Hello friends, my husband was diagnosed in August ‘17 and has had 8 ERCP’s since, inserting and removing short term stents. We decided to go grain and dairy free about a month ago. Suddenly last week he had very low energy, belching and jaundiced eyes. He has never had these symptoms before, just pain and infections. Bilirubin from 1 to 6.4 suddenly.Yesterday his gastro said during ERCP he found large amount undigested food in stomach and a bezoar ( had to look that up—(stone like material that can’t be digested). (Doc prescribed Coca Cola, ha) Last food eaten was 16 hrs before procedure. We are in NY and MELD score of 25 is too low for tx. Has anyone experienced similar. Many thanks and God bless all here!
Never heard of a bezoar before, the low energy and jaundice-sure.
I hope your hubby recovers quickly.
You mentioned his gastro doctor. Does he have a hepatologist yet? This certainly is something that needs to be evaluated by a specialist if this GI he’s seeing is not one. I’m so sorry for all he’s experiencing right now. It does sound like he’s possibly not getting enough bile flow to break down the fats in the food. Does he also have a lot of constipation?
Thanks guys. He does have top Gastro in NYC working with him , an ERCP author and all. His main biliar duct was 3mm on Wed, doc able to diallate and get a 6mm stent in. ERCP Report says duct heavily cannulated, discouraging in light of juicing and no grain diet… he still feels lethargic and urine dark.
Gastro wants him back in two weeks to try and get and get 10 mm stent in. He believes in short term stenting of course.
Glad to hear about the short-term stenting. Otherwise it’s an infection waiting to happen. I hope he will see some relief now that they have the main duct opened up.
He is still pretty yellow and has the overall low energy and nausea feeling with this 6 mm stent. My worry is if stents are short term, will his liver function return to a more normal level when they are removed??
While every patient responds to ERCP dilation and stenting a little differently, generally in the early stages of the disease he will see his numbers go down in the short term. If he hasn’t progressed much he may see relief for as much as several years, but the further along the progression, the relief may be very temporary. It all just depends. The endoscopist doctor that did the procedure should provide you with a report of the condition of the biliary tree, ducts, etc. This will give you a good idea. There may come a day like it did in my case, that they say that further ERCP’s will not be possible thus thrusting you closer to transplant.
Hopefully in his case he will have many years of relief and reasonable health. Just take one day at a time and live life for now and plan for the future. Don’t let PSC stop you from doing those things you hope to do in life.
Mark, when you were at the end of the line with ERCPs, as John may be, what measures can be taken until a transplant is available? His bilirubin now 14.
Yours in faith
Also I recall seeing here somewhere a link to a valuating hospital in transplant success rates. If you Direct me to that link I would be very grateful.