Years ago when I was in the process of preparing to have my colon removed, it took about six months for everything to fall into place. I had to have further GI testing, additional GI consults and opinions and a procedure done to rule out the diagnosis of Hirschsprung's Disease. During one of my GI appointments at Temple University Hospital in Philadelphia, I was seeing one of the nation's best GI doctors who specialized in motility disorders just like my local GI doctor. I remember conveying my wishes to him to have my colon removed and asking his opinion on the surgery. I explained to him that my local GI doctor recommended the surgery. Without the surgery, he didn't expect me to live to see my thirtieth birthday. Shockingly this GI doctor disagreed. He thought that the surgery was too big of a risk. The outcome would not justify the risk. I remember thinking that yes, medically he is qualified to tell me his opinion. He had devoted his life to medicine and studying how this disease "works" but he didn't know on a personal level what it was like to live with my disease every day. I wanted to live a long and full life.
Fast forward a couple of years and I was in the same situation again, needing an additional surgery to save my life, an ileostomy surgery. The day I met with my surgeon is a day that will I remember for the rest of my life. Originally I had went to my surgeon that day to see if he would remove the remaining eight inches of my colon that was a left as a hookup for my small intestines. He explained that by removing the remaining colon, he would be putting me at risk for obstructions and the possibility of my intestines "falling" which would cause a whole list of complications that could not be fixed. An ileostomy was my only surgical option at this point. My GI tract was delayed from the gastroparesis. There was no guarantee that an ileostomy would work. If this surgery failed then my GI tract would be considered to be "in failure" and a transplant would be my last option. The cleaning out regimes eventually would stop working. Transplants are not a fix all, end all solution. They come with their own set of complications.
After leaving that appointment, I realized how short life could really be. Things that I had wanted for years to have and be in life may not actually be possible or happen. The following few weeks were really hard for me. People my age were out pursuing their careers, getting married and having babies. I was at home cleaning out and picking out ostomy supplies. I honestly didn't think I'd ever get to be a parent.
As with all things, time does wonders to one's perspective. Over next few years, I grew as a person. I accepted my new "normal" and way of life. I grew to like and even appreciate my ileostomy. It had saved my life. The night before my ileostomy surgery, my body began shutting down. It was horrible. I have never been or felt so sick in my life nor wish to do so again. My parents explained to me later that their prayer was that I survived the night. Now as a parent myself, I can't imagine how hard that must have been on my parents to see their child in such a state. I can't imagine how hard it was for Jacob, my husband. I never would have imagined that four years post ileostomy, I would be married and have a nineteen month old daughter. My gastroparesis is still "there" and it still affects my daily life, nothing has changed. I still have to do my clean out regimes and watch what I eat. I am so thankful and appreciative to be here living the life that I do.
Fast forward a couple of years and I was in the same situation again, needing an additional surgery to save my life, an ileostomy surgery. The day I met with my surgeon is a day that will I remember for the rest of my life. Originally I had went to my surgeon that day to see if he would remove the remaining eight inches of my colon that was a left as a hookup for my small intestines. He explained that by removing the remaining colon, he would be putting me at risk for obstructions and the possibility of my intestines "falling" which would cause a whole list of complications that could not be fixed. An ileostomy was my only surgical option at this point. My GI tract was delayed from the gastroparesis. There was no guarantee that an ileostomy would work. If this surgery failed then my GI tract would be considered to be "in failure" and a transplant would be my last option. The cleaning out regimes eventually would stop working. Transplants are not a fix all, end all solution. They come with their own set of complications.
After leaving that appointment, I realized how short life could really be. Things that I had wanted for years to have and be in life may not actually be possible or happen. The following few weeks were really hard for me. People my age were out pursuing their careers, getting married and having babies. I was at home cleaning out and picking out ostomy supplies. I honestly didn't think I'd ever get to be a parent.
As with all things, time does wonders to one's perspective. Over next few years, I grew as a person. I accepted my new "normal" and way of life. I grew to like and even appreciate my ileostomy. It had saved my life. The night before my ileostomy surgery, my body began shutting down. It was horrible. I have never been or felt so sick in my life nor wish to do so again. My parents explained to me later that their prayer was that I survived the night. Now as a parent myself, I can't imagine how hard that must have been on my parents to see their child in such a state. I can't imagine how hard it was for Jacob, my husband. I never would have imagined that four years post ileostomy, I would be married and have a nineteen month old daughter. My gastroparesis is still "there" and it still affects my daily life, nothing has changed. I still have to do my clean out regimes and watch what I eat. I am so thankful and appreciative to be here living the life that I do.
