Started off a year ago.
Pain in right side, ultrasound showed polyps in gallbladder. Specialist thought gallbladder is functioning alright, problem is something else.
Had colon bleed - colonscopy showed internal hemmoriod but No colitis.
Pain in right side got worse, fever off & on. Had MRI - showed bile duct is inflammed. LIver specialist did 3 MRI's - 3 months apart. Scheduled for another, ERCP scheduled from GI doctor. Turmour marker test came back negative, bile duct is blocked - benign polyp. Segment 8 of Liver is damaged, inflammed. They are monitoring me for another 6 months - looking for testing for Primary sclerosing cholangitis.
Yet no one can tell me anything. At this point the pain is worse, my pee was brown yesterday. Tested for Celiac disease - negative. I have NOT been put on any meds. Told it is a rare disease, hard to diagnose. Meanwhile I am sick and in pain every minute of everyday. At a loss. Should I demand a Liver biopsy or something? Apparently the Liver dr will not see me until after the next MRI - 6 months from now. Any suggestions?
Last edited by jazydust; 07-30-2012 at 12:17 PM.
When they did the ERCP did they remove the polyp in bile duct? The duct can be stented open if it is blocked from inflammation. You should also be on some pain meds, and given instruction on a low fat diet. Fat stimulates the gall bladder and requires bile for digestion, so will worsen pain. I would consider going to the Mayo Clinic if you can't get better help locally. The GI Dr. should be the primary orchestrator for your care, so please ask questions, and let them know you need help and instruction with how to handle this. This is a serious condition, and if your Dr. is not helpful, I would try to find another GI specialist.
Thanks for the suggestions.
The ERCP hasn't been done yet. Scheduled for late September.
It is the 3rd GI doctor I have seen.
He was to just do an endoscope at first. But told me he was to consulted with the Liver specialist, no one has mentioned anything about unblocking the bile duct. I thought that was up to the Liver specialist.
They asked me all the usual questions, months ago. It doesn't get worst after certain foods. My gallbladder is working fine. I don't drink, and I'm 105 pounds. Always been thin, and eat very little that is fatty. Saw a pain management doctor. Was told after a bone scan, and X-ray that because I am a smallish person & the liver is inflamed - it's pushing on other organs. that could be causing some of my pain.
It's too bad you have to wait so long for the ERCP. Can you request to be moved up into a cancellation spot if one opens up? I think they will remove the polyp and put a stent in the duct if possible to keep it open. It is like a small metal straw that keeps the duct from closing off. That should give you some pain relief. I would ask about any cancellation spots and get it done ASAP. I know in Canada things move slowly in health care.
The Canadian Health Care system can move really slow....I made some calls and hoping to get on a cancellation list soon. Unfortunately the Nurse had NO idea what I was calling about. She knew nothing about a consult or test scheduled. Typical nurse, she told me to take Tylenol for the pain....Does she NOT think I tried that, like 8 months ago. So frustrating.
Thankfully I am stubborn & persistant lol.
I never realized how nearly impossible it can be to get the proper treatment until I started to get sick 1 year ago. YET I work in the health care field, have been a lab assistant or medical secretary for almost 20 years.
Now to find myself on the opposite side of the desk, waiting for treatment, waiting for results or some kind of answer. Is unbelieveably frustrating. I know it isn't true...but sometimes it seems like NO one is listening to me....No one seems to understand what I am going through on a daily basis. Waiting for an answer, waiting for my life to get back to normal is torture.
Thank you for the helpful words.
I certainly get what you are saying. I too am on the "other side" of a health profession, and the more red tape that gets twisted around everything, the more frustrating it becomes. It is bad enough to be sick and in pain, without having to fight the healthcare system, and weasel your way thru the cracks to get what you need. Good luck to you. I would keep trying. Next person might have a clue and be helpful.