Patient Comments: Barrett's Esophagus - Experience

Question:

Please describe your experience with barrett's esophagus. Submit Your Comment

Comment from: Eileen, 55-64 Female (Patient) Published: August 20

I have Barrett's esophagus and grade C esophagitis for years and recently stopped taking omeprazole; after 6 years, cold turkey! Thought I was going to die withdrawing from it. When I would eat something, anything for that matter, I would get instant heartburn bad! I would wake up out of dead sleep with heartburn shooting up like a bullet! Then all of a sudden about 40 days after I withdrew, the heartburn mysteriously went away. For days I haven't experienced any heartburn. It is now a pain like my insides are rotting, and doesn't feel good.

Comment from: Kona Kathie, 55-64 Female (Patient) Published: July 17

I have had episodes of unexplained vomiting all my life. After endoscopy I was just diagnosed with Barrett's esophagus. I had no symptoms other than that, no GERD, never any heartburn. I am hoping that the Prilosec will help and I will look better a year from now when I have a follow-up.

Comment from: 3dogkathy, 55-64 Female (Patient) Published: March 19

I have 4 of the 6 symptom of Barrett's esophagus, and I have rheumatoid arthritis and fibromyalgia. I inject 30 mg of methotrexate once a week. I also have zero bladder control, and anal leakage. The pain in the center of my chest has been ongoing for a week. I saw the doctor today, she ordered a scope and chest x-ray and a sonogram.

Comment from: karen, 25-34 Male (Caregiver) Published: July 28

My son is 26. At the age of 13 he had a fundoplication for severe reflux. He was diagnosed with Barrett's esophagus a few years ago. The past 3 - 4 weeks he has had intense pain in his chest and back, feeling like he wants to vomit, lots of sweating and feeling dizzy and faint sometimes. He has had an ECG but it came back clear. He has a disability which makes it hard for him to tell us exactly what is going on. I feel so sorry for him because l know he is in pain but doctors just brush him off because of his disability. What do l do, I am feeling so frustrated and need help for him.

Comment from: DBS, 55-64 Female (Patient) Published: May 21

I was diagnosed with Barrett"s esophagus about a year ago. I took 800 mg of ibuprofen for fibromyalgia for years. I was also on Celebrex. As a child I took aspirin a lot because of bronchitis. I started having heartburn, pain in my chest, and nausea. I was put on Prilosec, but it continued. At a later time I had a scope done by my liver digestive doctor. My Prilosec was increased. I had a small hernia, GERD, irritable bowel syndrome, and 42 polyps in my stomach. After being diagnosed with Barrett"s I was put on ranitidine and they increased Prilosec. I just returned from the emergency room at the hospital with hard chest pains that radiated to my back, fatigue for 3 days, cough, and problem swallowing; I also had a migraine the day before. I always have congestion. It was caused from all my gastrointestinal problems. My mother died from pancreatic cancer and I"m just afraid after all this, I think I need to get a second opinion as he only wants to scope me every 2 to 3 years. The people with cancerous Barrett"s have all seem to have a fast growing cancer and haven"t lived long.

Comment from: tazzy4463, 45-54 Female (Patient) Published: November 15

Well, I am 54 years old. I have GERD and Barrett's esophagus. Last week as I was working I was having really bad chest pains, and was getting a stiff neck. So my friend took me into the emergency room. They did everything thinking it might have been a small heart attack and thank goodness it was not. They asked me about other health issues and I told them I have GERD and Barrett's, but I have not had an attack in almost a year. They asked me about the Barrett's and I told them I had been having problem with taking my medicines and eating. I know I need to be stretched but can't have that done until January of 2018. They think it is the Barrett's making me feel like I am having a heart problem. But I wonder what stage you have to be for it to make you feel like you are having a heart attack. On the Barrett's I think there are 4 stages before it is cancer. It has been over a year or two since last time I had it checked.

Comment from: Will, 55-64 Male (Patient) Published: February 25

I was diagnosed with Barrett's esophagus at Christmas. I have been on Leptazine for many years and now on omeprazole. I am experiencing terrible pain in my sternum area every morning, and persistent sore throat is really getting me down now, it just takes over everything. I just wish it would all go away.

Comment from: MJCoat, 55-64 Male (Patient) Published: January 14

I was diagnosed with Barrett's esophagus at the age of 56. Never once in my life did I have any of the symptoms that are indicative of it and still don't.

Comment from: missy, 65-74 Male (Caregiver) Published: October 07

My husband just passed away from esophageal cancer. He had asked our PCP to order an endscopy for him and was told we don't do that unless you can't swallow. He had GERD for 5 years. It was diagnosed only because he had pain under his right rib cage and then it took 3 visits to our PCP. The first visit he was given muscle relaxers, the second vist a chest x-ray was ordered and the third visit my husband asked for a gallbladder sonogram and it was then that they saw lesions in his liver. The end result was esophegeal cancer with mets to the liver. He lived 5 weeks. This could have been prevented if the doctor would have ordered a scope for him. I think that endscopy should be as much a part of a physical as a colonscopy. Esophegeal cancer and barret's esophegus is increasing. If a doctor does not want to order an endscopy, then check with another doctor and be persistant. My husband was only 65 yrs. old.

View the Heartburn Foods to Avoid Slideshow
Comment from: GERD sufferer, 55-64 Female (Patient) Published: January 21

Many years ago, I suffered from "stomach pain". It felt like I had been punched in the diaphragm. This went on so long I sought medical help. After a number of procedures, I finally had a gastroscopy and was diagnosed with GERD. I was told to have a gastroscopy every year or two which I did. My older brother suffered from "heartburn" and was always popping TUMS or ROLAIDS. Finally, he had a scope done and was found to have esophageal cancer. When they proceeded to operate in order to remove part of the esophagus and reposition it, it was discovered the cancer had spread. They closed him up, and he passed away two months later. Then I saw a program on television about a fellow who had died the same way. His brother was told Barrett's Esophagus, which is a pre-cancerous condition that can develop if GERD is left untreated, can be hereditary. The brother got treatment and was okay. I told my doctor that my brother had had Barrett's and about the show. When he did my next gastroscopy, he told me I did have Barrett's; however, the last one I had about three years ago was clean. I was told I didn't have to continue with the scopes as long as I took the medication. What works for me is omeprazole. I have taken it for years and have no side effects I am aware of. I do encourage everyone I know who suffers from heartburn which doesn't go away with change of diet, to see a doctor and get a gastroscopy.

Comment from: Cyfy88, 45-54 Female Published: December 07

I am a 50 year old female. 10 years ago I had 2 open esophagus sores and 1 open stomach sore, I was not diagnosed with H-pylori or barrett's at this time. Eating Prevacid for 2 years consistently did not cure it. Seemingly chewing licorice root tablets did. I made lifestyle changes, gave up sugar (which irritated my stomach) and refined whites, walked the treadmill 5x weekly and only occasionally experienced heartburn. Starting a business (stress) brought it back. 1 year later "Empty Nest" triggered 2 hospitals visits in 1 week with extreme pain in stomach under sternum. After a CT scan, Ultra Sound and Barium Drink X-rays they determined I had GERD. I requested the Gastrointestinal Doctor to do an Upper GI but she was more concerned about a lower so I did not insist. I found another doctor who was willing to do the Upper and that's when they found barrett's disease with low grade Displasia. I will now take Ranitidine daily and Prevacid 30mgs daily and follow up with another Scope in 3 months.

Comment from: Cindy, 35-44 Female (Patient) Published: November 16

I was diagnosed almost 2 years ago with Barrett's, GERD, and a Hiatal Hernia. I was having a lot of heartburn and reflux, to the point that several times; I thought I was having a heart attack. I was also having back problems in the left wing of my back/shoulder. I made an appointment with my family physician for my back (a follow up after being in the emergency room for several spasms). I mentioned to him that I have acid and heartburn pretty bad. He asked how often and I laughed and told him, "everyday.” I never thought it was that big of a deal. He immediately sent me to the gastro doctor, and commented that my back problems could be part of the GERD. The gastro doctor, ordered an EGD immediately and low and behold, I waited too long. Fortunately, no cancer, however, this is something you never get rid of. I will always be medicated for my acid and to prevent barrett's from worsening. I am reading that so many of you don't know whether to push for more tests, or you wait until you are way too late. You are the only patient you need to worry about! The doctors have many. You need to worry about you and push for anything you feel you need. I am fortunate enough to have great doctors that have been with me for years, and have listened to me when I complain, but many people do not have that, you need to be your own advocate! You want another EGD, then you tell them, and you get them to help you get it approved with your insurance. I just had my second EGD and my doctor has made it very clear that I have to have the EGD every year to make sure the barrett's isn't worsening. I am waiting for biopsies from this last one and they don't anticipate a change, however, I will see him again next year!

Comment from: 55-64 Female (Patient) Published: August 19

I am a white female. Ten years ago, a friend of mine did me the biggest favor: When I told her I always had heartburn, and it occurred no matter what I ate, she told me to immediately set up an appointment with her gastro specialist. I was surprised that he immediately performed an endoscopy. He found I had Barrett's and put me immediately on Prevacid. I was prescribed to take two tablets a day rather than one. I had to go to the VA for care after I lost my medical benefits. They would not prescribe Prevacid but Prilosec. I asked my physician repeatedly for endoscopies to be performed because of the Barrett's. He said I had no symptoms and therefore the medication was working. I finally changed doctors after four years of this. To my surprise and dismay, I had stage II esophageal cancer. The doctor told me to put my affairs in order. This is not something to play with; when you are concerned, fight for your endoscopy. I wish that I had and I might not be going through this. There is nothing to the test, and you are given medication to put you in a dream-like state. Please be sure that you see your doctor on a regular basis and have endoscopies often if you have Barrett's. This is a horrible cancer and you may need to advocate for yourself. I wish I had! I pray that none of you let yours get out of hand. Of course, we now have more information, but stay on top of it, and prevent yours from developing into cancer.

Comment from: Barbaraws1, 45-54 Female (Patient) Published: August 18

In December, I was diagnosed with Barrett's Esophagus. I had a mastectomy in January and reconstruction. I was not feeling very well and my doctor was out of town. I then went and saw the P.A. and as he walked out the door and was closing it he said, "Finally, got to see somebody who is not sick today." I was his second patient. A few days later I went and spoke with our small town surgeon. He wanted to do an upper and lower series. I agreed. The pathology report came back with Barrett's esophagus. I had no heartburn to speak of and he was very surprised. I just went to see my new Oncologist yesterday. He advised me that I was very lucky to have a surgeon who did the biopsy after seeing tissue changes, I agreed. I am still learning about this disease. I am a 52 year old woman. I have a 17 year old daughter. I am treated with medication; however, I am now having more symptoms. I don't know what the future holds, however, I just wanted to write this to let everybody know that only you know what is going on with your body and if you hear a remark like the one I did, please see another doctor. This doctor may have saved my life or he at least, found out what was bothering me and got me on the medication and ordered a PET Scan that was like 3 years over due.

View the Heartburn Foods to Avoid Slideshow
Comment from: rgb, 45-54 Female (Patient) Published: June 12

I just got a diagnosis of Barrett's Esophagus today. I had an EGD done on Friday and they put me on proton inhibitors which have helped. I had been sick for months with vomiting and it finally got to the point I could not keep anything down and I lost 10 pounds in a week. I am very upset that my insurance company will not cover my medication. They will cover it if I were to be diagnosed with esophageal cancer, but not now. I think it is a real shame that an insurance company will let you progress to cancer before they will pay for your medicine. I can't go on without the medicine so I will pay over a hundred a month for the medicine. Today is a sad day for me.

Comment from: Chris, 55-64 Female (Patient) Published: March 06

Last February in 2008, I had a feeling of a lump in my throat, so I went to an Ear, Nose, and Throat doctor and was diagnosed with GERD. After taking various proton pump inhibitors for several months and still feeling the lump in my throat with no changes, I was referred to a gastroenterologist for further diagnosis. He performed an upper endoscopy that showed that I have Barrett's esophagus. This was a surprise as I had never even known that I had a problem with acid reflux, let alone Barrett's esophagus. There were no symptoms until I felt the lump in my throat! I have a normal/thin weight, exercise and eat very healthy, so I have questions as to why I have this disease. Now I will be taking Protonix two times a day as well as calcium and will have another endoscopy in a year to monitor my condition. Since this was found early, it can be monitored and hopefully controlled over the years.

Comment from: jer8226, 25-34 Female (Patient) Published: April 03

I was diagnosed with Barrett's when I was 24. It is extremely scary knowing I have this at such a young age. I had the endoscopy because I had extreme pain under my right rib. I thought it was my gallbladder, but it turned out to be Barrett's. This past week, I've been having problems swallowing. I recently moved and can't find a doctor to look at me until May. I just want everything to be OK.

Comment from: retch-retch, 55-64 Female (Patient) Published: January 19

I was diagnosed nine years ago with Barrett's esophagus and a hernia. Since then, I was also diagnosed with a peptic ulcer. About three years ago, I had an emergency gall-bladder removal, then a stone removal, plus I fell, shattering my wrist all in one week. My only relief for Barrett's is to take Rantidine 300mg (Zantac) at night before bed and sometimes during day when it flairs up. For the last couple of years, I have found two or three days of Ramen noodles soup and crackers will also get me through the painful episode when you're hungry. Medicines and pain meds are just a Band-aid now. I need surgery. The smell of food makes me want to vomit all the time.

Comment from: Anne P, 65-74 Female (Patient) Published: October 21

I was diagnosed with Barrett's with high grade dysplasia in '05 and had immediate surgery with a partial Gastro-Esophagectomy. I had six inches of my esophagus removed. Post-op recovery was extremely difficult. I am an RN so felt I knew somewhat what to expect. I lost 40 lbs (I have regained 10) and eating is still problematic, to say the least. I must sleep practically upright. I eat small meals frequently and generally stick to fairly low fat, minimal alcohol diet. I take Prevacid 30 mg in morning and Zantac 150 mg at bedtime. I only hope the surgery was absolutely necessary and that all will be OK for the future.

Comment from: judgerms, 45-54 Male (Patient) Published: October 20

I have severe GERD that was first diagnosed in October 2008. I underwent twice daily treatment with Nexium and had a follow up scope in February 2009. I was diagnosed with Barrett's esophagus. My doctor recommends the ablation therapy. My reflux is pretty much under control. I still take Nexium once a day (I have lost more than 100 pounds, quit drinking alcohol, try not to eat late at night, etc). I am concerned that this article seems to recommend that the ablation only be performed by a study group. I have the procedure scheduled in December.

Comment from: [email protected], 55-64 Male (Patient) Published: October 07

I just yesterday had my second in 5 yrs. - endoscopy and colonoscopy. I was diagnosed with hiatus hernia and z-line or barrets. I'm 58. Although I've lived in agony for over 9 yrs., most of the doctors I've seen were concerned, honest and helpful. From what I've been reading on this site, I read repeatedly about, mostly insurers and some doctors, dropping the ball or the paitent. I thought I had it bad with no insurance at all, and going to a clinic run by the University of Florida. Thank God for them.

Comment from: 45-54 Female (Patient) Published: July 01

I was diagnosed as having Barrett's esophagus earlier this year. I still get heartburn, acid reflux and pain in my right side just under my ribs. I have also had a couple of episodes of sickness and feeling very drained and tired. I am now thinking of making another appointment to get things checked out again.

View the Heartburn Foods to Avoid Slideshow
Comment from: Nordy, 45-54 Male Published: July 01

I was diagnosed with “Barrett's syndrome” more than five years ago. The doctor that had examined me was going to set me up for surgery. They had to postpone it until I came off the blood thinners I was on from the blood clots I had. (That's another story.) I had continued to take my prescription for my Barrett's esophagus for the five years until after I had a gone through my second ACL knee replacement. I had been taking ibuprofen (800 mg) every day for the pain and swelling. Once I had my knee fixed, I stopped taking them. It's been almost two years since my knee surgery, and I have not had any problems with my Barrett's esophagus. I can eat anything now. Funny thing is, I must have seen six doctors, and not one of them said anything to me about the ibuprofen I had been taking.

Comment from: dawna79, 25-34 Female (Patient) Published: March 25

In May of 2007, I was diagnosed with GERD and Barrett's Esophagus, which I never knew I had. I was 27. It felt as if I was catching the flu and then was sick. I couldn't eat or drink, not even water or crackers. Then I got very weak over night and couldn't walk from one room to the other. I started vomiting blood and running to the bathroom with diarrhea with blood in it. When we went to the hospital, they told me I had lost so much that if I waited any longer, it would have killed me. I had a blood transfusion. They told me afterward that I had Barrett's. They put me on Nexium.

Comment from: Barrybarb, 65-74 Female (Patient) Published: March 06

I was diagnosed with Barrett's esophagus 10 years ago and have been taking PPIs since. I recently was found to have polyps, probably related to taking the PPIS. My doctor put me on Carafate, and I stopped the PPIs. My heart burn is back so I, without consultation, went back to taking PPIs. I think I would rather deal with benign polyps.

Comment from: Florida Girl, 55-64 Female (Patient) Published: November 17

I have just found out that I have Barrett's esophagus and after the tests, I was unusually swollen in my upper chest area and had a lot of pain. I still have chest pains after I exert myself with work or fiscal activity.

Comment from: shell, 35-44 Female (Patient) Published: October 30

GERD is the main symptom I've had with Barrett's esophagus, but I just had an endoscopy earlier today to make sure the Barrett's has not gotten any worse. I had a biopsy also, but the doctor says this is procedure and as long as I continue to take my medication, which is Protonix, I should be fine. Although a little scary, as I am not yet even 40, I just continue with the medication, as prescribed. Protonix works wonders and I would recommend it to anyone who has these issues. Even without health insurance, it is possible to get Protonix for free, through the manufacturer. Anyone in this position should talk to a doctor about it. Without medication, the chance of cancer increases, according to the doctor.

Comment from: tlc1, 35-44 Female (Patient) Published: January 05

My doctor came across my barrett's by accident. We thought I had celiac disease. I was 34 when diagnosed. I never suffered from traditional heartburn I just had a constant burning in my sternum. My first endoscopy several years earlier detected esophagitis. I am on an expensive drug called zegerid 40mg. once a day. It is a life saver. I notice when I forget to take it my Adams apple feels like it has been hit with a lead pipe. I just had my follow-up with the same diagnosis, premalignant dysplasia. My diet changes and belly weight loss seemed to have helped. No changes. So I am good for 2 yrs. unless I feel sick again.

Comment from: JoC, 45-54 Female (Caregiver) Published: December 08

My son's father was diagnosed with Barrett's esophagus in 2007. He was taking Nexium. He was told that he had precancerous cells in his esophagus. I wish that the doctor had been more proactive - freeze the cells, radiation, something. He eventually was diagnosed with esophageal cancer in September of 2008. He died august 22, 2009 at age 47.

Comment from: clamps88, 35-44 Female (Patient) Published: November 20

I've suffered 25 years + with heartburn and was told the heartburn would go when I had my first child. (She is now 24!!!). I saw various doctors and was told the heartburn was because I`m overweight and will go once lost weight. I finally was diagnosed with a 5cm sliding hiatus hernia and Barrett's esophagus a couple years ago. I live on omeprazole tablets and they STILL do not help. I`ve tried changing my diet. I`ve also recently had my gallbladder removed due to multiple stones and coping with kidney stones, depression and possible arthritis in the knee joints. I am physically and mentally a wreck and hate my standard of life at 43 feeling like a 70 year old. I wish I could feel happier and healthier for myself and family's sake.

Comment from: cpopex, 65-74 Female (Patient) Published: October 30

Barrett's was diagnosed in August. I am on Nexium although I did not always remember to take it. Have had chest pressure on left side (with pinching), back and center chest pressure with left arm feeling "unusual." In the last 3 years I have had chest x rays, heart tests, gall bladder tests, cat scan which were all okay. The Doctor wanted to wait 3 years to do another endoscopy. It is scheduled next week. Somehow I think it is cancer. Maybe I should have insisted on having an endoscopy sooner? I am worried.

View the Heartburn Foods to Avoid Slideshow
Comment from: Dave1Cav, 45-54 Male (Patient) Published: August 21

I was diagnosed with Barrett's esophagus 2 days ago after calling 911 thinking I was having a Heart attack. The pain was in the top of my stomach and under my Sternum. I had no signs of GERD or Heartburn. 34 years ago when I was 20 I was diagnosed with a Duodenum Ulcer and Hiatal Hernia and was treated with Tagamet then Zantac over a 5 year period.

Comment from: T, 35-44 Female (Patient) Published: August 17

I am under forty and was just diagnosed with Barretts. Mine was based on GERD which I have had since college. I am taking Kapidex which makes me feel a lot better, but I still have a dull pain in my chest. Depending on which foods I eat, I have good days and bad days. My treatment plan right now is to be screened once a year and continue to take meds. I also have bouts of extreme tiredness.

Comment from: bee bee, 55-64 Female (Patient) Published: June 04

I was sick with acid reflux; I had no money so I couldn't see a doctor. It got to the point that I was up all night sitting up with heart burn so bad that it went to my throat. Finally, I had a break down from shaking, vomiting, and losing weight. My mood swings were bad and angry at everyone. While I was in the recovery a doctor looked at me after reviewing my blood tests and told me I had hyperactive thyroid disease and a goiter. It ended up they removed it with iodine radiation. I felt better for a while but of course needed replacement therapy. They also put me on Protonix for the acid reflux. I did very well for about 4 years. The reflux came back I handled it for about 3 more years with bouts of it now and then until I no longer could handle it anymore. I thought I was going to have a heart attack one night. I met with my gastrologist and he scheduled an endoscopy. He took routine biopsies which showed that I have Barretts esophagus. To top it off I have empysema. When my thyroid first began I felt as though this caused the acid reflux which then grew into a problem. Then over time it has worsened. I read that sometimes food overflows into the lungs. At this time I am suppose to have an endoscopy which will be a two year mark in February of 2010. I can't hold food down now, it won't digest, I vomit full chunks of food, I am losing weight again. I can't eat meat, subs, I am constipated all the time. My throat is always killing me, I am constantly spitting up and coughing. Should I push for another endoscopy at this time instead of waiting for Feb. It has been a year and 4 months at this time. I am getting worried.

View the Heartburn Foods to Avoid Slideshow
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