My Crohn's Diaries

Before I get into the nitty gritty, just a warning at the front: I don’t believe in TMI. Not really. At least, I don’t anymore. Maybe I did before all of this, but I’ve had enough conversations about the consistency of my stool, driven one too many times with a container of it to the lab, and vomited next to many a coworker to feel embarrassed anymore. I’ve also sort of just decided not to be embarrassed. This is something happening in my life, whether I like it or not, and being ashamed of it will only make an unpleasant situation all the more unpleasant in my opinion. You’ve been warned.

My name is A and I have Crohn’s disease. Probably. Let me explain.

About a year ago, I moved back to my hometown. It was a bittersweet and stressful move, as any move is. But, soon after, I adopted a cat, my perfect angel baby, who I very soon after bringing her home found out had to have a less-than-perfect-angel-baby major surgery that was going to cost me a pretty penny and meant she was in a ton of pain. I focused on pain management for her until I could get her scheduled, struggling with cat mom guilt and frustration at the shelter for not telling me about this and worry about how I was going to afford it. I then got pink eye, my grandmother had a stroke, and around that time I noticed blood on my toilet paper each time I, well, pooped. (I did warn you, didn’t I?)

I did what any reasonable, logical person would do and ignored it. Sort of. I chalked it up to eating too many hot Cheetos or dehydration since my remembering to drink water skill was, and still is, not my best. As it continued, though, I Googled the issue, and was pointed in the direction of a hemorrhoid and shrugged it off since every result said it would probably resolve itself relatively quickly. Easy peasy, right? Plus, I was so focused on everything else, I simply didn’t want or have space for another problem to figure out how to fix.

I took warm baths and drank high-fiber smoothies and noticed my stomach hurt. Like, hurt. The bleeding persisted. My poop was small little pebbles that hurt coming out despite their miniscule size. I felt like I had to go to the bathroom more and more frequently, often with less and less coming out. I felt bloated, wanting to unbutton my pants at my desk at work to relieve some of the pressure during the day. I began vomiting, not a new thing for me as a relatively vomity person my whole life (foreshadowing?), but what came out was a strange white foamy consistency.

I kept Googling symptoms, consulting AI bots pretending to be doctors that told me I probably had hemorrhoids, IBD, cancer. It had been six weeks of this and, one night, I had a dream I’d been diagnosed with colon cancer. It freaked me out, subconscious thoughts surfacing in the form of a nightmare.

I finally told my mom what was happening, as any twenty-something would do, and suddenly it became real. It wasn’t in the back of my consciousness anymore. It wasn’t something I could ignore, now I had spoken it into existence. I vomited daily, often after (or during) every single meal. I felt ill and tired. So tired. Beyond tired. I’d never snoozed an alarm in my life until then.

It’s like a switch flipped and I was panicking. A looming threat, now, rather than a far off worry. But, I had just moved and didn’t have a doctor established here yet. I called gastroenterologist after gastroenterologist only to be told I needed a referral or they weren’t taking new patients despite their website saying otherwise. I then called primary care doctor after primary care doctor, their schedules booked for six months or more. I know I had done this to myself, in a way, by waiting until it got this bad, but now I was frustrated and exhausted too at the circles I kept having to go in finding another doctor to call, hoping it would work out, and then getting some form of no before having to start the whole process all over again.

After what felt like one million calls but maybe was closer to a dozen, I found a gastroenterologist that didn’t require a referral. I generally prefer female doctors, but I didn’t even care at that point. I took the quickest appointment I could with whoever was available.

I made a list of all of my symptoms so I wouldn’t get doctors-office-blank-mind syndrome I always seem to get where I waltz in with ten things to say and leave only having said one. He pulled up the Bristol stool chart and asked me questions, too few in retrospect, but I had my list so I could bring up things he didn’t ask about. I felt silly, almost, saying “oh and I’ve also noticed…” over and over again, but I refused to leave anything off the table now that I was there. I had come all this way, metaphorically and mentally. I might as well make it worth my while, even if it was embarrassing to describe that bodily function.

He said this sounded serious and wanted to do a colonoscopy and as much as I dreaded that, the validation was a relief. I maybe a little bit expected to be let down easy, told to drink more water or eat more fiber and be on my merry way.

Sometimes, I struggle telling the difference between what getting older feels like and what’s actually a problem. If this is what life is supposed to feel like. If the convergence of my life stressors had simply exhausted me and the rest were just normal things I chose to blame for what I was feeling inside. Some invented illness masking stress and, yes, grief. Grief from the move, for my cat’s health (she’s fine now!), for my grandmother who passed after her stroke.

His acknowledgement that it was serious was affirming in a way I wasn’t expecting. It turns out, this wasn’t what life is supposed to feel like. But it was what I was feeling.

I had my colonoscopy prep the day after Christmas. It, for obvious reasons, was horrible. I had the, honestly to-be-expected, privilege of vomiting the entire time I drank the prep, dozens of times bend over the toilet bowl in addition to the already-frequent bathroom runs from the prep itself. I ruined Jell-O for myself forever, seeing it come back up. In this time, I worried too that I’d somehow made it all up. That, again, this was what everyone felt like and they just did a better job coping with it. That I’d wake up the next day after it was all over and have wasted everyone’s time.

Afterwards, though, the doctor came into the recovery room and told me I had Ulcerative Colitis. I bet you thought I’d say Crohn’s right? Not quite yet. He put me on Mesalamine, the pill version and suppository version, and told me to schedule a follow-up visit.

A few weeks later, I went into the office where he was over an hour late to my appointment, said a few vague sentences about UC, laughed at one of my questions, and then sent me on my way, scheduling a follow up colonoscopy in a year. I left, not quite satisfied, but I knew I could Google and Reddit as much information as I could and at least I had some medication to help me now. Good enough.

And the pills seemed to help for a few weeks, calming the bleeding which was the most worrying symptom to me, and so I thought badda bing badda bang, problem solved. It easy, mentally, to take a few pills every day and call it good. It didn’t quite register that I was…sick. Like, permanently sick. Forever sick.

Soon, though, the exhaustion came back, as did the bloating, the abdominal pain, the occasional, though not as frequent, vomiting. I switched insurances and found a new doctor, spending more time now that I wasn’t stress dreaming about cancer to pick one with good reviews.

I went in again three months after my initial UC diagnosis and told the new doctor my concerns. We did more blood work and another stool test, my calprotectin levels returning sky-high despite the Mesalamine. She had concerns that I may have Crohn’s and wanted to to a doubly whammy of an endoscopy and a colonoscopy in one go.

In for a penny, in for a pound I figured. So six months after my first colonoscopy, it was prep time again. This time, even though I switched to the Dulcolax and MiraLAX version of the prep, I vomited the whole time yet again. This, it seems, is to be my prep-day fate.

This go around, the doctor took more biopsies than the one before, including my esophagus, my stomach, and, of course, my colon. Results came a few weeks later, showing inflammation everywhere. When I saw the doctor again, just a few weeks ago, she said she wasn’t 100% certain it was Crohn’s but it was the most likely culprit due to the pattern of the inflammation. I struggle, sometimes, when the standard symptoms always list watery diarrhea when my…movements have remained small, hard pieces, but the rest seems to fit so I’m not arguing. Regardless of what it is, it’s mild to moderate, which I’m grateful for. However, the Mesalamine wasn’t doing the trick. My doctor recommended switching to a biologic.

So, here we are. I started Humira two days ago. This post is already ridiculously long, so I’ll save that story and my feelings for another day. I don’t know if anyone will read this, or if anyone will care. But, I do. So, this is me documenting my experiences as I navigate this new life for myself.

I know I had tons of questions I wanted answers to over the last year and I wished I had a too-detailed account of someone else going through the same thing, even just to know someone was going through the same things as me. So, leave your questions or your diagnosis stories below if you want to!