Guts.
This is the story of my intestines. Don’t worry — no photos, no super-gory details. And you might be just as excited (read: not at all excited) about this post as you are when I write about other tough topics, like anxiety or our decision not to have biological children!
But in my new tradition of destigmatizing all the things, I’m here today to tell you about how I found out that I have microscopic colitis and encourage you to look after your intestines.
It takes guts to talk about guts — so here we go.
The Before-Times
I’m not sure how far to go back when it comes to before-times. But, for a quick review:
- I was a really picky eater as a kid, but I had no allergies or intolerances.
- After a very dairy-ful trip to Switzerland in 2008 I found out that I was lactose-intolerant. That was… unpleasant. I’ve gone lactose-free ever since (not a fan of alternative milks, tbh)
- Recently I’ve finally found some non-non-sucky dairy-free ice cream (Hot tip: Do not tell me sorbet is an ice cream substitute unless you want to feel my wrath) and I’ve learned I can eat most goat’s or sheep’s cheese (thank goodness!).
- In 2014 I was diagnosed with Generalized Anxiety Disorder. There’s a significant overlap between mental illness and digestive problems. Anxiety, the gift that keeps on giving!
- In 2015 I was “diagnosed” with Irritable Bowel Syndrome. I say diagnosed because it’s not a disease but a chronic condition, and one that many doctors, even gastroenterologists, don’t take seriously. I’ve found that following a low-FODMAP diet has helped me generally manage my symptoms.
- Because of all of this, I accept that I am a pain-in-the-ass dinner guest.
- In late 2019 and early 2020 I developed a soy and egg intolerance. Now just the smell of eggs turns my stomach.
To review — I’m anxious, I’m eliminating foods so my gut is happy… but, given all of that, I‘ve made it work.
And then COVID happened.
Actually, COVID isn’t the worst thing if you have a) anxiety and/or b) IBS. Both of those can get out of control when you can’t control your environment, and boy, can I control the crap out of my house! Despite all of the downsides, my anxiety is at the lowest it has ever been — though re-entering a more regular world should be interesting — and since we started cooking all of our own food I could “eat clean” (as in reduce FODMAPs, not restrict delicious foods).
We stayed at home until, last July, our wonderful friends Yvette and Jeremy, let us stay at their cabin outside of Leavenworth. We were so excited! We had a place to hang out and we could get out in nature too.
Somehow I ended up with a pretty bad case of food poisoning on the trip. Who knows what it was? I tend to over-analyze things when I get sick, but it doesn’t really matter. I did have to take a massive amount of Imodium to manage the car ride home, but I was at home base again, so I could just rest and let my body reset.
Something is wrong.
I wasn’t getting better.
Won’t this pass? I thought. But it didn’t. Nothing I ate helped — it’s like my body was in full-on rebellion. I worked my way through a case of Imodium. I guzzled water. I eliminated triggering foods. I ate far more white rice than any person should consume. Even though we were trying to avoid extra outings (this was early in the pandemic) and even though I was afraid it was nothing, I scheduled an appointment with my primary-care physician.
I mentioned my intestinal troubles in passing to my father-in-law, who is a gastroenterologist and a surgeon. Even though I married into a medical family (my mother-in-law was a nurse) I tend not to share medical problems with my in-laws, which relates more to my issues than anything about my second family.
But that’s how much desperate I was for answers until I could visit with my doctor.
My father-in-law suggested a parasitic infection, something that had never occurred to me. But after a quick visit to the Mayo Clinic (that and WebMD are the two sites I allow myself to visit because anxiety) giardia sounded like a strong possibility given my symptoms. We jokingly referred to it as “my worms” to lighten the mood, but it did take some of the weight off of me because it fit (Note: Giardia is not actually worms but it just sounded “cooler”).
And then it was time for my appointment.
I’ve had some issues with my primary-care clinic as of late — I was on my third doctor in three years (Hot tip: This amount of turnover is a sign!), but I did like this doctor when I met her earlier in the year. She was kind and professional so I was hopeful that this would lead to answers.
I shared my theories, answered her questions, and referred to my notes. She suggested that I take a battery of tests so we could see what was happening. And so I spent the next few days giving samples of all bodily fluids, wondering if something would appear — bacteria, fungi, parasites, weird proteins — anything.
Nothing. Everything normal.
And then as I started to read the results I realized that she didn’t order a several of the tests I had asked for — most notably, giardia.
“I’ll pay for any test,” I told her at the appointment. “Even if my insurance doesn’t cover it — I’ll cover the cost. I’d just like to know what’s going on.”
When I emailed her for follow-up, her response was bland, vapid, flat-lined. No acknowledgment and no apology.
“I thought I advocated myself,” I told Sergio, through my tears. “Does that mean that she wasn’t listening?”
Doctors, tests, and more fun
What to do next? As I waited for results I tried to think about what was in my control (not much). I was already following my low-FODMAP diet and I even omitted the foods that don’t seem to bother me, but technically fall on the no-no list, including things like gluten and some of my favorite foods, like mushrooms and avocados (yes, really).
So I ate gluten-free pasta and was generally sad.
When I inquired with my primary care physician about where to go next, it became clear her investment in me was finished. She said I needed to see a specialist. And this was the point where my anxiety came back to the table.
I’ve not had good experiences at the gastroenterologist. This might be because IBS is not taken as seriously as other conditions. IBS is also much more likely to impact women, and many studies have shown that female pain is taken less seriously than male pain. When I had last visited the practice they wouldn’t even schedule me with a doctor, but with a sour-faced, unsympathetic nurse practitioner who chided me for not perfectly following a FODMAP-free diet. “What did I expect, exactly? Oh, and here’s a brochure.”
But I was still feeling terrible, spending my meetings praying that I would make it through without a sprint to the bathroom or that I could formulate an excuse, like a fake phone call or a fake doorbell ring or fake coughing so I could disappear off of the screen. Had I made an excuse with this person, I would ask myself? What could I offer this time? And I was expending a lot of my free energy recording what I ate and scanning for patterns.
So I called. They (un-ironically) offered me an appointment in late November. This was in August. That would not work for me.
I breathed a sigh of relief and got to searching and found Washington Gastroenterology, a huge practice with offices all around Greater Seattle. I gathered my notes and called.
“Oh yes,” the woman on the phone said, “I can get you in this month. Did you have a practitioner in mind?”
“I’m so grateful,” I told her. “I will see anyone. But — do you have anyone who specializes in IBS?”
“We do,” she said, and we booked an appointment.
Afterwards I went to the page and found my doctor. “HONEY!” I yelled from upstairs. “HONEY! I HAVE AN APPOINTMENT!”
“I’M PROUD OF YOU!” he yelled from downstairs.
“AND I GET TO TALK ABOUT BOWEL MOVEMENTS WITH A GOOD-LOOKING DOCTOR! OF COURSE I GOT THE GOOD-LOOKING DOCTOR.”
[pause, footsteps coming up the stairs]
“Yeah,” he said, seeing the picture. “He is probably the best-looking one”
[Side story: After sharing this with my family, I was also pleased that Sergio, my dad and I all agreed which dentist was “the hot dentist” at our practice.
“He is good-looking,” my dad said.
“Good thing I found you first,” I told Sergio. Because Dr. A is tall. And has perfect teeth.]
Answers?
He was crisp and sharp and confident. That’s my ideal doctor, by the way. Treat me like the smart person that I am. Give it to me straight. Help me see that you stay up on what’s happening. Please tell me you’ve learned something new about my condition since you graduated from medical school.
He took my concerns seriously as he paged through my previous test results. He asked why some things were included and some weren’t. He didn’t laugh at the giardia theory. In fact, he thought it made sense. So he ordered another round of tests, mainly to rule out a whole host of things. He asked me to start a low-fiber, low-residue diet — and in case you haven’t been on that, it’s comprised of white carbs, white fruits, plain protein, and sadness. It’s also supposed to calm down the gut (spoiler: it didn’t).
All the tests? Negative. No gluten problems, no parasites, no bacteria, no worms. No abatement in symptoms. He prescribed me some pills to alleviate cramping (they sort of worked). But treating symptoms wasn’t going to be as useful as finding the root cause.
His working hypothesis was some sort of post-infectious IBS, which can last days, weeks, months, or even years(!). But to make sure I was starting with a “clean” gut it was time for some very, very expensive antibiotics ($600 for a two-week course!). It was possible that something was still hanging on, its little hooks into my intestinal walls, so this super-special set of antibiotics was supposed to clean it out while magically staying only in the digestive tract. Super bacteria is a thing, y’all. Lay off the general antibiotics.
“I think this is it,” I told Sergio. This was mid-September, eight weeks into feeling awful. I was cranky and I would kill for a slice of bread that didn’t taste like cardboard.
You know what happened. Nothing. It didn’t work. One day I just curled up with the cat and cried and let my anxiety run wild, as it likes to do.
What if it was something really bad? My new specialist was matter-of-fact but I knew my symptoms didn’t match much else that wasn’t very serious. In fact, they were almost perfectly in-line with early-stage colon cancer, and that terrified me. Or, perhaps even worse — what if I didn’t get any diagnosis at all? What if I just lived liked this? What if, when COVID was over, I was still stuck at home?
“I’m going to recommend we schedule a colonoscopy,” he told me. “If all the tests are negative, I need to see your colon to understand what is going on so we can find a course of treatment that works.”
Well, then — time to spruce up my guts and get ready for the big day.
The earliest procedure appointment was five weeks away, but I had a date and I knew I could tough it out. I tried to forget about it. I felt terrible no matter what I ate, so I went back to my regular low-FODMAP diet and even had a kick-ass birthday cake (thanks Barry!). I kept reading and cuddling with Sergio and the cat and taking my notes about symptoms, hopeful that answers were coming.
Colonoscopy prep
Preparing for a colonoscopy seems like what it must be like to prepare to give birth. Wait, how is that similar, you ask? Because in both cases people tend to be completely unhelpful in the stories they share and the advice that they offer.
Some doofus wants to tell you how awful it is (in my case, it was someone at the pharmacy and I was too shocked to tell him off) and someone wants to tell you it’s nothing, you’re making a big deal of it. Someone asks you why you would do that at all. Wait, is it cancer? How would you feel about that.
But what is it really like? you want to ask. Just the facts, ma’am. No drama, plz.
So I’ll tell you. Because if you haven’t had one, it’s waiting for you at age 45 or 50. And if you have questions in more detail, I’m happy to tell you even more (privately). No drama and no platitudes.
Anyway.
Several days before The Procedure you stop eating high-fiber foods, like raw vegetables and seeds, giving your body enough time to clear everything out of your intestines (this also “clogs the scopes,” whatever that means, and that sounds rather impolite).
You get a prep kit. There are different varieties. Mine was the “easy prep,” which was a gigantic bottle of Miralax, laxative capsules, and several bottles of Gatorade; other kits come from the pharmacy.
I chose mango Gatorade. Would recommend.
About 48 hours before the procedure you stop eating solid food. When you wake up the day before the procedure you start a clear liquid diet, including delicacies such as clear broth, clear fruit juice, clear gummy bears, and any light-colored Jell-O of your choice. I assumed I would just go by volume and eat as much as I could. I would not recommend this. Or the Jell-O.
Later in the day you’ll start your prep — some combination of pills and fluids. Enter the pitcher of chilled mango Gatorade and a whole container of Miralax (yum!). You get to pour a glass for yourself every 30 minutes and marvel at the mango flavor as you sip through a straw. I sat on the guest room bed and tried to read and hoped that the prep wouldn’t make me vomit, a common side effect according to my prep materials (thank goodness it didn’t).
Get a scented candle.
Take as many showers as you’d like.
Stay close to bathroom.
Sleep with a towel under you.
Be kind to yourself.
Find some really warm and fuzzy socks. You’ll be freezing. Maybe you know this if you fast regularly but it was news to me.
Then you get to do another round of prep before the procedure. Your instructions will vary, but in my case I had to finish it no later than five hours before I left the house (in my case, 6am). You guessed it — more Miralax-laced Gatorade! This is the big challenge regarding your appointment. If you pick an 8am appointment you have to “get up” at midnight to prep. But I am not sure it matters. You won’t be sleeping, my friends.
So I got up at 4am. I was freezing and I couldn’t get warm. I sat downstairs in front of the fire under a pile of blankets with a cat on me and my sippy-cup close at hand.
I dozed off and on until we left in the morning for our drive to the clinic. Don’t expect anything productive or anything restful after your prep begins. You’ll get a fantastic nap afterwards.
The Procedure
Thanks to COVID I was heading in completely alone. I had my ID and my glasses but nothing else, and Sergio waved from the door and went to sit in his car. They were staggering appointments so I was alone in the waiting room until my nurse came for me.
I know many people have different opinions on medical procedures during COVID. There’s always a risk (and I had to sign a COVID risk waiver), but the clinic and the staff had everything down. Everyone was in full PPE, I was masked, everything was clean, and I was far more nervous about the procedure. I got into my gown and waited as the nurse got me hooked up to an IV.
“Oh honey,” she said, looking at my chart. “You’re so young.” She continued to read through my results and the notes. “You must feel frustrated. Let’s hope today gives you some answers.”
“Thank you,” I whispered, trying not to cry at her kindness. I didn’t feel so young, but in recovery I realized I was probably the youngest patient there that day by about 40 years.
I got to meet the rest of the team, my doctor included. They answered my questions and said it was time to roll (literally) into the procedure room.
“They might roll you on your side,” someone told me. “So be ready to assume the position.”
But they just gave me an extra blanket and told me they would start the drip in a moment and then WHOMP.
And that was it.
I woke up and I couldn’t see a damn thing. Where were my glasses? I started to feel around on my chest and sides. My eyesight is AWFUL without corrective lenses. But as they were nowhere in sight I just did a body scan.
I seemed to be all there. So that was good.
The nurse reappeared and offered my my glasses and asked how I was feeling. “Okay?” How does one answer that question? “How did it go?”
“The doctor will be in soon,” she said. “Can you try to get dressed in the bed here?”
I tried. My hands didn’t operate correctly. Pant legs escaped me, at least for a few minutes — and bra clasps? Good luck. I was thankful I selected slip-on shoes that day.
Once I was semi-presentable the doctor came in to review. I would have greatly benefitted from having Sergio at this point, as I was trying to squint my eyes and look focused and intelligent.
I did remember the following:
- Not a lot of redness or swelling (good).
- They took a bunch of tissue samples for analysis (data is good).
- They found one large polyp, which they removed (bad, possibly very bad). I didn’t fully understand this at the time but later that day I understood it did not bode well.
On the positive side, unlike when I had my wisdom teeth removed and asked if I could have them, I did not request my polyp. I know I’m a flirt a) when I run a high fever and b) coming out of anesthesia.
I got to sip a little bit of juice and sit in a chair until I could stand on my own. I left with a goody-bag that included after-care instructions and (enthralling) pictures of my colon and then they walked me to the car.
I went home, ate the best white rice of my life, and slept.
In case you are wondering, your digestive tract is pretty messed up for a few days after the procedure — at least, mine was. I did have my favorite nurse/mother-in-law available to answer questions. It sounds like recovery is different for different people, but don’t assume you’ll feel great right away. I took off an extra day from work after the procedure which was the right decision.
And then had to wait 10 business days, including the Thanksgiving holiday, to get my results.
Diagnosis!
Diagnosis and treatment.
Finally I got the call. I sat down on the floor with my back to the wall so I didn’t have far to fall (tip, really) should the results be hard to hear.
He got the big news out of the way — the polyp was entirely benign. “I was concerned,” he confessed. “Polyps of that size are generally pre-cancerous if not cancerous. But it is completely benign.”
And next? He told me he had a specific diagnosis thanks to the biopsies.
“You have microscopic colitis of the lymphocytic variety.” In short my colon accumulates too many white blood cells, likely triggered by an infection I had in the summer that cleared before I took any tests. Even though the infection cleared, my white blood cells went into overdrive and the colon stayed inflamed for months. It’s much common in people older than 50, so it wasn’t something that was initially on his radar, but because he took biopsies it was a straightforward diagnosis.
The best news? THERE WAS A TREATMENT. I’d be starting on a steroid called Budesonide and take a mega-dose of some very expensive (but clinically-proven) probiotics called VSL #3, which would hopefully heal my colon.
Pills down the hatch, I prayed.
Reader, it was magical. In a week it was like nothing had ever happened! Was it possible that, like much of 2020, this was just a bad dream?
Now eight weeks into the treatment it’s clear that it has worked. I can’t get an updated view without another round of mango Gatorade (hard pass) but I feel normal again.
Let’s be clear — there are certainly downsides to this treatment. I upped my exercise near the end of the year because assumed I was just a little too into the Christmas cookies… Then I realized that one of the main side effects of steroids is not only weight gain, but redistribution of existing body fat (as in, I’ve never put on weight there, what’s going on?). I won’t say I have a beard yet, but my hair and nails are also growing like they never have before. So I’m hairy and I have extra insulation. But at this point I couldn’t even begin to care.
When I had my January follow-up appointment with my doctor I thanked him and cried. “My anxiety was helping me to believe this would be a permanent thing for me,” I told him. “Thank you for listening to me, answering my questions, and telling me what was actually happening.”
The best news? Today was my first day of reducing my steroid dose. In a few week’s time I’ll be off of them completely. If my body can maintain things on its own, I can really get back to my version of normal.
Microscopic colitis can be chronic, or it can happen once, or it can flare up after an infection.
Now I know what to do.
Lessons learned.
What did I learn about myself through this process? Here are just a few highlights:
- Take your gut health seriously. It’s not nothing. The gut is called the second brain for a reason. Bloating, cramping, pain, and changes in bowel habits can signal serious problems. And because everyone has a different normal, listen to yourself before someone else tells you that you’re “in the normal range.”
- Find a doctor that will advocate for you. I signed up for One Medical through work and now I’m back with my previous primary care doctor who I loved. (I feel like an idiot for leaving. She seems to be non-plussed about my departure and return. I love her for that.) I’ll never go back to my previous practice again.
- I have a deeper understanding and appreciation for why people might pursue alternative treatments (eg; non-Western medicine). I was able to get answers. If I didn’t, I know I’d be more open to other options because bodies are weird and hard to understand.
- If caught early, colon cancer has a 95% survival rate. Get your colonoscopy on time. Because colon cancer is slow-growing, you’ll only need to return every 10 years if your procedure is normal. Colon cancer rates continue to rise and our American diet isn’t helping. It is likely that the AMA will change their colonoscopy recommendation from 50 to 45 to account for this.
- Guts and what comes out of them are weird, but it happens to all of us. I’m not of the “tell everyone all the details” persuasion, but find someone you can talk to — a spouse, a friend, a family member, a therapist, a support group. If you don’t feel comfortable being that person for someone else, that’s okay! You can still decline without adding to the stigma and shame around these body parts and conditions.
- Eat more cheese. Even when life is super-crappy, it makes everything better.
Thanks for your care, kindness, and support. I hope this account shed some light on a new topic for you or reminded you that you’re not alone!
Be safe, be well —
Sarah
