In this blog, I’ll be following the chain of events described in the Groundswell of my health’s dissolution. I’d intended to post it sooner, however, much of what happened to me is lost in fog. Added to that, I’ve struggled with details I should or should not share. For all the hand-wringing, I’ve finally managed to produce the second part of the hellish saga this past year has been.
By January 1st, 2018, I was 124lbs—31lbs down from my former 155lbs. Sean enrolled me on his insurance plan, a managed healthcare consortium, meaning I needed a new doctor. My third specialist referred me to my fourth within its strict network. Bordering on destitute in more ways than one, I managed to keep hope alive by reminding myself that 2018 was the best time in human history to be ill.
I’d managed to secure full-time employment following my termination, and fortunately, it was a work-from-home position. I was able to work from the comfort of my couch. This worked out in my long-term favor, as I was often too ill to put myself together. Later, I would be too ill drive.
However, this meant that I was slowly becoming more and more immobile with each passing day. This bloomed into a bevy of health risks I couldn’t even begin to predict.
Before I go on, I must again express the following disclaimer: our bodies are all different. 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.
Diagnosis: Crohn’s Disease
My fourth specialist ran a laundry list of diagnostics in addition to consulting with my previous doctor; they were colleagues despite operating under different health management systems. He wasn’t convinced I had Autoimmune Enteropathy despite the lack of chronicity and biopsies indicating anything else.
He ordered a diagnostic to measure the antibodies called Anti-Saccharomyces cerevisiae Antibodies (ASCA) my body was producing, a test not yet under my belt.
ASCA are immune proteins frequently found within the population with IBD; this test is a specific marker distinguishing between Crohn’s Disease or Ulcerative Colitis.
As January gave way to February, I was placed neatly within the population diagnosed with Crohn’s Disease. It was February 9th, 2018, to be exact. At this time, he was aware my previous doctors believed I had Celiac due to the results of my endoscopy. He ordered a round of tests (HLA-DQ2, HLA-DQ8, and Anti Gliadin Antibodie)—all of which I tested negative for. I was thus informed it was impossible for me to have Celiac Disease.
Symptoms such as debilitating stomach aches and migraines persisted—which he attributed to “simple” IBS.
Before I could be treated with the Remicade my previous doctor insisted on, I needed my blood drawn for the Quantiferon (QFT) test. The QFT detects Mycobacterium Tuberculosis, the bacteria which causes tuberculosis (TB). My doctor tested me twice for this under the advice of Infectious Disease, to eliminate any room for error.
If you are wondering why this is, it’s because Remicade is a biologic designed to treat Tumor Necrosis Factor Alpha (TNFα). The process is complex, but can be broken down into small parts; TNFα is a protein everyone produces. It aids in inducing fevers, inflammation, and the inhibition of viral replication, to name a few. To put it simply, it regulates your immune system’s response to illness and disease. It can also signal a protective immune response to help block certain infections.
TNFα, in healthy folks, regulates immune cells and inflammation in the body. However, if you produce too much of it, your body begins to suffer systemic inflammation—e.g., Crohn’s Disease, and a number of other inflammatory conditions inflicted by an overactive immune system. Excess amounts of TNFα cause your immune system to mistakenly attack healthy cells in the GI tract, leading to the systemic inflammation typical to Crohn’s.
Remicade and other biologics like it act by binding to these TNFα cells, halting inflammation. Unfortunately, that also means it lowers your immune system by proxy. You are therefore more susceptible to colds, infections, and risks such as TB. A condition easily treatable in the 21st century now has the possibility of once again being fatal.
I tested negative on the QFT both times, and on February 15th, I began Remicade.
Chronic Illness and Failed Expectations
It was not the miracle cure I hoped for. While I did believe I felt improvement at first, I was still gradually declining.
The morning of February 24th, I woke up with difficulties breathing, chest pain, slurred speech, and intense tingling and cramping in my extremities. I stumbled to the bathroom and looked at myself in the mirror; my face was horribly contorted, my muscles stretched tight. I woke Sean in a panic, unable to pull my fingers from the fists they were unconsciously forming. My voice didn’t even sound like my own; I drawled and lisped due to the constriction my larynx suffered from my constricting muscles.
At the hospital, my potassium, magnesium, phosphorous, and calcium were the lowest the staff claimed to have ever seen. I remained there for eight hours while they administered these minerals via IV in addition to a muscle relaxer to help me rest during this process. When my birthday rolled around two days later, I was lethargic and miserable and in no mood to celebrate. I was nevertheless given a surprise party by Sean and my friends.
I was tricked into leaving the house; Sean knew I didn’t want to get out of bed, so he had a mutual friend tempt me with high tea at Dr. Bombay’s Underwater Tea Party. Taking advantage of my dissociative state, they were able to get me to the local pub where everyone had gathered, and there, celebrate. It’s one of the few clear memories I have of this year.
On March 3rd, I made the following update to my Facebook:
I had fully weaned myself from my steroids, believing the Remicade was working beautifully. And it is. However, it isn’t fully integrated into my system. And I’ve steadily begun to feel worse.
It came to a head today and yesterday when I couldn’t escape the desire to vomit, nor was I able to eat much at all. This morning all I could eat was about five bites of potato before I got sick. And it reminded me of my big hospitalization where I was only able to eat a few bites, having lost about 30lbs at that time.
I’ve also lost about 3lbs.
So I took 10mg of prednisone and went to sleep. I feel marginally better now, but not by much.
Dr. #4 said he would write me a new prescription for prednisone to subsist on until the Remicade takes full effect.
I’m not happy. In fact, I’m borderline apoplectic.
This trend continued for months. Every visit to Dr. #4 left me angry and frustrated; he insisted my stomach pain wasn’t from Crohn’s, and he didn’t know where my migraines were coming from. He began treating me with what can only be described as mild indifference; if I said my stomach hurt, he said it was my intestines that were paining me. If he applied pressure to my intestinal area, he said I didn’t indicate that it was my ileum in pain, so it wasn’t from the Crohn’s.
The weeks crawled by unremarkable in nature; in the mornings, I would pull myself from the bed and shamble towards the couch for work. I was experiencing fatigue beyond anything I’d yet endured. I continued to experience debilitating stomach pain and migraines.
On March 23rd, I was hospitalized again. There I stayed for five days, complaining of crushing pain in my diaphragm and nausea.
A typical round of treatment for Crohn’s Disease was started; a round of antibiotics, to stabilize intestinal flora… in theory.
There, I was given another CT scan. Yet, it didn’t indicate active Crohn’s Disease, in contrast to the MRI a month or two previous revealing persistent inflammation in my ileum. One doctor informed me that if they biopsied my small bowels, I could still show chronic inflammation on a microscopic level. It was speculated that the Remicade was slowly beginning to wrangle my Crohn’s.
I would have to endure six months before taking a blood test indicating whether or not I was developing antibodies to the biologic. Unfortunately, I didn’t make it that far. I continued to lose weight with nearly continuous abdominal pain, nausea, and migraines.
Despite my begging Dr. #4 to see me or to try something besides upping my prednisone dosage, he continued to disregard me. He told me, with no small degree of patronizing smugness, that the recent CT scan did not reveal active Crohn’s.
I simply wasn’t being patient.
He refused to entertain the idea of dual therapy with Mercaptopurine (6MP). This chemotherapy drug is commonly prescribed alongside Remicade to treat inflammation; it works by altering the immune response by inhibition of natural killer cell activity and the suppression of T-cell function. In theory, it works by changing the immune system’s response so it lessens inflammation in the gastrointestinal tract.
That said, it can be a particularly toxic combination in some, and has the potential to raise your cancer risk to 6%. This amounts to roughly 6 in 10,000 people—however, as with anything, you must weigh cost vs. benefit. In my eyes, the potential for wellness and the ability to eat again was worth the potential risk of cancer, however slim.
I finally called my insurance to schedule a second colonoscopy and endoscopy, which Dr. #4 casually told me he would have no time for. I scheduled with his colleague instead and was seen the following week.
This revealed that my Crohn’s Disease was spreading into my duodenum, continuing to inflame my ileum, which the CT scan failed to detect. It is not a successful diagnostic tool for diseases of this nature. My intestinal vili were still blunted, as previous tests had reported.
Armed with this information, I contacted Dr. #4 again, indicating the need for dual therapy or a new drug entirely.
I was ignored.
Mounting Concerns and Chronic Symptoms
On or around May 5th, I had an appointment with my primary care physician. I conveyed to him the pain I was in, the fact that my Crohn’s was spreading, that I didn’t believe I was getting the care I was entitled to, and that my right leg was in insurmountable pain. When this pain started, I couldn’t say. What I did know was that it was swollen, it hurt to walk, and it hurt to touch.
My PCP ordered an X-Ray, concerned I may have fractured something having been on prednisone as long as I was.
This revealed nothing of interest.
However, he did make a few calls. My GI was suddenly at my service. I was prescribed the 6MP, though I was advised it would take some time for therapeutic levels to build in my body.
I made the following update to my Facebook:
Things are declining. I have dropped to 95lbs and I have an appointment with a nutritionist to see if I can get some medicated shakes for caloric intake or if I need to be admitted to an inpatient feeding program… complete with feeding tube.
The Crohn’s is spreading into my duodenum and continuing to inflame my ileum, so they’re starting me on dual therapy. This increases my cancer risk to 6%, which is roughly 6 in 10k people but it’s either that or just die of starvation because the CD won’t let me eat.
I don’t have enough protein in my blood, so my extremities are swelling. Also, I had my hip x-rayed because they were afraid it was fractured because of malnutrition and prolonged steroid use… it’s not, but the muscles hurt because my body is eating my muscles for energy at this point.
I am starting dual therapy today. I saw my PCP the other day and conveyed to him that I was beginning to believe I was going to die, that I wouldn’t survive this. I’d emailed my GI with the severity of the situation and received no email. It was marked as read, however. I did reach out to the doctor who did my endoscopy/colonoscopy and he did say he recommended dual therapy.
My PCP wrote a few emails and made a few calls. An hour later, my GI was emailing me, all sweetness and light, sad and contrite. He called me yesterday to discuss our treatment plans moving forward.
Today, I am starting 6MP therapy.
At this point, I weighed 95lbs and could barely walk. My vision was black and spotty. I couldn’t keep water down. Sean’s was given his late grandmother’s wheelchair, which became my primary mode of transportation.
My PCP referred me to a nutritionist, though he advised me that I should be hospitalized until I stabilized.
There, I was informed I couldn’t receive adequate nutrition in the time I needed it. I needed total parenteral nutrition (TPN) via a port or a peripherally inserted central catheter (PICC) for a time to be determined by my doctor… as soon as possible. Additionally, she believed the swelling in my leg to be a sign of low protein in the blood.
Sean and my best friend, Cara, loaded me into the car, packed a bag, and drove me to the hospital.
However, Dr. #4 refused to admit me into the hospital. What his exact reasons were I cannot recall, though I vaguely remember him sternly telling me to give the Remicade and 6MP more time.
When the E.R. doctor visited me, she was alarmed to see my right leg, ordering an immediate ultrasound.
Becoming lethargic and immobile through deterioration, I developed what later turned out to be a deep vein thrombosis (a DVT) in three separate clots; it started out in my ankle, breaking off into my knee and hip.
By then, I was so accustomed to feeling poorly that my swollen leg didn’t pique my interest.
She admitted me into the hospital, ignoring Dr. #4’s previous orders, where I stayed for a week.
It should be noted here that the week preceding this visit is murky.
I can’t say I remember most of my time in the hospital, either. Rounding doctors and working nurses were punctuated by concerned friends, flocking to my room, packing it to the gills.
I was so heavily medicated that it is hard to say whether or not this memory loss was caused by my medication or the overall state of my health.
Dr. #4 took advantage of this compromised state with his internist colleague.
Standing shoulder to shoulder in my room, they attempted to order Cara out. Despite being diminutive in stature, Cara is both tenacious and unimpressed by attempts at intimidation. She informed them she was my half-sister and thus, they could not remove her from the premises… unless they wanted to speak to our legal representation.
Her presence did not preclude them from attempting to pin me for illicit drug use.
Dr. #4 informed me that his nursing staff had seen Sean depositing sharps in the sharps disposal at his office. He demanded to know where I’d received my sharps, and why I was using them.
Here, I’ll note I’d been prescribed B12 injections by Dr. #3, the doctor who referred me to him. They were colleagues. Of interest is the fact that this information could easily be found on my medical chart. Before enrolling in this insurance plan, I purchased these sharps from CVS.
After informing him of this, he left the room with the internist. She returned later to personally grill me about illicit drug use in the home, and was I sure I wasn’t using?
After the interrogation finished, Cara and I stared at each other in stunned silence.
This silence was disturbed by a nurse discussing Dr. #4’s order, indicating I would not be given TPN. I was panicked but unable to react appropriately.
Dr. #4 also began refusing to share my medical progress or treatment with Sean, on the basis that we were not legally married and thus, he had no right to the information. This had not been a problem until this very hospitalization.
When another friend came to visit, she was regaled with these events.
This too was interrupted by a soft knock on the door; a small woman introduced herself as the rounding psychologist. Dr. #4 sent her to my room, informing her I needed help coping with my Crohn’s Disease.
She turned out to be of invaluable service, however; Cara and I relayed the interrogation to her. Together she, and my other visiting friend, rounded up patient advocacy. The advocate sat with Cara and I, diligently taking down details of what transpired. Sean contacted my PCP, telling him Dr. #4 was withholding treatment, believing I was an intravenous drug abuser.
We were at a standstill. I was unaware of my options, even then.
I fell asleep troubled.
The next morning, Dr. #4 came to my room again—with a completely different attitude. He seemed far more intimidating the night before, and his internist stunningly aggressive. He told me, while glancing at his shoes from across the room, that he never believed I was an “intravenous drug abuser” and that the drug test was administered to all prospective patients.
It’s worth mentioning at this time that no mention was made to him directly of intravenous drug abuse in those exact terms, nor had anyone mentioned a drug test. My PCP had yet again gone to bat for me.
His internist was suddenly of a sunny disposition, willing to help with whatever issues we had. We were informed a PICC line had been ordered, and my TPN was being tailored to my complete blood count (CBC) and comprehensive metabolic panel (CMP).
That night, my PICC was inserted and I was administered TPN for the first time.
The psychologist he’d ordered to cow me into submission had worked in my favor, writing a detailed report of Dr. #4’s treatment of me. She told me, under no uncertain terms, that even if I were abusing drugs, my doctor was ethically required to treat me.
That was a problem and the hospital had interceded on my behalf.
End of Life Discussions
There was one thing everyone who came to visit me agreed on: no one thought I was going to leave the hospital alive.
These fears were emblazoned in Sean’s mind, made all the more real by my inability to form complete sentences or sit up in bed unassisted. Conversations in hushed tones trickled through the crack of my room door. Added to the knowledge that I didn’t trust my family to make proper end of life decisions for me, he also knew that he didn’t have a legal leg to stand on if I was unable to speak for myself.
One evening, which I vaguely recall, I signed my last will and testament over to Sean, with Cara as witness. The paperwork was signed by the doctor on call and summarily notarized by another friend with such legal authority.
Sean was now in possession of the authority to make end of life decisions for me, per my wishes. This also meant Dr. #4 couldn’t attempt to withhold information from him, as he had been trying to do.
At this time, believing I was finally receiving the care I needed, Cara left for her home state—she’d driven from North Carolina to see me.
The Intersection of Physical and Mental Health
As previously stated, it is difficult to know why my recollection of this time is fragmented. However, I can say that the large doses (and what I would come to find later were over-dosages) of medication, coupled with my mental state, cause brief but terrifying dissociative fugue states.
My heightened anxiety at the thought of a PICC being placed in my left arm lead the nurse to request Ativan for the brief procedure. The combined state of being a mere 95lbs, my heightened state of anxiety, being administered 4mg of Dilaudid for my pain, 1mg of Ativan, and what turned out to be too much Lomotil, was too much.
That evening, while my friend Barbara slept, I woke standing in the middle of my room. At this time, I was considered a fall risk. A commode sat by my bed (affectionately named Hungry Hungry Hippo), and a brightly colored band on my wrist, indicating my state.
I trembled uncontrollably, though I wasn’t cold, standing there, soaking in my surroundings. It was dark, and I’d no idea how I got there, or why I was there. I remember arguing with the PICC in my arm for the pain it caused me. I remember my confusion for why it was there in the first place. But touching it hurt more, and as my fear mounted, so too did my panic.
There I stood, confused, dazed, gown hanging off my shoulders… and utterly unsure of who or where I was.
Finally, something caught my eye; the nurse remote. I can’t say why, but I knew to take it and press the call button.
“I’m in pain.”
When the nurse came in, she told me she’d just given me pain management. She couldn’t give me more. She called me Sarah. She asked why I was out of bed, and how I was able to stand.
I didn’t know or recognize her.
“Who are you?”
“Sarah, I’m your favorite nurse. You’re my favorite patient.”
That was true—for every hospitalization, she’d been my nurse, and I’d grown especially fond of her. But at that time, I had no recollection of who she was, or why I was there. She helped me into my bed, remarking that I was shaking. She brought me more blankets and held my hands for what seemed like hours. Slowly, my memories trickled back into the forefront of my mind; my name, her name, my Crohn’s Disease, and why I was there.
This memory loss persisted in intervals for weeks. I would forget who someone was entirely while they were visiting me. I briefly forgot who Sean was on a few occasions. I would have entire phone conversations I still cannot recall, and I would often come to somewhere in my apartment, unsure of how or why I was there. I often could not remember who I was.
The victory found in being prescribed TPN was short-lived, however. I kept it and my PICC for a mere four days before I was discharged into Sean’s care.
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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