Living With Wolfram Syndrome – Adam Zwan

All Gassed Up

Nerve damage caused by Wolfram Syndrome results in many lifelong complications, some minor and others very severe. Eating and drinking has been one of the never ending issues I have struggled with. Regarding food and drink, issues experienced by Wolfram patients consist of glucose fluctuations, mood swings, low tolerance for specific food groups, as well as metabolic problems.

In the past few years, my metabolism has suffered from nerve damage making eating and drinking feel like a chore. My diagnosis is called Gastro Paresis and it is caused by pancreatic and metabolic nerve damage. After the pancreas has experienced nerve damage, the body runs into a deficiency of metoclopramide, which is a pancreatic enzyme that promotes proper contraction in the metabolism. The symptoms I have experienced are gas, bloating, nausea, acid reflux, heart burn, and indigestion. I have been prescribed a metoclopramide pill but unfortunately the symptoms still exist. The purpose of the medication is not to defeat my symptoms but to prevent my metabolism from falling asleep and resulting in a hospital visit due to constipation.

I experience gas, bloating, acid reflux, heart bun, and indigestion each time I have something to eat or drink so eating and drinking is more painful than pleasurable. I know that my circumstances could be better but they could always be worst. I just remind myself to count my blessing and be thankful that I can still chew and swallow because a feeding tube is the next stage.