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04/06/2009 11:54 AM

Newly diagnosed

smbartz
Posts: 5
New Member

Hello -

My name is Shawn and I am a 45-year-old female who has been recently diagnosed with BE (no dysplasia). Since my diagnosis just three days ago I have been scouring the internet for information on this topic as I (and it seems everyone else I know) knows little or nothing about it.

I learned much over the weekend and now today have put a call in to my doctor to discuss the possibility of HALO ablation as it seems that this is the only treatment currently being offered (by some) to BE patients without dysplasia. My doctor initially recommended a follow-up endoscopy/biopsies in one year and has put me on 20 mg of omeprazole per day. I am the type of person who prefers to be proactive, however, and I am hoping that my doctor will be willing to refer me to one of the GI doctors in their office who apparently performs this treatment. I await to see what she says.

Unfortunately, I missed out on a lengthy clinical trial at the Rochester Mayo Clinic regarding the HALO therapy (where I have been a patient in the past) because of not yet knowing I had this condition (I keep wondering how long I may have already had this condition?) That study has seemed to show good results so far and that is why I am interested in pursuing it whereever possible.

I would appreciate and thoughts or comments from any of you that you may have on this or any questions you may have of me. I would also really like to find out how I could get to that 25-27 page forum/discussion that several of you have mentioned entitled "Just diagnosed with Barrett's - no dysplasia" that apparently has a lot of great info in it. I can't seem to see on the website how to find/search for it?

Thanks so much and I look forward to being a part of this group and getting to know you all better. OH! One other thing I wonder about: Am I pretty YOUNG for already being diagnosed with Barrett's? I am struggling with whether I really wanted this knowledge or not - on the one hand I think it's much better that I know and can try to do something about it and I know there's a reason for everything, but on the other hand I REALLY hate the anxiety this has created for me and wonder if I can ever get back to feeling "normal" and not wanting to cry every morning when I wake up? (last night I had a dream that I was told I only had 2-4 years to live and awoke in tears!)

Thanks and look forward to hearing back from some of you Smile

Shawn

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04/06/2009 12:11 PM
Mubert
Mubert  
Posts: 335
Member

Hi, Shawn. To answer your question, click on 'forums' then 'general and support' and scroll down to the tenth item 'just diagnosed, no dysplasia' and you'll find the 27 page discussion you've been reading about. It has a lot of great information. Keep looking in 'general & support' and you'll also find discussions about the BARRX halo ablation that some of our members have had done. I personally haven't had it done yet, though I did discuss it with my doctor. We decided to wait as I was dealing with a lot of other, more pressing health issues at the time. I do take 20 mg omeprazole twice a day, and watch what I eat very carefully. It's really a blessing that you were diagnosed so young, because now that you know you have BE, you can be proactive about it. How long is your segment? As to whether or not you'll get used to having BE, yes, you will. I was diagnosed over a year ago and recently had my second scope, which again showed no dysplasia. That eased my mind a lot. My new eating and sleeping habits have now become a way of life, and while things will never be ;normal; again, I'm at a comfortable place now, and no longer lose sleep over my BE. Follow your doctor's orders, ask questions, and if your doctor doesn't want to talk ablation with you, seek a second opinion. Stay well, and ask questions. I'm sure we'll all help you all we can. Hugs, Muriel

04/06/2009 12:55 PM
GRAMYBEAR
GRAMYBEAR  
Posts: 53
Member

I AM 2 DAYS NEW TO THIS FORUM AND WAS HAPPY WHEN I SAW BARRETTS ON HERE. I HAVE HAD BARRETTS FOR 2 YEARS AND DIDN'T EVEN KNOW THAT I HAD IT. I WENT TO THE DOCTOR FOR A ROUTINE COLONOSCOPY AND STOMACH PAINS. THEY DECIDED TO LOOK DOWN MY THROAT AND THAT IS WHEN THEY FOUND THE GERD/BARRETTS. I WAS PUT ON NEXIUM 2 TIMES A DAY AND HAD TO CHANGE MY DIET COMPLETELY. THE DIET WAS HORRENDOUS BUT A YEAR LATER I WENT BACK IN AND THE BARRETTS DISEASE WAS IN REMISSION AND I WAS LEFT WITH JUST THE ACID REFLUX. MY DIET CONSISTED OF NO TOMATOES, OR ANY TOMATO TYPE OF SAUCES, NO ACIDIC FOOD AT ALL LIKE ORANGES, ETC. NO CHOCOLATE, NO FATTY FOODS, NO PEANUT BUTTER OR REGULAR BUTTER. NO WHITE BREAD, VERY LITTLE SUGAR IF ANY. I CUT OUT ALL SUGAR EXCEPT IF SOMETHING HAD 2 GRAMS OR LESS. NO CAFFEINE, NO MUSTARD, NO GARLIC, NO UNCOOKED ONIONS. THE LIST IS SO LONG AND I CAN GIVE YOU MORE BUT THAT IS PRETTY MUCH THE WORST OF IT. IF YOU WANT TO ASK WHAT ELSE, FEEL FREE TO ASK ME. BUT I GOT RID OF IT BY DIET AND EXERCISE. I HOPE THIS HAS HELPED YOU. I ALSO HAVE THE HERNIA THAT ISN'T DANGEROUS. I ALSO PUT MY BED UP BY 6 INCHES AND I'M SLIDING DOWN LESS AND LESS AS I GET USE TO IT. THESE ARE VERY IMPORTANT THINGS TO DO AND I'M SURPRISED IF YOUR DOCTOR HASN'T TOLD YOU THESE THINGS YET. NO EATING 3 HOURS BEFORE BEDTIME. I'M HERE IF YOU NEED TO TALK ABOUT IT. LIKE I SAID, I'M ABOUT 2-3 DAYS NEW TO THIS SITE AND HAVE TROUBLE STILL GETTING AROUND SO MAYBE YOU CAN FIND ME IF YOU NEED SOME MORE ANSWERS. I KNOW HOW YOU ARE FEELING. BY THE WAY, DO YOU GET THE FEELING AS THOUGH THERE IS A CHUNK OF FRENCH BREAD STUCK IN YOUR THROAT?

04/08/2009 10:35 AM
smbartz
Posts: 5
New Member

Hi, Muriel and Gramybear!

Thanks for your responses! I managed to get into the 27 page discussion and have almost made my way through it. Lots of interesting info!

I feel very blessed to have found my BE as early as I have and even more blessed to live here in MN. I was seen yesterday to discuss the possibility of BARRX/HALO ablation and thank the dear Lord that not only is this kind-mannered doctor willing to do it but he is the one who patented the HALO treatment and was the first in the WORLD to perform balloon-based radiofrequency ablation of Barrett's esophagus!! His name is Dr. Robert Ganz and he is the Chief of Gastroenterology at Abbott Northwestern Hospital. I saw him at a MN Gastroenterolgy clinic. I don't believe I could be in better hands and I feel as though I have truly found an "artist" (as Ralph mentions) if not THE artist. Dr. Ganz is widely acknowledged as a leading authority in the fields of GERD, Barrett's esophagus, CE and peptic ulcer disease, and considered to be a pionner of cutting edge medical technology. I told my husband jokingly that now I know why we live here in arctic Minnesota!

My ablation is scheduled for early May. I feel sooooo relieved to know I am having this done! I definitely need to be proactive with this so I can live my life as normally as possible without (as much) constant worry.

To answer Gramybear's question about feeling like a chunk of bread is in my throat? - fortunately I have had no difficulty swallowing so am thankful for that. And to Muriel's question, my BE is 2 cm (no dysplasia).

I have other GI issues going on (beginning about six months ago) which is what brought me in to the GI doctors to begin with. Colonoscopy and biopsies in that regard all came back normal so that issue is still unresolved but I am to follow up with the original doctor about that if after a month or so on the PPI does not bring relief of my other symptoms.

Thanks again for your responses and I will continue reading the wealth of information you all have provided. Talk to you soon.


04/08/2009 01:30 PM
Mubert
Mubert  
Posts: 335
Member

Congratulations on getting your procedure scheduled! It sounds as if you are truly blessed to have found a great doctor. I'm happy for you. Good luck with the ablations, and keep us posted on how it goes for you. My segment is 7 cm, or I might consider ablation a little more strongly too.

04/08/2009 03:23 PM
smbartz
Posts: 5
New Member

Thanks so much Muriel - I do feel very blessed to have found this doctor. I will definitely let you know how it goes. Take care!

04/08/2009 04:05 PM
GRAMYBEAR
GRAMYBEAR  
Posts: 53
Member

I WAS POSTING TO YOU LADIES AND IT JUST DISAPPEARED. I HAD A SCOPE PUT DOWN MY THROAT AND HE SAID THAT I HAD BARRETTS WHICH IS ONE STEP FROM ESOPHAGUS CANCER. HE CHANGED MY DIET TO NO CAFFEINE,NO CHOCOLATE,AND NO TOMATOES OF ANY KIND, NO SUGAR, WHITE BREADS, NO FATS THE DIET WAS VERY DIFFICULT. I DID IT AND WHEN I WENT BACK IN A YEAR LATER FOR THE RE-TEST,I HAD LOST 20 POUNDS HE EITHER SAID THAT IT WENT INTO REMISSION OR JUST WENT AWAY. IS THAT POSSIBLE? I ALSO RAISED MY BED BY 6 INCHES AND STOPPED EATING THREE HOURS PRIOR TO BED.I CHEATED IN SOME AREAS, SOMETIMES I USED HALF AND HALF COFFEE AND HAD TO USE EXCEDRIN MIGRAINE EACH DAY. BUT FOR THE MOST PART, I WAS VERY FAITHFUL. I CAN FEEL THAT IT'S BACK. I HAVE NOT BEEN EATING LIKE I SHOULD BECAUSE OF THE DIVORCE AND ALL THAT IS GOING ON WITH MY GRANDDAUGHTER BECAUSE OF MY HUSBAND, HER STEP GRANDDAUGHTER. HE IS NOT FOLLOWING THE RULES FOR THE DIVORCE SO MY ANXIETY, DEPRESSION, FIBROMYALGIA, AND CHRONIC PAIN IS . I DON'T WANT THE TEST AGAIN AND I GUESS BEING GOOD ON THE DIET IS THE ANSWER. HAS ANYONE TRIED IT THIS WAY BEFORE?

04/08/2009 07:04 PM
Mubert
Mubert  
Posts: 335
Member

Was a biopsy done with the first scope? That's the true test of Barrett's. I do know that it's important to stick to the diet. I know you're working through a lot right now, but do feel free to pm me if you need to vent or anything. Muriel

04/16/2009 08:57 AM
markdurisen
markdurisen  
Posts: 4
New Member

Hi Shawn,

I just had my 3rd egd tuesday. I will find out the results of the biopsies next week. The last one 4 months ago showed low grade dysplasia. Hang in there.


04/16/2009 10:19 AM
smbartz
Posts: 5
New Member

Hi Mark~

Thanks for your note. I was curious as to what level (if any) of dysplasia was found when you were first diagnosed about a year ago? I'm guessing there was some present as it sounds as if you are having more frequent EGDs? I am praying that your biopsies come back no worse than before and perhaps even better?? I guess sometimes that can happen from what I've read.

Have you considered ablation at all? You may have read I'm scheduled for HALO ablation in May and am very glad to be getting it done.

Shawn

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