My name is Jackie. I had to have a bowel resection after complications from a routine surgery during which my bowel was unknowingly cut. I am a candidate for reconnection, but since the doctors say I can live a "perfectly normal life" with a colostomy, the reconnection is elective surgery and not covered by my insurance. I am sincerely asking for help to help cover the cost of the reconnection. The reconnection is a two part procedure. The hospital has given me an estimate of just the hospital costs for both procedures. The estimated hospital costs alone for the first procedure is $50,000 for approximaely 5 days in the hospital. The estimated hospital costs for the second procedure is $45,000 - $50,000 for approximately 4-5 days in the hospital. These estimated costs do not include xrays, labwork, anesthesiologists, physician costs, etc.--it just covers the hospital cost. My requested goal of $10,000 will give me a 20% down payment to the hospital for the first procedure.
On July 6, 2015 I had what was supposed to be a routine surgical procedure. I went home in tremendous pain. At the time of discharge, I was still in much pain, but had been told by the nursing staff that the pain was normal. I don’t recall a lot about coming home, other than being in constant pain and not being completely coherent. Before being discharged, and at the time of discharge, the nursing staff said to walk as much as possible, which I did even with a good amount of pain. The nurses told me the pain would get better as I kept moving. Once I got home I continued the pain medication, but the pain did not improve. It increasingly got worse with each day until it became unbearable. I called my doctor's office once or twice that week because of the pain, but was unable to reach anyone. On July 8th, I remember not feeling completely coherent. Sometimes I was aware of my surroundings and sometimes I was not. The pain increased even more, along with feeling nauseous. As time progressed, the pain and nausea steadily increased. The first time I noticed my skin color being yellowish and pale was July 7th. The first day I also recall seeing my stomach distended was while I was still in the hospital. When I asked about it, the nursing staff said that was the size of my stomach before the surgery. I was surprised with how my stomach kept getting bigger and bigger, and I did not understand why. By July 11th, the pain, nausea and bloating were so intense that I could no longer tolerate it, even though I continued to take the pain medication. It seemed like the pain medication was doing nothing to help the pain, and the pain was just getting increasingly worse. I kept thinking the pain and nausea would get better, and I kept telling myself to be strong, but it just kept getting worse. July 11th was a Saturday, and my doctor's office was closed. I called a friend at work who is a nurse, and asked her to come and check on me. She felt I needed to go to the hospital ASAP. My husband was going to take me, but she said I needed to go via ambulance and called an ambulance. I remember the ambulance coming and putting me in the back of the ambulance. I remember talking to them and telling them I was in pain. I remember asking them if I was going to die because I was in so much pain. I remember them working on me for what seemed like a long time (my husband and friend said it was about about 30 - 40 minutes) before leaving my home. I remember the ride in the ambulance and telling them about the extreme pain that I was in.
I don’t recall what first happened when I got to the hospital on the evening of July 11, or talking with anyone at the hospital prior to talking to my doctor at the hospital. I don’t recall having a CT scan, but my husband told me that he followed several minutes behind the ambulance, and when he got to the hospital someone told him that I had a CT scan and was going into surgery immediately. The first thing I remember about arriving at the hospital was my doctor leaning down close to my ear and telling me that she either nicked my bowel or that something went wrong while she was cauterizing me, and my feces was going into my stomach. She said I needed emergency surgery to fix the problem. She also told me that she could not do the surgery, and she needed to call someone else to come and do the surgery. She then left my side but stayed in the same room as I was in. I heard her talking to someone else on the phone, whom I now assume was another doctor, and she asked that person how long before he/she could get to the hospital. She told the person on the phone that I was suspected of having a perforated bowel and needed immediate repair. My doctor then told me that someone was on their way to do the surgery, and I would be getting prepped for surgery right away. I don’t recall discussing any options, risks, the procedure itself or anything else with my doctor prior to surgery (but my medical records say I had such a conversation). My doctor also told me that even though she could not do the surgery she would be in the surgery with me. I told my doctor that I did not want her to be my doctor anymore and that I did not want her to be in the surgery with me because she had just told me that she either nicked my bowel or that something had gone wrong while she was cauterizing me during my previous procedure. Unfortunately, that is all I recall prior to that emergency surgery. Some memories are slowly coming back to me, but right now that is all I recall about being in the hospital just prior to the emergency surgery.
My next memories are vague memories of waking up in the hospital following the emergency surgery. Not all of the memories link together like a ribbon, nor do some of them make sense. I remember thinking while I was in the hospital that I was dreaming different things. At the time I thought they were all dreams, but now I am piecing together that some were dreams and some were reality. I have memories of my husband combing my hair, thinking there was some unknown object attached to my stomach, asking the people monitoring me to remove it, and them telling me that it had to stay on me. I could not understand why. In reality, I later found out it was a colostomy and a large midline incision with a dressing. I dreamed I was in some kind of medical facility with other people, and there were a bunch of other people taking care of us and monitoring us. I was dreaming that I was being moved from one location to another, and something different was done to me at each of the different locations. At different times I remember hearing a loud noise and dreaming that I was in some kind of a large makeshift white tent with a bunch of other people. I don’t remember anyone asking me how I felt or if I was in pain, but I remember being in pain. It was a different kind of pain. I remember people asking me if I wanted to be bathed. I also recall one particular nurse trying really hard to get me to eat some jello on more than one occasion. I remember vomiting after eating on more than one occasion. I also remember having something in my nose and it hurt. I pulled it out more than once, and people put it back in my nose more than once. People told me to stop pulling it out. I remember people telling me to stop screaming. I remember people getting together as a group and discussing my case, and they said they didn’t know if I was going to live or not, but I was unable to speak, or to get their attention, or to let them know that I was there and could hear them. It was like I was watching them from far away. I remember one particular nurse who would come in each day between 6:00 and 6:30 to bathe me and change the dressing on my stomach. She would hum songs to me while she bathed me and changed my dressing. I was in ICU for approximately eleven days, but I am better able to remember, as reality, only the last few days. I remember the pain, but it was not as intense as it was when I went back to the hospital on July 11th. It also seemed to be a different pain—a pain on top of my stomach instead of inside my stomach. I was discharged from the hospital on July 24th.
Once home, the pain continued, especially when I moved. The pain was real intense when I had dressing changes. The incision was more than 12 inches long, and it was gaping open and deep with some staples placed wide apart. The staples looked like huge fish hooks. My husband could get his whole hand down inside of my stomach. Home Health Care nurses came to my home every day to do dressing changes. The Home Health Care nurses called me every day to tell me what time they were coming. They told me to take pain meds about 15-30 minutes before their arrival so the meds would be in effect when they did my dressing changes. They taught my mother and my husband how to do the dressing changes. On July 28th a Home Health Care nurse came to see me at home after I had been home a while, and he described my incision as looking “very angry” and he felt I was not doing well at home. He sent me to the emergency room. I returned home without being admitted to the hospital that time.
The first several weeks at home were very painful. I was in excruciating pain at the incision site whenever I walked or moved from one position to another. Sleeping and moving were difficult to do. Even after most of the incision closed up, I started getting tears along the incision site because the skin on the incision was new and thin and tore easily with movement. As I got better, I was able to use a cane instead of a walker, and then nothing at all.
Over time, things began improving until August 20th when I was re-admitted to the hospital for an obsruction. I was released from the hospital on August 28th.
Living with a colostomy has definitely been challenging. I lost all of my hair, and wore a wig for a long time, but now it has grown back. I have had to endure open sores around my stoma. I have also had to endure the multiple leaks with the colostomy. I have been eating in restaurants and working in my office when my bag begins to leak and feces begins to run down my leg. I have also been stuck in traffic with nowhere to go when the bag begins to leak. I just have to let it happen and clean myself and the car up afterwards. There’s nothing like sitting on a tarp in a co-worker’s car because you have just leaked all over yourself and you don’t want to get it on their car seat. I have learned to carry extra clothing and a medical bag with colostomy supplies with me every day. There are also the problems associated with getting your medical supplies each month.
I hope I have provided you with a good understanding of everything. I am hoping to raise enough money to at least put 20% down to the hospital for the first procedure. Thank you for your patience, your time, your understanding and your generosity.
- Jaime Mears
- Kathryn Raes
- Noelle Tewell
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