Newly Diagnosed at Young Age, Very Scared...
Posted , 8 users are following.
Hello,
I've been recently diagnosed with Barrett's at a fairly young age. I'm 29 and otherwise in perfect health - not overweight, never smoked, exercise, only drink socially. My father has had it for a few years, but was diagnosed later in life and my aunt had esophageal cancer that she detected very late in stages and passed from complications (not from cancer so i'm told) - so it's clear there is some history there.
I think what I'm hoping most for, is to just connect with others and hear success stories that this is something totally livable with and not putting a cap on my life years. I've googled and of course, everything comes up mentioning Cancer - which is terrifying. Additionally, I've read some things from others my own age about how they're coming to terms with potentially leaving their children and spouses behind, which is even more painful to read.
My doctor mentioned my size is very small and there is no dysplasia - which sounds positive. I was prescribed a dosage of PPI's and have been researching diet lifestyles.
More or less, I'm just hoping to hear that I have many, many years ahead of me and I can go on to live life as long and normally as any other person without Barrett's. It is devastating to think that my life could be cut short over something like acid reflux. I also worry that being diagnosed so young, and having more years to live with the disease, will shorten my life, too.
Have many people lived long years with maintaining this?
0 likes, 25 replies
kea0827
Posted
Hi all - I followed up with my GI office via email to ask for the size of the segment that showed my barrett's esophagus. The nurse in the office replied with: "I believe it's only measured when it's positive for dysplasia or metaplasia."
That doesn't seem right. Surely they would have had to measure this, correct? My doctor claimed it was "very small" when I spoke with her, but now there is no mention of the sizing. I don't have a good feeling about htis.
seanbyrne kea0827
Posted
how much in cm do you have ?
kea0827 seanbyrne
Posted
Honestly, not sure. Since my diagnosis, I went for a second opinion and need to get a second endoscopy to get a definite yes or no on my diagnosis. The second doctor said the notes he reviewed didn't say it was definitely Barrett's and I had asked about the sizing (because originally the first doctor said "exactly 2 cm"), and the doctor said no where in my reports does it state anything about size - so i'm not really sure where the first doctor got 2cm.
So i'll know more after my second scope. Praying it's a misdiagnosis.
seanbyrne kea0827
Posted
im sure it will be fine, can i recomend ASHWUGANDER, go get ya self some start taking them look on line at the benifits from taking them... i am also waiting on a second test as was told 5 years ago i had half a cm and a hiatus hernia.... im trying other methods the pills they gave me dont work and cause more harm long term,
kea0827 seanbyrne
Posted
I will definitely look into this - thanks for the recommendation! It's a really frustrating diagnosis to have because it feels like even doctors don't fully understand it and it either goes undiagnosed or there's people who get diagnosed then find out they don't have it. It just feels like a mess. I rarely get symptoms other than the occasional hiccup after i eat, and that's it.
I also went to a third doctor (who is more of a specialist at the hospital where i received my original diagnosis) and even HE said that it's hard to tell by photos and notes if i definitely do or definitely don't have it, but he even mentioned that i have little to no inflammation and at the time those photos were taken i was on no medication at all. So really, at the end of the day, it's like if you were unsure of a diagnosis, why would you put me on PPI's and tell me there's 2cm?
I feel so confused by it all. I started out going on such a strict diet, that it made me miserable, so until I get my second scope I'm trying not to worry too much, it's exhausting!
seanbyrne kea0827
Posted
did you get any news?
kea0827 seanbyrne
Posted
I ended up going for a second endoscopy -- where this doctor found no sign of barrett's, nor did my biopsies come back this time with any sign of barrett's. He also didn't see a hiatal hernia, which i was diagnosed with on my first scope as well. They did find a few fundic polyps (that are apparently harmless --hopefully, because they didn't biopsy them or remove) that are typically caused by longterm PPI use. I was only on them for about 3 months, so it's disappointing I would get them so quickly, but my doctor felt pretty confident that they would disappear with stopped PPI use.
So i'm not longer on PPI's, but i do still get symptoms of acid reflux. Nothing ever severe (my symptoms never were), but still concerning based on everything i went through. My doctor recommended a follow up scope at 10 years, but I insisted on moving it to 5 years.
All of these counter-diagnosis really gives someone trust issues when it comes to the medical field. So I hope nothing terrible happens down the road where this was also a misdiagnosis. I feel more confident in the second doctor, as he's pretty well known in his field for barrett's in particular whereas the first doctor wasn't. Definitely unsure of how to feel.
jon46104 kea0827
Posted
Congratulation, I see you took my advice and got the second opinion and got back encouraging results . I hope this thread gives hope to others who have been diagnosed with barretts , because I feel that a second opinion is the only option for peace of mind.
What people need to understand is that big pharma has a lot of pull with doctors to prescribing unnecessary medicine that involve monetary kickbacks. A doctor advising a patient they need to be on PPI 's for the rest of their life becomes a very lucrative for both entities. Like you, I had very adverse side effect that were caused by PPI's , thus making me go back to the doctor for these new ailments, and racking up more $$$ for big pharma and the PCP's
The best way to manage acid reflux is with diet and exercise. I do take Pepcid Complete (famotidine, calcium, and magnesium) when I have a heavy meal or am drinking alcohol, to keep the acid at a minimum. Moderation of food and beverages is key.
I'm glad you're feeling better! 😃
seanbyrne kea0827
Posted
thats good news
TJ5555 kea0827
Posted
What were your symptoms that triggered the EGD and were they constant or did they come and go? Great news on the 2nd endoscopy, that does make you wonder how 2 doctor's and 2 labs could get different results...