I was born with my problems. Doctors wanted to gve 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 gastrointerologist. He worked with me for 12 years. Finaly he got me a surgeon. I was in my thirties by this time. I had to go thru some tests before he operated. I 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 thru all of this. When I healed, I couldn’t beleive that I was actually having bowell movements like everybody else. It was a miracle to me. Well, that surgery lasted about twelve years. The pain and constipation was coming back. That one foot of colon wasn’t working properly–again. Still working full time, children grown and on their own, I got sicker and sicker and the pain became excrutiating. My GI dr. admmitted 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 and 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 byfreind and I tried to find a specialist who would perform an illeal pullthrough 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 is 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 illeal pullthrough, I was also back to work in six weeks. Mind you, I wasn’t taking any kind of pain killers anymore. Pain killers actually slow down the already to 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 dyspahsia, nutcracker esophagus, spasm esophagus. Now my whole GI system is being looked at. I had already lost my gallbladder. That was working at four percent. Now we’re in 2011. My small intestine, since that’s all I have, is giving me trouble. By now I’m 56 yrs old.
I had to be taken by ambulance to the hospital that I worked at for 23 yrs and 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 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 boyfreind and my daughter were by my side for tis whole ordeal. They never left me. Ok, so my boyfreind called my surgeon and I was a direct admit. I was taken into emergency surgery again. I was in for six hours. I went to intensive care for 24 hours. They had given me blood during surgery and afterwards. I got about 7 units of blood in total. Well, 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 camode when I sprung a leak. A big leak. It was shooting out from between my staples. I was being drenched in bile. I yelled for a nurse untill I finally got a few of them at once. My call button wasn’t within my reach. They immediatly helped me and called my surgeon, who removed some of the staples and put a urostomy bag over this fstula. Oh, did I forget to say that I had another picc line placed and that I was receiving TPN and lipids again? Sorry. Ok, I was in 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.
Ok, I finally got to go home. Not for long because of this darned fever. I got admitted through ER. The next day my surgeon came in to talk to me. Some of my words were’nt coming out right. It wasn’t even close to the word I was trying to say. Well, he sent me home again cuz 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 boyfreind called my daughter and two more trips to ER and being sent home, the third time they kept me because this time I was critical. So the ER Doc, (there were others who took care of the rest of the pts.), cared for me and discovered that I was now septic. I almost died twice in front of my daughter and my boyfreind. I don’t know how long I was out of it and I really don’t want to know.
When I finally did wake up, my eyes were so blurry I could barely see. And they hurt really bad. Well I had about four different DR’S this time. I had each of the hospitalists, (they worked one week at a time), who actually paid attention to what was going on with me. I had had a second picc line put in for the TPN. The Dr wanted to culture the tip of the first one. I ended up having a fungal blood infection. I was on medication for that as well. So, since I kept teling them about my eyes, they called my eye DR who checked me out and referred me to a retinologist. My boyfreind took me to the retinoligst and then brout me back to the hospital. The sepsis had gone into my eyes. The second visit to ten 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 eyballs.
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 removed. Things are 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 almost three full months. I had an appt.with the surgeon when I got out of the hospital. He put silver nitrate on the hole that was left from the fistula. Well, later that day, the fistula started putting out fluid again. ai thought it was still infected. Oh yeah, that was infected while I was inhouse and I was on antibiotics for that too. So, I got another round of antibiotics for the fistula. It continued to leak. My abdomin 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 and 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 thru another surgery to fix the fistula because he was afraid I wouldn’t make it this time. So, 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 te 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 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 am sharing it with you.
Thanks for listening.
