- Meet Consumers/Patients
|Tube Talk: Swallowing Solutions|
I am a PEG user (nine years) and cannot swallow. Saliva was a problem, so I have started using a bottle-holder vest for spitting. This vest permits one layer of clothes in hot weather and freedom to wear various non-pocketed clothes. Edwina Sutherland can make these vests or share a pattern. You can contact Edwina through her Web site, www.edwinarichards.ca, or at (613) 730-4265 (Ontario, Canada).
We shared Rob’s suggestion with enteral nutrition consumer Rick Davis, who replied with the following additional suggestions:
I once had someone introduce me to a not-Oley, not-clinical audience by saying: “Every minute or so, we unconsciously swallow our saliva. It is a natural thing we do without realizing it. It is part of our digestive process and saliva helps our dental health. Rick cannot swallow. To understand Rick better, make a conscious effort to NOT swallow your saliva while he is speaking—which will only be about fifteen or twenty minutes.”
When I first lost the ability to swallow and began using a feeding tu
be, I had to spit every few minutes. After eighteen months of that, I was sitting in a meeting at an Oley conference, spitting into a coffee cup. A gastroenterologist who was sitting beside me (Dr. Mark DeLegge) turned to me and asked, “Have you tried glycopyrrolate?” He said it might reduce my saliva. I wrote it down and my primary care doctor prescribed it.
After experimenting to find the right dosage (starting with half a tablet), I learned that two 0.2 mg tablets per day reduce my saliva enough that I need to spit only once or twice an hour, but do not reduce it enough to make my mouth dry (some saliva in the mouth helps dental health). I have been using glycopyrrolate for almost twelve years with no apparent negative side effects.
Because I have reduced the amount of saliva I produce, I can spit discretely into a small bottle and I only need to empty and rinse it every couple of hours. Any drinking fountain or faucet will do for rinsing. I order Nalgene bottles of all sizes from REI online—small ones for spit cups and larger ones for dissolved medications. Usually, I am holding a small bottle. Most people wouldn’t notice it unless they were looking for it. When I’m not holding it, it fits easily into a shirt or pants pocket.
We all find different solutions to situations unique to our condition. Yours may be the best for you. Mine is the best for me. Thanks for sharing your solution.
LifelineLetter, May/June 2014