IBD, PSC, and Me: The Mystery of the Ornery Body

IBD, PSC, and Me: The Mystery of the Ornery Body
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For the last two weeks, I’ve invited my readers to join me on a quest to unlock the medical puzzle that is my body. I feel like Indiana Jones in “Raiders of the Lost Ark” as he tries to find the ark of the covenant before the Nazis do.

In the movie, the ark is both holy and cursed. The Nazis believe it will empower them with invincibility to win the war. Indiana, on the other hand, realizes that disturbing the ark will bring only destruction. Making sure the ark finds its way into the right hands is a matter of life and death.

My transplant team and I could be racing against time to discover the cause of my elevated liver enzymes. Like Indiana Jones must battle one obstacle after another during his pursuit, I must run a gauntlet of medical tests and procedures before my team can find an answer.

Test. Review. Repeat.

Despite continuing my weekly bloodwork regimen, I was able to briefly let down my guard after an appointment with my transplant hepatologist, Dr. Madhavi Rudraraju (aka Dr. Raju), was postponed. My labs from June 10 showed vast improvement from the previous weeks. My aspartate transaminase (AST) and alanine transaminase (ALT) levels, which were in the high ranges of 76 and 49, respectively, both returned to normal in the teens. Even my alkaline phosphatase continued to lower closer to normal levels.

I thought my health was finally taking a turn for the better. After spending half my life as a medical enigma, I should have known this smooth ride on my health journey wouldn’t last long.

When I logged on for my telehealth appointment last week, I met with Dr. Raju’s nurse practitioner, Ciara, instead of the doctor herself. Ciara went over my most recent bloodwork and the additional notes my transplant team radiologist made regarding my magnetic resonance cholangiopancreatography.

The results of my blood draw on June 17 showed that my alkaline phosphatase remained stable but elevated. However, my AST and ALT had risen above normal levels again. My team concluded that the lower results from a week earlier were a fluke.

The transplant radiologist noted slight dilation in one of my biliary ducts. Gallstones are the most common source of biliary obstruction. Surgeons removed my gallbladder along with my diseased liver, so a gallstone couldn’t be the reason. Less common causes of obstruction include cancer of the bile duct (cholangiocarcinoma), primary biliary cholangitis, and primary sclerosing cholangitis — the autoimmune disease that caused my liver failure.

According to a study published in the journal Transplantation Direct, the probability of recurrent primary sclerosing cholangitis (rPSC) is 24.5% three years post-transplant. The chances for rPSC become greater with time, with 45.8% of PSC transplant patients experiencing rPSC after six years. I’m a couple months shy of my third “liversary.”

Researchers also determined active inflammatory bowel disease in PSC liver transplant patients as a risk factor for rPSC. My Crohn’s is in remission. However, my gastroenterologist noticed slight inflammation in my color during my last two colonoscopies. Also, I experienced a severe flare back in March. I’ve struggled with bouts of diarrhea ever since.

To rule out if my disease has returned or to determine the source of my elevated enzymes, my doctor would like to perform a liver biopsy. As I write this, I’m waiting for my team to schedule the appointment for the procedure. Because Dr. Raju wants to do it as soon as possible, my tissue sample might already be at, or on the way to, the lab by the time this column is published.

My ark of the covenant moment

Like the ark, my liver holds secrets. Discovering what’s inside will release the truth of what’s happening to my body. The revelation will either be beautiful or deadly. To be honest, I don’t know what to hope for.

If the tissue sample returns negative, whether for rPSC or any other type of liver disease or damage, I’m back to square one. I’ll resume the cycle of testing and appointments until my transplant team confirms a diagnosis. If the biopsy comes back positive, I’m facing a similar fate. The only difference would be that the cycle could inevitably end in a second transplant or death.

I’m struggling to remain positive. Right now, I feel like Indiana Jones at the beginning of the movie after he retrieves the Chachapoyan golden idol. I’m running with a giant boulder at my heels and dodging poisonous arrows to escape alive with the prize I fought so hard to obtain. Although Indiana eventually loses his bounty to his nemesis, he survives to embark on his next adventure. I suppose, so will I.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.

Emmeline is a 47-year-old Crohn’s warrior and primary sclerosing cholangitis survivor. Her column encourages patients and caregivers to advocate for better healthcare and educates readers about her rare autoimmune diseases. She also freelances as a communication specialist, offering writing, editing, and graphic design services. Emmeline (an Auburn fan) and her husband Patrick (an Alabama fan) enjoy watching SEC football and spending time with loved ones in Austin, Texas. Thanks to a liver transplant in 2017, Emmeline is training for her third-degree black belt in the Korean martial art Mu Sool Won.
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Emmeline is a 47-year-old Crohn’s warrior and primary sclerosing cholangitis survivor. Her column encourages patients and caregivers to advocate for better healthcare and educates readers about her rare autoimmune diseases. She also freelances as a communication specialist, offering writing, editing, and graphic design services. Emmeline (an Auburn fan) and her husband Patrick (an Alabama fan) enjoy watching SEC football and spending time with loved ones in Austin, Texas. Thanks to a liver transplant in 2017, Emmeline is training for her third-degree black belt in the Korean martial art Mu Sool Won.

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