Remaining continent

I was always a continent, incomplete quadriplegic. To go to the bathroom, two aides had to assist me to transfer. Needing that extra aide meant I had to wait, and I usually could, even though sometimes an accident occurred, which made me embarrassed and frustrated. But I was continent.

Along with my neurogenic, spastic bowel and bladder, I also had IBS (irritable bowel syndrome). It caused pain and sometimes brought me to tears, and a few aides chided me for crying as they considered it overly dramatic. To avoid frequent bathroom breaks, I kept myself from drinking enough fluids, which then made me susceptible to urinary tract infections.

Over time, I figured out a good bathroom schedule. I went every two hours and avoided going during meal times or right afterwards. This worked well but was not always perfect. So when I would see the director of nursing heading to the bathroom, I sometimes stopped in front of the door and struck up conversation. After a while she would motion for me to move. But I waited a bit longer and told her I felt the same way while waiting for two aides to toilet me. The DON and I laughed about it many times but she understood my point.

At night I used a bed pan. Again, when the aides were not quick enough, an accident and wet bed resulted. Some nights I fell asleep on the pan and woke hours later with an aching back. It seemed no matter what I did at night I would end up losing sleep and during the daytime I was exhausted.

One night, after several years of this, I told my nurse I wanted to wear disposable, incontinent briefs while sleeping. I said I was tired of accidents and wet beds and that my sleep was more important. She did not the idea at first because she was concerned about my skin breaking down. When I told her I had done it at home and suffered no skin breakdowns, she agreed.

The aides were supposed to check on me every two hours. But some knew that I wanted to sleep and did not bother me until my call light came on. Overtime I got permission to only have the aides check me at 4 a.m. By that time I had already had several hours sleep. That system worked much better for me and caused no skin breakdowns.

Dealing with my IBS in the facility was difficult because I could not follow the same regimen I had used at home. The pharmacy changed my fiber to a generic that, without enough water, constipated me. My doctor was also reluctant to give me the dose of laxative I had taken at home. He wrote prescriptions to alleviate cramps but they caused further constipation. During the first few months I made several trips to the ER for abdominal pain. The ER doctors said I was constipated, which turned out to be quite common for nursing home residents. They suggested I advocate for the bowel program that worked at home. I tried but the rigid rules of the system made it difficult.

A few years later I ended up in the hospital with severe bowel problems and a bad urinary tract infection. Tests indicated an obstruction and they suggested a colectomy, which they said would simplify my life. I did not want the surgery and asked them to treat my bowel problem medically, and the new regimen worked for a while—until I ended up in the ER again. I reluctantly decided to have the colectomy.

Then, the night before the operation, a voice told me not to go through with it. The next morning I refused surgery and requested a medical regimen be tried again.

That time it worked and I changed my diet to help it along. That same bowel regimen with a few changes has continued to work for the past nine years.

I know that colectomy may be necessary in the future. But I also know how my body works and reacts. I am glad I made suggestions that improved my bowel and bladder care, and I am equally glad that facility staff listened to me.