I have been lately experiencing seriously disturbing pain in my right abdomen, whenever I eat something, I face massive indigestion, followed by this pain. I do get some bowel movements, but sometimes they don’t. When my last stent was removed this May, the doctor was convinced that I have IBS too, along with PSC. I don’t know what is the current state for IBS, my only current medicine is ursodeoxycholic acid and that’s about it, however, the itching just don’t stop, sometimes it’s too much that I have to hold ice in my palms to relieve the itching.
Please do help if there is anything I should try to relieve myself from the pain, I have been trying myself to see what foods cause discomfort and what’s not. But it’s not helpful.
Is there any medicine I could try to relieve myself from colon problems or if it helps in activating bowel movements. Is there any exercise I should do.
Please help.
Mithilchandok,
From what you describe, it sounds like you have another blockage in your bile ducts. How much URSO are you on? I took 1200 mg a day which helped thin the bile, but even that doesn’t prevent the PSC from causing the strictures/blockages. You probably need another ERCP soon to check all this. I’d ask for your CMP panel to be run again and check your bilirubin levels, etc.
Of course when there’s not enough bile flow, there’s nothing to break down the fats in our food in the digestive tract, etc. First of all, you need to make sure you are drinking “at least” 1/2 gallon of water a day. I kept a jug in the fridge just for me and made sure I emptied that. Drinking tea and sodas doesn’t count towards finishing that jug of water. Then you may try taking some Miralax to get your bowels moving again. Be careful though as too much will cause it to get too much moving. If you have a really bad blockage of bowel, a bottle of “Magnesium Citrate” drink the whole bottle and it acts like drain cleaner and in a few hours or less things will move pretty quickly.
The itching is another strong indicator that you have a blockage in your bile ducts. Ask your doctor about Rifampin. I took 300 mg twice daily and it eliminated my itching by 98% usually.
Finally, are you seeing a hepatologist or just your local GI doctor? If you are not seeing a hepatologist, please contact your closest major transplant hospital and get an appointment with one soon. I trust you will get some relief soon.
Mark
PSC 2011 / Liver Transplant 2015
Hi Mark,
I am taking 600mg of URSO daily, more than that I am bit unable to afford. I have recently lost my job so things are a bit of crazy here.
Is there really no other way to live without having multiple ERCP’s a year. I do drink a lot of water infact more than 1/2 a gallon.
What is Magnesium Citrate? I have never heard of it, but I will try to find more info on that.
I will try to find Rifampin drugs from the drug store.
Also, I want to ask you about the case of treatment done with ‘vancomycin’, here is the link:
http://sm.stanford.edu/archive/stanmed/2011spring/article6.html
Would it really help in my case?
Thank you for such a kind support from this community, I am truly overwhelmed.
Mithilchandok,
Sorry you have lost your job recently. Regarding URSO, although it isn’t a cure for PSC it does help give some quality to your life as the disease progresses. I wouldn’t say it’s absolutely necessary but it will help you feel better to a degree at least until things get really bad towards a transplant.
Regarding multiple ERCP’s, every patient is different. I had PSC at least diagnosed PSC for 4 years before I needed a transplant. At diagnosis I had an ERCP which gave the definitive correct diagnosis that I had PSC. I then probably went 1-1/2 to 2 years before I needed another one. Then the final 3 were within 1-1/2 years of each other with two being just a month a part. Your body will tell you when you need another ERCP. Your bilirubin will shoot way up, you will feel really bad with lower right side back pain and RUQ pain. You will just feel really lousy and know you must have a blockage. So, just listen to your body and it will tell you when you need another one. It is recommended however, that you have an MRCP at least once a year to track the progression of PSC. Most hospitals have a patient assistance program, so if you are without work or in the right income bracket, you may qualify for help.
Regarding Magnesium Citrate, it is used for a variety of needs in liver patients. Prior to transplant I used it to control cramping in my legs, feet, etc. It really made a difference to quality of life issues. I think when the liver is sick especially it depletes magnesium. I took 800 mg of it each night before bed. Now that I’ve had my transplant, I have to take it twice a day due to the immune suppressant medications I’m on. Here’s a link to the site I buy mine from. You buy one bottle of 200 and get three free.
http://www.doctorvitaminstore.com/4260_MagCitrate.html
The Rifampin is a prescription based medication so you will need to ask your doctor about that to try for itching. It doesn’t work for everyone, but it worked wonders in my case.
I’ve heard of using Vancomycin for treating some liver diseases but I just don’t know enough about it to give a good opinion. Perhaps another in the forum here will chime in on that topic. There are probably some other posts out there as well along the same lines. The article you referenced was written in 2011 which is the same year I was diagnosed. It was never mentioned to me as a form of treatment for PSC.
Well just take one day at a time. I know this disease can be overwhelming, but the more you educate yourself the more you will have a clearer picture of what to expect. Make sure you have a good support system in place. You really need to take someone to each appointment who will be your advocate, remember what the doctor says and help with asking the questions you forget to ask 
Take care and stay in touch.
Mark