I was hospitalized for three weeks in May of 2006 for a dangerous bowel obstruction due to a flare up of Crohn’s disease. They removed my entire Sigmoid colon, terminal ileum, and secum. I was in Brattleboro Memorial Hospital and Dartmouth Hitchcock Medical Center for a total of 3 weeks. I began to experience the illness in April of that year, but had been diagnosed with the incurable disease, Crohn’s, many years before.
I was admitted to Dartmouth Hitchcock Medical Center on Monday, May 22, 2006 with a partial bowel obstruction. I was very sick when I was admitted. They almost put a nasal/gastric tube down my nose to try to help relieve the increasing pressure on my bowel and the risk of perforation was high. As I lay on the gurney, listless and lethargic, my husband ushered in residents, doctors, surgical teams, nurses, and medical students. I guess my bowel sounds were becoming legendary in the Dartmouth Hitchcock ER. My distended belly was swollen to that of a 5-month pregnant woman—the only simile I can think of was that it was like a basketball!
Just trying to lift my head off the pillow seems like such an effort: I was too tired to care about brushing my teeth, or reading the magazine on my bedside table. I had been in bed on and off for two weeks straight. The pain in my belly had progressed from intermittent spasms, to a dull roar. It was finally ‘banding’ across the top of my belly like a snake. Steve called it the ‘alien’ and it did indeed seem to have a life of its own. The noises were almost comic! The rumblings and gurgling of my belly (which is something many Crohn’s sufferers know about) are often embarrassing. People say things like, “You must be hungry!”
This is called borborygmus, the “rumble” or “growl” sometimes heard from the stomach, and is a normal part of digestion. It originates in the stomach or upper part of the small intestine as muscles contract to move food and digestive juices down the gastrointestinal tract. Rumbles may also occur when there is incomplete digestion of food that can lead to excess gas in the intestine. In humans this can be due to incomplete digestion of carbohydrate-containing foods including milk and other dairy products (lactose intolerance), gluten (protein in wheat, oats, barley, and rye) (celiac disease), fruits, vegetables, beans, legumes, and high-fiber whole grains. In rare instances excessive abdominal noise may be a sign of digestive disease, especially when accompanied by abdominal bloating, abdominal pain, diarrhea or constipation.
One of my doctors on the GI team said my lab tests were extremely good for someone as sick as I was. My importantly, he said I was “very well-informed” about Crohn’s disease, and that I didn’t have a lot of corollary symptoms like mouth sores, infected eyes, etc. that frequently flare up when the body’s immune defenses are weakened. As he took my medical history, he was amazed to hear that I wasn’t on any medications for my disease that was diagnosed in 2001, nor had I ever taken any steroids to help with flare-ups in the past.
I remembered when I was first diagnosed, five years earlier and the decisions I made to follow a non-Western medical path. It is a path that has certainly been transformative, though not without pain or problems; it is a path that I would readily travel again.
What amazes me about this episode is that I had forgotten how horrible it is to have a bowel obstruction. The first and only other one I had was five years earlier . . .
I was 45. We have three kids and my husband was taking a yearlong leave of absence from his college teaching job to build our house himself and with a small crew. I was financially responsible for our young family during that time and very focused on starting my business—a small graphic design and consulting firm that specializes in book publishing design and packaging.
Buying land and building our house had long been a dream for us. Steve and I had planned this phase for a year beforehand and we were finally doing it. The year was obviously a stressful one for us all, but exciting. By December 2000, we were moved in and things began to get back to normal. In the spring of 2001, I injured both my knees playing on a women’s softball team. I had surgery in July. In September, I began teaching a college course in Graphic Design and was busy getting kids ready for school. We were still finishing our new house and the stress level was high. I began to throw up over the weekend, and by September 9th, 2001, I was quite sick and not able to keep any food or water down. I called my doctor Sunday night and she said to get to the emergency room as quickly as possible.
My husband had to carry me out the door and our then twelve-year-old daughter, Emma, asked if this was going to be fatal. I had never realized that the kids were actually paying that much attention to me, and what was happening to me. We had to leave them in the care of our neighbor for the evening.
This was in September of 2001, when I was admitted to our small-town hospital. It was a Sunday evening and the place was crowded. I was put in a bed and noted that my roommate had a perforated bowel due to a colonoscopy that had gone wrong—not a good sign! I was feeling tired, scared, and alone – all too frequent situations I am afraid, for sufferers of Crohn’s disease and ulcerative colitis. My potassium was depleted, among other vital nutrients, which is a typical problem from which IBD patients suffer from.
A nurse came in and started an I.V. I was in a tremendous amount of pain and scared, which only added to my cycle of pain and tension. The nurse was probably bummed out that it was 10:00 p.m., and she had to administer an I.V. right when her shift was ending. She had a hard time with it, due to my dehydration. When the tube was in, I immediately complained of “ burning” and “pain.” She rolled her eyes, and looked at my husband conspiratorially, and said, “She’s just tired, don’t worry!” And with that she left and my husband went home to be with our children. I lay in the bed, moaning. The pain progressed up my arm and I buzzed the nurse. My nurse came back in and she huffed and puffed and then administered a bit of lidocane to help with the pain. I cried and begged her to get her supervisor and when the supervisor came, she immediately took out the tube and put on in the other arm and I slept like a baby.
During my stay at the hospital, they gave me fluids and potassium to balance the electrolytes lost due to vomiting. The surgeon put me on a program called “bowel rest,” whereby the patient receives nothing at all from the mouth; only ice chips, until things settle down. It worked quite well and they said I could go home on Tuesday morning.
I remember being taken down to X-ray early Tuesday at around 7:30. The X-ray was just to determine if the pockets of air in my small bowel had continued to abate, which would further justify releasing me along with the joyous occasion of flatulence (the passing of gas) which would further bolster my case. I did not want to have surgery. Most of all, I wanted the oatmeal that the nurses had promised me after my X-ray.
I was returned to my room. Upon my bed sat my surgeon, Dr. Gregory Gadowski, wearing his white hospital robe and looking strangely undignified. I thought how odd it was to see this surgeon sitting atop my covers, and I felt embarrassed that my bed wasn’t properly made. As I drew closer, I noticed that he was starting up at the TV screen with what looked like a tear coming down the side of his cheek.
He was watching the Twin Towers being attacked on live television. It was 9/11.
The entire hospital, which is within 10 miles of a nuclear power plant, was in evacuation/hazmat/emergency mode. No one even looked into my room to check on me that entire morning. Not knowing how to change the controls on my television, I sat in my bed watching the airplanes hit the towers over and over.
Later that week, a CAT scan revealed that I indeed had Crohn’s disease and I ended up writing a journal which turned into a book, as a way for me to aid others who are either newly diagnosed with IBD, or have a loved one, or child with the disease. So, thanks to Adam and the ihaveuc.com website for posting my story, and I hope it helps someone. These diseases can be fraught with pain, but also loneliness. now that I am in remission, I still remember what it was like to be sick every month–so I hope my story of turning my life around will help some people–I know it sounds kind of corny, but I really mean it. (Dede)