DJ struggles with idiopathic gastroparesis, a condition that causes starvation and malnutrition. There is no cure and treatment is minimal. The doctors support DJ's decision to apply for social security/disability but the lawyer says we are still 9 months to a year away from an approval. Therefore, while we wait, all of DJ daily expenses, medical co-pays as well as any alternative therapies and medications (and there are many) are uncovered in any way. We are currently looking into a clinical trial that is providing hope to the future of gastroparesis. I'm proud that DJ is willing to be a part of these trials in hopes of helping himself and others.
Here is his story.
A couple of years ago DJ began complaining of stomach pain. Bi-weekly visits to his physician yielded nothing except fluctuating liver levels. 6 months later his levels were good again and the doctor said it must have been some fluke virus.....but the stomach pain persisted.
We went to a host of new doctors and specialists trying to find out what was wrong. When one of the last physicians told DJ it was all in his head and all he really needed was to see a psychiatrist and do some push ups, he began to give up hope that we would ever find an answer. Desperate I begged his primary care physician for a second opinion and was told that he also felt what DJ needed was therapy and exercise.
At this point DJ was unable to keep any food down. He would eat and minutes later it would come back up. He was wasting away. Unwilling to accept his physician's opinion I called and demanded a referral to a gastroenterologist, it was worth a shot.
A few months and many tests later we had our diagnosis; Gastroparesis. Gastroparesis is a condition of the stomach in which the nerve that tells the muscles to move food through the digestive tract has been destroyed. There are various ways this can happen but his new physicians assume it was a super virus that DJ had contracted 2 years ago and this is a permanent side effect.
Try to imagine watching your child waste away before your eyes.
Over the last 9 months I have watched my son lose nearly 90 pounds with no explanation and seemingly no end. He cannot eat without becoming severely ill. A single bite of food will have him in a fetal position, sick for days.
Most are not familiar with Gastroparesis, though a television special was run on the Today show featuring a similar situation with a 14 year old girl that almost lost her life to this horrific wasting disease. Try to imagine having the stomach flu every day, your body weak from malnutrition, and any activity seems to set off searing pain throughout your stomach. My son has described it as “having a coiled snake in your gut”. The condition makes it impossible for most gastroparesis patients to work and they are left with little resources aside from Disability or Social Security.
People with gastroparesis are relegated to a life of very little solid food. What one person can tolerate, another may not. There aren’t any real rules for what will work and what may not. Imagine being told at 19 that you will be restricted to a liquid diet for the rest of your life. Solid foods simply will not process, oft times forming blockages that have to be surgically removed. It gets worse, if a balance isn’t reached with a caloric intake that will help to gain or at least maintain body weight you are placed on a feeding tube. And worse….if feeding tube nutrition doesn’t work there isn’t much left except multiple organ transplants or starving to death, which isn’t really an option.
There is no cure and treatment is minimal. The drug that works best for this condition was pulled from the market several years ago for what most feel are “political” reasons. It can be obtained out of the country but the cost is high. There is research being done on a ‘pacemaker type’ device, stomach bypass surgery and a gastric stent, but these procedures are either considered elective or are in the clinical trial stages.
If you have the heart, if you have the means, please help us.
- Beverly & Keith Pixley
- Mark White
- Rebecca Otto
- Omayra Ortiz
- Emily Grainger
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