Anonymous Personal Story: A Lifetime Battle with Intestinal Obstructions and Pseudo-Obstruction
I was born with my problems. Doctors wanted to give me a colostomy at birth. My parents said no. I had chronic pain always. Sometimes I could eat, and sometimes I couldn’t. I never had normal bowel movements. When I was able to go, it was like little rabbit pellets. I had to strain to get that out. That happened after weeks of producing nothing.
When I became an adult, I got a gastroenterologist. He worked with me for 12 years. Finally, he got me a surgeon. I was in my thirties by this time. I had to go through some tests before he operated. He removed all of my colon except for one foot. He reattached that one foot to my rectum. Oh, and by the way, I was working full-time and raising children through all of this. When I healed, I couldn’t believe that I was actually having bowel movements like everybody else. It was a miracle to me.
Well, that surgery lasted about twelve years. The pain and constipation were coming back. That one foot of colon wasn’t working properly—again. Still working full-time, with my children grown and on their own, I got sicker and sicker, and the pain became excruciating. My GI doctor admitted me to the hospital straight from my job. Did I neglect to mention that I worked in this hospital? Sorry. I was a surgery-pre-op lab tech. That day I was working in outpatient surgery, so after my GI doc came out of doing his procedures, he took one look at me, ordered an IV and pain meds, and admitted me to the hospital.
I was put on TPN, lipids, and oxycontin. After my stay there, I was sent home on TPN. I took care of my own feedings and blood work since my PICC line had ports long enough for me to reach. I was off work for a few months with that. When I went back to work full-time, my boyfriend and I tried to find a specialist who would perform an ileal pull-through so I wouldn’t have to have a bag. After two and a half years and seventeen different specialists, I finally found a surgeon willing to do the surgery. He was in San Francisco.
I was working the late shift in outpatient surgery with my supervisor when my surgeon himself called me and asked if I could be there for surgery in the next two days. My supervisor, knowing what I had been and still was going through, got really angry and said that this was an elective surgery. So, I said that I elected not to have my intestine blow up. I went to San Francisco and had the surgery. With my first surgery, I was back to work in six weeks. With the ileal pull-through, I was also back to work in six weeks. Mind you, I wasn’t taking any kind of painkillers anymore. Painkillers actually slow down the already-too-slow intestines.
Well, I was pain-free for about ten years. This time I was referred to an upper GI specialist at the same hospital in San Fran, who did tons of tests on me. My diagnosis is this: neuropathic pseudo-obstruction, constipation with pelvic floor dyssynergia dysphagia, nutcracker esophagus, and spasm esophagus. Now my whole GI system is being looked at. I had already lost my gallbladder, which was working at four percent. Now we’re in 2011, and my small intestine—since that’s all I have—is giving me trouble. By now, I’m 56 years old.
I had to be taken by ambulance to the hospital where I had worked for 23 years but had been let go because I was making it such a hardship on my co-workers for being sick. Hmm. Anyhow, I was taken in for emergency surgery for an obstruction. It wasn’t a food-related obstruction either. I was told by my surgeon that my whole small intestine was covered in scar tissue and that this was what caused my obstruction. He also said he took down all the scar tissue.
After eight days of doing well, I got released and went home. I was home for 24 hours when I started throwing up uncontrollably again. Oh, and I want to add that my boyfriend and my daughter were by my side for this whole ordeal. They never left me. So, my boyfriend called my surgeon, and I was a direct admit. I was taken into emergency surgery again and was in surgery for six hours. I went to intensive care for 24 hours. They had given me blood during and after surgery. I got about seven units of blood in total.
This obstruction was a cluster of scar tissue at the opposite end of my small intestine. He ended up removing two pieces of my intestine. When I was able to go to the floor, I was sitting on the commode when I sprang a leak—a big leak. It was shooting out from between my staples. I was being drenched in bile. I yelled for a nurse until I finally got a few of them at once. My call button wasn’t within reach. They immediately helped me and called my surgeon, who removed some of the staples and put a urostomy bag over this fistula.
Oh, did I forget to say that I had another PICC line placed and was receiving TPN and lipids again? Sorry. I was in the hospital for about a month with these little problems. I kept running a low-grade fever. Every once in a while, it would spike to 101. I finally got to go home, but not for long because of this darned fever. I got admitted through the ER. The next day my surgeon came in to talk to me. Some of my words weren’t coming out right—they weren’t even close to what I was trying to say.
He sent me home again because he didn’t think he could help me any better at the hospital than at home. Well, my behavior was getting more and more odd. My boyfriend called my daughter, and after two more trips to the ER and being sent home, the third time they kept me because I was critical. The ER doctor (with help from others) discovered that I was now septic. I almost died twice in front of my daughter and my boyfriend. I don’t know how long I was out of it, and I really don’t want to know.
When I finally woke up, my eyes were so blurry I could barely see, and they hurt badly. I had about four different doctors this time. The hospitalists (working one week at a time) actually paid attention to what was going on with me. I had had a second PICC line put in for the TPN. The doctor wanted to culture the tip of the first one. I ended up having a fungal blood infection and was put on medication for that as well.
Since I kept telling them about my eyes, they called my eye doctor, who checked me out and referred me to a retinologist. My boyfriend took me to the retinologist and then brought me back to the hospital. The sepsis had gone into my eyes. The second visit to the retinologist resulted in an injection in the worst eye to kill the germs faster. There was a germ in the center of my retina and all over my eyeballs.
One good thing was that my fistula stopped putting out bile for about two weeks, so the urostomy bag was removed. It was healing—yay! Then I was taken off the TPN, and the PICC line was removed. Things were looking up. The fistula had healed, and there was about a half-inch left to go. I finally got released from the hospital again, but not until there were no more germs left in my blood. I was in the hospital for almost three full months.
I had an appointment with the surgeon when I got out of the hospital. He put silver nitrate on the hole left from the fistula. Later that day, the fistula started putting out fluid again. I thought it was still infected. Oh yeah, that was infected while I was in-house, and I was on antibiotics for that too. I got another round of antibiotics for the fistula, but it continued to leak. My abdomen is also sore all the way around it—inside sore.
I ended up going to the wound clinic, where I saw a surgeon (I know all of them since I worked with them), who looked at it and said it wasn’t infected anymore. It looked like some bile mixed with who-knows-what was coming out of the hole. He said he didn’t want to put me through another surgery to fix the fistula because he was afraid I wouldn’t make it this time. He also said the fistula may never heal, but he was hoping it would.
So, I am left with a leaking, stinky fistula and permanent damage in my right eye. Sorry that this is so long, but it’s what happened to me. I don’t know how long I have before I get another pseudo or scar tissue obstruction from this. Being in the hospital for three months has left me with a house going into foreclosure and a big gap in trying to get Social Security Disability. They denied me twice and said I wasn’t sick enough. I’d like to see them walk in my shoes for a day.
No, I wouldn’t. I don’t wish this on anybody, but it is my story, and I am sharing it with you.
Thanks for listening.
