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Anyone with Barrett's Esophagus?

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Posted 4/11/2012 5:13 AM (GMT 0)

hrpufnstuf said...
A quick update to my earlier post on my recent BE diagnosis.


The doctor called back saturday 4/7 and I asked if:

I had any dysplasia--answer no



any indefinite for dysplasia--answer no



any inflamation that might have made the pathology questionable--answer no



length of barretts muscosa--answer short (<3cm)



He added that my BE appeared to be borderline and some docs would have been reluctant to call it BE. He wouldn't be surprised on my next EGD to see the biopsy negative for barretts. I have read several reports that barretts does not regress without ablation, so I will not hold my breath for a negative report next year, but I do want to be more proactive on controling acid reflux. I'm taking prevacid every day but I still have to clear my throat often. Speaking of ablation, I asked if I should consider RFA and he said he doubted any doctor in the country would consider it in my case. I also asked if I were a candidate for fundoplication surgery and he thought not, but if I wanted to consult a surgeon I could but a PH test would have to confirm the need.

Wow, you sound like myself! If you don't mind me asking, how old are you? Everything is identical... stage 1 IM, BE, 3cm, etc. I had my initial biopsies taken, 6 months later another set, and now I get to wait 3 years like you. The only difference is I without a doubt have BE. Almost sounds like we have the same doc from the wording you used haha! Any chance you live in FL?

My main concern is my age, I am 25. But I am pretty sure this has been going on since my early teens, just never did anything about it. I am worried that I have a lot of time left for it to progress... can I be on PPI's forever? I know some studies showed they can have some negative effects to your bones.

I would love to talk to you some more because we are very similar!
Posted 10/7/2013 7:44 PM (GMT 0)
I have Barretts esophagus first diagnosed 2009. I am making the decision to go proactive about it. I have decided to seek the Halo procedures at UCI in Orange California. I am also looking into the linx as opposed to the Nissan stomach surgery, because it is reversible, and seems to have fewer recovery problems. Does anyone have any feed back on my planned choices? Did you make any of them and have regretted them? What am I about to face in terms of insurance , healing, and symptoms I can expect?
Posted 10/7/2013 7:52 PM (GMT 0)
theacidrefluxman,

I was confused by your post. They found Barretts the first time I ever had the "silver Cadillac" down the throat for a look -see in 2009. I did not change in early 2011. The beginning stages are a 3% risk according to my Dr. Now that the gird is worse causing me to sit up, I am now a 15% risk. The rising factors have made me decide enough is enough. My questions are more about how insurance views Halo procedures these days( which apparently is an all stop to the progression of cell change)?
Posted 10/7/2013 11:56 PM (GMT 0)
2lips

If you are referring to the chances of Barretts advancing to cancer, the standard answer is less than 1%. I have had barretts since about 2005 and with my nissen I now only have it checked every 3 years after a few years of no advancement.


As for reversible surgeries, the nissen is also reversible. If it is reversed all they leave is the hernia repair.

I've talked with a few different Baretts specialists and they all said there was no need to ablate mine since I have a functioning wrap.

Take care,
Bill
Posted 10/22/2013 8:32 PM (GMT 0)
Bill,
Thank you for responding to my post.

I have been told about 3 options to repair my hernia, ( which I didn't have until after my 4th review of my esophagus). I have had to sit up for about 1 1/2 years now to sleep, since that last review. I am done with that plan, it has sour effects on my day and business activity.

The options I am given are Nissan, TIF, and linx. for that repair, and the Halo ablation is to stop the progression of any cell changes at the BE site.

I have read and heard there are big problems getting the Nissan underway ( tests) and many aftermaths that are not always great.
How long ago did you have your surgery , and how long was recovery for you?
I am trying to figure out the magnets and linx, and I think I have ruled out the plastics of Tif. I am meeting with the surgeon later this month and may not be so lost afterwards about it.

2lips
Posted 10/23/2013 3:02 AM (GMT 0)
2lips


with any of the reflux surgeries they should be doing the tests to determine what is going on and what is the best course of action to resolve it.

Here is a link to my story of 3 nissens and an esophagus tear.

www.healingwell.com/community/default.aspx?f=45&m=2337138


My 1st was 6/06 and my last nissen was 8/24/11. My last was an open surgery and was my easiest recovery. I didn't have any of the referred shoulder pain with the open surgery.

My recoveries have been basically online for most people. Quirky issues off and on for the 1st 3 to 6 months, but I have been able to return to a normal diet between 3 and 6 months also.

I have a slight motility issue after the tear, but still have a full 360 degree wrap that is doing a great job for almost 26 months now. If it weren't for the tear I am confident I would be on my 1st redo still today.

My barretts hasn't grown any since having the nissen. I was Dx with barretts about 8 years ago and had the surgery about 1 year after they found it.


Take care,
Bill devil
Posted 10/23/2013 9:16 PM (GMT 0)
Hi! I'm a new guy! Nice to be here!

I've had Barrett's Esophagus for about 10 years now. I get an endoscopy every few years. So far, so good. No changes in tissue. No polyps. What bothers me is that despite taking 40 mg of Omeprazole every morning and feeling no heartburn or esophagus burning as a result, my GI tells me my esophagus hasn't healed. However only 1% of BE folks develop cancer, so I have no anxiety over this. I'll just keep taking the medication and get scoped every few years. Meanwhile I just sent away for the "Dropping Acid" book. I've already begun changing to a high pH, Gerd-defeating diet. Tough as heck, since all my favorite foods are prohibited, but worth it to get rid of the constant phlegm in the throat and clearing cough that goes with it, especially in bed. Hopefully, it will also let my digestive path finally begin to heal away from all that pepsin! :-)
Posted 1/9/2014 6:24 PM (GMT 0)
Was finally diagnosed with this last year. After years of stomach issues(since I was a child), acid reflux, stomach ulcers and many trips to the hospital thinking I was having a heart attack(sigh, felt like an idiot). Endoscopy and good doctors have set my mind at ease, that I'm not that crazy. Ulcers were left untreated for weeks and damage was done(doctor in this area just didn't believe me). Then constant pain and vomiting. More er trips. Now a really good gastro dr. and this is a very common problem. If that makes anyone feel any better. I have cyclic vomiting with Baretts, lucky me. If I am tired, upset, eat the wrong food(a guessing game), etc. I am deathly ill. Have been so dehydrated that i've need ivs and meds to stop the pain. Begins with an uneasy feeling, then a full blown panic/anxiety attack and then the vomiting begins and the awful stomach pain, chest is burning and aching. Last night it began at 9 pm. Thought I was dying. within an hour and using ice packs and popping a mild sedative(drs approval), I was ok, just exhausted. I'm 62 and this has ruined my life. Looked forward to retirement, but spend each day wondering what will set it off again. I have to be extremely careful about eating out, keeping hydrated, no caffeine including candy, yes I slip up all the time and forget and eat something, I pay dearly in a few hours. Shopping must be planned so I don;'t get too tired or go without eating or drinking for any length of time, going to bed and trying to rest, not getting stressed out. i will have no treatment that involves surgery. Just wish a magic pill to make this stop. I can loose about 5 pounds during one of these episodes.
Posted 1/31/2014 3:12 PM (GMT 0)
I was diagnosed with Barrett's esophagus with dysplasia 3 yrs. ago. I was suppose to have an endoscopy last year but do to my mom having terminal cancer I put it off. I had been doing research about cancer and came across articles that talked about 10,000 iu's of Vitamin D3 daily helps in curing cancer. Most patients diagnosed with cancer are Vitamin D deficient. I also had been researching gastric reflux as I have been a sufferer for 18 years and have been on meds. I learned that ACV vinegar 2 Tbs in 8 ounces of water 1-2 times daily was suppose to help. A friend also told me about the healing effects from oil pulling therapy an ancient Ayurvedic practice (google it) and started doing this daily each morning before eating or drinking anything. I went back to my gastroenterologist on January 16, 2014 and had my endoscopy done and all signs of the Barrett's esophagus is gone. I still have reflux but it seems to be a little better. I'm not sure if I may have been mis diagnosed or if the lab messed up with one of my biopsies or if I actually cured myself. I also stopped using GMO sugar and instead buy pure cane sugar and also have been supplementing organic honey in much of my baking and also in my coffee from time to time. Not sure what is going on but maybe this can help someone. I truly hope that what I have been doing cured me!!!
Posted 6/19/2014 10:59 AM (GMT 0)
Does anyone have Barrett's that are unable to take medication or just don't want to? The medication makes me literally feel like I'm dying, and the side effects scare me. Especially with Nexium giving people heart problems that they have never had before. Right now I'm changing my diet completely and doing some natural things to help it heal. It seems though that everyone is taking a PPI and I'm curious if anyone is trying to defeat this with diet. I do take over the counter meds when I need to, but they still make me feel sick. I'm only 33 years old. This has me pretty depressed.
Posted 6/19/2014 2:31 PM (GMT 0)
Janet: I just read your comment. You most definitely cured yourself. That's the way to go!
Posted 6/19/2014 3:51 PM (GMT 0)
I pray for EVERYONE here!
Posted 12/3/2014 4:10 PM (GMT 0)
Hi Janet

I have had Barrett's diagnosed in 1998. I have had 3 yearly scopes since all with no dysplasia. On 2 occasions the biopsy returned with "no sign of Barretts detected"'. My doctor continued to scope me and the following scope showed Barrett's with no dysplasia. I believe that at times a negative result can occur because the doctor has taken a biopsy from a part of the lower oesphagus that is not affected. Not negligence as it times it is difficult for the surgeon to pick the right spot to take the biopsy. I am not saying you are not cured just that you should have a few follow up scopes just to be sure.
Posted 3/11/2015 11:58 PM (GMT 0)
I was diagnosed with B.E. 16 months ago. I was just scoped again a few weeks ago and its still there. Along with LPR and stomach polyps. Thank Jesus nothing biopsied came back positive for dysplasia but with all the inflammation I am still very concerned. Lifestyle changes, bed elevated, just about every home remedy and PPIs etc etc. My heart goes out to everyone out there. Seminar and consult with Linx surgeon tomorrow but very unsure with a H hernia if that will do the trick even if I qualify.

"different doctors told us diet (such as spicy, fried, etc) foods make no difference in Barrett's"

From my research, doctors do not agree on even if you stop all the GERD, will it help with B.E. turning into cancer or not. So if you think getting surgery just to prevent cancer, unsure if that will do it but to prevent the agony of course, there are plenty of success stories. I've read so much on the surgery and so many go through a painful recovery. I have problems taking pain meds and that is another issue. GI doctor put me on Protinex to wean me off strong Nexium but it is causing my stomach to hurt. Waiting on Dexilant to come in.
Posted 3/13/2015 12:32 AM (GMT 0)
Went today for seminar and consult with bariatric surg. Another lady was there for consult on having her 3rd Nissan redo (no b.e.). The doctor said I was a candidate for LINX. I asked about B.E. and having Linx done and she said it could still be monitored, albeit they have to inject air during scope (think its standard dunno). She also recommended RFA for any B.E. I informed her mine was small and GIs don't recommend ablation for BE,only monitor. Her rationale was why keep it when its dangerous and just be done with it. And then stop the GERD with Linx. Makes sense but she did explain the risks with RFA but one can open up he esp. if need be etc etc. Anyway, anyone have any comments please post. I need to have PH and Man.done soon to see if I am still eligible. Doctor has performed only 4 Linx surgeries but is overseen by doctor with 200 under his belt. Here is a video of Tommy S. regarding his RFA:

http://www.learnaboutbarretts.com/tv-commercial-barretts-experts.php

Post Edited (GIANI) : 3/12/2015 6:41:06 PM (GMT-6)

Posted 3/13/2015 12:45 AM (GMT 0)

Rose49 said...
Hi Janet

I have had Barrett's diagnosed in 1998. I have had 3 yearly scopes since all with no dysplasia. On 2 occasions the biopsy returned with "no sign of Barretts detected"'. My doctor continued to scope me and the following scope showed Barrett's with no dysplasia. I believe that at times a negative result can occur because the doctor has taken a biopsy from a part of the lower oesphagus that is not affected. Not negligence as it times it is difficult for the surgeon to pick the right spot to take the biopsy. I am not saying you are not cured just that you should have a few follow up scopes just to be sure.

I asked the Linx doc about this also and she said basically he same thing. It all depends on where and how they take the biopsy. Human error , eyesight IMO.
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