the diarrhea no one talks about
My life on the run (literally), living with the lesser known IBD that all my doctors dismissed
If my teenage-self saw that I was publishing an article with the headline including “diarrhea” and the content containing intimate details about my bowels…who am I kidding, I want to crawl under a rock right now. I made a video documenting my experience and still cringe when I think about how many of my friends watched it.
Let’s face it. Talking about diarrhea is embarrassing.
I think bowel problems are quite common, at least in my circle of friends and acquaintances. My childhood best friend has ulcerative colitis. Another friend of mine has Crohn’s disease. Last year, I met a woman who has diverticulitis. My grandma and dad have IBS. When a friend of mine eats a salad, it sounds like someone is blowing a trumpet in the bathroom.
I’m not even going to look at the statistics on it because I am certain at least one person comes to mind when you think about bowel dysfunction. I know it’s become common otherwise the “hot girls have stomach problems” wouldn’t have gotten so trendy on TikTok.
It seems as if Gen-Z is more willing to share their physical and mental struggles than a private shy reserved millennial like me. But if it’s okay to discuss periods, breast exams, commercials for genital deodorant, or daytime ads for ED medication…perhaps it’s time to break the stigma of diarrhea.
The embarrassment prolonged my diagnosis of the lesser-known type of IBD, but I’ll get to that in a minute. I want to lead with a little story first…
Once upon a time, there was a little girl who would swallow her emotions and her stomach became the radar for what was going on. Stressed? Stomachache. Tired? Stomachache.
At some point, this emotion radar got a little too sensitive. A bowl of ice cream? Not anymore, thanks lactose intolerance. Beautifully browned onions on a burger? Maybe you want to rethink that otherwise you’re in for a painfully gassy night.
This stomach swirled into struggling to digest food and this young girl was diagnosed with irritable bowel syndrome. This lumberjack gut couldn’t produce nice healthy logs and was demoted to entry-level chef to make Cincinnati.
Listen, I know you may not be interested in this comparison of gastrointestinal production, but remember that you clicked the article with the headline, diarrhea.
Anyways, all is manageable for this young girl who lives with her sensitive stomach until out of the blue, the entry-level bowel chef starts making broth. Lots of it. And it won’t stop.
This young girl…well, I guess not so young anymore, had just gotten over the flu and her second round of Covid. “Maybe my body is just cleansing itself.”
That girl was wrong. One to three bathroom trips a day had suddenly escalated to fifteen or even thirty times a day. It was like you went to a sketchy 24-hour sushi bar every day. The toilet became her new best friend. She could have changed her address with the post office. 123 Flush Lane? 56 Bathroom Blvd? Poopville, USA?
After the holidays, the girl decided to just go in (she made the appointment while on her porcelain ship). “Reason for visit?” the woman asked.
“Diarrhea,” the girl whispered.
At the clinic front desk, she got checked in and another woman loudly repeated why she was there.
“Diarrhea?” the woman questioned.
After being brought back, the nurse asked, “What brings you here today?” as if it wasn’t enough torture to repeat the reason over and over. And then again when the doctor came in, they too asked, “So what’s going on?”
It would have been easier to make a shirt that says ‘I have diarrhea’ since the whole clinic knew at that point.
She was worried that she’d pay for an appointment and tests just to hear she had made it all up. You’re just anxious. It’s the holidays.
Turns out, that’s exactly what happened.
The doctor did the usual tests for stool, just to be on the safe side and minimize feeling dismissed, but they still hinted at it being mental. IBS likely.
Afterward, the girl learned what was more embarrassing than the check-in woman saying diarrhea too loudly. It’s much worse having to keep samples in your fridge over the weekend and coming back to the same loud front-desk lady with a paper bag filled with cups of poo.
The girl willingly subjected herself to the embarrassment in the hopes of answers, and found none. It wasn’t Crohn’s, or cancer, or c-diff. No inflammatory markers. No anemia. Likely IBS.
“Come back if symptoms don’t improve,” the doctor said, writing a referral for GI in a few months.
The girl knew something else was going on. She felt awful. Dehydrated, bloated, fatigued beyond belief. Sleep was a think of the past. She didn’t want to wait months for an appointment. She wanted answers and relief, and for someone to take it seriously.
The girl tried pushing through. “Maybe it is all in my head,” she thought.
The girl struggled eating for weeks. Chicken breast and ensure-style drinks settled best but everything still caused horrible, painful, urgent diarrhea. Food poisoning, only without food.
You’d think that it couldn’t get any worse, but it did - clear-ish and yellow-like, almost like pee. You could hardly notice the difference with your eyes or ears. There wasn’t even gas. No trumpet blasts like the friend who eats salads. So, the girl, fatigued and weary, goes back to the doctor’s office hoping for hydration relief.
The new provider denies her request and recommends the insightful idea to drink more water. The provider also asks if the girl has been eating too much salad, and suggests eating thicker foods like peanut butter which is hilarious since it says right at the top of the girl’s chart that she’s allergic.
The provider orders a few other tests and was very dismissive. The girl tried expressing how much this was ruining her life. She couldn’t even be present for a family movie because she was in the bathroom the entire time.
She found a new clinic and provider who took her seriously, which in itself made her feel better. Hope is a powerful thing and something that she had struggled with in the past few weeks. The only hope she had was in Jesus.
Somebody gifted her a charismatic new-age book about healing and how God has given each Christian with the authority to speak to their illnesses with the power of Jesus’ blood and will be instantly healed. “I demand…I declare this mountain be moved and my body be healed.” (insert eye-roll)
The only thing she believed was that God’s will was and will always be perfect, even if it’s not how she hoped it would be. “His purpose is greater than my plan”. The greater healing, the cleansing of her sinful heart, had already taken place and this girl’s physical weakness led to a greater reliance of faith.
Meanwhile, her new doctor ordered a bunch of tests to rule out lesser-known health issues, like bile acid malabsorption and SIBO. This was when microscopic colitis, a rarer form of IBD, was suggested. The new provider made an urgent colonoscopy request.
In an answered prayer, there was a last-minute cancelation and the girl got into an appointment for later that week. Those results would be sent to the GI she had still been waiting to meet, and she drank the salty prep drink (with hard candy chasers).
Now, imagine drinking colonoscopy prep every day. At work. In the car. On a plane. That’s how the girl felt every day, but throw in some pain and other symptoms. In fact, the prep was easier for her!
On her colonoscopy day, laying in the hospital waiting for her turn on the assembly line of -oscopies, the nurses could not get an IV in. Every nurse was called. The senior, “I can do ‘em all” nurse came and failed. Every vein was collapsing. “You are severely dehydrated,” they said as they brought in the ultrasound machine. The girl thought of the salad-peanut-butter doctor, and felt guilty for not pushing for fluids.
Then the GI doctor walked in, their first meeting. The GI seemed annoyed that a simple family doctor had overruled the order of things and got the girl into this exam before ever having a GI appointment.
“Have you been under a lot of stress lately?” the GI asked.
The girl bit her tongue and prayed that she’d get an answer. She was completely fed up with people dismissing her concerns. The GI said she’d still do the colonoscopy and take samples for colitis. The girl asked if the GI could take samples for mast cells. because for weeks prior, the girl had dove deep into heavy research reading medical journals and seeking out medical researchers who had done mast-cell testing on patients with chronic diarrhea. If testing on that day failed, she had planned on making an appointment with a mast-cell provider given her history of histamine intolerance and other factors and get on mast-stabilizers.
The GI scoffed and said there was no such test and refused to do it. The girl decided to address that another day and wait for her biopsy results.
A huge smile crossed her face when she opened up MyChart. Not a smile because she had been diagnosed with a lifelong disease, but because it more or less said:
Patient not insane.
Biopsy proves not anxiety.
The End.
Microscopic Colitis Awareness week is April 7th-15th which is why my April newsletter is diarrhea-themed.
All types of bowel disease are an autoimmune disorder where your body attacks its own cells. Microscopic Colitis is hard to find (or practically non-existent) on all of the bowel disease websites and I hope that changes one day. One commonality of MC sufferers is that they were medically gaslit for months or years, especially if they were younger. The disease is very uncommon in people younger than 60 years old and with only one way to test for it, it’s frequently ignored as a possibility.
Traditional bowel disease (Crohn’s and Ulcerative Colitis) can be physically seen on a colonoscopy and/or on tests. Microscopic Colitis can only be diagnosed with a biopsy of the colon (hence microscopic)
There are two types of Microscopic Colitis: Collagenous colitis: The tissue biopsy would show a thick layer of collagen in the colon lining. Lymphocytic colitis: The biopsy would show an increase of lymphocytes, a type of white blood cell, in the lining.
There’s actually a new, third type now! The Microscopic Colitis Foundation now lists a third type of MC. Mastocytic Entercolits, which is diagnosed by examining the biopsy for mast cells.
Life with the runs sucks, but not as bad as being brushed off by doctors. Anxiety and IBS are valid health suggestions when you have a sensitive gut, but be your own advocate when you feel something is wrong. Don’t be afraid to say the word diarrhea.