This is a part of the Hot Topic podcast series from the Model Systems Knowledge Translation Center on Managing Bowel Function After Spinal Cord Injury. Marva L. Ways, SCI Survivor, discusses Don’t Let Your Bowels Control You.
Sustained a Spinal Cord Injury in 1976
There is a lot of negativity associated with my bowel program. Sometimes I hate when that time comes because I get apprehensive, you know? Am I going to have a good one? You know, I’ve got this to do later on today and I really need to be, you know, to feel comfortable and to feel healthy. Luckily I don’t have a whole lot of incontinence with my bowel so to me that’s sort of like a curse and a blessing.
Because I don’t have to worry about being incontinent with stool but at the same time too the longer I go without having one, whether it’s a couple of hours or whether it’s that next day means that I’m going to have problems with constipation. I have physically had to sort of dig the stool out, you know? And listeners and watchers, please don’t be offended, but sometimes you just have to do what you have to do.
So I’ve been blessed though because I’m so happy to live my life, not just exist, so I’m basically a pretty happy person but when it comes to that bowel program, that can be depressing. It can be depressing for me. It can be depressing for my peers. I have a young lady who lives in Arizona that stayed in the house for a whole year because she had problems with diarrhea and that was last year.
And now she’s even afraid, you know, to go out sometime because she thinks that she may have an accident. It really affects your quality of life, so when things are going well, sure, it’s easy to be upbeat, it’s easy to be happy because everything’s going your way. But when things are not going well, don’t just sit and suffer in silence.
Try and find some way to rectify the situation whether it’s talking to the doctors, talking to your peers, and I must say I do believe in doctors, but oftentimes doctors have this textbook theory. Okay, she’s a C67, I’ve had this C67 so XYZ is supposed to happen. You do A and then B, C, D is supposed to happen. It does not work that way.
Everybody is different. All of our bodies are different. It doesn’t matter if the injury is the same so it’s up to us to find a workable solution, okay? So I would say ask John what’s happening with him, how does he manage it? Ask Karen what’s happening with her, does she manage it? And then maybe you try some of that and put what works best for you.
Don’t let the bowel program control you. You control it. You want to live a happy, productive life. You don’t want to just exist going from day to day to day suffering in silence.
Visit https://msktc.org/sci and get the answers you need from experts who conduct innovative and high-quality research, provide patient care, and work to improve the health and overall quality of life for people with spinal cord injury. That’s https://msktc.org/sci.