Ulcerative colitis is diagnosed in nearly 200,000 people a year, but an infection known as primary sclerosing cholangitis (PSC) that stems from the disease can have much more detrimental effects.
Because there is no cure, doctors urge those with the ulcerative colitis to get tested regularly so that if the cholangitis infection does develop, the symptoms can begin to be treated as early as possible for longer continued health.
Local gastroenterologist Dr. Bruce Bradley said patients with cholangitis are at a greater risk of being diagnosed with colon cancer, cancer of the bile ducts or other forms of cancer in the affected areas.
Dr. Jungmin Lee, an internal medicine specialist who does some procedures at the Spartan Health Surgicenter in Monongahela, said ulcerative colitis is an inflammatory bowel disease and once diagnosed, it’s imperative to have your liver monitored periodically.
Some symptoms of ulcerative colitis can include: abdominal pain/discomfort, blood or pus in stool, fever, frequent or recurring diarrhea, fatigue and reduced appetite.
Lee said there could be a genetic component linked to the disease, but overall, there’s no specific reason why a person gets ulcerative colitis and there’s no quick fix or cure. Managing symptoms is the best defense.
According to the Mayo Clinic’s website primary sclerosing cholangitis is a disease of the bile ducts, which carry the digestive liquid bile from the liver to the small intestine. The disease creates inflammation that causes scars within the bile ducts and as a result the ducts become hard and narrow and gradually cause serious liver damage.
“In most people with PSC, the disease progresses slowly,” the website said. “It can eventually lead to liver failure, repeated infections, and tumors of the bile duct or liver. A liver transplant is the only known cure for advanced primary sclerosing cholangitis, but the disease may recur in the transplanted liver in a small number of patients.”
Care for cholangitis focuses on monitoring liver function, managing symptoms and, when possible, doing procedures that temporarily open blocked bile ducts.
Lee added that there is no cure for cholangitis either and while managing symptoms through antibiotics and other ways can hold the disease at bay, it can progress to a point where a liver transplant is needed.
“There is no medical theory out there right now that would delay or halt the progression, but there are many new studies and clinical trials going on worldwide looking for treatment of PSC,” he said.
Jim Erjavec of Cardale has traveled the road of ulcerative colitis for 37 years after he was diagnosed at the age of 10.
“I was just so sick, and I couldn’t keep anything down for two days and was close to dying because I was so severely dehydrated,” he said. “We thought it was the flu, but after testing they diagnosed me with ulcerative colitis.”
For the last eight years he has been dealing with cholangitis.
“I went in for my routine checkup back in 2007, and they saw that my liver numbers were slightly elevated,” Erjavec said. It took four more years before they diagnosed him with cholangitis.
And while the disease has been kept at bay with antibiotics and other medications, Erjavec said after awhile you’re body just gets used to those medicines and they start the process of looking for new medicines.
“I’m in pain pretty much every day,” he said. “I can’t eat fatty foods and I really have to watch all the time what I’m eating.”
Recently the effects of the disease has taken its toll.
On June 6, Erjavec was having severe stomach pains, his urine was darker and his eyes were getting yellow.
After several tests, it was found that he had a bunch of stones in his liver that had to be brushed out. Samples were taken to rule out cancer, but the procedure didn’t work as doctors had hoped.
The affected area in the liver swelled back shut and a tube had to be inserted under his rib cage to help with bile draining from the liver to the small intestine.
“Because of reoccurring infections and the fact that my bile ducts are so scarred and so narrow, the only option for me now is a transplant,” said Erjavec.
Most of his family members are older or have a different blood type, but he has some friends who have signed up to be tested.
“Other than my liver, I’m still pretty healthy, so I’m hoping to get a living donor and a transplant as soon as possible while I’m still healthy,” he said.
The University of Pittsburgh Medical Center’s (UPMC) website on transplant services said that during a living-donor liver transplant, a living person has a piece of their healthy liver removed and transplanted into another person to replace an unhealthy liver.
“These transplants are possible because of the liver’s unique ability to regenerate, or regrow,” it said.
By identifying a living donor, patients with end-stage liver disease can receive a life-saving transplant much sooner than if they waited for a deceased-donor liver to become available.
“This saves the life of not only the recipient of the living-donor liver transplant, but a second candidate waiting on the liver transplant waiting list,” said UPMC’s transplant services website. “The candidate on the list can now receive a deceased-donor organ that would not have been available to them without the living-donor liver transplant occurring.”
Erjavec said he has been overwhelmed with the amount of people who have shown support.
“I’ll be walking down the street and someone will stop me and tell me that if they’re a match, they’ll do what they can,” he said. “There’s just such an outpouring of support from random people.”
Those interested in being tested as a living donor for Erjavec or others can visit https://www.upmc.com/services/transplant or call 833-238-6343.
“Consider becoming an organ donor,” Erjavec said. “There’s such a shortage of donors and there are a lot of good people who are very sick. The risks are minimal compared to the reward of saving a life.”