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|Newsletters: Standing in the Shadow of Death|
Standing in the Shadow of Death
I have been battling Crohn’s disease for thirty-eight years. I have had fourteen operations and spent half my life in hospitals. This has obviously restricted me from doing what I really wanted to do in life, but I can now say I have come full circle with this dreaded disease and also state that every breath I take is a Godsend.
You really can’t give up (even though the thought has crossed my mind on more than one occasion). You just have to keep fighting and fighting. You can’t beat Crohn’s, but you can control it and go on to a better life. It is all in your mind.
No Light for Me
We have all heard about near-death experiences, where people tell you, “I saw the light,” or “I was going through a tunnel,” or “My parents were there to greet me.” Well, last March, I was incredibly sick and was later told I had been standing in the shadow of death. But I didn’t see the light, a tunnel, or my parents. So, I say laughingly, I just knew it wasn’t my time! How lucky was I?
My son and my close friends who were there to witness my so-called demise told me what had happened. I don’t remember much. It’s a long story, so I’ll just share some of it.
Just a Tunnel
At the time this happened, I was in the hospital. I had actually been in the hospital for quite a while, but I didn’t know where I was. One night I was in so much pain that the GI surgeon who was on call sent me for a full body scan.
He discovered that my Crohn’s disease had caused perforation of the bowel, and toxins were going through my body at a rapid pace. They called my son and asked permission to operate immediately. If they didn’t, they told him, I was going to die. They operated on March 1, 2013. I ended up with my third ileostomy and four fistulas.
I spent some time in the ICU, then some time in step down. I was in an induced coma for a while, as I had been subconsciously pulling out the IVs and pulling off my breathing mask.
I finally woke up in a hospital bed to see my son looking at me. That was quite unnerving. I could hardly talk and I still had difficulty breathing. I felt I was broken. I asked my son quietly, “What happened?”
He asked me what my last memory was. I told him what I remembered. There was a gap, events I don’t remember at all. He told me they kept telling him they “didn’t think I would make it…”
But I had made it. The journey had been long and grueling—and it wasn’t over. I thought, I have to get out of this place! Though my determination was fierce, I soon realized that’s easier said than done.
At that time I weighed 80 pounds. My son told me I couldn’t just lay there—I had to start moving. “Start with rotating your feet to get your circulation going a bit,” he said. “Try and move your legs, Mom.” Then he would help me. Bit by bit, I started to come back. I wasn’t giving up. I could have, but I didn’t.
I lay on my back for almost two months, as I was very weak. I was too weak to eat in the beginning and they were feeding me with parenteral nutrition (PN). Then they stopped. I started to eat slowly, hoping to gain a bit of weight and to gain the strength I needed to get on the road to recovery.
After two months the physical therapist came to get me started on some exercises. I was afraid, but I knew I had to start somewhere. I wish I could have just swung my legs over the side of the bed and walked out of there, but that would be a while yet.
The nurse and the therapist came every day and we all took baby steps. I started with sitting at the side of my bed; then they stood me up to walk a few steps and get my legs in motion. Every day I managed a few steps more. Four steps the first day, eight steps the next, and so on. I was eventually able to walk with a walker, with a nurse at my side.
My determination and stamina were high. “I can do it,” I kept telling myself. “Don’t give up, Gail.” Each day I progressed. I finally got to sit in a chair. I sat for ten minutes to begin with, and then every day it was a little longer. The doctors were amazed at how fast I was recovering. I had told them my goal was to get out of there, and in order to achieve that, I had to work harder.
By Mother’s Day I weighed about 96 pounds. Once I could walk without problems, they started thinking about giving me day passes. I was going nuts in the hospital and needed something to occupy my time.
They decided to put me back on PN, to help me gain the weight I needed so they could release me from the hospital. That was in May. As I was then getting day passes, I was able to go in to work—after all, the business needed to keep going. Every night my son would drive me back to the hospital to be hooked up for twelve hours with PN.
They felt that in order to release me, I would have to learn how to do the PN myself at home, and they arranged for me to have classes. It was rough going, and really hard to learn. I knew the doctors had gone as far with me as they could, and PN at home was my very last option. The nurse that taught the PN mentioned that maybe it wasn’t for me as I wasn’t catching on fast enough, but after much debate and uncertainty, I went back and completed the course to their satisfaction. The hospital finally released me on August 18, 2013. I weighed 112 pounds.
The Value of Hope
Through all the trials and tribulations that I went through, I never gave up hope. “Hope”…that’s the key word. You can’t give up. You can’t let your disease control you, or depress you, or get hold of you.
YOU are the only one who can get over any hurdle you face. The only way to get through it is to survive, to not let go, and to have the determination to live! I started off with home PN (or HPN) seven days a week on a twelve-hour cycle during the night, so that I had my days free. Gradually I went down to one night off. Now I am at three nights off the HPN and four nights on. I am back to work full time, and I’m happy to be alive. Hopefully I won’t have to be on it the rest of my life, but only time will tell. Since August 2013 I have gained 45 pounds and am feeling great.
My recovery took seven months, whereas normally it takes one to one and a half years. I have had some rough days, but nothing was going to get me down. I just want to tell you, if I can do it, so can you!
LifelineLetter, September/October 2014