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Barrett's Esophagus

I have had stomach/digestive problems sine 1956. About two years ago it was diagnosed as Barrett's Esophagus. I have been going to a local gastroenterologist in my rural area of Texas. The last three times the endoscopic biopsies were "inconclusive" according to the gastroenterologist.
I have altered my diet trying to eliminate "problem" foods. However, sometimes everything I consume bothers me. I used a wedge to sleep on for about two years until I started having leg and hip problems. Several months ago I purchased an electric adjustable bed, which has helped in reducing the reflux. However, I still have erratic pain and reflux problems. I am currently on 20mg Prilosec twice a day and still I have some reflux problem.
I understand the nature, treatment and complications related to my condition. My wife and I are very concerned.
I am asking for the name of a HIGHLY qualified gastroenterologist in the Dallas, Texas area. I have little confidence in the treatment or concern by my current doctor. I live about 1 1/2 hours out of Dallas but am more than willing to travel to find the right doctor.
Bill Caddell, ***@****
81 Responses
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Avatar universal
Dear Bill,
There are many outstanding sites at which you can receive treatment.  I suggest that you contact the gastroenterology section of any of the wonderful medical schools that ypu have in Texas.  

AS you know, Barrett's esophagus may undergo malignant degeneration causing an esophageal cancer.  Treatment consists of acid reduction.  It is also necessary to do endoscopic surveillance to exclude early malignant change.  The frequency of these surveillance studies ranges from every few months to every 2-3 years.  The degree of dysplasia (cellular change)is the determinant of endoscopic frequency.
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Avatar universal
You know, I have been so interested in the Barrett's disease, because interestingly enough my mother's maiden name is Barrett. She and her twin sister have had the esophagus disorder described in the Barrett's disorder their whole life, but never knew there was even a disease or disorder named after them.. Is this just a coincidence or could they be related to the founder of this disease or disorder...?
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Avatar universal
I have had a somewhat similar experience. The main difference is that I have not had a definite diagnosis of Barret's Oesophagus.
I would ask for your medical records to find out for yourself exactly what they have and have not found. I don't know if your records are available to you: in Sweden the doctor MUST give you any records you request within a few hours. It is almost impossible to grasp what a doctor says in a few minutes. They are also lousy communicators since they never get any feed-back.

One thing I saw from my medical record was that the biopsies showed no intestinal metaplasi (which means skin changed into another plasma) or dysplasi (which means plasma that is different from what you normally have). The biopsies did, however, "show a picture which indicated Barrett's oesophagus..". As you see, I obtained a much complete picture of my situation with all the nuances than a bald statement that 'it was diagnosed as Barrett's Esophagus'. Let's face it, very few will be able to afford the type of advice from doctors you would expect from any other profession in a few years so we are going to have to find out for ourselves anyway. I took a science degree and did Latin at school so at least I have a chance of being able to read what they say. Do you read Latin in the schools in Texas? Might not be a bad idea if you want to live for a while.

Apart from that and having trawled the net (there is a very good site in Finland called http://www.gastrolab.net with pictures: I thought the healthy bits were the sick bits so that goes to show you need to see the pictures and the text to understand what your doctor is talking about)and if you do have Barret's Oesophagus then taking medication is a very good option. I am on something called Losec in Sweden. An operation seems to give pretty ineffective results and is very painfull afterwards. The site doctor said that and if a doctor said it is painful, boy is it painfull. Most of the studies seem to show that the problem returns after a while.

The reason they try to get rid of Barret's is, as far as I can make out, that it often turns into cancer. Actually, what has happened is that the skin in the entrance to your stomach stops being proper skin and that gives cancer a chance to get going, as far as I can see. If you or I do get cancer then I can't find out what they do.

I would not think going to see anyone else would give you any very different results. As far as I can make out getting a gastropy done every six months at least lets you know where you stand. Since the doctors can't do very much they don't seem to recommend this, but that is seeing the matter from their point of view rather than yours.

One thing that struck me about your tale was that you take Prilosec which may be a name for Losec in the USA. Otherwise I think you may have been put on that since Losec is so expensive. It costs about $5 a tablet here (20 mg) but since we have a government health service that is not an issue and the doctor prescribes the drug he thinks is best for you. I take 2 a day.

Since everyone seems to sue everyone in the US I should point out that I am not a doctor and these are only my personal opinions for which I take no responsibility.

Anyway, Good Luck, and maybe your Barret's won't get any worse. In many cases it doesn't as far as I can see on the web. Where would we be without the web?

Peter
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Avatar universal
Bill,

     I share in your concern.  I was diagnosed 2 weeks ago with Barrett's and my gastro doc began immediately to treat it aggressivly.  He placed me on 20mg of Prilosec 3 times a day and 10mg of Propulsid four times a day.  He wants me to call him in a couple of weeks to let him know how I am doing.  He also said that he would want to do another endoscope in 6 months.  I can understand your frustration and concern.  It has taken me 6 months to even find out what was causing all of my pain.  I only had reflux on occasion.  My main symptom was chest discomfort and pain.  I am starting now to feel some better.  I dont know which way you live from Dallas but I have a excellent gastro doc in Shreveport, La. which would be close if you lived in East Texas.  Anyway, I wish you luck.  Please continue to seek answers if dissatisfied with any treatment you are recieving.  Take care.
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Avatar universal
I've had antacid nearly every day for over 40 years. I've tried every treatment that I could find. It has not been until the past few years that they really had a treatment for Barrett's. The best thing I've ever done was buy the adjustable bed, I incline it every night before I go to bed. Then sometime around 4 am I position it with only a slight incline. Otherwise, I would have reflux every night. The constant reflux is what caused the Barrett's to begin with. Why did not doctors tell me that sooner?  Because I never went to a specialist. BUT I was never informed that I needed to go to a specialist. My father had stomach problems and it had always been thought it was hereditary. So, I assumed I would have to live with it.

I've been to numerous doctors over the years, but NONE every really treated me for the problem. None had EVER suggested I go to a Gastroenterologist. One day about two years ago I saw an public announcement ad on TV concerning GERD and offered a free video sponsored by the Gastroenterologists Association. I saw the video and immediately made an appointment with a gastroenterologist. I already had Barrett's.
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Avatar universal
Joe
I've been on Prevacid for my Gerd/Barretts for over a year with pretty good results.  Although not confirmed by biopsy, the pictures clearly seem to show Barretts cells present.  I saw somewhere on the net that a promising technique was to "ablate" the Barretts cells using a radiofrequency probe much like cardiologists use in the treatment of WolfParkinson's syndrome.  The cells appear not to return.  Several treatments are needed to "burn" the cells and there is reported to be little or no after effects of the treatment other than mild discomfort.  Is anyone aware of this cutting edge treatment of Barretts?
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Avatar universal
There are several good articles on medscape.com. One in particluar is at
"http://www.medscape.com/medscape/cno/1999/DDW/Story.cfm?story_id=689". It duscusses the removal of Barrett's Esophagus tissue. One issue was pointed out - that this procedure sometimes leave
"residualislands ofspecialized intestinal metaplasia" wher eadenocarcinomas (cancer) may develop. The treatment, according to the article, is considered experimental and no where near being routine standard of care.
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Avatar universal
Having fought with GRED my entire life, I was born with a defective sphinter, I was recently dig. with Barretts.  Prilosec helped for a short time although it was the first medication I had any success with.  Approx 2 months ago my annual scope revealed a tumor in the esphogus.  My gastroentrologist recommended seeing a surgen about the Nissian Fundroplocation (spelling?) I did , had it done on 12\10\99 and have had no reflux since.   It is very early I know but at this point I am very happy wiht the results.
It is my understanding that by bringing the reflux in to check the potential for esophogieal cancer is greatly reduced even in Barretts paitents.  I would recomment this proccedure as performed by my doctors.  As with any procedure the results are only as good as the physisians who perform the surgery so find someone who is familliar whit hte procedure and has a porven track record.  Good Luck
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Avatar universal
I had the nissan wrap procedure about 5 years ago in Boston. I had a sliding hiatial hernia with barretts esophagus. The procedure (5 hours)  stopped the reflux by 90% but I still get the symptons which caused me to have the operation in the first place. symptons severe neck pain and left shoulder pain sinus congestion all after eating...since the surgery I can eat something and blow up with gas that makes the hernia worse than before the operation (minus the heartburn) I cannot burp to releive this gas. I cannot vomit at all. I had the flu and for a week I needed to vomit and could not. The surgeon who preformed the procedure said that I would not have to take any medication again. Since I was getting the same symptons my gastro. doc put me on prilosec which I took once or twice a day for years afterword until finally realizing that it was not helping now I am on prevacid but it seems not to work. And when you think abot it why should these medications work after the nissan wrap procedure stopped the reflux. Does anyone have these symptons ?? My endoscopys are done yearly and seem to be okay.
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Avatar universal
Joe
Bill thanks for the medscape reference.  I do all the things we've taked about (elevated bed etc.) I think I have things pretty much under control with the reflux at this point.  Last endo looked good.  Barrets hasn't gotten any worse and the tract looks pretty quiet.  One thing I do that seems to help is each morning I add
Aloe Vera gel to my juice or water.  This gel (I use liliy of the Valley brand) seems to sooth the intestinal lining and I feel that it adds a kind of coating so that if the acid kicks up, the lining is protected to some extent.  Check it out.  The alternative health books recommended this along with deglycerized licorice which I also use from time to time.  I also use Chamomile tea when I have a heartburn episode.  All these remedies seem to help.
Happy Holidays...boy would I love to be able to have a good stiff martini..oh well.
Joe
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Avatar universal
I was diagnosed with Barretts Esophagus about three years ago. I take 20mg. Prilosec daily which has made my severe heart burn disappear completely... but I still get chest discomfort sometimes... also the middle of my back hurts a great deal. I was just wondering if the back pain is one of the symptoms of Barretts, does anyone else experience this?
Thank you all & Happy Holidays.
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Avatar universal
Patricia,

Yes, the back pain (horozinally across the middle) is one of the classic symptoms. Also, frontal shoulder area and down the under side of the arm.  That's why many think it is angina pain.  I had that checked whith heart specialist before I went to Gasroenterologist.
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Avatar universal
I have been diagnosed with Barretts and am taking 20 mg. Prilosec 2x day. Symptoms are episodic not associated with recent meals. Pain in throat, neck, l. arm, chest, back, but most annoying symptom is difficulty in talking (moving my jaw). The quality of my life is deteriorating and I am soon to resign from my profession as an R.N.

All specific and helpful comments are appreciated.
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Avatar universal
Does anyone know of a message board on Barretts?  It would be nice to be able to talk with people going through the same thing.  Does anyone's pain get real severe?  Mine does and it scares me sometimes.  Most doctors that I have talked to dont seem to think that Barrett's causes much pain but I have to disagree with that since I am the one suffering.  Like Darlene, my pain is episodic.  Cant really relate anything that makes it worse or brings it on.  If anyone would like to E-mail me they can at ***@****.  I would really appreciate someone to talk to that can relate what I am going through.

Denise
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Avatar universal
I have read all the postings and then visited a site to check all the drugs mentioned. The side-effects and adverse reactions listed ffor these drugs are too numerous to mention.

I have an excellent book on nutritional healing and would suggest to all with these problems, that some quality herbal supplements to increase the alkalinity of the body would be a good start. Fiber supplements are also important for the hiatal hernia and to carry many of the toxins out of the body. Finally, quality digestive enzymes will help break up food and make it more easily digestable and acidophilus will help balance and increase the good bacteria in the digestive tract.

Anyone interested in more info. can e-mail me and I'd be glad to help in any way. This is a very informative book and heals the natural way by attacking the cause, rather than masking the symptoms (drugs) only to drive the disease deeper into the body, to resurface at a later date, most often more violant than the first attack.

Regards,

Wendell   < ***@**** >
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Avatar universal
My mother was just diagnosed with Barretts along with lung cancer on 12/23/99.  I'm very worried that the Barretts will turn into esophagus cancer.  From what I've read, only about 10% of patients with Barretts develop esophagus cancer.  I wonder if this is accurate.  Any comments on this?  The doctor prescribed tagament (spelling?) for the Barretts.  Has anyone heard of this?  I've read all the posted comments and I keep seeing the drug Prilosec.  Is this similar?  I just want to be sure she is taking the appropriate steps in dealing with this and preventing any more cancer.  Also, if anyone knows where I can find information on proper diet, it would be very helpful.  Thank you.

~Concerned daughter
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Avatar universal
My doctor suspects that I have Barretts.  This was from a test I had done last week and he left this message on my voice mail.  He seems to be under the impression that I must have extreme heartburn and talked about different types of medicines.  I have not been able to reach him to tell I have NO and never had heartburn.  I don't think I have never taken an antiacid.  However, I do have back pain and shoulder pain and some chest pain.  Thought I had heart problem or ribs out of place but I was tested and nothing there.  Then my gastro comes up with Barretts so I am confused if you can have it without all the other. Any comment welcome.
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Avatar universal
Linda,

     I was diagnosed with Barrett's 3 weeks ago by an endoscope.  I was shocked to hear the diagnosis as I have never really had heartburn to speak of.  I had severe chest pain and sometimes it went into my shoulders.  I also had my bottom teeth to hurt.  I thought is was my heart and went to a heart doc first.  He did a stress and echo and said that my heart was fine and that it must be my stomach.  I had never had stomach problems or so I thought.  Went to the GI guy and he did a scope and was very surprised himself that I had Barrett's.  I dont know how I got this because like you I seldom had indigestion.  I am now on Prilosec 3 times a day.  Still dont have indigestion.  But I guess I must have and just didnt realize it.  My chief complaint was chest discomfort that would come and go.  It did not matter what I ate or what I did.  So, you too could possibly have Barrett's.  Did your doc do a scope on you.  As far as I can tell this is only the sure way of knowing.  Good luck to you and if you need to talk you can E-mail me at ***@****.  Take care and Good Luck

Denise
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Avatar universal
Jamie,
Before Tagamet was Donotol (sp?). TAGAMET is a medicine similar to the others.  However, It is probably 10 yrs old. After it, came Zantac, then Prevacid and the latest Prilosec. I've had them all. Prilosec seems to be the "latest & greatest". In my opinion, Prevacid and Prilosec are the best, but more expensive also.

Barrett's, generally, is caused by REFLUX (stomach acid coming into the esophagus - GERD). Usually due to a hiatal hernia at the entrance to the stomach. That's what causes the tissue damage that can lead to dysplasia and adenocarcinoma (cancer) can occur.
When you lie down flat or at night sleeping the muscles relax and allows the acid to enter the esophagus.  This is why I have an adjustable bed now.

It is true that studies have shown that 1 out of 10 Barrett's patients will in time develop cancer, but 9 will not. The "phobia" becomes a condition for many that tends to reduce the quality of life for the 9. Re: http://www.medscape.com/Medscape/CNO/1999/ACG/ACG-01.html
THINK POSITIVE.


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Avatar universal
I forgot to tell ya'll that I have an appointment next Wednesday to go to the Gastroenterology Clinic at Baylor Hospital, Dallas. Maybe they can give me some beter information/results than I've
     been receiving. At least, I will have more confidence in the quality of treatment.
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Avatar universal
I have some of the same symptoms as you all.  It scares me.  I have an appt. with a gastro on Jan.6th (this Thursday).  I am on Propulsid, Carafate, and Prilosec and the pain still persists.  (Mid-back, more on right side, under right arm, and pain in sternum area)  It is worse after eating.  My primary had tests run and I don't have any gallbladder or liver problems. They did do Upper GI and a Barium Enema.  The only thing they were able to find was GERD and a slight hiatal hernia.  The pain has gotten worse and I am hoping that they will do an endoscopy on me to see what is causing my pain.  I have two children.  One 10 and my youngest, 2.  I'm nervous as to the results after my visit.  From what I have read, there is not a very big percentage of persons diagnosed with Barrett's to actually become cancerous.  I wish every one of you the best of luck and happy new year.  I have been dealing with this for over a year and half now and I'm ready to start the Millenium fresh!
Bye, Karen
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Avatar universal
I was diagnosed with reflux and hiatial hernia in 1999, also an ulcer of the esphogus.  I had to undergo emergency gallbladder surgery in Aug, 1999 and ever since the surgery have had terrible pain through both sides of my upper back.  I just went to the Er Mon morning (1/3/00) with severe pain behind my left breast, left side of neck & left shoulder with the pain going through my back.  I was placed in CCU and given blood thinners, nitro pills and patches & put through a horrible stress test.  Results, NORMAL, no heart problem.  I was sent home yesterday (1/5/00) still hurting in my chest & hurting through my back.  I was given prilosec in the hospital and sent home with no prescriptions.  I have pain in my chest a lot.  I also was diagnosed with Fibromyalgia last year.  I get numb places along my jaw line on the left side of my face a lot.  Anyone else with these problems?  I have a gastroenterologist, however, he does not follow me a lot.  After reading about the Barrett's Esophagus, (which I had never heard of) it sounds a lot like what I may have.  My family doctor has even mentioned I am having
sympathy pain from the gallbladder (No, this pain is very REAL).
Any suggestions I would greatly appreciate.  Thanks,
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Avatar universal
Go see a Gastroenterologist and have the endoscopy (tube down esophagus) done so the Dr can see what's going on. No other test are as definitive. If your not happy with the one you've been to, find a new one. That's what I have done. I already have Barrett's Esophagus.  I have appt today at a Gastroenterology Clinic at Baylor Hospital, Dallas. Good luck.
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Avatar universal
I had my appt today with the Head of the Dept, Gastroenterology Clinic, Baylor Hospital, Dallas. He gave me the most thorough physical exam that I've ever had in my 61 years of age. I found in him the concern and thoroughness that I was looking for. I will go back on 1-18-99 for a series of tests/xrays/lab etc and on 1-24 I go for another endoscopy (my 4th). After reviewing my long history of GERD problems, he concluded I needed diet, lifestyle, etc changes to affect the Barrett's Esophagus. He also put me on prilosec in the am and zantec in the evening for best results.  I have a good feeling about the Dr and Clinic and their ability to properly treat my condition.
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