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Finding treatment for my daughter’s chronic constipation

kimberly & piper shumarFrom the day my daughter Piper was born, she had problems pooping. She also had a hard time gaining weight and was diagnosed with reflux. She was given supplemental nutrition and treated for the reflux, but she remained chronically constipated. When she did have a bowel movement, it was huge (like softball sized), it would hurt her terribly and she would bleed.

Her constipation continued year after year. When she was 4 years old, we were were told by a surgeon that it was best to perform an ileostomy that would allow her to move waste from her body through an opening on her abdomen.

We did not want to take that drastic step until we were sure it was the best treatment, so we sought out a second opinion from the experts at Mott Children’s Hospital. We met with Dr. Teitelbaum from the Colorectal Disorders Program who recommended an appendicostomy, which would allow us to give Piper enemas and flush her bowels through a tube in her abdomen.

Sacral nerve stimulation therapy uses a small device similar to a pacemaker to send mild electrical impulses that trigger the rectal sphincters and pelvic floor muscles.

Sacral nerve stimulation therapy uses a small device similar to a pacemaker to send mild electrical impulses that trigger the rectal sphincters and pelvic floor muscles.

We prepared for the appendicostomy procedure. I took time off work to be with her during her recovery. Our entire families came down to Ann Arbor to be with us during the surgery. Piper went into surgery and we went to waiting room. A few moments later, Dr. Teitelbaum came back and said that once she was under the anesthesia, everything relaxed and her stool came out. He didn’t think she needed the appendicostomy. He told us he thought she would benefit from a different type of procedure that would help stimulate nerves in her rectum. The procedure was called sacral nerve stimulation. Dr. Teitelbaum and his team implanted nerve stimulators in her rectum. As soon as the nerve stimulator was implanted and turned on, Piper pooped. She went every day and Piper thought it was the coolest thing ever to finally have a normal bowel movement.

She’s like a new kid now. She’s eating well, gaining weight and full of energy. She loves to swim, sing and dance. She calls the stimulator her battery and says she loves it. After four years of misdiagnosis and challenges, we are all so thrilled that Piper is finally well. The stimulator will stay implanted for three to five years. At that point we’ll see if it jump started her system or if she needs to have a new one implanted. We go back to Mott every six months for check ups and it’s just such a thrill to see Piper feeling well and enjoying life.

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best children's hospitalsUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.