Thanks for allowing me to share my story on your blog. And, without further ado, this is my story:
People of all ages may require a feeding tube at some point in their life. There are too many reasons to count that would cause someone to need one. Some use them for feeding. Others use them for "venting." They can be long tubes fed through one's nose down into their biliopancreatic limb as a means of nutrition. They can also look like a big tangling rubber contraption hanging out of one's stomach or lower intestines. They can also look like a little rubber plug in one's stomach or lower intestines.
Hi, my name is Melissa. I became an adult "tubie" in August 2007, at the age of 33, following gastric bypass surgery that resulted in complications. I awoke from an induced coma and found a percutaneous endoscopic gastrostomy (PEG) tube sticking out of my stomach and I was on total parenteral nutrition (TPN) through a catheter. The PEG was being used to drain bile from my remnant stomach which had become temporarily (we hoped) paralyzed. I had developed two not-so-lovely ulcers in my newly created gastric pouch which left me unable to eat by mouth. Being diabetic, I was given TPN to feed my body and continued insulin to regulate my blood sugar. I was hospitalized for five weeks before being discharged with home visiting nurse care.
Slowly over the next three months, my stomach began to wake up and the surgeon removed the PEG tube in his office. Things resumed somewhat normally until March 2011 when I developed a grapefruit sized cyst in my right ovary which needed to be removed before it twisted and cut off blood supply. Recovering from the oophorectomy, I became more and more nauseous and could keep nothing down. We thought I may have adhesions (scar tissue) causing problems.
I had surgery again in July 2011 to remove all abdominal adhesions. Things seemed fine until I was placed on a clear liquid diet. Again, sever nausea and vomiting. I was rushed to radiology and the images showed that my stomach was so distended that the surgeon feared it would perforate. It was paralyzed yet again. The surgeon ordered an Interventional Radiologist to place another PEG tube. Because of the gastric bypass surgery, my anatomy has been altered making it complicated to reach my stomach. Nonetheless, the PEG was in and all the contents drained out.
As time went on, we realized my stomach was not waking up. I had several tests performed to where barium was fed through my PEG and I was tilted on a cold table back and forth and almost upside down trying to get the barium to empty my stomach to no avail. I finally received the diagnosis of Severe Gastroparesis.
To be honest, I have been exhibiting signs of Mitochondrial Disease (Mito) from the age of 20 when I was hospitalized with a perforated bowel due to Diverticulitis. I was told then that "Diverticulitis couldn't be possible (despite a pathologist's report) because that is a disease for geriatric patients--not young people." But hey, I was told it wasn't possible to have gastroparesis either because I had gastric bypass surgery. But I do. I have both diseases and they along with other side effects I have, read right out of the textbook for Mito. I have exhibited progressive gastrointestinal dysmotility, satiety, nausea, dysphagia (trouble swallowing food), gastroesophageal reflux, abdominal pain/distention, neuropathy leading into parethesias (tingling, numbness, and pain), symmetric and distal weakness. I've been told by one gastroenterologist that Mito is "rare." Sadly, it is NOT rare. And, it's not just a childhood disease.
Since the placement of the PEG in 2011, I have switched over to a feeding tube button like my friend, David Watkins. It is much more convenient for me and is less likely to get caught in my clothes, zippers, drawers, and door knobs.
Spread feeding tube awareness and always be your own advocate for better health. You cannot change what disease or syndrome is thrown your way, but you can control how you react to it. Become a champion by learning all you can about it. Sometimes, you may actually be educating hospital staff on how to better take care of you or a loved one.
Much love and blessings, Melissa