Hi. I’m Holly, And I Have Ulcerative Colitis.
I hit a milestone today. A year ago, I was diagnosed with Ulcerative Colitis.
This is definitely a divergence from my normal blog post topics. However, I want to use my platform to raise awareness and share my perspective on this autoimmune disease. Please be warned, there are a lot of poop puns (😏)
Taylor Swift Poops, Too 👩🏻🎤
Ulcerative Colitis is an autoimmune disease and a disability recognized by the ADA. However, there’s a terrible stigma attached to this disease. Studies show that the stigma for UC is worse than genital herpes! Because of that, many people with UC suffer in silence. And I kinda did that for a while myself.
So why is there a stigma? Well, my guess is because of the symptoms. Now, I’m going to let y’all in on a little secret, ok? It might shock you. I poop. You probably poop, too. I’m pretty sure your friends also poop. And if you hadn’t already heard, Taylor Swift poops, too. They wrote a book on this topic once. The name escapes me…
Now that we’ve all agreed that Everyone Poops, let’s do a deep dive into some of the symptoms of UC. Not literally- which you’ll agree with as you read the first one on the list. There are many more, but these are the ones I want to highlight since I experienced them.
Pooping. Lots and lots of pooping. Not just regular pooping, a poop flood of biblical proportions. Unfortunately, Noah never built an ark to escape this flood (which is strange because he was Jewish, but we’ll come back to that) Anyway, you’re pooping 10, 15, 20, 30 times a day until there’s only blood coming out.
Urgency. You have to stay near the bathroom because when you have to go, you have to go. You learn this the hard way.
Excruciating pain. I was in such severe pain in the beginning that I told my husband I wanted to go the way of Old Yeller if this is what my life was going to be like forever (it’s not). I meant it.
And how could I ever talk about UC without talking about steroids?
Steroids are a blessing and a curse. That’s why they’ve been nicknamed “the devil’s tic tacs.” If you’ve ever been on steroids, you know this is the case. While the steroids provide a lifeline to taming a UC flare, the side effects, especially at the high doses which are needed in this situation, are horrible. I was on steroids for EIGHT MONTHS.
- Mood swings- The first couple weeks of being on steroids, I was a RAGING asshole. Sorry, Eric (hubs).
- Moon Face and Buffalo Hump- Your face swells an enormous amount into a big round bobblehead. Hence the name moonface. Buffalo hump is a chunk of fat that shows up on the back of your neck. An attractive description if you ask me!
- Weight gain- As if your face swelling to the size and shape of a basketball isn’t enough, you are ALWAYS HUNGRY. STARVING. It’s inevitable that you gain a large amount of weight when you’re on steroids. I gained 40 pounds. I’ve lost 20 of those 40 pounds since though!
- Hair loss- I already didn’t have much to begin with, but my hair fell out faster than Janet Jackson’s nipple circa 2004. (She poops too, by the way) The kicker on this one is that while you are losing the hair on your head, increased body hair is another side effect- one that I luckily didn’t experience.
- Night sweats- Oh the night sweats. I used to ALWAYS be freezing cold, wrapped in at least four blankets at any given time. I have never been a sweaty person. In fact, I used to like to say “I don’t sweat, I glisten.” Well karma came back to bite me for that dumb saying (rightfully so). I was sweating through my sheets every night. I started sleeping on a towel. We bought a tower fan that I had blowing on me all night, and we always set the temperature to 69 (nice).
- Acne- Because the weight gain, moonface, buffalo hump, hair loss, and body hair growth didn’t already make you feel like the love child of Quasimoto and the Cryptkeeper, let’s throw on some acne for good measure. I looked like someone had taken a jackhammer to my face. Luckily, my acne went away quickly after stopping the meds, and thanks to my great dermatologist, most of the leftover spots and scarring from the acne are gone, too.
And last but certainly not least:
Immunosuppression. Your immune system has decided to go to battle with your large intestine when you have UC. In order to shut down that attack, you have to tell your immune system to bugger off for a little while. Steroids are the grenade that you throw at the enemy in battle. This is already a bit scary because even something like a tiny cold can have severe consequences. So what better time to experience my first immunosuppression than during the deadliest global pandemic we’ve ever seen?
So now that you’ve got the background you need on Ulcerative Colitis, here’s how it all began for me.
Poop, Poop, Cheerio! 🇬🇧
I had gone on a trip to London with my husband, and I wasn’t feeling great a couple days leading up to the trip. I figured it was a normal episode of Ashkenazi Jewish stomach insubordination, so I happily skipped onto my flight to Heathrow with Imodium & Pepto packed in my suitcase and the excitement of Christmas Markets, Hampstead Heath, Afternoon Tea at the Shard, and a NYE dinner at sketch’s lecture room and library packed in my brain.
Our first day, we headed to a cute pub called the Holly Bush right by Hampstead Heath (if you haven’t gone, you MUST go if you visit London. Dogs, ducks, wellies, gorgeous greenery, amazing views, and beautiful homes abound). I knew things were “off,” but I still thought it was my usual sensitive stomach. I nervously continued on our journey through the park hoping I wouldn’t need access to a bathroom. We cut the trip to the park short, which was so sad because it’s my favorite place in London.
Every moment of this trip was meticulously planned and I couldn’t stomach the idea (😏) of not getting to do everything on the list. Things started going down the shitter pretty quickly (😏). I refused to give up our planned afternoon tea at The Shard because Eric had never been and it’s a magical experience. Funnily enough, many years ago, I started calling the Shard the Shart. Ah, how my hilarious jokes have come back to bite me in the ass (😏) I ate two tiny sandwiches and probably went to the bathroom five times in that hour-long meal.
We ended up canceling dinner that night and started rethinking the rest of the trip. We’d roam around during the day, but we always stuck close to a bathroom. We got to enjoy a whirlwind trip to Selfridges, where I bought a beautiful bag that I decided I should treat myself with because I was so down in the dumps.(😏) I started admitting to myself that maybe this was more than my normal stomach/bowel antics.
I basically stopped eating. There was an Asian restaurant at our hotel, and my sweet husband went to order me some white rice. You can’t actually order white rice from them, but as I imagine the exchange went something like this: Eric strolled into the restaurant, asked for rice, was rejected, slammed a drink against the bar, flipped a table, and then asked very politely if they could make an exception. They did. I sat in our hotel room and ate white rice.
We went to the grocery store the next day to buy some foods we thought I could eat. Ultimately, I ended up doing some daily gnawing on a baguette for the last couple days we were there.
We decided to brave one meal out- NYE dinner at an amazing restaurant called the lecture room and library. We spent an ungodly amount for this non-refundable reservation and come hell or high water, I was going. So we did. I brought some Immodium and went light on the food. It mostly worked. I say mostly because I still had to go to the bathroom throughout dinner- the bathroom that was located across the restaurant and down a flight of stairs. I felt like a party pooper. Wait! I was technically a party pooper!!(😏)
We had one day left in London and I stayed in the room. I definitely overdid it the night before (though I hadn’t done much at all). At this point, I really knew this wasn’t just some run of the mill upset stomach. I called my gastroenterologist from London. Yes, I already had a gastroenterologist because I also have a lovely condition called GERD. If you know me, you know I’m an overachiever, so of course if I was going to have a gastrointestinal problem, I was going to shoot for two, and if I was going to have two, I might as well have one coming from each end.
I couldn’t get through to my doctor, so I just figured I’d try again when I got home.
The Two Star ER ⭐️⭐️🏥
The flight home was… something. We were in business class, so luckily, fewer people using the same bathroom. We were also right next to the bathroom. What a score. Normally a score on the flight home would be champagne, but clearly my standards had changed quickly. As the flight attendant came around with the meals, she looked at the tray, looked at me, looked at the tray, and with confusion in her voice, looked at me again and asked “is this bland meal… for you?” I picked at the food but really just made miniature sculptures with it on my plate. I decided it was time to sleep. I tossed and turned the whole time. My stomach started really hurting.
We got to customs and thankfully zipped right through. We got back to our home in Austin around 2:30am. Then came even more pain- enough to bring me to tears. I went to the bathroom. I looked down. Only blood.
“Eric, I think I need to go to the hospital.”
So off we went to the closest hospital to us. Turns out it’s not a great hospital, but when you’re bleeding from a place you never really considered as a place that you would ever bleed from, you don’t really have time to leisurely scroll through Yelp to learn about the hospital scene in Austin.
Paging Dr. Asshole 📟
I checked into the hospital. I got my sexy hospital gown on. Which, by the way, I’ve always argued is more of a wrap dress than a gown. A gown is glamorous. A wrap dress ties. This is very obvious to me. I vote we change the name. Anyway, everything else is a little fuzzy from there. I know there was morphine involved, which very likely contributed to the fuzziness. Here’s what I do remember:
I explained my symptoms to the doctor. She asked a few questions. She asked a couple of them twice, clearly having forgotten that she had already asked them. I remember looking at Eric who was visibly annoyed with her. I was in pain and desperate to be treated, so you have to understand that any delay in that was frustrating.
Then, and this part I remember crystal clear, she said “well I don’t see how you’re actually that sick if you were eating out and touring in London”
Just to remind y’all, my London experience over the course of 5 days included one fancy meal that I tasted everything instead of eating anything, afternoon tea where I consumed two little sandwiches (if you know me then you know I could eat 10 of those sandwiches in one sitting), some plain rice, and then last but certainly not least, my gnawin’ baguette. Our outings were short and always near a bathroom. This doctor was being a bigger asshole than, well, my asshole.
I explained to her that I mostly stayed in our hotel room and reminded her again that I was currently in excruciating pain. She said she would call my gastroenterologist’s office. The doctor that was on call told her to tell me to take some Imodium. I knew when she told me that was the recommended treatment that it most certainly wouldn’t work. I had been taking Imodium all week with zero success. I know which doctor she talked to, and I’ve heard that he’s a great doctor. I can imagine Dr. Asshole did a crappy (😏) job relaying my information to him. She also kept asking me to give a sample, but I just couldn’t. She pushed on it, saying that if I was going to the bathroom that much before, then I shouldn’t have an issue doing it now.
So I’m still in terrible pain, the doctor is treating me like I’m overdramatizing my situation, and I am given a treatment recommendation that makes zero sense. I finally convinced them I needed some kind of painkiller. It might have been the tears or the audible shrieking alongside my stomach cramping that convinced them. I was also super dehydrated (go figure) so I got some fluids, some monitoring, and then I think they sent me on my merry way. Again, some of the details are fuzzy. I got home, curled up in fetal position in my bed, and cried in pain the whole night.
Paging Dr. *for* Asshole 🩺
I finally got in touch with *my* gastroenterologist, Dr. Duddempudi (yes, we all realize that she has “doo” and “poo” in her name- let’s move along, ok?) who recommended I do a colonoscopy the following Monday. The following Monday happened to be the first day at my new job. January 6, 2020. I almost asked if we could do it the following week and then realized I would have to be a moron to wait. I was BLEEDING. So we met in the middle and scheduled a flex sigmoidoscopy. For this procedure, the prep was a lot easier than a colonoscopy, and I wouldn’t have to be put under anesthesia. I could start work right after.
A flex sigmoidoscopy is a procedure where my doctor plays the role of paparazzi and my large intestine and colon are the stars of the show. It was quick- maybe 10 minutes. It was uncomfortable- obviously. You lay on your side and stare at the TV where you’ve got a front row seat to the award-winning movie, Sigmoidoscope Jones and the Temple of Doo. (😏) She walked around to talk to me (instead of talking to my touchas which was obviously facing her at the time). She said “You have Ulcerative Colitis.” She put her hand on my shoulder and with true empathy in her voice said “I’m sorry” and while I usually loathe people touching me, in that moment it was really comforting. I was terrified, but also knew I was in good hands.
Before I left, I got a commemorative photo of my visit. Multiple views of the ulcers that had built a home at the very end of Alimentary Canal Street. (😏) I got in my car and immediately drove to a print shop to enlarge the photo to poster size and frame it to mount above our fireplace.
Crap. (😏) I Can’t Believe I Have Ulcerative Colitis. 🆘
I remember after hearing my diagnosis that my doctor was saying something about meds and enemas and I don’t even know. It’s all a blur. I knew absolutely nothing about ulcerative colitis except for a guy that I knew from high school posted pictures every time he got a remicade infusion to raise awareness about the disease (which by the way is awesome, and made me feel WAY less alone, so shout out to Jason O). I didn’t even know what a remicade infusion was. My treatment started with Mesalamine pills every morning and Mesalamine enemas three times a day.
It’s so isolating to have a disease like this, where you don’t really know anyone with it, and you don’t really want to publicly talk about it. I found IBD and Ulcerative Colitis groups on Reddit and I swear they were a lifeline to me during this time. I could ask questions anonymously and compare my experience with the ones other people were sharing in this community. The very practice I’ve dedicated my career to (Community building) was now an integral part of my mental health during my recovery. I used to joke with my friend and old boss (in timeline, not in age), Erica, about building a “Poop Community.” It was a silly joke when we were in one of our wackadoo moods. And now here I was, proud member of the poop community.
One of the things that shocked me most in those groups was how so many people ended up suffering (often to the point of being admitted to the hospital) because they couldn’t afford their medication. The healthcare system in this country isn’t just broken. It’s fucking cruel.
Enemas Are The Hot New Travel Accessory 🧳
I flew to Salt Lake City for my second week at work. I had a carry-on suitcase entirely full of boxes of enemas. In my first 1:1 with my new boss, I had to explain to her that I was diagnosed with UC. I didn’t really know what to say except that I knew very little and maybe we should cut back on my travel…but I don’t really know???!?(and oh boy was that decision made for us just a couple months later).
The meds weren’t enough. Things still weren’t ok. I was at a work event in Dallas at the end of January, and I remember talking to Dr. Duddempudi on the phone in my hotel room. She told me that steroids had to happen. I had no idea at that point what I was getting myself into.
And I’m Hungry Like The Wolf
About a month later, the last week of February, I went to a work conference in San Francisco. It sucked. I had to go back to my hotel room several times, and I was exhausted every single one of the days. I was STARVING the whole time. I guess if it had to happen anywhere though, San Francisco isn’t the worst place to have the wild, untamed hunger of a pack of wolves that hadn’t been fed in a week. I remember WALKING HOME FROM DINNER one night and I stopped to PICK UP A SLICE OF PIZZA from Tony’s Pizza. Yes, I ate pizza for dessert after dinner. One of the days, I ate an entire pizza from Zero Zero. And a whole salad. And cookies. The last day I was there, I went to my favorite food spot in San Francisco- the Ferry Building Farmers Market. My god. I already ate myself silly when I visited the Ferry Building in past visits, so as you can imagine, this visit was something. I ate everything from everywhere I loved in a hunger and roid-fueled frenzy. I can’t even go through the list because it is so embarrassing how much I ate.
Oh, and also during the trip, San Francisco’s mayor, London Breed called a State of Emergency because of a deadly virus that started popping up in a few spots around the US. She was met with pushback, anger, and claims that she was overreacting.
The Diarrhea Monarchy 👑
I flew home on March 1, 2020. I started feeling really sick a few days later. I found out two people at the conference I was at had Covid. We didn’t really know much about it then, so I convinced myself I had it. I was wheezy and had a low-grade fever for days. I was exhausted. At that time, it was IMPOSSIBLE to get a test. Y’all remember the good ole days of “anyone who wants a test can get one,” right? Welp, that was a lie. I KNOW WE’RE ALL SHOCKED that the orange buffoon would lie to the American people during a deadly pandemic (that at the time of writing this, has taken the lives of 361K Americans). Finally, after a lot of phone calls between every agency that had no idea who was responsible for what, a friend of mine- who worked with someone who was friends with someone at the Travis County Health Department- got me an appointment for a test on March 10th. There’s no doubt in my mind that I was one of the first people to get tested in Texas. The requirements were stringent, but I met all of them. I told them about fever, wheezing, that I was at a conference where people tested positive for covid (I had to actually show them a map of the showroom floor and how far my booth was from their booth), exhaustion, and then they asked about two interesting ones- diarrhea and steroid use. When they asked if I was on steroids, I said yes, for ulcerative colitis. Then she asked if I was experiencing diarrhea and I said “Ma’am, I am the Queen of the Diarrhea Kingdom.”
The test came back negative. It turns out, because you’re immunosuppressed when you’re on steroids, even a small cold ends up causing tricky symptoms. If you’re on steroids and get covid, you’re at a much higher risk of serious complications because your immune system isn’t firing on all cylinders to fight the virus. That’s why they asked if I was on steroids. That’s also why I was sick for two weeks.
There Was A Pandemic. There Was A TOILET PAPER SHORTAGE 🧻
A couple days after my test, Mayor Adler cancelled SXSW here in Austin. He was met with a lot of anger and pushback, but there’s no doubt in my mind that what he did ended up saving thousands of lives.
I met with Dr. Duddempudi virtually, and she told me to stay the hell home. Ok, she didn’t say it exactly like that, but I know that’s what she was thinking in her head.
So I did stay the hell home. Eric also stayed the hell home. And we waited. And we waited. And we waited. And we’re still waiting. With the exception of a few hikes, a couple trips to the dog park, doctor appointments, and a 6-hour round-trip to Dallas where we stayed for three hours to attend my grandfather’s unveiling (outside, distanced, masked), we have stayed locked down. Between the steroids robbing me of my immune system, and my UC flare still haunting me (though improving), I absolutely had to stay home and be as careful as possible. It was a terrifying time.
The pandemic still is scary, but at the very least I’m off the steroids.
This seems like a good place to give a shout-out to the anti-maskers. Hey anti-maskers! FUCK YOU.
“Candy? Cigarettes?” 🍭 🚬
I take a lot of meds every day. I call it my drug buffet. It’s varied over the last several months, ranging from 28 meds a day to 12. I think I take 19 now (I’m too lazy to get up and go count). I got a couple new pill cases with the compartments for morning and night and I fill them with my meds every two weeks. Every other Saturday morning. I keep all of the bottles in this rectangular, semi-shallow plastic box, and when I walk into the kitchen with the box every other Saturday, I make the same lame joke to my husband. “Candy? Cigarettes?” because I look like a cigarette girl from the 30s selling my tray of goods. He laughs every time I do it. Clearly he’s easily entertained.
Just Because You Can’t See It Doesn’t Mean It’s Not There 🪐
A year later, life is different. I think about my disease a lot. I think about how lucky I am to have access to great healthcare and an amazing doctor. I think about going back into a flare and wonder if/when it will happen again. I think about a friend of mine that in the past few months got diagnosed with a different autoimmune disease (MS), and how I understand autoimmune diseases in a much deeper, more visceral way than before. I think about other friends of mine with autoimmune diseases. I think about the friend from high school who posts about the remicade infusion he gets for his UC. I have a completely different perspective for invisible diseases and the immense difficulty people have in getting others to understand that just because you can’t see it, doesn’t mean it’s not there. That it’s not real. That it’s not horrific.
These People Are The Shit (😏) 💯
Let’s talk about some people.
Of all of the twitter buddies I could have made this year, a gastroenterologist who specializes in IBD randomly tweets into my life. This new friend, Harry Thomas is my personal exhaustipation specialist and on-call gastroenterologist via Twitter DM. He works at the same practice as my doctor and we met on Twitter a few months ago. I learned from Harry that gastroenterologists can be funny, which was certainly news to me. More importantly, he pushed me in the right direction to get involved in the Crohn’s and Colitis Foundation, and I’m grateful for that push. I haven’t really started getting involved yet, but a first conversation with a member of their board inspired me. It’s the reason I decided to write this post. Harry’s also the only person that I can have a casual Twitter DM chat with about C Diff and FMTs and then switch right to restaurant recommendations. The more people in my life that are cool with talking about poop, the better. This guy doesn’t just talk about it. He’s built his career on a big ole mound of it!
My company, Venafi, made sure I had what I needed to be successful and to take care of myself while dealing with this awful disease. Having been diagnosed on the same day as I started, I can’t imagine having to deal with this any other way.
My tie-dye-loving, Trump-hating, dirty-joke-sharing FIL, Dr. Bob, is my hero. I call him with all of my medical “emergencies.” I convince myself I’m dying regularly, and Bob convinces me regularly that I’m not. He never makes me feel like an idiot (though he probably thinks I am) and he never makes me feel like I’m putting him out (though I probably am). He’s the nicest, chillest man alive. Eric is just like him.
My friends are the most amazing, caring, supportive people on the planet. They’ve listened to every graphic detail of all of my issues, and trust me, they are GRAPHIC. If this is what I shared in a blog post to anyone and everyone in the world, you can imagine the details to which I subjected them. They constantly reached out to ask how I was feeling and never judged me when, in my distressed state, I didn’t always remember to ask them the same question. They’re the part of my heart that I left in San Francisco.
My best friend Linzala has done a million things to support me this year, but the one that stands out the most is her going through a circus to get tested so she could come down to visit me during a crappy (😏) time. That visit lifted me at a time I really needed it. Same for my friend-cousin Becca Boo who got tested and came to spend time with me. I didn’t have to entertain them or figure out things to do. That’s the thing about your best friends- you could sit in a room and talk to them about your bowel movements for three hours and somehow you’re still having a good time together. At this point, I’m sure you’re wondering how I even have friends left. I am too, to be honest!
Eric Firestone.
He carried the entire weight of our lives on his back while I couldn’t carry anything at all.
In my wedding vows almost 5 years ago, I said, “Marriage isn’t 50–50. People will tell you that, but the reality is that that can’t always be possible. Sometimes it’ll be 70–30. Sometimes it will be 100–0 when one of us has nothing to give and the other one has to give everything to hold us up. That to me is love, that to me is our love, and I feel like the luckiest person in the world to be able to share every part of this rollercoaster of life alongside you.”
I said those words in my vows, I felt those words this year.
On top of all that Eric has done, anyone that can be quarantined in the same house with me for this long is a saint.
There’s No Shame In This Game 🙌🏻
Like I said before, Ulcerative Colitis has a stigma, so people don’t talk about it. The more I shared with other people about my situation, the more the numbers climbed of people that told me they also suffer from Colitis or Crohns (both are forms of IBD). I even had close friends tell me about their own journeys with IBD. I was shocked. Nobody. talks. about. it.
So here I am, talking about it. Down to every last detail. I decided that this disease is too serious to stay quiet about simply because I’m bashful about telling people that I poop. It’s out there now. I poop. Alert the press.
There’s a lack of awareness and funding for organizations like the Crohn’s and Colitis Foundation because unlike organizations for diseases like Cancer and MS, which have done an amazing job with awareness and fundraising, it’s much harder to get people to share the details of their Ulcerative Colitis journey. We need to raise awareness if we want to find a cure.
ReMission (not) Impossible 💪🏻
I’m in remission. I focus a lot more on what I put into my body and what foods trigger negative reactions from my body. I try my best to avoid stress since it can make my situation worse. Not the best year for stress mitigation.
I’m going to get involved with my local chapter of the Crohn’s and Colitis Foundation, and most importantly, I’m going to keep talking about this disease.
If you have IBD and never talk about it, please try. It’s so important. If you have IBD and you’re feeling isolated, just remember you’re not alone. There’s communities. There’s resources. There’s me.
One Last Thing 🐝
Beyoncé poops, too.
