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truthfreesall
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Quote truthfreesall Replybullet Topic: Newly Diagnosed So Many Questions. Please Help
    Posted: 26áJulá2019 at 3:01am
Hello Gentlemen. To start off I'm a 35 Year old male (just turned 35 a few days ago) from America. I was having bowl issues, still am were I have soft stool that disintegrates like diarrhea when flushed. I also saw that my food didn't look fully digested in my stool (sorry for the graphic detail).

I originally went in for this issue in April of this year and was advised to do a colonoscopy based on my family history of colon cancer.
The issues progressed and I went back because I had a celiac blood test come back positive. My doctor agreed to do an Upper endoscopy. Which was done 2 weeks ago right after my birthday.

The results came in 2 days ago, negative for celiac. Positive for Barrett's Esophagus with hiatial hernia and without dysplasia. Also, there was a lot of inflammation. Crazy enough like the 40% of people diagnosed I never really experienced symptoms of Acid Reflux. I was in shock because i never expected this outcome. When he said the "word Precancerous condition" I went numb. I also don't fit the statistic. I'm of South Asian decent from the Caribbean, Never smoked, not obese, hardly ever drinks and takes care of himself. I did have bad habits though I didn't eat the healthiest, and I often ate right before bed as I worked late came home ate showered slept. I used to drink a lot of coffee as well.

I've been prescribed Pantoprazole 40mg Once daily. I changed my diet as best i can in the past 2 days. Cut out coffee and tea (a killer for me was my favorite part of the day) lemons, orange juice etc...

I wait 4 hours to lay down after eating. Was wondering if this is even correct.

The other questions I had were:

1) what can you safely substitute for coffee for some morning energy?
2) I'm training for Police and I read that you can't lift weights with Barrett's which is something I can't afford to not do.
3) I also read you can't run again something I have to do in the academy. I want to know if these things are safe for me to do.
4) also about sex. Do I have to wait after eating for sexual activity and I read missionary isn't good due to the position not being suitable for acid reflux.
5) should I HALO my Barrett's
6) can I take multiple vitamins, vitamin d3, vitamin b12, monolaurin, folic acid and manganese with Pantoprazole.

also as crazy as this may sound, the Pantoprazole seems to be making my acid reflux worse. I never felt burning in my chest or burping after meals and with this meds I do. Or maybe i'm so self conscientious now i'm over thinking things.

and my last question is that I read that the chances of my Barrett's becoming cancer is like 0.5% a year. Does that mean that's it's cumulative meaning that say in 10 years my risk of getting cancer has increased to 5% and after 30 years to 15%?

Lastly I'm so glad I found this forum. It's crazy there isn't any support groups like this in an American site/forum. So I just want to say thank you and I'm grateful for all of you.


Edited by truthfreesall - 13áNová2019 at 11:03pm
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truthfreesall
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Quote truthfreesall Replybullet Posted: 27áJulá2019 at 1:50am
Please guys. Any assistance or answers to any of the questions will really help. Thank you again for the support.
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chrisrob
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Quote chrisrob Replybullet Posted: 28áJulá2019 at 10:47am
Hi and welcome to the forum.

Your Barrett's developed due to reflux of acid from the stomach; your body tries to protect you from the erosion by forming "armour plating" cells around the lower oesophagus. These cells are what we know as Barrett's and the concern is, in a small number of cases, they can mutate to cancer. However, that risk is really very small. In approximate numbers, there are about 320 million in US of whom, Mayo Clinic estimate about 16 million probably have Barrett's, though the majority don't know it. Of those, about 16 thousand a year will die of oesophageal cancer: that is about 1 in 1000 or 0.1% per annum. But it is not accumulative. In fact recent research has shown the risk actually diminishes, the longer you have had Barrett's, the less likely it is of progressing.

I do wish doctors would not describe Barrett's as "Pre-cancerous", it is only potentially pre-cancerous.
"After you tell a patient that they have Barrett's and that only a very small minority develop cancer, just stop. Stop and acknowledge that you said a very scary word, 'cancer.'"


There are many misconceptions regarding Barrett's and the biggest are to do with diet.
Your Barrett's developed as a protection against reflux of stomach contents which contains strong acid.
1. Foods do not change the acidity of the stomach. That is regulated by neurotransmitters as described here.
2. Acid does not cause reflux. Reflux is due to a malfunctioning lower oesophageal sphincter as a result of the hiatus hernia (described here).
3. There's no need to give up on acidic foods or coffee unless they cause you discomfort. They do not exacerbate oesophagitis nor Barrett's. If you feel heartburn pain from them, it will be due to them irritating oesophagitis which has already formed. After a few weeks on Pantoprazole, oesophagitis will usually heal.
(See these extra chapters from the Down With Acid encyclopaedia: Heartburn, coffee)

Pantoprazole is a member of the class of drugs called Proton Pump Inhibitors (PPIs) that prevent the stomach making so much acid. They don't stop the reflux but they make it less dangerous. Reflux needs to be managed by lifestyle modification.
40mg pantoprazole is a normal low maintenance dose you will probably be on for life as they probably reduce the risks of mutation towards cancer.

Those of us who know we have Barrett's are the lucky ones. We take medication that may help and receive regular surveillance scopes every few years to check it isn't showing signs of pre-cancerous changes. If changes (dysplasia) were ever seen, it would be early enough to be treated by ablation therapy (eg Halo). (It's those who don't know and will probably not know until swallowing difficulties due to a tumour, that will develop the cancer.)
Ablating non-dysplastic Barrett's is not recommended. Because you have developed Barrett's before, you would likely develop it again. (Apart from the reflux and acid, there is a genetic profile we are slowly deciphering that may predispose towards Barrett's development.) That means you would still need to take the Pantoprazole and receive surveillance scopes.

To answer the other questions:
1. Coffee in the morning (or at any time) is absolutely fine - if it's not causing you irritation.
2, 3. Lifting weights and running should be no problem - just not immediately after a big meal. Exercise is good (as long as it's not squeezing, shaking or tilting a stomach full of food still digesting and the acid that goes along with it). I know I've had Barrett's at least 25 years and probably much longer and had reflux issues all my 70 years of life. Until recently, I cycled 30 miles a day (and would think nothing of a 100 mile ride) and have cycled in various tough terrains, including over the Andes. It didn't affect my Barrett's.
4. The above advice probably also goes for sex, depending how athletic your performance and whether you've just had a big meal.
5. No to Halo, unless it shows dysplasia.
6. No problem if you wish to take multivitamins - but you may wish to discuss with your doctor if you actually need them. Most of us get sufficient vitamins from our food.

Many seem to imagine their PPI is making matters worse. However, it's probably because of a developed heightened awareness, perhaps at a subliminal level. Although PPIs won't actually reduce the reflux, as mentioned earlier.

Hope that has helped. Do ask if you have any more questions. We'll try and help.
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truthfreesall
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Quote truthfreesall Replybullet Posted: 29áJulá2019 at 3:55am
Thank you for your response and advise Chris!.

I have another question and this one may sound silly but I'm the better safe that sorry type.

My GF and friends want to go to a roller coaster park in the up coming summer weeks. However, I wasn't sure if I would be able to participate due to Barrett's. I wasn't sure if the roller coaster would be harmful to acid reflux and my Barrett's or not so I told them I would let them know once I find the answer.

Thanks again, you're an amazing person for helping newbies who are afraid of this condition.
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chrisrob
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Quote chrisrob Replybullet Posted: 29áJulá2019 at 9:35am
Activities such as you suggest will not make any diffrence to your Barrett's. Enjoy yourself. But it may be best not to fill up with burger and chips immediately prior to the ride.
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truthfreesall
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Quote truthfreesall Replybullet Posted: 30áJulá2019 at 2:19am
Thanks again Chris! Seeing a Specialist tomorrow. Will keep the group informed if I find out anything relevant.
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truthfreesall
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Quote truthfreesall Replybullet Posted: 31áJulá2019 at 3:05am
Saw my doctor today this is what we discussed:

1) Diet: There is no true direct correlation between food and diet in the progression of Barrett's. Food doesn't cause acid reflux. The only thing is that everyone has certain trigger foods that does. Best thing to do is make a food journal of foods that cause reflux symptoms and avoid them. Reflux is caused mainly by an issue example hiatial hernia or improper esophageal sphincter functionality.

Also portion control is huge. Many of us with a HH will get reflux if we over eat. It's like filling a pot with water that has a loose lid and trying to run with it. Over eating causes the stomach to reflux due to pressure in combination of the malfunctioning esophageal sphincter and HH.

2) Exercise: Exercise and sports shouldn't effect Barrett's as long as you don't eat and drink 2-3 hours prior to sports. Weight lifting, running, bike riding, swimming are all permitted as long as you monitor if any activity causes discomfort or reflux symptoms. If they do adjustments can be attempted. Exercise is actually highly recommended for Barrett's as one of the things that increases the progression of Barrett's is obesity.

3)Bed height: The head of your bed or how your head is positioned during sleep should always be above your stomach. A bed wedge, pillow wedge or electronic elevating frame can all be used to achieve this. The desired bed height is between 8-11 inches. This height is recommended to prevent night time reflux.

5) The progression rate of Barrett's varies dependent on factors of the findings in each invididual. Those with no dysplasia are at a 1% chance of progession per year. That 1% is not cumulative. Think of it as flipping a coin. You flip a coin every year with a 1% chance of progression.

6) PPI's: He told me that there are a lot of misconceptions of PPI's, examples: they cause cancer, they cause lupus, they cause nerve damage etc...
He said these are lies and that most PPI's are safe for long term use. Milder side effects do come up and if they do dosage or medication can be changed.

7) sex: interestingly enough sex was the one thing I was told to just pay attention to. If laying down makes you feel abdominal pressure change position. Avoid sex 3 hours before eating. Try not to drink water or smoke before or after sex if you smoke (which you should stop with Barrett's). If you feel any discomfort after sex rather than laying down an relaxing stand up and walk around as this can help settle your stomach a d reflux.

Basically all the advice Chris gave me.


The main things with Barrett's is monitoring symptoms and making adjustments when your notice reflux. If something doesn't cause reflux no need to eliminate it from your lifestyle. Best thing is to make a journal and notate everything that causes you discomfort (excessive burping, feeling to vomit, over full or bloated) or reflux.

Edited by truthfreesall - 31áJulá2019 at 10:06pm
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MarieDay
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Quote MarieDay Replybullet Posted: 31áJulá2019 at 3:40pm
Thank you both for all the information!
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truthfreesall
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Quote truthfreesall Replybullet Posted: 31áJulá2019 at 3:58pm
No problem Marie. I'm seeing one of the best specialist on the condition in my area in 2 weeks. I'll update my findings.
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dangooner93
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Quote dangooner93 Replybullet Posted: 16áNová2019 at 3:42pm
Hi there iv been having digestion problems for a while now iv lost 20 kilos and have thought i have pancreatic cancer for ages it turns out i dont i just have a blocked bile duct in my liver hopefully they are gunna fix me up soon.
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