In my experience as a Crohn’s patient, besides the agony of the disease and the difficulty and energy expenditure of finding effective treatments, the ignorant and hurtful things blurted out by friends and family members have perhaps been the hardest thing to deal with. (Oh, and the looming homelessness! But for me at least, the major financial difficulties came a bit later.) The demented things people have said to me started early on and it caused me to perform a snap evaluation of the relationships in my life, as that was all I had the energy for, and I decided I would rather just be left alone. 5 years later, I do not regret my decision to cut ties with almost everyone who I had previously thought cared about me. For some reason, they could not or would not grasp what I was dealing with and their constant drains on my time and energy were making me feel worse.
In my case, I had been having inexplicable gastrointestinal symptoms for a decade or more which I had mostly been able to control with diet, but I started becoming seriously ill in the summer and fall of 2012. It started as a pain in my right groin area and for 6 months or so I thought I had pulled something at the gym. As the discomfort gradually increased I started limiting my workouts, eventually applying a heating pad to the area and taking NSAID medication which unsurprisingly did not help. It was a slow descent from there and as the pain migrated somewhat, I wondered if I had kidney stones. I felt intermittently sharp and aching pains on my right flank which moved from front to back and up and down. The dreaded right lower quadrant or “RLQ” abdominal pain was there and I knew from my experience as an emergency first responder and an attorney reviewing medical records all day that RLQ was indicative of an acute abdomen and was taken very seriously — if you show up in the emergency room with RLQ they will see you immediately, over all other bumps, sniffles and even more serious but non-life threatening injuries. RLQ — and an acute abdomen, usually appendicitis — can literally kill you.
The first time I sought medical treatment for what I now know was my first major flare of Crohn’s I used a local walk-in clinic and I told them I thought I had a kidney infection or kidney stones because of the flank pain. I downplayed the RLQ and drew their attention higher to my right hip, side and kidney area. The physician’s assistant who saw me recognized that RLQ could be serious and was appropriately concerned but I insisted that as I had had a kidney infection before (I had) and was having groin and urinary symptoms as well, that I just wanted to try an antibiotic and see what happened. I provided a urinary specimen which had some bacteria in it so he did what I asked. Weirdly, I felt somewhat better within a few hours of taking the antibiotic when it normally takes at least 24 hours to feel relief from an infection treated with antibiotics. I didn’t get all the way better though and my relief was short-lived. I knew my RLQ would put the emergency department on red alert and I did not want them to do something rash, expensive and dangerous like an emergency appendectomy or laparoscopy to further investigate the issue. So I waited it out at home for several days. I had been laid off from my last job as an attorney the previous summer and had no health insurance but plenty of time to putter around my apartment like an imminently-expectant mother, taking care of things and monitoring my condition. I worked on my projects, took care of my home and partner and hoped that whatever was happening to me would pass.
After about a week of puttering, monitoring, and successfully keeping myself out of the hands of overeager emergency room doctors, Hurricane Sandy slammed into the east coast where I was living at the time and I lost my apartment. In the chaos that followed, my partner and I packed up our home in one day, put everything into storage and said goodbye to our former neighbors and our previous lives. After our things were safely locked away and the apartment empty, I could no longer tolerate the pain. It had only gotten worse with the extreme stress and physical exertion of the storm and the ultra-quick move and I wondered if I had had a hernia this whole time which had now blown. I went to the emergency room with my RLQ which by then had been present for about a month. The long duration set the doctors at ease, as an acute abdomen would have gone south much earlier — you do not have appendicitis for a month without a life-threatening event. They took their time and performed imaging, urinalysis and blood work and came up with nothing except a left-sided ovarian cyst which I had already known about for several years. They figured my right flank pain was radiating from the cyst and sent me home, which at that point was my partner’s mother’s house. He slept in what I can only assume was a toddler bed as it was extremely short, narrow and uncomfortable, while I took the couch. Over the next 4 months my condition deteriorated severely.
Now, as I was not married at the time I lost my home, and my relationship in fact was not doing well, my moving into his family home was a most unwelcome change. In reality I was homeless and entirely dependent on the charity of my essentially ex-boyfriend and his disapproving mother from whose home I had already fled once. After law school, my partner and I both moved in with her and stayed there for 2 of the most miserable years of my young life. The apartment I lost had been the haven to which I had gratefully fled, and now I was fleeing back. The loss was tremendous and I was getting sicker by the day. I called my mom and asked if I could come stay with her for awhile. Even though I had lost my home and was living in a terrible situation which I had already left once, she figured I just wanted a little vacay and that it could wait. She disappeared with her husband for 2 weeks over Thanksgiving and was no help at all. As it turns out, that would have been my only window to escape.
My illness was getting dire and I was starting to become overwhelmed with painful and debilitating symptoms including extreme and unrelenting bloating after meals; deeply aggravating gurgling, gas and digestive upset regardless of previously effective changes in diet; chest pains and pressure including terrible “heartburn” with constant burning, regurgitation of acidic stomach contents, and violent esophageal spasms commonly mistaken for heart attack symptoms; persistent nausea and loss of appetite; fevers and chills; skin eruptions and deep boils that left me pockmarked and scarred; full body pain including visibly swollen joints and joint pain; and my now constant companion, severe RLQ. My guts were noticeably inflamed and boggy-feeling as if there were a loaf of bread where my appendix should be. My insides felt heavy and sore and were “pulling,” pulsing and sharply painful as I tried to get comfortable in bed, and I couldn’t lay on either side or on my back. Unsurprisingly, I was unable to sleep very much under these conditions and on a 40-year old couch no less. As there was no rest or recovery period, one hellish day bled into the next, and by February, 2013 I could no longer take it. I made an appointment with a gastroenterologist I knew and had more imaging and tests. It was then that I got my diagnosis: my dreadful array of symptoms finally had a name, and it was Crohn’s disease.
This concludes Part I of this series, in which I hope to shed light on the serious and debilitating symptoms of Crohn’s disease and why it is not “just” a tummy ache, although tummy aches are bad enough aren’t they? Everything we need to live is in our “tummies” which this fast- and junk-food obsessed, yet poop- and fart-phobic culture downplays constantly as it is. If your tummy isn’t happy, you will not be happy, and when it goes on for a long time this is the very definition of serious, chronic illness.
In Part II, I will describe my first attempts at treatment, including the side effects of medication, the experience of constantly switching medications to find effective relief, and compile more evidence against the notion of Crohn’s as being an inconsequential ache of the unimportant tummy. Friends and family members: take heed if you wish to be a positive force in a Crohn’s patient’s life instead of a nagging, dismissive asshole wholly ignorant of how the human body works and what it needs to survive, much less thrive. If it sounds like I’m a bit angry, it’s only because I am.