As the air cools and the sun sets earlier, it’s funny that the same people who can’t wait for summer to end also complain about the first freeze right before winter hits. This year I wouldn’t know much about the cold temps of February and March 2018, the April showers and May flowers or the heat of June and July, though I heard it was an especially cruel summer. That is not what made the summer, this story or this year especially cruel for me. I have Irritable Bowel Disease (IBD); to be more specific, I have Ulcerative Colitis (UC), an incurable autoimmune condition. I was not prepared for, nor had ever imagined, a medical diagnosis would bring an abrupt end to my dreams of beginning the new year wearing a pair of fabulous Tory Burch shoes and stepping out on faith into a new venture. I had left my job of the last 14 years, looking to use my talents and expand my employment opportunities as an independent consultant. The best-laid plans … I had no idea the UC flare I had been hiding would demand my attention and bring all my plans to a screeching halt.
Here is the back story. UC was not a foreign illness to me. After a colonoscopy in early 2009, I was diagnosed by one of the top gastroenterologists in Mississippi. Stomach pain and strange bathroom experiences brought me in for the appointment. When I arrived at 7 a.m. for the procedure, I was starving from the mandatory flushing of my intestines. After it was done, the doctor handed me a picture of my intestines; I had no idea what I was looking at. Turns out, it was a swollen, inflamed colon. Mine! The picture came with a diagnosis and many prescribed changes such as modifying my eating habits (no spicy food, no fried food, no—just no, no, nos) and medications to calm my stomach. Ugh!
The doctor also suggested weight loss and recommended a gastric bypass consultation. Offended by the suggestion, I told her I wanted to try to lose the weight on my own. She said there was no way. If I’m honest, a lack of discipline and sincere interest on my part at the time meant she was. My weight has yo-yoed since the birth of my elder daughter 25 years ago. Dammit, I did this. All of it was my fault. I didn’t listen to her or one of my mentors who had heart-to-heart after heart-to-heart with me about losing weight. Because she knew my family, my mentor would focus on them, hoping to inspire immediate change in my behavior. (At the time, that is what I believed she was doing.) I tried exercise and several diets—shakes, liquid food and cabbage. These things worked, too, until someone mentioned anything about my weight loss. That would immediately prompt me to self-sabotage. Yes, to the cake. Yes, I can skip a workout. Before I knew it, the weight was back and had the nerve to bring friends along!
Fast forward to April 2016 and a year of experiencing UC symptoms. I asked my family doctor for a new gastroenterologist referral. (There was no way I was letting the other who made the original diagnosis see my weight gain). I got a new doctor and received the same diagnosis. Although he switched my meds, my fingers were still crossed for a good outcome. During my follow up, my new, very thorough doctor told me something I heard from the original diagnosis but had forgotten: I was so inflamed during the procedure that it almost was not completed. I was still inflamed. Without treating me for more than a month, he asked what seemed to be such a simple question, “Why are your stress levels so high?” I heard him, but I didn’t. I continued working at an even higher level to prove I was down but not out. I agreed to do all kinds of tasks and projects that had deadlines and expected outcomes. I also traveled extensively and tried to squeeze family time in the middle of these new obligations. There was no way I was going to let that diagnosis bring me down. Unfortunately, I reverted to my old eating habits. To wind down nightly, I drank too much wine; I chose to work instead of sleep. I took on too many tasks and had an issue saying “no.”
Despite all the negative things going on in my life, I managed to thrive and pump out some of the best work of my career; however, the UC met me in the middle of all the madness, leaving me in a fetal position in the middle of my bed. I was sick. Kim Possible was sick and still didn’t want to admit it.
On February 3 of this year, I went to the movies with my daughter and had some popcorn (a huge UC no-no). The following day, I woke up with what I thought was a stomach bug. That “bug” left me bed-ridden and bathroom-ridden for 10 days; I was so weak I could barely stand. My husband took me on the first of what would prove to be more than a dozen visits to the emergency room. The ER staff rushed me to the back, triaged me, started an IV and did blood work. The ER doctor finally told me I needed to be admitted and that my potassium was the lowest he had ever seen on a conscious person.
I stayed in the hospital, received fluids and lots of meds; however, I experienced little relief from extreme nausea and vomiting. I was released three days later, only to be readmitted in a few days and diagnosed with five blood clots, otherwise known as deep vein thrombosis (DVT). I had two in each of my calves and one in my lung (known as a pulmonary embolism (PE). What the hell?! This new diagnosis led to a 10-day stay where the professionals tried to figure out how to treat all of me at once. Two more hospital stays and lots of ER visits followed because I couldn’t stop vomiting. This series of events led me back to my original GI who wanted to try a new medicine that required six 30-minute infusions. The infusions resulted in lower stress, less nausea and more rest. Since February, I am down 130 pounds. (It’s the worst way to ever lose weight.) I also follow my prescribed medicine regimen; most nights I sleep eight hours and now I focus daily on mobility.
Through a trying year and an awful summer, I’m hopeful and getting stronger. The GI/UC issues are under control, and I continue to heal. The blood clots, however, are a different story. My months of immobility caused significant muscle loss, leaving me unable to climb stairs without a rail or a ramp. My shower has a chair because I can’t stand long enough to shower, and I have a handicap toilet seat because I can’t stand on my own from a seat that sits too low. I have fallen several times because my legs give out at random, unpredictable times; hence, I keep a cane handy. Finally, I am on blood thinners for the blood clots, so I bruise easily.
What I wasn’t ready for and found particularly cruel is that some of the medicine I take to treat my autoimmune issues are immunosuppressants which reduce the strength of my body’s immune system. Bizarre. Consequently, except for appointments, I spent six months of 2018 inside my home. I was too weak to speak to concerned family and friends, too weak to get out of bed and too weak to get dressed alone. Believe it or not, having to break promises and being confined to the house with nothing but time to reflect on how I got there was the harshest part of my summer.
Cruel summer? Definitely. Self-inflicted by not following doctor’s orders? Maybe. Reckless pride? Yep. Underestimating internal effects of stress? Absolutely. My family crying over my bedside because they couldn’t help? Excruciating. The cruelest part of the summer? Everything! All of it! But I remain optimistic, ready to fight, looking forward to the seasons ahead. To be continued…
Find more information by clicking the links herein about the symptoms and signs of IBS, UC diet and autoimmune diseases.