Around a Hospital in 80 Days for the Ulcerative Colitis That Almost Killed Me
Author’s note: The following contains graphic descriptions of bowel failure.
The thing about major medical issues is they don’t always set in suddenly with a dramatic collapse or an important body part waving a sign that says “I am broken.” Often it starts small, subtle, slowly escalating below your radar until horrified loved ones take you to the ER and you realize you’re the proverbial frog in the boiling water.
Back in September 2015, I was doing pretty well. I was overweight but always had been. I had a daily schedule, a volunteer job I loved and was taking care of friends and family. I was happy.
Then the bleeding started. Slight traces of crimson in my bowel movements at first, then bloody diarrhea. At first I blamed a medication I was on and went to the doctor, who agreed and took me off it. It didn’t help, so they sent me to a gastroenterologist. He wanted to do a colonoscopy and scheduled me for one in three weeks. I went home.
And I continued to deteriorate. I ran to the bathroom more and more frequently. I grew weaker and paler. I lost bowel control. Fortunately for me, I live with family who can step up and help me out if I can’t always take care of them. So finally, when I reached a point where I was sleeping in half-hour segments on a couch covered in garbage bags, they convinced me to go to the ER.
What I remember most about the ER is the tiny little 19-inch CRT TV on the wall next to the door. I stared at that thing for hours, watching “Pawn Stars,” and as the night progressed, some yelling guy trying to sell a set of like 900 kitchen knives for $40, and finally, as late night became early morning, a show on Cartoon Network called “Wabbit” about Bugs Bunny and the other Looney Tunes. It wasn’t bad, but honestly, WB needs to realize what made the original shorts so great is a mixture of the irreproducible genius of folks like Chuck Jones and Mel Blanc and the ability in the time to be what is so politically incorrect now that lawyers would move to California from other continents just to sue them. Those shorts weren’t made for kids, and I think what’s made now is.
What’s also not made for kids is ulcerative colitis, though far too many of them get it. That’s what I’d eventually be diagnosed with, as the doctors decided to admit me based on the amount of blood I’d lost and my tendency to be white as a ghost and fall over when I tried to walk, like some sort of post-Super-Bowl-victory Casper. I was there for two weeks and was stabilized by blood transfusions and IV fluids. For the first time, I was in a place I literally could not walk out of.
Ulcerative colitis is pretty much what is sounds like: your colon becomes inflamed and ulcerated. It’s painful. It’s misery. It can be fatal.
I got my first taste of hospital food, which is famously terrible. If you’ve read my bio, you know I’m a vegetarian, and I was worried about not only getting fed terrible food but getting fed terrible food with gravy on it. (If you like gravy, more power to you. Quaff all you like. It’s just not my thing.) When the food services worker came to take my order, I was shocked. She gave me some options, and then handed me a menu. I was floored (not literally, that came later). I saw food I wanted, I ordered it, and it was actually good. That was important because as I would soon learn, my hearty appetite was all that was keeping me alive.
I was discharged, still weak, sick, hurting, and incontinent, on November 12. I had to buy adult diapers.
Now, I always had a particular view of adult diapers. It’s probably the same as yours, which is something like gah! But, if you’re going to have to wear adult diapers (something I do not recommend outside of certain sexual practices, to each their own), the industry has come a long way from being huge and bulky. They’re not terribly expensive and can give you a touch of freedom. You’re better off not needing them, but if you do, it’s better to have them. I still have a package at the foot of my bed a year later because once you lose confidence in your bowel control, it takes a long, long time to really get it back.
I spent the next two weeks between the bathroom and the closest bed. It wasn’t easy, and I kept bleeding and getting worse, slipping away a little more with each bowel movement. I had a quiet Thanksgiving with my family — the first I couldn’t cook for since I’d become an adult, but the next day, I collapsed. Then came my first ride in an ambulance.
This hospital stay was different. The doctors were more concerned because they hate it when you die on them. It’s a real pet peeve, a kind of professional taboo for some reason — just ask any doctor. Fortunately, my gastroenterologist practiced in the hospital I was taken to, so he came to check on me and work with me. He finally got the colonoscopy he wanted. The diagnosis was ulcerative colitis (UC), I was put on powerful steroids with the promise of other medication to follow once I was stabilized. I received two more blood transfusions because I was bleeding out, slowly. And I was malnourished: my sick, weak body couldn’t absorb nutrients from the food I ate.
The thing about colonoscopies is they suck big time. You have to spend hours drinking a huge jug of laxatives and flushing yourself out (as if my digestive system wasn’t doing that well enough on its own, I was going through underwear like tissues), then they knock you out for the procedure because gah. The drug they used for that was Propofol. In my case it was administered (by IV, via a syringe so comically huge that I initially mistook the anesthesiologist for a livestock veterinarian) by someone competent who cared whether I lived or died, so I was only out for two hours with no ill effects.
Once more I was sent home, in early December. I was given drugs to slow my bowel, and my gastro doctor put me on a medication to control and heal the UC: Remicade. I had to go to the hospital on a schedule for the infusions.
By this point I was walking, slowly, with a cane and a backpack full of Emergency Diapers. I learned to always stay near a bathroom, and when that wasn’t close enough, how to change myself in a public toilet without leaving my dignity behind. (Pro tip: wear slipper shoes with no laces.) For the most part, though, I was too sick and weak to go much of anywhere. My life had become a waiting game. Would the illness prevail before the treatment could work?
I spent three months in diapers, agonizing over what was happening to me, getting slowly but steadily weaker. It was becoming abundantly clear that the Remicade was not working. I was still in diapers, still sick and miserable. My gastro doc began to talk more and more about surgery. He sent me to a specialist at Vanderbilt for a second opinion.
I made several trips to Nashville. Medications were tried. Tests were performed. More waiting. It was finally decided a colectomy was my only option. That was a major blow. How could I be this terribly ill? What was happening to me? I had to lose a part of myself. Sure, it was killing me, but I still had to struggle to face it. Colons are very important and not just in grammar.
Meanwhile, I continued to deteriorate. By June, I was barely ambulatory. One night, I got up to use the bathroom, and the next thing I knew I was lying on my back looking at the ceiling. I got into a debate with my family over how sick I was, which is hard to win when you’re laid out on the floor. I limped and shuffled out to my brother’s car and went back to the hospital.
More colonoscopies. More IV fluids. More blood. Once more, I was stabilized and sent home. But this didn’t last. I fell again my first night back. And this time, I couldn’t get back up.
The paramedics had to pick me up from the floor and bring the gurney down the hall to get me to the ambulance. Back to the ER yet again. More tests, more waiting, more pain, more fear. I was admitted for the third time in six months, and I was expecting another two-week stay. But this time was different. This time was far, far more serious.
I remember sitting alone in my room. It was late afternoon, and shafts of sunlight played across the wall. I was scared, miserable, and crying. The nurse came in and paused, regarding me. My heart skipped a beat. What now? Kidney failure?
“Your shirt,” he said.
“What?” I was confused.
“Your shirt. It’s on backwards. I see the pocket on your back.”
I look down at my collar. I see the tag.
The next two weeks were a blur of doctor visits, phlebotomists, and medical tests. I was sicker, weaker. I had an opportunistic C. diff infection. That alone can kill people. Nurses and doctors had to suit up to come into my room. I was dying, slowly. My GI surgeon made the decision to remove my bowel and install an ileostomy.
An ileostomy, for those who do not know, is similar to a colostomy. Where with a colostomy, the large intestine is diverted out the abdomen to bypass a diseased or otherwise nonfunctional or missing section of bowel, the ileostomy diverts the small intestine out the abdomen. The protruding intestine is called a “stoma,” and a bag is glued over it to catch the waste.
The surgeon ordered a precautionary CT scan before the operation, purely on a hunch. What it found stunned everyone: I was riddled with blood clots in my lungs and a massive one running from my kidney to my heart. It was one of the biggest clots they’d ever seen. If they had opened me up without knowing it was there, I would have died instantly. As it was, I was days away from death.
An emergency surgery was scheduled for July 11. It was June 29. The surgery would be in two phases: First, the heart surgeon would remove the big clot. Then, the GI surgeon would install the ileostomy, leaving in my large intestine because my body couldn’t take any more trauma. I’d be opened from collarbone to pelvis.
In the meantime I was put on high doses of IV blood thinner, with samples of blood to be taken every two hours to make sure it was working right. Pretty soon the phlebotomists were having to milk my fingertips and dig for veins with needles because my arms were so riddled with track marks that my veins wouldn’t rise anymore.
Every two hours, day or night.
The day of the surgery came, and the last thing I remember was having my abdomen shaved. I came to nearly a week later. No one knew if I would. Few knew what was going on. I remember feeling so weak and tired, and an alarm kept going off. Whenever it did, a voice told me to breathe. I had to breathe. I’d draw a deep breath, and the alarm would shut up. Then I’d relax, and it would go off again. Repeat.
Eventually I got to where I could breathe and got my bearings. I was in the cardiac ICU. The surgeon came in and explained what had been done: on the first day, they had stopped my heart and supercooled my body, using a machine to circulate my blood. The clot was removed, and they left me open overnight. The next day, the ileostomy was installed. Then they closed me up and hoped for the best. The doctors kept me in a coma for four days while my body recovered. I spent over 12 hours clinically dead. “Ninety-nine percent of people would not have survived this,” the doctor said. He seemed impressed. I was stunned.
I could barely move my arms and head. I couldn’t move my legs at all. My voice was a hoarse whisper and gave out easily. But I was alive. Now to recover.
The next few weeks were painfully slow. I wanted to get better. I wanted my life back and was fighting as hard as I could for it. But despite what my family would say whenever they saw me, I didn’t feel like I was getting anywhere.
But I was. After moving to the cardiothoracic ward and from there to the general floor, the doctors decided I was ready for discharge to a rehab hospital.
For me, the rehab hospital was where things really started to turn a corner. Physical therapists came every day. I worked with them. They gave me bed exercises. If they asked me to do 10 of something, I did 20. I did them after every meal. I kept dumbbells by my bed and wore ankle weights to help rebuild my muscles. I made a vow: I would walk out of that hospital under my own power by my birthday on August 29. It was August 14. I had a lot of work to do.
I started sitting in my wheelchair whenever possible. Then I started taking it for laps around the floor, using my hands and legs to propel me. Then I was able to stand and use a walker. Then I was able to shuffle about on my own. I walked into the bathroom and looked in the mirror for the first time in months. A man I barely recognized looked back at me. I had shed nearly 100 pounds.
On August 24 I was discharged, and I walked out the doors on my own. For the next several months, I recovered and convalesced at home. I slept on a modified bed made tall enough for me to get in and out of easily. I endured the constant pain of my inflamed bowel. Narcotics and cannabis only provided partial relief for short periods. It was a waiting game again — endure the pain until my next surgery, scheduled for February 3, 2017.
This surgery was different. I awoke in agony. I got morphine every few hours, and it still was not enough. I was discharged after three days — the doctors fearing an opportunistic infection. Back to the bed. Narcotics every four hours. I was in so much pain I nearly fainted when I had to sit myself up and stand to go empty my bag.
The pain was different. It was sharper, more intense, but I knew it would pass soon, unlike the constant burning ache of my bowel. After a couple of weeks, the pain eased. Soon, I was in no pain whatsoever. My surgical wound was healing. My sick bowels were gone. (As the surgeon put it, “I have never seen a colon more ready for removal.”) I could finally start taking my life back. And I did, slowly.
I’m not the same. Facing death, and severe trials, changes you. I have post-traumatic stress disorder. I have scars and more to come. I void my waste into a bag that can and does leak. My mental illness is back out of control. But I’m alive. I can heal. I can get better, as better as medicine and my body allows. It just takes time.
I still have a long way to go. Two more surgeries, to rig up what’s called a “J-pouch,” which allows my small intestine to work as a rectum, and then a final surgery to remove the ileostomy. Then I’m as good as I’m going to get, and that’s good enough.
This post was originally published Sneer Campaign.
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