When Good Bodies Attack Themselves

When Good Bodies Attack Themselves
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Recently, the satirical news site The Onion published an article told from the viewpoint of a quarantined man’s immune system. Fighting the same germs every day had become tedious, so the “immune system had begun attacking normal, healthy tissue just to break the monotony.”

Truth is stranger than fiction. After being locked inside for six weeks, my immune system got a taste of the outside world when I had my Remicade (infliximab) infusion and quarterly bloodwork in mid-April. Having overcome the Crohn’s flare that began shortly after I went into self-isolation, my excitement-starved immune system began attacking my body. I’ve spent the past month and a half leaving the house every week to appease it.

The adventure begins

My quarterly bloodwork was unremarkable. All my numbers were stable and around the normal range. However, my tacrolimus level, which suppresses my immune system, was a little low. I knew if my transplant nurse Cassie called, she would increase my dosage.

When she called, I asked if diarrhea could affect the tacrolimus level. She told me to hold off on increasing my dose until she spoke to my doctor. Cassie never called back, but I decided to get labs redone two weeks later. I no longer had diarrhea, and I wanted to see if my numbers improved.

In the interim, I had a telehealth appointment with my gastroenterologist’s physician assistant Jessica. I was unable to schedule the FibroScan ordered by my hepatologist to check for fatty liver disease because the center was closed. Jessica suggested I start drinking coffee because the antioxidants would combat the effects of the disease. I left a message with Cassie about the FibroScan and told her to keep an eye out for lab results.

Making matters worse by trying to do good

The second set of lab results showed my tacrolimus level had risen to the optimal level. To my dismay, that wasn’t the only high number. In the three weeks between blood draws, my liver enzymes — alkaline phosphatase, aspartate aminotransferase (AST), and alanine aminotransferase (ALT) — doubled to an abnormally high range.

Expecting Cassie to call, I tried to remember what I’d done differently since my last labs. All I could think of was I had started drinking coffee at the end of April.

Cassie didn’t think drinking a mug of coffee would cause such a dramatic spike in my numbers. She submitted new lab orders for bloodwork the next week. I stopped drinking coffee immediately and prayed for better results.

Three strikes and I’m out

With my third round of labs, my AST and ALT decreased slightly but were still high. My alkaline phosphatase went up another 100 points to triple the April amount, causing my hepatologist to order an extensive blood work-up.

I counted at least a dozen vials in the phlebotomist’s basket as she prepared to draw my blood. My vein collapsed before she could fill the last two tubes. After sticking my other arm, she managed to get just enough blood before the second vein collapsed.

In addition to the bloodwork, my doctor arranged an ultrasound of my liver and a magnetic resonance cholangiopancreatography (MRCP) to check for blockages in my biliary ducts. My team also scheduled a telehealth appointment with my doctor’s medical assistant.

The waiting game

I hadn’t even received the results from the big blood draw when I returned to the lab for my weekly standing order of a complete blood count and comprehensive metabolic panel. Two days later, I had the ultrasound and MRCP — the first I’ve done since 2017.

My telehealth appointment was the following Friday. I was optimistic when I hadn’t heard any results by Wednesday. Then, Cassie called on Thursday.

I tested negative for all viruses that could affect my liver except for a low positive for cytomegalovirus, a common virus that can cause serious symptoms in immunocompromised people. My liver enzymes remained stable but elevated. My ultrasound came back normal. However, my MRCP showed “anatomical changes,” which Cassie described as “debris” in the biliary ducts.

My team rescheduled my telehealth appointment so I would see my hepatologist when she returned to the office. Despite the results, the delay put me somewhat at ease. If my team could put my health on the back burner for two weeks, I couldn’t be in immediate danger.

The adventure continues

I have another week until I meet with my hepatologist. I’m trying not to worry about something I can’t control. Nevertheless, I’m disheartened. After shielding myself from the pandemic and dieting and exercising to lose weight, my body has turned against itself. I joke that I’m the only person strong enough to kick my butt. Leave it to my immune system to have a sick sense of humor — literally.

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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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