Chronic Illness: the Groundswell

by Sarah Birdsong
A story in three parts: my Crohn's journey, from start to finish.

I know I’ve been suspiciously absent for months now. I alluded to medical hardships in my previous post regarding my birthday, but left it at that. I’d intended to start this much sooner than now, however, the whole of 2018 has been spent bedridden or in the hospital. I’ll begin with a story in three parts before moving on to what you can do if you or someone you know are in a similar situation. More than anything, I wish for this blog to be the resource I didn’t have when I needed it.

But please remember this: we are all different. Our bodies are unique. The expression of our diseases will be different even if we share a diagnosis. What works for me may not work for you. I can only share my experiences in the hope that they will help someone who may need the information.

Let’s start at the beginning.

Chronic illness is a ticking time bomb and your body is the fuse. It isn’t something you can prepare for, diet your way into or out of, or run from on the treadmill. For those of us with genetic factors, it isn’t a matter of if. It’s when.

Creeping through your body, completely undetectable at first, it begins to accost you in ways that are otherwise completely deniable. As the days and weeks turn into months, your body begins to break down in small but meaningful ways.

You don’t notice these minute changes at first. The lingering fatigue after a night with friends. Taking a nap instead of going to lunch. The generalized and vague malaise. The stomach pains increasing in intensity. The frequent trips to the bathroom. The vanishing appetite.

It’s incremental, not exponential, in its growth.

Soon, food begins to lose its appeal. No longer a satiating comfort, it brings debilitating nausea or merely mild discomfort.

But, like a landslide, the events build on each other until they overwhelm. Before you know it, one day you’re staring at yourself in the mirror with the understanding you are now in possession of a chronic illness.

I remember distinctly when I began to feel off, however, because it was the same time Hurricane Irma blew through Atlanta. On September 9th, 2017, Sean and I were gathering supplies for the projected apocalypse. We even stopped for silly pictures. By the 16th, I made a post on my Facebook that read:

“You know when you’ve been sick long enough that you begin to feel like you’ll never be well again? I hit that point three days ago.”

At this stage, I believed I had a virulent form of the flu. The symptoms were just alike.

  • Fever or feeling feverish/chills
  • Cough
  • Sore throat
  • Runny or stuffy nose
  • Muscle or body aches
  • Headaches
  • Fatigue
  • Vomiting and diarrhea

The Grand Pause

Adults will typically recover from the flu in one to two weeks. But I didn’t. In fact, I deteriorated progressively until I finally visited Urgent Care. The usual line of questioning followed.

“Have you been out of the country in the past thirty days? Camping? Swam in any lakes or ponds lately?”

The most exciting location I’d been to outside my usual stomping grounds was New York. Somehow, I’d managed to avoid taking a dip in the Hudson. Regardless, Giardia was the primary suspect for the attending doctor, though none of my recent travels or activities put me in its category of risk. Unfortunately, Urgent Care could do little more than prescribe me a round of Flagyl and Ciprofloxacin. These broad spectrum antibiotics did nothing but increase my nausea and gift me a rancid, metallic taste in my mouth for two weeks. Instead of controlling the suspected infection and delivering me into wellness, I continued to deteriorate in small but measured strides.

What followed can only be described adequately by simile:

I fell in love like I fall asleep: slowly then all at once.

John Green

I didn’t know how ill I was becoming even as my health teetered dangerously on the edge. One morning after my daily commute into the city, after I’d made my morning tea and turned on my work desktop, my Work Lead stopped by my desk. She looked me over and said, “You need to go home. You don’t look well at all.”

I pulled out my pocket mirror and regarded my profile; it was true that my eyes had sunken in more than my genetic dark circles would normally suggest. My cheeks clung tightly to my teeth, the bones beneath protruding inelegantly outward. I noticed then the hollows in my shoulder as my dress hung precariously off my rapidly receding figure.

But, I didn’t want to go home; I wanted to work.

They sent me home anyway.

I worked there off and on for the next handful of weeks.

By this time, I noticed that eating was becoming more and more of a task for me. Nothing satisfied me and I wanted nothing in particular; I choked down plain rice and nursed water. At home, Sean would boil noodles and stir butter, Parmesan cheese, and pepper into it for a poor man’s Cacio e Pepe. I could only eat a few bites before becoming violently ill.

Here mind and body stood at a fork in the road; my mind maintained its current trajectory, refusing to believe anything changed, while my body went stage left.

It never returned.

From Acute Onset to Chronic Illness

Chronic illness is defined as an illness that persists for longer than three months by the U.S. National Center for Health Statistics. They cannot be prevented by vaccines or cured by medication. The CDC reports that half of all adults in the United States have one or more chronic health conditions, and one in four adults had two or more chronic health conditions.

One morning as I laid in bed, communicating with my Work Lead via text, I told her my symptoms and how ill I felt. I was sure this was a virulent form of the flu that could be remedied, somehow, if I could just find the right thing to hit it with. My Work Lead told me to stop gambling and to go to the E.R. immediately. I was put off by the prospect of cost, however; though at that time I had what I can only describe as the Cadillac of health insurance plans, the E.R. was still expensive.

I continued, foolishly, to believe that I could beat this on my own. That I would recover. That I could return to the life I knew as I knew it.

The whole of my life up until that point had been defined by my ability to muscle my way through anything life threw my way—no matter how painful, how unjust, despite all odds. I was determined to do that here.

I had no idea this was rapidly becoming a chronic illness and no amount of boot-strapping would save me here.

By this time, I had already seen my first gastroenterologist who had taken a series of panels to try and determine the cause of my illness. However, none of these panels were returned to me by phone, email, online portal, or mail. Sean took me to the E.R. after a particularly violent vomiting spell, leaving me in horrific pain. However, the results of this visit were inconclusive and unrewarding, as this Facebook, dated September 27th, 2017, post shows:

“Post-ER Health Update:

 

I received a CT scan which revealed that my lower bowels are swollen and retaining fluid. The way it was explained to me is that if your body receives an injury, it swells and your immune system sends in reinforcements to heal that area. If your immune system is bjorked, sometimes it thinks normal parts of your body have been injured when they’re actually completely healthy.

 

I was badly dehydrated and received fluids, which made me feel pretty almost instantaneously. However, as I began to walk around, I realized I was feeling nauseated and sick again, and thought maybe my blood sugar was dropping. I ate some parts of a burrito with Sean and started feeling worse. When we got home I promptly puked everything in my stomach up.

 

Right now they do not have any conclusive findings that point to Crohn’s or Ulcerative Colitis. I need a colonoscopy for that.

On October 3rd, 2017,  after securing a second gastroenterologist, I said:

“My new specialist has scheduled me for a colonoscopy this Monday. She did not want to prescribe steroids in case I have a bacteria that has heretofore gone undetected, which would be exacerbated by them. She suspects Crohn’s with my family history, but Ulcerative Colitis is still on the table.

 

I’ve lost 10 more pounds. I now weigh 130lbs. I’ve lost 25lbs in 3.5 weeks. This was my standard weight for years and I’d love to maintain it, but I never wanted to achieve it like this.”

October 6th, 2017, 1:15am demonstrates a rapid decline. I didn’t make it to my original colonoscopy appointment. Instead, I had one scheduled during my first three day hospitalization:

“After four weeks of running between doctors in pain and misery, I finally told Sean I needed to be admitted to the hospital.

 

I waited six hellish hours to be seen—nauseated, dry heaving and fighting for control of the hotly contested bathroom.

 

Right now I’m in for an overnight stay with continuous fluids with electrolytes and dextrose for my hypoglycemia… and intravenous pain management. Despite the circumstances, I feel almost normal for the first time in four weeks. I actually cried about it once I was totally alone.

 

I have an emergency colonoscopy and endoscopy tomorrow. But for now… I’m finally comfortable.”

Later that day, after my emergency colonoscopy and endoscopy:

“Brief update:

 

Patches were found in my stomach, my lower bowels are inflamed and smooth (they should be textured like a shag carpet and instead look like smooth linoleum), I have an ulcerative patch, and a polyp. They’re keeping me overnight for more tests. Autoimmune issues are suspected.

 

Details forthcoming.”

I was informed by team performing my procedures that these ulcerative patches and villi blunting are indicative of Celiac Sprue. I was formally advised to avoid gluten.

It’s been reported that the Titanic took 2 hours and 40 minutes to sink beneath the North Atlantic Ocean. It took me five weeks to be pulled under by my symptoms into a three day long hospitalization.

A week after my first hospitalization on October 14th, I found myself there yet again for a four day stay. By this time, I’d lost nearly 30lbs. I was becoming dangerously emaciated, and I could no longer stand unassisted for the severe cramping in my legs. I would come to find this to be a symptom of magnesium and potassium deficiency.

My IV tree bowed beneath the weight of numerous intravenous solutions to replace the minerals my body was losing. Despite being outfitted with lactated ringers, my blood pressure was frighteningly low, my heart rate wildly accelerated, my breathing abnormally rapid (tachypneic). I passed in and out of consciousness, my urine output was diminished, my extremities felt cold. Nurses and doctors checked my hands and feet incessantly for peripheral cyanosis.

Peripheral Cyanosis develops when arterial oxygen saturation drops below 85%. If you are severely dehydrated, your extremities will take on a blue discoloration, signifying this lack of oxygen. I had all the symptoms for end stage levels of dehydration but peripheral cyanosis, though it made the situation no less severe—or life threatening. I was informed by a nurse that had I not been admitted, I very well could have died.

“I’m back in the hospital while they run some more tests and administer steroids. I’ve been told I won’t be released until I show improvement. They’re back to the Crohn’s diagnosis with talk of autoimmune modulators. That’s all I know for now.”

That’s all I knew for months. Like the delayed lifeboats to the sinking Titanic, I struggled to find appropriate care that would both find me relief and return me into the hands of my old life. My work was suffering for my illness, my personal life was falling apart, and my body was in shambles.

My second gastroenterologist prescribed me 60mg of prednisone, informing me not to eat too much “because you don’t want to gain a bunch of weight, now!”

I was further ordered to “stay off WebMD” after I informed her that I was having adverse side effects. These side effects included severe constipation after a week of eating normally that bordered on impaction, curling hands and feet, tingling numbness in my extremities, severe cramping in my limbs, and difficulty walking. I was told this was the opposite of what they expected to see and that I probably wasn’t accustomed to carrying so much weight on me.

At that point, I had only gained about 15lbs from the prednisone, which was still 20lbs lighter than the weight I had been when this all started—which was listed in my health file. Frantic, I contacted the specialist who administered my emergency colonoscopy and endoscopy and informed her of my current status. She would become my third gastroenterologist.

She ordered a new round of blood tests which revealed the following:

Potassium Magnesium Sodium Carbon Dioxide Creatine Kinase
Nov 20, 2017 10:41 a.m.

2.5 mmol/L (Critical)

Reference Range:
3.5 mmol/L – 5.1 mmol/L

Nov 20, 2017 10:41 a.m.

1.2 mg/dL (Low)

Reference Range:
1.9 mg/dL – 2.7 mg/dL

Nov 20, 2017 10:41 a.m.

133 mmol/L (Low)

Reference Range:
136 mmol/L – 145 mmol/L

Nov 20, 2017 10:41 a.m.

17 mmol/L (Low)

Reference Range:
23 mmol/L – 29 mmol/L

Nov 20, 2017 10:41 a.m.

17 unit/L (Low)

Reference Range:
30 unit/L – 223 unit/L

These numbers put me, my heart, and my kidneys at risk. These were numbers that also would not have been afforded to me by my second specialist who insisted I was a hypochondriac. Who, in her words, “was an otherwise healthy, 29 year old woman” and she had “no reason to believe this was anything other than a passing phenomenon.”

Potassium, magnesium, and sodium are electrolytes. They are the conduction system in your body and if they are too high or too low, you essentially have electrical problems. Low potassium is called hypokalemia, occurring when the potassium level in blood is too low. Hypokalemia usually results from vomiting, diarrhea, adrenal gland disorders, or the use of diuretics. Your muscles may feel weak, they may cramp and twitch, or even become paralyzed.

Abnormal heart rhythms (tachycardia) may develop and can lead to cardiac arrest. The lowered carbon dioxide indicated I was alkaline from my vomiting and diarrhea. The lowered creatine kinase accounted for my steady decrease in energy as it converts ATP, a complex organic chemical, into energy. It can also cause the stiffness and soreness in your muscles—all symptoms I had been describing to my then specialist.

I spent that night in the E.R. yet again getting my metabolic panel rectified, hooked up to an EKG which monitored my rapidly fluttering heart. Multiple nurses fussed over the EKG, asking themselves and each other if these numbers were right. The attending doctor confirmed the dizzying array of numbers I could make no sense of. What I did know is that I was tired. My heart was beating out of my chest. I could barely move my own body.

That evening saw me weeping as I was administered both magnesium and potassium, which feel like an electrical current coursing through your veins. This is made all the worse because it feels ice-cold as it enters the body. My nurse brought me an array of warm blankets to wrap my arm in, draping them around my IV tree, doing what she could to make me comfortable. For anyone who finds themselves in this position, asking your nurse to piggyback magnesium and potassium together seems to cancel out the bulk of the discomfort.

I fired my second specialist through particularly heated correspondence that I would later look back on and wince at—my own fiery disposition came through in spades. I was apoplectic. Far from ensuring I received quality healthcare, she failed to administer even the most basic of tests to ensure my body was recovering from my pre-prednisone symptoms. She maintained her position of my supposed hypochondria, insisting I simply hadn’t given the prednisone enough time to work.

By the end of this, my second specialist’s nursing staff refused to speak to me and I was required to speak to the third specialist’s staff instead.

Through watching my own mother struggle with doctors, she herself in possession of more than one chronic illness, and the healthcare meted out to her, I knew that my health and future rested solely in my own hands. I had to be my own advocate because the vast majority of doctors would only see me as another number.

Living with your own chronic illness means you will need to learn to campaign for yourself at all times. You will need to educate yourself so you can identify false information immediately. Doctors work for the patient. Don’t fall into the trap of believing their education affords them enlightenment beyond your understanding; you live inside your body and you know what you are experiencing.

Find the doctor who believes you.

Your life may depend on it.

The Aftershocks

Between September 9th and October 3rd, I lost 25lbs. By November 27th, I weighed 120lbs. By the end of November, I’d been in the E.R. or the hospital seven times for various reasons for various lengths of time.

At this juncture, we entered a sort of maintenance mode. My doctors placed me on a Celiac’s gluten free diet at first. A strict no dairy diet followed. Then, I was placed on the Low FODMAPs diet.

None of these diets alleviated my symptoms.

I struggled to keep afloat of my new limitations. Keeping my office informed of these food restrictions was difficult. I began to detect a change in temperature between my Work Lead and myself. Until some point I can’t readily discern, she had been quite friendly towards me. In fact, we spent most of our work hours together. She began to truth-police me, to question the integrity of my work and, slowly, the truth of my illness.

Because my illness was episodic at this point and neither myself nor my doctors were sure what my food triggers may be, my diet was in a constant state of flux.

She would, none too subtly, “catch” me drinking a small carton of cow’s milk (usually Lactaid), asking me why I was drinking that if I wasn’t allowed to have dairy. I would tell her my doctors told me to experiment this week after a month of abstaining. The goal was to see if casein or lactose was the enemy.

It now turns out that it doesn’t matter; I can no longer ingest dairy without becoming violently ill. My diagnosis with Celiac Disease remained in question until August of 2018 because of my testing negative on various tests (HLA-DQ2, HLA-DQ8, and Anti Gliadin Antibodies). There, my third endoscopy revealed yet more textbook stomach patches and villi blunting. I was informed an endoscopy is the gold standard for diagnosing this condition, and the newly designed blood tests simply aren’t conclusive.

During the early days of my condition, I wasn’t able to ascertain a difference in how I felt when I abstained from wheat products; my chronic inflammation and other Crohn’s symptoms masked any wellness I might have gleaned. It wasn’t until I finally achieved remission nearly a year later that I could say with certainty that my migraines and stomach pains were completely gone after completely removing wheat and gluten from my diet.

I left work early one Friday after finishing my duties for the day after I was hit with a particularly bad wave of nausea. My Phenergan could not combat it, forcing my evening to be spent bedridden. The next night, however, I had a double date already paid for. I struggled to enjoy it despite always wanting to attend Cirque du Soleil.

I spent my evening with crackers and Sprite in hand, leaning heavily in my seat, ankles quaking within the tiny kitten heels I’d selected that night.

Despite the beautiful spectacle and a face painted in makeup to conceal my misery, I did not enjoy myself. That Monday saw me to an interrogation of why I left early Friday. If I was well enough to go to a show on Saturday, surely I couldn’t be that ill?

I apparently made the mistake of accepting my Work Lead into my social media. I further compounded this problem by mentioning the show was fantastic.

Later, a handful of coworkers informed me my Work Lead developed a pet theory regarding my troubles. I’d apparently I faked my illness in favor of staying home. I was bad at my job. I was lazy instead of just quitting.

On November 29th, the Vice President of Marketing pulled me aside to inform to “let me go.”

He’d never worked directly with me, nor knew the quality of my work. Neither my Work Lead nor my manager were present.

In fact, both were conspicuously absent.

Apparently, I was under-performing. The sites I’d optimized were not reaching their projected numbers.

Despite requesting proof of these claims, I was not furnished with any data, numbers, or print-outs.

In fact, the Vice President quietly informed me that he hadn’t seen proof of these claims. Instead, he was repeating what he’d been told. Given that Georgia is right to work, I had very little resource and accepted this with mild chagrin.

By the time December rolled around, we were no closer to a conclusive diagnosis. However, I was finally awarded the bright and shining title of “chronically ill.”

I had no definitive symptoms, inflammation markers, nor the chronicity expected for diseases like Ulcerative Colitis, Irritable Bowel Syndrome, Celiac Sprue, or Crohn’s Disease. Autoimmune Enteropathy became the diagnosis of choice for the lack of tell-tale signs, a rare and degenerative autoimmune disease typically found in infants.

Ultimately, my lack of fistulas, strictures, and intestinal scarring is what hindered my eventual diagnosis. In this way, I was almost required to wait until my chronic inflammation began to scar before anyone was comfortable with dropping Autoimmune Enteropathy. Curiously, no one thought to administer the Anti-Saccharomyces Cerevisiae Antibodies (ASCA) test; this test is used to distinguish between Crohn’s Disease and Ulcerative Colitis.

My third specialist decided to treat me with a biologic, Remicade, that treated both Crohn’s and Autoimmune Enteropathy beautifully. She insisted that it didn’t matter what I had. Right now, our focus had to be getting my inflammation and symptoms under control.

However, with the loss of my job, I was now at a medical standstill. Aid to navigation  halted. If there is such a thing as luck, I fortunate enough to lose my job during open enrollment. Sean placed me on his plan with Kaiser. However, my third and favored specialist was now out of network and I needed to find someone new. My then-specialist furnished me with a list of gastroenterologist within my new insurance plan that she personally recommended.

December 30th, 2017:

I’m just sick of being sick.

From there, I stocked up on the remaining prescriptions through the insurance plan I had with my now former employer, waiting until my new coverage in January began.

There I tread the water, floating in a pharmaceutical life-raft. My illness was a shark, circling in the water around me.

ADDITIONAL READING

I have compiled a list of additional resources regarding this entry and its contents for researching the topics therein:

Crohn’s Colitis Foundation: the leader in research, education, and support for IBD sufferers and their families.

The Crohn’s & Colitis Foundation of America: a non-profit, volunteer-driven organization dedicated to finding a cure for those living with IBD-related chronic illness.

Crohn’s and Colitis Foundation Forum: a place to share your experiences with Crohn’s and Colitis.

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1 comment

Drex September 27, 2018 - 4:31 AM

*hugs* being chronically ill sucks, most of the current medical field has no interest in finding out whats wrong and the occassional “oops” will either throw it off track or suspiciously put it on the right track. Oops usually meaning someone performed some random or basic test everyone else missed or ignored. If you need someone to talk, i get it.

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