdominal pain. It can also be a sign of psc. But the itching is likely psc. My dermo prescribed momesota, a steroid-based cream. It worked beautifully, but is a prescription.
Glad you will be going to a doc who is a hematologist.