It's the End of the World as We Know It. I'm Not Fine.

A few years ago my family started renting houses in various locations for Christmas in order to accommodate the growing number of humans in our family. In December of 2019 we rented a house in Pennsylvania on the Youghiogheny River about an hour north of where my mom lives in West Virginia. I was looking forward to a week with family, but my body had other plans. I ended up with the worst virus I've had in years. At this point COVID was a headline from the other side of the world, but I had all the symptoms: violent cough, fever, chills, exhaustion. I still made a turkey on Christmas Eve and got up with my son in the wee hours of the morning when he wanted to see if Santa had come. I went to urgent care a few days after Christmas, and upon walking in they handed me a mask. It felt so weird to have it on. They diagnosed me with bronchitis and gave me a breathing treatment. The same day we took our son to a different urgent care where he was diagnosed with strep throat. We entered 2020 definitely not being our best selves.

We visited friends in Florida in January, and per usual I was pretending to be well. But my Crohn's had been in a downward spiral for months. In early February I had an MRI at the University of Michigan to try to figure out what was going on. But even with my health issues I wasn't slowing down. I was working more hours than existed in a week, and we were touring kindergartens to see where to send our son in the fall. Life was as hectic as ever. 

We had plans to spend an adult weekend in Florida in March, and on March 14 we had friends over to our house for dinner to hang out and talk about whether we should go. COVID-19 had started to become more prevalent, and we were getting scared. We wanted to go on vacation but didn't know if it was the smartest move.

The next day, a Sunday, we decided to cancel our trip. I thought it was a blip and maybe we'd go in a few weeks or months. On Monday I went to city hall to discover that we had a staff person with COVID-like symptoms. This person had been in a number of cross-departmental meetings late the following week. He was getting tested for COVID, but this was early in the process where tests took ages. I remember looking at the Mayor and telling him he had to send people who'd had contact with this person home.

I left the office at noon on Monday, March 16. I remember sitting in the quiet of my dining room and wondering what was next for our world. I picked my son up early from preschool, and he was only one of three kids there (usually there were 15 or so). The next day we started a weird life of working from home without childcare. I was deputy mayor. My husband also had a big executive job. And we had a five year old and no childcare. 

I don't entirely remember those early days. We moved from conference calls to video platforms. I alternated between a thousand calls and playing with my son. We had a Shipt membership, and I tried to get groceries delivered. I refreshed the app like I was trying to get the hottest concert tickets. Landing a delivery time was seriously winning. We wiped our groceries off with Clorox wipes when they arrived. We got our first masks. We barely left the house. We had zoom calls with our best friends and started cocktail hours early. 

My first mask made by my mother-in-law

All the while my Crohn's symptoms weren't backing off. I was terrified of getting COVID given my immunocompromised status. In May I woke up in the middle of the night with bowel obstruction symptoms. I was terrified. I walked laps around the first floor of my house hoping the obstruction would clear. The thought of going to the hospital was petrifying. I let this obstruction go longer than any I'd ever had. By the time I was violently throwing up and in tremendous pain we called 9-1-1. The ambulance took me right into a room.

It was exactly like every other obstruction stay I'd had: pain meds, anti-nausea meds, NG tube, admitting to wait for it to clear. It was also entirely different than any other hospital stay. I wore a mask. The health are professionals wore a ton of personal protective equipment. I couldn't have visitors. My obstruction cleared in a few days, and I headed home grateful to have avoided surgery. I had a new appreciation for healthcare workers and all they were dealing with during the pandemic. 

Bowel obstruction: May 2020 edition

The summer started to feel almost normal. We were able to go to the pool and eat outside and see friends who we trusted to keep their bubble small. Then in late August I had another obstruction. It was the same drill but I was scared. It was my third obstruction in less than a year. I didn't know what was causing them, but I realized I needed to make some changes.

Bowel obstruction: August 2020 edition

In August my son started school virtually. We were fortunate to have a phenomenal friend offer to come over to the house four mornings a week to help keep him on track. My husband and I alternated helping our son with school in the afternoons. But work was wearing on me. It had been a busy nearly 6 months balancing work without childcare. I was struggling with my health and realized I didn't want to do it anymore. 

I'd always wanted to do consulting work, so I set up my own company. I wasn't entirely ready to be done at the city, so I proposed to the Mayor that I switch to part-time to work on economic development and other projects that needed a point person. I would officially step down as deputy mayor at the end of 2020, but before I could I ended up with another obstruction in December. I was never so sure of my professional decision as I was at that point.

Bowel obstruction: December 2020 edition

In January we decided to spend the month in Florida with friends. My son was in virtual school and we were working remotely, and we knew we may never have this opportunity again. We packed up the car (including our dog) and drove to Fort Myers. I was figuring out my new balance of working part-time, and I began to work on signing a few other clients. I I also ran every day while we were in Florida. By the end of the month I was sure I had a fistula. We headed home a week early so I could get an MRI.

The MRI revealed I was right: I had another fistula. My GI doctor referred me to a surgeon at the University of Michigan. In March he placed a seton at the site of my fistula/abscess. I had a seton place in 2016 that was in place for 8 months. I wasn't thrilled about it but knew it was part of the process.

In March and April my husband and I also received our COVID vaccines, and I felt like I could breathe for the first time in a year. My business was starting to get busy, and I decided the city was creating stress I didn't need. In the late spring I told the mayor I'd be quitting on June 30. I love my city, but it's a decision I haven't regretted for a minute. 

Life in the summer of 2021 started to feel normal. We had a hot minute where we weren't really wearing masks. I felt much better with the seton and was cycling between different antibiotics to help alleviate my symptoms. 

I began to feel panicky about my son attending school in person. In August we sent him to school, and I had quiet time in the day for the first time in a year and a half. And then I got another obstruction.

This one cleared, and I reached out to my surgeon to see if there was anything he could do. He told me there wasn't, and surgery was always a risk when one has had as many abdominal surgeries as I have. At this point I'd had the seton for 8 months, and I asked him when it would be removed. He said if I thought the abscess was healed I could remove it myself.

I was floored. A seton is a small piece of silicon that was, in this case, right by my anus. There was no universe in which I was going to remove it myself. So I made an appointment with the surgeon in Lansing who placed my first one. He not only removed it but also took time to talk to me about my bowel obstructions. He recommended surgery and I jumped at the chance for a solution.

We scheduled the surgery for early December, and I was ready to go. Unfortunately the world experienced a significant COVID surge, and all elective surgeries were canceled. We rescheduled for January 3. 

The holidays were quiet, and two days before school was scheduled to start we found out my son would be virtual the first week. I had surgery scheduled and had no idea how we'd manage. Thankfully my mother-in-law offered to take our son and help with school. 

On January 3, 2020 I went in for surgery to see what was causing my obstructions. My surgeon said he'd try to do it laproscopically, but it might not be possible with my scars. I woke up to an open incision and being admitted to the hospital. The surgeon told my husband I had a piece of my small bowel that had fused to mesh from a previous hernia surgery. He had to remove it and resection that part of my small intestine. He said that piece was "like concrete" and likely the cause or at least partly the cause of my obstructions.

Initially I felt okay. I was on pain and nausea meds, but things seemed to be moving in the right direction. Four days after my surgery I was released from the hospital. I was home only a few hours before I started throwing up. The next day I called my doctor's office and was told they'd readmit me to the other hospital in our community. 

I gingerly made my way through the hospital, and when we go to the floor the nurses knew me from my many visits. I was told they didn't have a room for me, which was surprising, but also learned my roommate had tested positive for COVID just minutes earlier. So they found a space for me with a young roommate who also had stomach issues.

That night they gave me contrast to drink for a CT scan, and I promptly threw it all up. Overnight my roommate was quiet and respectful, but the next day her mom and boyfriend showed up to loudly play video games and facetime with everyone they knew. I was walking laps around the hallway and complained to my nurse who indicated a private room was becoming available any minute. Luckily she put me in it. 

I moved into my private room on Saturday. On Sunday they put in an NG tube. Nothing was moving. I wasn't even passing gas (the question they asked me 100 times a day). On Wednesday my doctor did a pouchoscopy, and there was no issue on the bottom end. Later that day they tried to do a small bowel follow through, and I threw up all the contrast again.

January 2022: my fifth hospitalization in two years

I was at rock bottom that day. My intestine wasn't responding. It had been 9 days since my surgery. I'd been in the hospital that whole time save a few hours at home. I missed my son (who couldn't visit). I missed my husband (who could only visit a little bit). I was genuinely worried I was going to die. 

Then on Saturday it happened: I passed gas. My husband happened to be visiting and I yelled joyfully from the bathroom. Then things started to move quickly. I passed more, I got to eat more, and on Tuesday, 16 days after my surgery, I was released. 

I was only home 4 days before I started walking on the treadmill. Exercise and being strong are a critical part of my recovery. I had just had my 7th abdominal surgery and my longest every hospital stay, but I wasn't going to let it keep me down. 

Unfortunately in the three months since my surgery my Crohn's symptoms haven't gotten better. I switched GI doctors and left U of M after 15 years. I used the University of Michigan like a shield. It's one of the best health systems in the world, so they were doing the best treatment right? I haven't seen my doctor at U of M since 2018. I saw the PA in clinic and on video visits, but I couldn't get in with my doctor. In 2022 my PA is on maternity leave and my doctor is doing some sort of research sabbatical, and I honestly feel like I've been managing my own care. After the whole "take out your own seton if you want" thing I feel like a change is needed.

And on May 4 I'm having another surgery to place another seton. The abscess isn't going anywhere, and as much as I hate the setons they work. 

So I sit here, in a steamy natatorium at my son's diving lessons, feeling great about where I am professionally and as a mom, but my health continues to be a struggle. I'm more exhausted than I've ever been. My body is struggling. But I work out 6 days a week. I move all day until I collapse at 8 or 8:30 pm. But I run my own work schedule and get to drop off and pick up my son from school nearly every day. We had good health insurance. I have an amazing partner to help pick up the slack. Overall I'm struggling, but I'm hopeful. And I'm so grateful for all the resources I have to help me navigate this disease.

In two weeks I'll be having my next surgery, but I'm having our besties over for Cinco de Mayo. Can't stop; won't stop.