My Life with Constipation Before and After SNS Surgery
My large intestine has never worked properly, so constipation has been a major issue in my life from the time I was a baby.
I can’t empty my bowels naturally. When I was little, we used enemas to get the job done, and my bowel movements were brutally painful. At age seven I had surgery to create an opening in my abdomen. I don’t want to gross anybody out, but basically the opening was so that I could insert an enema into my large intestine, then flush out the intestine with a solution of salt water and glycerin. Then I would sit on the toilet while my bowel emptied. This could take one to two hours every day, and always caused a lot of abdominal pain.
HOW CONSTIPATION AFFECTED MY LIFE
In fact, I was in pain almost all the time, and my bowels were always gassy and rumbly. I missed a ton of school over the years, so it was hard to build friendships. I couldn’t do after-school activities, because there was a good chance I’d have to back out. I’m a total extrovert, but sometimes I felt invisible because people never really had a chance to get to know me. But hey, I always had time to do my homework while I sat on the toilet.
My parents were awesome and did their best to make my life not sad. Dad bought me a cushioned toilet seat and told poop jokes to make me laugh. Mom was really sympathetic and would ask me all the time how I was doing. She did everything she could to help me physically and emotionally. She was my rock.
Often, when people go through a huge trial, they blame God for it. It has taken a long time, but thankfully I have learned to trust him in the midst of my suffering. Even my family and closest friends can’t truly know what it’s like for me to live with pain every day. Knowing that God understands and has a purpose for my life brings me a lot of comfort.
COMING TO CINCINNATI CHILDREN’S FOR HELP
We live in Utah, and my parents haven’t been shy about taking me to specialists in other parts of the country to see if they could help me. In 2013, when I was 12, we started hearing about the Colorectal Center at Cincinnati Children’s, and decided to come. I spent a week doing the Bowel Management Program, and the care team got me started on an oral laxative I hadn’t tried before. It worked! For a whole year, I didn’t have to do flushes—I could just take the laxative and poop normally. When my mom or I had a question or needed help, we could contact our nurse. Knowing Patty was always there to help made a huge difference.
DECIDING TO HAVE SACRAL NERVE STIMULATION THERAPY
The laxative stopped working after about a year, and I had to go back to the flushes. That meant once again sitting on the toilet for one to two hours every day. The flushes were so hard on my body, and for my entire junior year of high school there were many days I could not get out of bed because of the pain. I felt like my body was on fire constantly. I would literally wake up to eat or go to the bathroom or do a flush and then go back to sleep. It was the worst time of my life.
Mom called Patty, who was really heartbroken to hear how I was doing. She talked to Dr. Frischer about whether I could have this new therapy called sacral nerve stimulation, and he said yes. I was scared to even have hope, but we decided to give it a try.
Sacral nerve stimulation involves having two outpatient surgeries about two weeks apart. In the first procedure, Dr. Frischer implanted a thin wire under my skin in my upper buttock area, which makes contact with my sacral nerve. It was attached to a temporary stimulator battery that I wore on my belt. The stimulator gives gentle electrical impulses that activate the bowel and certain muscles so that you have more normal bowel movements. I used it for two weeks, and when it looked like the therapy would work for me, Dr. Frischer did another procedure to implant the stimulator under my skin.
Within a few weeks of getting my SNS implant, the therapy started to help. By the end of the summer I was able to have normal bowel movements. During my senior year, I hardly missed any school, and I even got a certified nurse assistant degree at a local technical college. Last year, I went to college for my nursing degree. I lived in a house with five other girls and worked part time as a nursing assistant. It was crazy having that much independence, and I loved it!
A TOTALLY NEW LIFE
I still do flushes, but only every 10 days, just to make extra sure I’m cleaned out on a regular basis. And I still have abdominal pain, but it’s manageable and doesn’t affect my daily life nearly as much as it used to. To be honest, I still worry that my health will decline again. But I have learned to just take it all one day at a time and be thankful for how my life is now.
Recently, I was called to serve as a short-term missionary for my church, the Church of Jesus Christ of Latter-Day Saints. Being a missionary is something I have wanted to do since I was young, but I was never really sure if it was a realistic possibility. SNS has made it possible for me to pursue this dream, and that feels incredible.