My nightmare began in March of 2013. I had been having a lot of pain in my lower abdomen and was constipated. I tried everything I could think of to get things “going” – laxatives, enemas, stool softeners. Nothing worked and the pain was getting worse. I went to my doctor and she ordered a CT scan. I found out I had diverticulitis and she put me on an antibiotic. She was going to be leaving town and she told me if I didn’t feel better in a couple of days to go to the Emergency Department.
On Saturday, March 16, 2013, I went to the emergency department with pain that was severe. They did another CT scan and decided to admit me into the hospital to put me on IV fluids and antibiotics. Sometime during the night I remember screaming with the worst pain I had ever experienced before. After that, the next thing I remember is waking up in ICU hooked up to all kinds of machines. I found out that I had a bowel rupture and went into septic shock. (Sepsis and Perforated Bowel) They did an emergency surgery on me on Tuesday, March 19 and they took out a 1-foot long section of colon and I had an ostomy bag.
Most of the rest of my story is from what family members had told me. I had organ failure – kidney and respiratory. I was on dialysis and was on a ventilator. I remember being thirsty beyond belief and hallucinating about water and other odd visions. I was hearing and seeing things that weren’t there, I was afraid to fall asleep because I thought I would die. When I was awake, I was confused and unable to communicate. I was on so much antibiotics, I had a yeast infection in my entire body, including my mouth and it was painful. I had horrible bed sores all up and down my back including one on my head that was so severe, my hair has never grown back on the thick scar tissue that remains. I have people ask me frequently about the scar on my neck from the trach.
I was in ICU for about 7 weeks then transferred to a rehabilitation hospital. I had many ambulance rides to and from rehabilitation back to the hospital due to various infections and vomiting. Once I passed a swallow test, I was allowed back on soft foods and I was placed into a nursing home where they continued physical and occupational therapy. In late July of 2013 I was placed in a hospital where their physical therapy was like “boot camp” – very demanding, but it got me on my feet with a walker.
When I was finally discharged in August to go home I was in a wheelchair and would use the walker to get to the bathroom and back. I continued physical therapy at home along with learning how to change my ostomy bag. Because of the adhesives and my skin sensitivity, I had a lot of pain because of the inflamed skin around my stoma. My lasting affects are cognitive issues, muscle pain and weakness, and neuropathy in both my left and right foot due to long term illness. I have also suffered from depression and PTSD. (Sepsis and Post-Traumatic Stress Disorder) I was fortunate to have reversal surgery in November of 2013. I have had ongoing problems with hernias and had to have another emergency surgery in November of 2014 since the hernia caused a small bowel obstruction. (Sepsis and Post-Sepsis Syndrome) I am so thankful to be alive, even though after over 3 years I still have some challenges both physical and mental. Due to my long absence from work, I lost a job that I loved and ultimately my 28 year marriage also ended. The emotional strain was just too much.
If I were to give anyone advice after such a horrible experience it would be to get some counseling as soon as possible. Being so near death is a huge strain on family members as well as the patient. Luckily for me, my doctors noted the depression and got me on an antidepressant fairly soon during my recovery. I used to not be able to talk about what happened to me without crying. My daughter has video of me on her phone that I refused to look at for well over a year after I was discharged from the hospital. With all of my challenges and set backs, I am still grateful for each day. I just wish the diagnosis could have come even 2 days sooner and I probably could have avoided septic shock.