It was a relief to me the day that I felt well enough to attempt to finish college. Seven years of battling Crohn’s Disease, a chronic inflammatory disease of the digestive tract, had literally thrown me to the floor writhing in pain enough times to brand my record with an academic dismissal, yet I brushed myself off and went back. Five feet, two inches and 85 pounds of me bulked up to a much healthier 115 pounds, and I meticulously kept on with my prescribed medicinal regimen of 22 pills a day and a syringe loaded with B12 every Tuesday night. Not to mention my 1.8 GPA was climbing higher with each “A” filled semester. At 25 years old, I threw my entire life into my studies, wondering how much life Father Time’s cards dealt for me. “Tomorrow is promised to no one,” I said. I had no idea at the time how true that is.
It was March 2006, and only a few weeks into the spring semester, when I began having this dreadful back pain. It actually felt like someone removed a portion of one of my muscles behind my left shoulder blade and let the bones grind together. Pillows nested around me while I slept at night, but I often found myself waking in the middle of the night and reading in the next room so not to wake my sleeping fiancé, Shawn.
The back pain grew worse, and the same sensation balled up underneath the top left of my ribs. Crohn’s patients very often acquire a pain in the affected area of the digestive tract, caused by the narrowing of the intestine blocking food from easily passing through. Because it is caused by the “pressure” of food pressing on the intestinal wall, this sensation is referred to as “pressure pain.” The affected area does not absorb water normally, and usually causes the patient to experience unnaturally lengthy bouts of diarrhea. Since being diagnosed with active Crohn’s disease in 1998, I knew the sensation of pressure pain as well as I knew my own name, and the pain in my back and side I definitely did not identify as pressure pain, even through frequent bathroom trips. I knew that something was wrong, but my I felt that my life was finally coming into focus. I didn’t want to mess that up.
So, I ignored it. I jammed a pillow under my aching side every night, and sucked up every pulsation of pain. Forcing myself to stand fully upright all day long at college was becoming harder to bare each day, and I found myself much too tired to help Shawn around the house at night. I still don’t know how I managed to keep up with my studies, as I was still sitting on solid A’s. One evening after classes ended for the day, though, the truth slapped me with a cold, dead hand.
Shawn was hungry, and he’s not exactly kitchen savvy, so it was up to me to feed him. The pain weighed heavy in my back, and I couldn’t stand for very long. I actually asked him to help me make a grilled cheese sandwich on the stove. Slumped into the fabric of the desk chair he’d wheeled into the kitchen, I instructed him on the benefits of spreading the bread with oleo over cold butter, the secrets of flinging water on the pan and watching the little beads of steaming water chase each other — which instrumented whether or not the pan was hot enough — and how to tell when it’s time to flip the sandwich, ensuring even browning. Following my instructions, he crafted those sandwiches like a culinary master.
We ate the sandwiches in the living room, as the hardness of the kitchen chairs were an extra strain on my back. I ate on the floor, turning onto my right side when I finished, and Shawn announced he was going to take a nap in our bedroom. Feeling the usual bite of this unusual pain I suffered, I didn’t beg him to stay with me.
Fifteen minutes later, I regretted it. Shawn is hard of hearing, and uses an old-fashioned hearing device to enhance the small percentage of sound he is able to experience — it was only natural that he didn’t hear my screams. My back, from the top of my shoulders to my hips, felt like someone stuffed jagged balls of rocks beneath my skin. My entire mid-section was on fire, as if an animal fully gestated in side of me and was now trying to eat its way out.
I clawed on the rug, wincing and grunting. I twisted my neck back until I could see the living room couch. It was about four feet away. Pushing with my right arm, I managed to turn myself onto my right side so I could grab onto the coffee table and use it to balance myself as I worked my way across the floor. Once the couch was in reach, I forced myself onto my feet just long enough to catch myself in the center of the couch’s cushions.
I screamed.
Shawn couldn’t hear me. I pounded on the wall and screamed some more. Sweat began to bead on my forehead. He finally came rushing out of the bedroom, his hearing aid still absent from his head. “What is wrong?!” he said.
“Call an ambulance. Something’s wrong,” I said quickly.
“What?”
“Just call! Something’s not right!” I snapped, rolling on my side. I wrinkled up my nose.
When the ambulance came, the EMTs told me that they believed the pain I was feeling was kidney stones, but I didn’t believe them, even though I’ve never had a kidney stone.
Once wheeled into the ER and put on a table, I was sure that someone was going to come with some kind of pain medicine to stop the pain. I stared at the clock. No one came for thirty minutes. I locked up my back, grunted and whimpered until a doctor finally came to see me to ask me what the trouble was.
I told him the whole story, that I’d been having a pain in my back in ribs for three weeks, and it suddenly got unbearable. He said, “You do understand, though, that there isn’t much we can do in the ER. We are limited to what we can do for patients. Our job is to decide whether or not you need to stay in the hospital.”
I couldn’t believe this so-called doctor was patronizing me! I said, “I know there’s something wrong with me. I know my body — every tiny cell of it. I’ve never had pain like this before in my whole life!”
“You never had pain like this before? Really?” the doctor was still mocking me.
“Look, Doctor, ” I said, “You are doing to x-ray me, give me a urine test, take blood. . .do every damn test you can until you can tell me what is wrong with me.”
He complied. A technician took my blood. A C.N.A. took me to the restroom so I could fill a cup with a sample. And then my bed was wheeled down to x-ray.
Four hours had passed from the time they brought me back from x-ray and rolled me back onto my cot in ER. I know this because I stared at the clock — even after they were gracious enough to put on the television and hand me combination television/call bell remote control. My entire body was infected with the pain, and sometimes I thought it was to the degree that my endorphins kicked in. I’m not sure about endorphins. I never overexerted myself to the point that they’d ever be stimulated enough to calm my body before, but occasionally the pain in my back would disappear for a few moments. It was just completely leave me, and feel a calming, warming sensation replace the pain. As soon as I’d relax, though, the pain would come back, tenfold.
The endorphins had relived me of most of my pain when the doctor finally came back to my room. I said, “Hey, my endorphins kicked in — at least I think so — but I want something for pain. A shot. It’ll hit me before the pain comes back again. Please!” I wouldn’t look at him. I couldn’t. I was afraid if I relaxed and turned my head away from the ceiling, the pain would come back. The doctor stood over me, his face inches from mine, and his expression was worrisome.
“Kami,” the doctor said, “We got your x-rays back. I called your family PCP. There’s a pocket of air showing up in your abdomen.”
I didn’t really understand what he was getting at. I just wanted him to tell me I was getting something for pain. He might have said more, but I couldn’t hear him because the endorphins wore off again. “Does. This. Mean. . .I’m getting something for pain?” I asked.
“We’re getting something for pain right now. We had to let you hang in there like that because we needed to know exactly where it hurts. Kami, you have air inside of you that isn’t supposed to be there. There is a perforation somewhere in your intestines — your colon,” the doctor said. This time I heard him, and despite how bad I was feeling, I sat up.
“What! Perforation?! Like a hole?” I forgot about the pain. I was wondering how the heck I was still alive on that table. Wasn’t my blood poisoned? No wonder this hurt so horribly! The ER doctor said I needed emergency surgery, and he introduced me to the man I owe my life to — my surgeon. Someone handed me a bunch of papers to sign, this-n-that liability stuff pertaining to use of blood and dangers of anesthesia — I don’t know, really. It didn’t matter to me at that point because I felt like there was really nothing for me to lose if what they did actually did kill me. I did get a nice helping of morphine after that, by the way.
I don’t remember much about what happened between going down to the OR and being fully awake in my room other than the fact that I wouldn’t stop crying. My first memory was being moved from a cot onto the bed in my first hospital room. I say “first” room, because there were a few more after that stay. They put me in that bed, and the first thing made conscious to me was that my throat hurt and that there was something on my face. I tugged on the intruding object pressed against my nose, “Get this off of me!” I said.
“No, no. We have to leave that on you,” the nurse told me.
“What is this thing on my face? I don’t like this thing on my face,” I said. I noticed my words were slurring, and I thought it was from the anesthesia and the pain medication. It might have been, but I didn’t realize what else was contributing to it.
“Kami, you’re insides are still asleep. It’s going to take a couple of days before they wake up, so you need this tube. It goes in your nose, down your throat — down far enough to suck out any foreign stuff from inside of you,” the nurse explained. I looked at the fat part of the tube and saw a dark substance inside of the yellow plastic, slithering into some sort of machine. I realized, too, that I was sitting on something and pulled the covers off of me. There was another tube peeking out from beneath my gown, and I traced it with my eyes over the bed and onto the floor. A catheter. Great.
In the two days that followed, my diet consisted of an occasional Styrofoam cup of shaved ice and whatever that yellow liquid was in my IV bag. I was also administered a few pints of blood to get my blood cell count closer to the amount of a living person, and I had a button to push that allowed me to treat myself with a splash of morphine whenever I felt like it.
By the third day, I could have soft liquid foods: ice cream, soup, and caffeine free Pepsi and coffee. The dietary staff began bringing me high calorie, high protein, low fiber trays that looked like real food, but I couldn’t eat it. I just didn’t feel right. Swallowing food felt like trying to push a watermelon into the neck of a ketchup bottle. My chest felt like it was caving in — I couldn’t breathe when I ate. So, I refused to eat. I was an emaciated 91 lbs in no time flat.
March 31st was the day I actually looked death square in the face. The ER scenario terrified me so much that I didn’t truly experience what dying feels like. The afternoon of March 31st, I felt death. Death is a buzzy, lightheaded feeling. It’s flutters and vibrations all over the body, and tingles in the joints and limbs. Death is being able to feel each of the trillions of hairs on the entire body separately enough to name them — that is, if the dying person lived long enough to do so. Death is not being able to distinguish the heart that beats inside the chest, because it feels like there’s a voided out space in the space where the heart should be. Death feels like what it is: the soul preparing to separate from the physical, living body.
When I felt death coming, I remembered right away what my CNA mother told me the patients she took care of would tell her a day or so before they’d die: “I don’t feel right.”
That about sums it up — right there. I didn’t feel right, but there was no concrete way to describe the sensation. When the morning shift nurse came to bring me my meds after breakfast, I told him about it. “I don’t feel right.”
He seemed moderately concerned, as if he knew what my test results were from the day before but was afraid to tell me. Everyone feared telling me any upsetting news because I was diagnosed with emotional disorders; no one wanted to upset me. Not knowing the truth about my body upset me more, and I cried throughout each day, anyway. Still, he shrugged off my remark and went about his rounds.
What was probably about twenty minutes later, I had to use the bathroom. The nurses’ call button I had slung over my bed was useless to me. No one would ever come when I truly needed assistance. I decided to take myself to the bathroom. Unsteady on my legs to begin with, as they were two lumpy bags of retained body fluid that made me look like a 250 pound woman from the bum down, it was no wonder when I lost control of my movements when my body added severe dizziness to the equation. I still don’t know how I got out of that bed and made it those six steps to the bathroom, but I did.
Not only did I make it to that bathroom, but I even managed to sit down and carry out my business while focusing on how I was going to get up. A string dangled from the wall on the right side of the toilet that summoned a nurse if I chose to pull it, but I opted to put myself back to bed rather than wait as possible thirty minutes for someone to answer my call light. Getting onto my feet felt like standing up after a long night of drinking. A rush of dizziness came over me, and the floor appeared to be spiraling closer.
Hand over hand, I grappled my way closer to the bathroom’s exit, grabbing onto railings, the sink, the paper towel dispenser — whatever I within grasp that could keep my face from hitting the linoleum floor. I looked in the mirror, and my colorless face framed my deep blue lips. Managing to maintain a grasp on either side of the door frame, I cried out into the hallway, “Somebody help me! I’m dizzy! Please. Somebody help me.”
The male nurse that dispensed my breakfast dose of medicine came to my aid — gruffly. “If you are dizzy, you sit down,” he said, and he left before I had a chance to defend myself against his attitude. Fortunately, Father Time was on my side that day, because before the nurse could make it completely out the door, he had to step aside and allow the hospital transport man to wheel in a cot to take me down for my second surgery.
Looking back on it, now, I remember that I wasn’t that cooperative with the transport crewman, who continuously requested that I’d keep my hands off of the raised sides of the cot. Dizzy and scared, I refused to cooperate, so he left me be.
Down in the operating room, I met up with my surgeon, who had a different assistant with him than the last time. My surgeon said that he’d done a biopsy of the two thirds he had removed of my colon the last time he put me on that table. He wouldn’t indicate exactly how bad my colon had looked other than saying I was a “very lucky girl.” I was told that my last x-rays displayed sludge in my gall bladder, and my liver was surrounded by fluid. The x-ray also warned of a complication with my last surgery. The last moment I remember before I had started counting backwards from ten was the surgeon explaining to me that there was a good chance I would wake up with an illeostomy.
I awoke for a few minutes in the recovery room. None of the staff wandered around the room, and I was the only patient down there. I shivered and squirmed before falling back asleep.
I awoke again in the intensive care unit. The tubes, IV, and catheter that the nurse removed after the last surgery now had reappeared, along with some suction cups attached to a heart monitor. With so many wires and tubes encasing me, I barely moved until I remembered. . .the doctor said I might wake up with an ileostomy. I lifted my blankets, then found the edge of my gown and pulled it back. A clear plastic bag clung against my skin, and a large red knob was visible inside the bag. I started to sob.
The relationship I’d began with the day-shift RN immediately grew unpleasant. Anyone coping with ostomy surgery for the first time will eventually learn to overcome the distress and depression that comes with it. But at first, the ostomy patient will feel helpless, lost, and disgusted with her situation and appearance. Dealing with my ostomy was especially difficult because I suffer from bipolar disorder. This nurse, who obviously never obtained any sort of psychology degree, looked at my bipolar symptoms with disbelief. I cried nonstop, everyday, and she actually told me to “quit faking” and to quit my crying at one point. I managed to say, “I am bipolar!”
She replied, “Quit using that as an excuse.”
On top of all of that, she’d convinced herself that I was unintelligent — that is until the day she watched me do my crossword puzzle. Since I live with a deaf man, I had picked up a thing or two about reading lips. I saw her say to a nursing assistant, “You should see her doing a crossword puzzle. She just fills it in like she isn’t even thinking about the clues.”
I got along much better with the night shift on the ICU floor. One nurse in particular always made sure I had plenty to do to keep my mind off of my condition, and she always raised my legs as high as she could so the fluid in them would drain into my bladder and out of my body through the catheter. She helped me believe everything would be okay, and I never cried during the night.
My parents drove five hours to visit me, and Shawn happened to make his way to the hospital at the same time. I didn’t want to frighten anyone with my face and body of tubes and wires, but I couldn’t keep them away. I was thankful they came though; it cheered me up.
The ET nurse came to visit just as I had began to get used to the idea of being in the hospital, and I wasn’t ready to see her. She brought a model of an ostomy with her — a red glob attached to a flesh colored board. She tried to explain to me how to care for my illeostomy, but I couldn’t listen to her. Words like “wafer” and “stoma” and “flange” just seemed foreign to me, and I didn’t want to learn. I wanted them to put me back together and forget the whole thing, and I started crying again when she took the ostomy appliance off of my skin, exposing my stoma. I couldn’t look at the stoma, the piece of my small intestine that pokes out of my skin and removes the waste from my body, emptying the waste into a bag. I started crying again, and the ET nurse assumed that she’d better come back on a different day to teach me what to do. I wasn’t emotionally ready. She asked me if I knew if I was to keep the ileostomy, named for the ileum (another word for “small intestine”) and ostomy (I don’t know what that part is named for, but I know it has something to do with bypassing a part of the digestive or urinary tract and rerouting the waste removal to a place outside the body — a bag), or would a time come that it could be reversed. The surgeon had told me that there was a chance that I could have the ostomy reversed some day, but not anytime soon, and I told the ET nurse that.
The evil day shift RN heard me tell the ET nurse that I could have my ostomy removed, and she spoke with the ET nurse before she left. I read her lips, she said, “I don’t believe that patient is really going to have her ostomy reversed. I think they just told her because they don’t want to upset her because she’s bipolar.”
Oh, I thought, now she doesn’t believe I’m a fake.
Eventually, my condition improved, and the hospital transferred me to another floor upstairs. No longer did I have access to the free telephone and cable television service, available only on the ICU floor, so I had to arrange to pay for these services, and since I was the bookkeeper at home, Shawn graciously brought all of the bills and my checkbook when he came to visit so I could pay our April bills. In addition to the bipolar, I also suffer from paranoid psychosis — a condition that causes me to be suspicious of people and worry and stress over every problem that I may face in life. I usually have it under control, but because of all of the emotional distress I was under, I could no longer keep my paranoia to myself. I needed to make sure the bills were paid and that my professors at college were absolutely clear that I hadn’t been merely skipping school for three weeks. I kept busy, though I was clearly depressed.
For the most part, the staff on this floor treated me wonderfully, with the exception of one nursing assistant who I should have gotten fired for abuse. Being morning shift, she was expected to change my bed linens, and she wouldn’t, even the day I spilled cereal in my bed. She dodged emptying my ostomy bag, and she would have left me on my bedside commode for hours if I wouldn’t have put my call light on every two seconds until she’d put me back into bed. Her favorite thing to say to me was, “You aren’t the only patient here, you know.” The other staff would tell me that her behavior went unbiased, and her favorite saying was, “I like the patients who can take care of themselves.” Why nurses’ aid was her chosen profession, I’ll never know.
After enduring a new seemingly world ending experience each day, like my ostomy wafer breaking and gushing human waste all over me, and waking up to a bed filled with urine because I took water pills to get the swelling in my legs down (they administered steroids in my IV, which caused my legs to swell to three times their normal size), a my body became infected with yet one more infliction. Somehow, my outer vaginal labia became abscessed, and I had to be taken down to the O.R. one more time so that two OBGYN could collaborate and decide what was to be done with me.
They’d decided that the antibiotics that I was already receiving should clear up the abscess, and they ordered me a sitz bath twice a day. The doctors had also discovered that I had five rectal-vaginal fistulas — internal channels that connect my rectum to my vagina. Fortunately, they’d told me, the fistulas would dry up on their own after I’d had the illeostomy for a while, since I would not be passing any waste through my rectum. Meanwhile, I was beginning to show the early signs of bed sores, and had to go through the embarrassment of having a stranger salve my bottom with cream every few hours.
Several days had passed, my staples were removed, I was heartily eating a fairly normal diet, and I had nearly perfected removing and replacing my ostomy appliance before the doctors gave the promise that I was going home. Visitors came almost regularly. Shawn appeared occasionally with his mother or his brother by his side, and the IV needle coming out of my neck alarmed his brother. My neighbor also visited often with magazines and other treats, and though I was feeling better, I was desperate to go home.
The day I went home couldn’t have come sooner. A hospital van waited for my discharge, and the abusive nursing assistant scantily grabbed up supplies that would be useful for me at home and tossed them in a bag. She, unfortunately, was in charge of my transport, and rushed me out of there as fast as she could. I think in some weird way, she wanted me to leave more than I did.
Returning home felt like returning to a place that I hadn’t been in years. My house actually felt foreign to me, and Shawn and his mother didn’t help matters by fawning and then disallowing me to do anything for myself — at least during my first day home. His mother helped me keep myself clean and helped me any time I needed to change my wafer or gauze; she probably saw me naked more than she’d care to remember! Once I managed to get around the house by myself, she packed up and began sleeping in her own apartment again — leaving Shawn to take care of me by himself.
It was difficult for him at first, especially since he feared getting close to me in any way, as if I’d break if he’d hug me. My legs were swollen for at least two more weeks, and I rarely left the house. If I did, Shawn would push me in a wheelchair. I also had a home care nurse who visited me almost every day to make sure I was healing well and to also ensure that I was taking care of my ostomy properly. I’d showed her that my incision was healing well, except for one small spot at the bottom. It was a small hole, about the size of my belly button, and it was leaking fluid. She showed me how to care for it, but she had no explanation as to why this spot refused to heal.
I returned to college in August, and by October I was out of the wheelchair, leaving me with amazing upper body strength. I’d gained back twenty pounds, leaving me with a fuller, yet still slender, figure. My hair, which had fallen out in baseball sized clumps every day, was beginning to grow in, and by the fall I had to wear headbands and bandannas to keep the little spikes on top of my head tame. Every problem the gynecologists had found also healed up well. The only thing left was the ileostomy and the mysterious hole.
The surgeon initially told me the hole was another fistula leading from the surface of my skin down to the small length of colon I had left. He said the only way the hole could be repaired was to have the rest of my colon removed and keep the ileostomy forever. It took me a long time to get used to the idea of keeping the bag, but I eventually put it in my mind that I’d rather have the bag than be as sick as I have been my entire life. I grew tired of hearing how brave and lucky I am and how great it was that I was trying to finish college despite my disability. I never thought I was special or brave at all. Anyone else would have taken all of this trauma better than I had.
A year had passed since my partial colectomy and ileostomy surgery. I graduated from college with a 2.0 overall GPA, a place on the dean’s list for that last semester which followed my surgery, and a Bachelor of Arts degree in creative writing. The hole in my stomach had turned out not to be a fistula at all, but something called a stitch abscess. A stitch abscess is a common occurrence after abdominal surgery where the stitches break loose inside the body as the patient heals and burrow their way to the surface of the skin. I have passed nine stitches since my surgery, and I have between one and one hundred more to go until the hole is able to heal up. My relationship is stronger than it ever was, and we will be married before the fall of 2007. My mother always told me that no matter what goals I have in life to never let anything stand in my way. I will live with Crohn’s-colitis until I die, but it will never keep me from where I want to go.
Reference:
Crohn’s and Colitis Foundation of America www.ccfa.org
