Newbie with Barrett's with dysplasia

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Zantac Queen
New Member


Date Joined Feb 2013
Total Posts : 2
   Posted 2/25/2013 11:22 AM (GMT -6)   
I am a newbie and very thankful that I have found this site.
In going through many of the posts, I do believe I am in the right place and I am seeking advice, help, and others who are experiencing the same.
 
I am 57 year old woman, was always atheletic( I was very involved with the horse show/expo industry as an educator/ performer until 2005), kept an average weight of 104 pounds all my life, maintained a fairly healthy diet, my blood pressure is still that of a teenager, I do not take any prescription meds. My only health issues have been seasonal allergies, occassional heartburn, and in my 40's I discovered some lumbar disc problems due to a slight spinal deformity which probably occurred at birth.
 
I was diagnosed with BE back in 2002. (I never really had major symptoms, but all my life I had bouts with acid indigestion, nothing that tums or mylanta would not cure. Most of the time it was bothersome at night.) My GI tried to put me on Nexium for my BE, but I had immediate horrific side effects. My GI told me I was nuts, it was not the meds, and it was my Primary who stepped in and saved me from a trip to the ER. He realized that from my symptoms that I could not take PPI's and he put me on Zantac OTC 150's - one in the morning and one at night. This controlled my Barrett's for 10 years until February of 2012. (I had lost confidence in my GI, one who did not listen to his patient and never went back.)
 
My nightmare began last January of 2012. I started having back problems. Unusaual pain that radiated from my back around my waistline on left side to abdomen, under left rib cage. My reflux was a bit worse, and I was experiencing bouts of nausea, and occassional vomitting. My Primary suspected and ulcer, and reluctantly changed me to Prilosec OTC, despite my bad reaction to Nexium. Surprisingly, I tolerated it fairly well for the first 2 months, but still had nausea. Then every  bad side effect that one could ever experience on a PPI slowly began to manifest and by August 2 they became so severe, I ended up in the ER. I was on Prilosec a total of 5 1/2 months and my health was completely destroyed. My weight plummeted to 87 pounds, nausea, vomitting,abdominal pain, neck pain, anxiety, panic attacks, dizziness, racing heart, muscle weakness, severe fatigue... and on...and on. At the time this all happened my Primary was away for three weeks, so I slowly weaned myself off the Prilosec OTC and back to Zantac 150 2x daily.
 
When I saw my Doctor the end of August, he witnessed first hand the devasting effects of the PPI. I was still experiencing side effects for several months after I went off Prilosec and the Zantac was no longer helping my reflux. I could not gain any weight, experienced constant nausea,abdominal pain, and bouts of vomiting. He was very concerned and ordered an endoscopy. But, he had the difficult task of finding a GI who would take on a patient without insurance. Yes, I am one of the unfortunate, I can not afford insurance. I have not had any since 2000. He managed to convince a local GI to do the endoscopy in Sept 2012.
 Test revealed that gastric body, fundus, and atrium were normal, duodenal bulb and 2nd portion of duodenum were normal and esophagus appeared normal, except for a 3 cm salmon colored epithelium near the gastroesophageal junction. A biopsy was taken.
 
Pathology reports of GE junction biopsy: Scant fragment of gastric cardiac type mucosa with extensive specialized metaplasia, Squamous esophageal mucosa not identified. Focal atypia present consistent with mild/low dysplaysia, although it is primarily in the underlying specialized intestinal metaplastic glands rather than the surface. Negative for high grade or invasive carcinoma.
 
This GI never explained all this to me. He just told me that I need to have Ablation therapy immediately, or I would get cancer. He said that he could reccommend me to his associates, but since I have no insurance, they would not take me.
 
My Primary ordered a ct scan of abdomen/pelvis with oral and contrast shortly after. No other digestive issues.
 
Throughout this horrible last year, I have been seeing an Acupuncturist that has been a tremendous help in treating not only my back, but some of my digestive problems as well. Unfortunately, he can not get them completely controlled.
 
So here I am...I closely follow GERDS diet, made the necessary life style changes, I am extremely educated about BE, more than I ever wanted to be and more than I should ever have to be.  I can not take PPIs, Zantac does not work, I experience bouts of nausea and vomiting, abdominal pain, weigh 93 pounds with severe muscle wasting. Recent MRI revealed Lumbar, neck and some t zone disc and stenosis issues.
 
Well where do I go from here??? I do have an appointment with a new GI. That last one was an real idiot!!! Even if Ablation were necessary, I would still have GERDS and need medication. Nissen surgery is not an option...NO INSURANCE, and I am not convinced that it is the best due to slippage, and other major side effects and complications. 
 
There is very little quality to my life right now. Between my back issues and my BE, I am miserable most days. So do I just surrender myself to the  inevitable...that my BE will progress to Cancer?
 
Thanks for letting me vent.. I am frustrated and obviously long-winded at this point. I look forward to communicating and learning from all of you.
 
 
 
 

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 2/26/2013 9:23 AM (GMT -6)   
Zantac Queen,
I was dx with barretts in June 2011 (no dysplasia), I drank manuka honey (the higher the active + the better)with hot water as a tea twice daily. After 10 months at my next endo there was no trace of barretts. I did change my diet a lot as well but I feel the manuka honey is what reversed the barretts for me. The honey does get pricey, but thats because I use a big teaspoon or small tablespoon for each tea I drink. Just to be clear the honey didn't do anything for the gerd (reflux) but it appeared to heal the damage it was/is doing.
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