Local Family’s Search for a Diagnosis
Our quest for a diagnosis begins at my daughter’s birth. She arrived in this world two weeks after her due date, looking green because she had produced the meconium while still inside me. The next five days were a roller coaster of ups and downs as she spent time in the NICU with one little issue after another. Finally, we were allowed to take her home and begin our time as a new happy family. In the next couple of years, “normal” for all intents and purposes, I noticed some issues with bowel movements, but they were nothing I couldn’t take care of at home.
When she entered preschool, her bowel issue moved to the forefront. She was having soiling accidents. On her 4-year well child visit, we asked her doctor about the constipation and soiling. He prescribed a laxative. Again, at her 5-year well child visit, we expressed our concerns. Our daughter was starting full-day kindergarten, and I wasn’t sure she would be able to avoid a soiling accident all day. Our pediatrician informed us that if the laxative did not solve the issues, we would have to see a GI specialist
For the next three years, we visited the specialist for multiple x-rays, blood tests and a barium enema test. During these years, every phone call to the nurse seemed to end with our being told to “give her more of the laxative.”
School was hard. I knew she was spending so much of her energy preventing an accident that she was missing out on the things she needed to learn. We restricted her diet off and on for years, limiting fried foods, increasing fiber—whatever we could—in hopes of helping her. As I researched on the internet, I even began to look at alternative medicine options. We were desperate to find a diagnosis and end her suffering.
Finally we had a glimmer of hope—perhaps a scheduled colonoscopy/motility study would finally give us an answer. The test required prep work and an overnight hospital stay. She arrived at the hospital to get an IV and NG tube placed so that more laxative and fluids could be put into her body. After a long, rough night of prep to clean her out, she was taken to the surgery room for the colonoscopy and placement of the catheter for the motility study. The tests were painful, and with tears streaming down her face, she said all she wanted to do was go home. After three hours of watching the movement in her bowels, the doctor determined everything appeared to be working. We were released from the hospital with a diagnosis of hereditary constipation with soiling.
Still trying to be hopeful that something good would come of all that we had put her through, we left the hospital with the knowledge that she was definitely cleaned out. Maybe by continuing the laxative we could now be ahead of the issue instead of always trying to catch up. We had two days without any soiling, and her bowel movement made us hopeful that all the procedures made a difference. Unfortunately, a few more days put us back to square one. The soiling accidents still occur almost every day.
I will continue to search the internet for something to help her. As she gets older, I’m hopeful she’ll have better control over her body, making it easier to live with what seems to be hereditary constipation.
Nancy West lives in Lenexa with her husband and two daughters.