Getting sick
It was spring of 2007. I was 19 years old. I was going to community college full-time and working part-time at a card shop in a mall down the street. I began having prolonged spurts of abdominal cramps off and on starting April of that year. I didn’t know what it meant; I had never had anything but transient illness, sans asthma as a kid. I didn’t have the anxiety then that those symptoms have since instilled in me. Now I know that they were a herald’s horn – a harbinger. I went to my primary care doctor because it kept happening. They dismissed it as heartburn and told me to go get OTC Prilosec. That June, I was sick with what I thought was the flu.
On July 4, I started feeling nauseous and having cramps. I couldn’t go out to watch fireworks, so I laid on my couch and watched from my apartment window by holding up a mirror (there was a show that I could see from my apartment balcony every year). Sometime after the fireworks finale, the nausea and cramps hit a fever pitch and forced a full system purge. In the past, when something didn’t agree with me or I had food poisoning, getting rid of everything in my system would make the symptoms go away. This time, however, the nausea continued even though I had nothing left and the cramps just got worse. It was an all-consuming pain, a pain so bad I couldn’t think or speak. When I had a moment of reprieve, a break and sudden lucidity, I called my boyfriend at the time, whose mom was a nurse. She advised me to go to the emergency room.
After getting home from the colonoscopy on August 9, the effects of my first meal were a repeat of what happened to me on July 4, this time with an accompanying fever. My mother called the gastroenterologist, who instructed her to take me back to the hospital.
I was admitted dreadfully ill. The CT scan revealed that I had a huge abscess in my abdomen along with free-floating fluid. They were going to drain it with a syringe but then realized they weren’t going to be able to get to it without having to perforate the surrounding bowel. So, they opted instead to go in to take care of it the next morning. I knew I was dying. It was a sinking feeling while somehow being out of body.
I woke up, regaining consciousness from the surgery with intractable vomiting while being wheeled from the recovery room back to my room in the pediatric ward. I was unaware of what happened or what they found, I just saw my mother and boyfriend standing in the distance looking at me with terror as I constantly dry heaved even though there wasn’t anything in me, and my guts pulsed with pain. It felt like my staples that I didn’t know that I had at the time were going to undo and my guts were going to bust open and spill out. I remember telling the nurse in a low breathless tone, “I can’t take this pain.” They then gave me so many drugs that I couldn’t see straight.
Inside me, they found 17 cm, about half a foot, of ulcerated bowel at my terminal ileum (the part of your small bowel that’s right before your colon), an abscess growing out of this section of bowel the size of a softball, as well as appendicitis. My surgeon performed a small bowel resection, removing the 17 cm of ulcerated bowel as well as the abscess, and an appendectomy. The scar on my abdomen spans 6 inches.
I was admitted to the hospital, where I was misdiagnosed with PID (pelvic inflammatory disease), given IV antibiotics, and released after seven days. After a few weeks, my symptoms started to recur. I got in with a gastroenterologist who did an endoscopy and found widespread granuloma in my small bowel, which is a kind of lesion/ulceration. He mentioned Crohn’s disease and scheduled a colonoscopy for August 9. It hadn’t sunk in yet – the diagnosis. In that interim, I noticed that I felt pressure in the inside of my abdomen, another harbinger I didn’t know how to interpret.
Complications
There were a number of complications with the surgery. My left lung had deflated because the surgical team bungled up inserting the PIC line and somehow popped my lung instead. They were inserting the PIC line in order to give me TPN, which is intravenous nutrition, since I wasn’t going to be able to eat while my guts knitted themselves back together. Unfortunately, it turned out that I was allergic to TPN and had an anaphylaxis reaction. Both my lung deflating and the anaphylaxis were transient. Removing 17 cm of my terminal ileum caused me to have lifelong Bile Malabsorption Syndrome, which functionally means that I have to take medication for the rest of my life whenever I eat so I’m not running to the bathroom all day, regardless of me being in remission are not, and that I am extremely food limited. It also means that I no longer have an ileocecal valve, which is the valve that separates your small intestine from your large intestine, meaning that I have a greater risk of developing SIBO, Small Intestinal Bacterial Overgrowth. These are permanent complications that I have dealt with for 16 years.
I was released from the hospital after 10 days, staying at my mother’s house. Unfortunately, after leaving the hospital, I suddenly had flash-in-the-pan intense nausea and pain, having a full system purge again. It turned out I had an intestinal adhesion that blocked the burger that I ate from being able to pass through my intestines. I was admitted to the hospital again. I remember my surgeon talking down to me and telling me that if my intestines didn’t fix themselves on their own, that they were going to have to cut me open again. It turns out that I now have a lifelong risk of adhesions because of abdominal surgery, another complication. Luckily, my guts did me a favor this time and fixed themselves within 24 hours. I was released after three days in the hospital.
It only took 1 ½ months of severe, active illness for me to go through three hospitalizations and to sit at 94 pounds at 5’11”. I was ghoulish. I didn’t recognize the thing I saw in the mirror. My stomach was concave, sinking sharply inward above my pelvic bone. My face was gaunt. My chest was shallow. I had lost so much fat around my heart, I found out I had a murmur, because I could hear it. My fatigue was so strong, I could barely walk. I couldn’t stand up straight because my abdomen was so tight from the surgery. I couldn’t bathe myself.
Fail-First
I was referred to another gastroenterologist, which took me six months to get an appointment with. In February 2008, doing another colonoscopy and a barium test with him, it was revealed that I already had a recurrence of inflammation at my primary disease site (my terminal ileum). This made him diagnose me with moderate-to-severe Crohn’s disease, because of how quick the disease came back.
My gastroenterologist prescribed me initially with 6-MP, mercaptopurine, a fail-first step-therapy drug. It made me so desperately ill that I failed within five days, allowing my gastro to start getting the approval process going for Remicade. In the meantime, he put me on a regimen of 40 mg of prednisone daily, which I failed out of at that dosage after only one week because it gave me mood swings so severe that I called him and told him, “If you don’t take me off this medication, I’m going to kill myself.” We lowered the dose to 20 mg, which, while not optimum on my mental health, was “tolerable.”
Despite being on prednisone, my Crohn’s came back to this newly claimed disease site with a vengeance. Rather than present itself how it did in the past, it instead gave me chronic, recurring nausea, intense bloating, and diarrhea. I believe my record for going to the bathroom was 11 or 12 in one day. This made going to college very difficult. My workaround was to fast for 20 hours of the day, everyday, and only allow myself to eat in a four hour window between 4 PM and 8 PM. Any earlier in the day and I would be too sick to go to class. Any later in the day and I wouldn’t be able to sleep.
Zofran didn’t do anything for me and opioid pain medication made me even more nauseated. I had no medication giving me relief from my symptoms or my disease. This was also the time where I had so many bowel obstructions due to inflammation of my primary disease site/stricture that I don’t remember how many times I was hospitalized from the period of April through November of that year, which made me flunk out of two classes.
It’s a special kind of hell knowing that you need to eat in order to live, going into the kitchen, and knowing that anything that you put into your body will make you sick. Every day was like this.
It wasn’t until having this recurrence of Crohn’s disease that I seriously considered killing myself. I got so profoundly depressed from the impact of this disease on my quality of life that I would look at people smiling and not be able to understand how they could be happy, like they were aliens. I had an intense bitterness and self-hatred towards my body, a betrayer. I didn’t have much of a social life and isolated inside most of the time. I didn’t have a concept of the future, or, more, avoided the subject, because I knew tomorrow was going to be just as bad as today.
Remicade
I started on Remicade in June 2008 and weaned off of prednisone in August of that year. Remicade was not an instant hit for me like it was for a lot of other patients. While not everything about my disease had been figured out yet, like what premed regimen I need for my infusions, what diet I should be following, what medication I should be taking to control my BMS, I could tell things were gradually getting better.
One thing that became clear to me very early in getting these infusions was that infusion delays would roll back the clock on my progress towards remission by months and sometimes years. These delays came from either me having an active infection, because I was immunosuppressed by Remicade, or insurance issues, like the annual pre-auth shuffle. A slumbering beast, around when I was next due to be infused, I would feel my Crohn’s get worse the week prior. If I was delayed in getting my infusion, for every week I was delayed, my symptoms and disease would become worse, markedly.
Healthcare as a Business
In 2021, I was informed by my insurance, United Healthcare, that they were no longer willing to cover Remicade despite me being on it for 13 years and in remission after 6, and that I would have to switch to Inflectra. There’s a few things that you need to know about Crohn’s drugs, specifically biologics like Remicade. Remicade is a biological product, meaning that patients have a risk of becoming allergic to it over time if not continually exposed to it. Stopping a biologic and switching to another drug raises this risk, leading to the very real possibility that you may not be able to go back to the drug you switched from. There is also a risk of the drug just not working for you anymore. The prevailing wisdom of gastroenterologists and IBD specialists is: if you are stable on a drug, you stay on the drug until you die. There are limited IBD drugs on the market, and not every drug is guaranteed to work with every person that has IBD. The drug just may be ineffective for you or the side effects may be so intolerable, if not dangerous, that you can’t take it. So, switching to another drug for reasons that are not intolerable or dangerous side effects is bad medicine. It puts patients at risk. It puts people at risk of going through exactly what I went through. I lost gut, I have permanent complications from surgery that I will have to deal with until I die, and, for people that have already had to go through surgery, or who have extensive internal scarring, or who have risks of obstruction, without even addressing all of the other complications and comorbidities of Crohn’s disease, there is only so much gut someone can lose. Uncontrolled Crohn’s disease is not just a quality of life illness. It can kill you. It almost killed me. J, Texas
