Ask Nurse Lynn: GI Issues and Extended Toilet Time

Question:

Female, 22 years old, deletion subtype

My daughter lately can spend 2 hours in the restroom trying to poop or pee. It’s a struggle now because it’s inconvenient or unreasonable and unrealistic to spend that much time in the restroom. Also, when I wipe her, I have seen blood when she’s not in her period. I have tried giving her laxative organic tea for it. I know that people with PWS have issues with gastrointestinal issues. This is the first time I am experiencing that. Any recommendations on this matter? Please help!

Nurse Lynn’s Response:

In PWS, bathroom struggles can be a mix of medical and behavioral brain-based factors. People with PWS commonly have slow-moving bowels, weak gut muscles, and poor internal body signals. This makes it very hard to tell when they are finished pooping or peeing. Because of this, many individuals with PWS can sit on the toilet for very long periods of time, strain repeatedly, and still feel like they need to go. This is a medical issue, not a behavioral one.

In addition to the physical gut issues, the PWS brain also struggles with flexibility and stopping an action once it has started. This is called perseveration. Perseveration means getting “stuck” in a loop, doing the same thing over and over because the brain has trouble switching gears. When toileting becomes uncomfortable or stressful, a person with PWS may worry they are not done, fear having an accident, or feel unsure when to stop, which leads them to keep trying again and again. Medical discomfort like constipation can trigger this looping behavior, and then sitting and straining for too long can make the constipation and irritation worse, creating a cycle that is very hard to break without support.

Sitting on the toilet for one to two hours is a red flag and is not healthy. Over time, this can cause small tears, hemorrhoids, and bleeding, which could be why you are seeing blood when you wipe her. Blood when she is not on her period should never be ignored. Generally, we suggest caution when using herbal or “natural” laxative teas in PWS because they can cause cramping and unpredictable bowel movements. Instead, best practice is a consistent, daily bowel plan guided by a medical provider. This usually includes stool softeners rather than stimulant laxatives, good daily fluid intake, fiber from foods, and scheduled bathroom times, often after meals, along with gentle, respectful time limits so she is not sitting too long. Severe constipation can also press on the bladder and make peeing difficult, which may explain why she is struggling with both.

The most important next step is to contact her primary care provider or a gastroenterologist and let them know about the long bathroom times, straining, bleeding, and her PWS diagnosis. Ask for help creating a medical bowel plan and guidance on healthy bathroom routines. When the medical piece and the behavioral structure are addressed together, bathroom time often becomes shorter, safer, and far less stressful for everyone involved.

Please seek urgent care if the bleeding increases, the pain is severe, stools become black, she stops going completely, or she develops vomiting or belly swelling

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