The ulcers that ate my liver away

It started as a mild discomfort accompanied by diarrhoea that just refused to go away, even with medication. 

For the whole of 2011, Anthony Ng’ang’a’s health worsened each day.

“As time went by with no significant changes, I sought the opinion of a different doctor since it was obvious that this wasn’t your usual ill health. After going through a series of tests, the doctor concluded that it was a case of untreated/mutated typhoid,” Ng’ang’a recalls.

But even with this diagnosis, things took a turn for the worse.

“I started experiencing abdominal pains, convulsions at night, sweats, nausea and vomiting. This went on for the whole of 2011, growing worse everyday,” he told My Health.

In early 2012, as he was on a regular visit to the doctor, Ng’ang’a was asked to undergo a colonoscopy for a closer look at his intestines.

“After the test, I was diagnosed with colitis,” he says.

A few weeks later, he was referred to a gastrointestinologist for further checkup.

“All this time I was caught up between school and hospital. It was challenging because I missed classes and at one point I had to sit for special examinations,” he says.

In mid-2012 the gastrointestinologist came back with the diagnosis and confirmed that I was suffering from eosinophilic colitis, a rare form of the disease that can lead to many other complications.

Series of tests

More tests were done to determine whether his body could handle treatment.

One particular test stood out. From the liver function test, the result was that Ng’ang’a’s liver seemed to be overworking, a cause for alarm.

“My condition had at this point deteriorated and an immediate plan of action was required. Even so, the doctor still had to confirm the exact problem in the liver. This meant I had to undergo another series of tests. It was in late 2013 when I started undergoing various liver tests,” he recalls.

In 2014, Ng’ang’a underwent a magnetic resonance cholangiopancreatography (MRCP), a liver test, that led to the diagnosis of ascending primary sclerosing cholangitis (PSC). This is another very rare and dangerous disease.

Unfortunately, and like the eosinophilic colitis, this one too has no known medical cure, and requires management and constant check ups.

One year later, Ng’ang’a’s health took a nasty turn with itching (pruritus), chronic fatigue, mild fevers and chills, weight loss and jaundice (yellow eyes).

“In mid-2015, I was admitted due to abdominal pain which had come as a result of blood not clotting and low levels of vitamin K, plasma and platelets. Every day, the condition of the liver worsened,” he says.

The doctor then suggested an urgent liver transplant to salvage the situation. He underwent the transplant in India. The eosinophilic colitis had spread to the digestive tract, leading to another form of colitis known as ulcerative colitis.

“I am okay now but the condition has affected my life since I have to take heavy medication for immunosuppression to help the body not to reject the liver. I take cyclosporine whose side effect is high blood pressure which can lead to kidney failure. I have to see a doctor once every month,” he says.

He also takes prednisone, an immunosuppressive drug whose side effect is high blood sugar level. 

“I also took mesacol for the ulcerative colitis (UC) before the transplant. UC is incurable, it can only be managed and we have been able to so far,” he says.

MayoClinic describes ulcerative colitis (UC) as an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in the digestive tract. The condition affects the innermost lining of the large intestine (colon) and rectum. Symptoms usually develop over time rather than suddenly.

This is however not a genetic condition.

“Actually the disease that led to the transplant was primary sclerosis cholangitis, which is quite rare. The only known cure is a transplant and the doctors said there is a very low likelihood of recurrence,” Ng’ang’a says.

“I observe very high levels of hygiene so as to avoid infection. What people are doing right now to prevent the coronavirus is what I have been doing for so long. I am now used to it,” he says.

So what is Eosinophilic Colitis?

According to Dr Alemanji Ajua, a gastroenterologist and interventional endoscopist, only a few cases of eosinophilic colitis have been reported worldwide.

“In Kenya, there is no officially published data on the disease. Furthermore, the diagnostic criteria for the disease remains unclear, making a proper and accurate assessment and confirmation of diagnosis rather difficult,” Ajua says.

There appears to be a genetic link to the primary form of this disease which is closely related to other groups of allergic diseases like asthma and eczema. However, this link remains unclear.

As with most genetic linked immune related diseases, environmental factors such as food allergies, especially in children play, a major role. In adults, food allergies are less involved. These environmental factors also remain under investigation.

The secondary form of the disease is thought to be associated with some intestinal infections such as worms and certain medications.

The disease, according to the doctor, presents like a common stomach infection or food poisoning. “The difference is the symptoms tend to persist even after treatment of what is thought to be the stomach infection. Typically there will be some abdominal pains and diarrhoea (bloody in some cases). There is also some weight loss after a while,” Ajua says.

Diagnosis

A stool test may reveal a worm infection and some red blood cells.

The best method of getting a diagnosis is by analysing tiny tissue samples taken from the colon wall during a procedure called colonoscopy.

“A colonoscopy is a 30-minute procedure during which we are able to visualise the large intestine to assess for possible causes of your symptoms. This procedure should be done by qualified personnel only and is quite safe,” Ajua says.

To manage the condition in children, a change in diet with the focus being on avoiding possible foods which trigger the symptoms is essential. A paediatrician and the nutritionist should guide on this.

For adults with no obvious causes (primary type) use of medication to help reduce the immune system’s activity (steroids and others) does help reduce the symptoms very well. However, in some cases, these treatments may have to be lifelong. Eradicating any worm infections is potentially curative for those in whom the cause is worm infection.

“Proper hand hygiene will probably help in preventing this very rare disease. In this time of Covid- 19, the hygiene measures put in place, if adhered to, will render this bowel disease rarer,” Dr Ajua says.

The presence of blood in your stools is an important symptom which requires a rapid visit to a gastroenterologist, especially if a stool test does not reveal any obvious cause of the bloody stool.