To paraphrase R.E.M. ~ It was The End of My World as I Knew It.. and I’ll Be Fine

I have struggled with GERD (gastroesophageal reflux disease) and LPR  (laryngopharyngeal reflux) for many years. My specialists in Rhode Island, Michigan and New York had prescribed every medication (both prescription and  over the counter) on the market; numerous X-rays, CAT scans, ultrasounds; changed my diet; scoped my throat regularly; sent me to vocal chord therapy, strapped me to a table then turned me upside down while they injected radioactive dye; had me drink barium and radioactive swallow marshmallows; and finally implanted/glued a camera in my throat that required me to wear a fancy fanny pack to capture the photos/info for several days. I was also advised to stop sleeping in a bed ~ so I slept semi-reclined in a chair for the better part of a year.. and nothing helped.

I had a hiatal hernia and my lower esophageal sphincter had stopped functioning.. allowing the acid from my stomach to cause permanent damage to my vocal chords. A biopsy also showed precancerous Barretts esophagus. Four specialists all concurred that I had 2 options ~ do nothing and more than likely develop esophageal cancer in 6 months or have a Nissen fundoplication.. and on top of everything else my gallbladder stopped functioning.. just flat out quit working! Hubby & I weighed the odds and scheduled the Nissen fundoplication and  hiatal hernia repair with my thoracic surgeon who specializes in diseases of the esophagus, thoracic surgery, and laparoscopic antireflux surgery and has lectured across the country and internationally on topics related to general thoracic surgery. And a cholecystectomy to be done in tandem by a doctor who specializes in gastrointestinal malignancies, including gastric, pancreatic and colorectal cancers. He also is an expert in laparoscopic applications of surgery including treatment of gallstones, hernias and staging procedures for cancer. The combined surges took just under 4 hours.

On the day before Thanksgiving November 23, 2011, my life changed forever.. it was the beginning of the end of my world as I knew it.

I was very fortunate that the surgeries went very well. My recovery, however, was difficult. For the first 3 months I was restricted to liquids/purees and finally graduated to minced food for the next 3 months..  but when you get right down to it.. it still beat the alternative.

Unfortunately, I have been plagued with dysphagia, a recurring hiatal hernia and strictures since the original surgery. I’ve had a corrective surgery, plus several other procedures to try to alleviate the issues. I am considered to be among the very few failures of the Nissen fundoplication.. an elite group of less than 2%. It’s hard for me to accept that label.. because of the surgery I do not have esophageal cancer.. so while I may have issues it’s hard for me to call it a failure.

We moved late in 2013,  so I now have a new gastroenterologist.. he’s another very thorough, great guy. In the spring of 2014 I started having new symptoms that became progressively worse over the summer. It was decided I needed  another series of X-rays, ultrasounds, and finally in October another combined EGD & colonoscopy with biopsies.. the 2nd set in just under a year.

I now have a new label.. Digestive Motility Disease aka Gastroparesis (GP) and Irritable Bowel Disease (IBD).. brought on by the “failure” of my Nissen. I also have a gastro-nutritionist who has added major doses of probiotics and celery* to my diet. And I am very gradually finding my way to a new normal.. My normal.

My new day starts at 3am when I take my medications and go to sleep for a few hours.

Once I wake up I need to eat..  that’s an adventure all of it’s own because my gastroenterologist and nutritionist have added raw fruit and vegetables to the already long list of No No’s from the very first surgery. Very few bread products, no dry or gummy foods that can get stuck in my throat, no fried foods, no carbonated beverages, no drinking during a meal, no straws in drinks, no gum chewing.. plus all of the foods that I’m allergic to must be avoided.. well, you get the gist.

If I’m having a good day I can leave the house around noon.. on a bad day I am stuck at home.

Yes, I have missed some family events, had to reschedule appointments and flights. It has been very long year but thankfully, the good days are becoming more frequent. I’m getting used to my new normal..  and with the love and support of my wonderful and accepting family..  I’ll Be Fine.

* Here’s a link that explains why she prescribed the celery.. it’s actually working for me. Who knew it was such a super food, an anti-inflammatory with digestive and other benefits?  ~ sure beats taking more pills!

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1 Comment

  1. Profile photo of Diane Andriacchi

    Glad you are seeing better days… I guess that’s all we can ask for!! You never know what life’s journey is going to bring. I like your positive outlook sister!!

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