Are there any comprehensive do's and don'ts for newly diagnosed Barretts Oesophagus sufferers??

Digestive health
1

Hi folks,

This is my first posting to the Barretts Oesophagus group, having just been diagnosed with Barretts and a Hiatus Hernia on my Birthday (what a birthday present). I am amazed at how quickly the symptoms have arisen. Suddenly I can eat very little (both in quantity and variety) and trying to find my way around what I should eat, drink etc. I feel left in limbo by my consultant and GP, who just said I would have an endoscopy every 2 years, and that I needed to manage it well or it could lead to cancer, a bit worrying when they are not advising me what I should do!

Are there any diet sheets available or a comprehensive do and don't hand book??

Regards

Larraine

2

Thank goodness for the internet. Doctors do not seem to go the extra mile. There is so much information at our fingertips now. I have just bought Gluton free chicory. now that I can no longer have coffee. This website is very helpful and caring . I am using my mobile. and view is restricted but you will get lots of advice on here.

3

Did your Dr tell you what type of Hiatal Hernia you have? Also sorry to hear but you have probably had it for some time it's just gotten worst to theorist where it is causing symptoms . Have you ask around your family to see if it run in it? The problem with the dos and donts is that every one is so different you need to help find your triggers like what you eat and how much. Do you have problems with food coming back up? Perhaps if you tell us more of your concerns we can help more. I my self have had Barrets along with a Hiatal hernia for 3 years

4

I am awaiting a letter giving me an appointment for Gastroscopy. This will confirm Hiatus, I do believe that it will be confirmed. My father had terrible indigestion for years eating peppermints, (probably making it worse) and eating Renies like sweets. My Esophagus started getting sore in September last year, lump feeling in throat all other symptoms. I had never heard of GERD and all my fav foods now out of limits. I have always kept fit size 12 and swim regularly, so weight not always the reason for this either. Never smoked or drank to excess, probably inherited it. Thankfully the internet gives so much information .Thankfully my food does not rise up in my throat. I have now actually started eating smallest of meals too.

Regards Maureen

5

I have a sliding Hiatus Hernia, and I am told this has probably gone unnoticed for a long period of time and consequently the likely cause of the development of Barretts. I have been reading all the suggested 'good' foods in the discussion groups, and now trying to work to a diet that helps. Like you Im finding all the foods I like are causing me problems.

I have been prescribed Lansoprazole, and although like the sound of some of the alternative medicine suggestions, wondered if taking both would help?

Larraine

6

Like you I have a sliding Hiatus Hernia and have been told I now have Barretts.

I am waiting to have a pH and manometry test and a Helicobactor check.

Not sure what all these tests will find but at least I feel that they are checking every thing.

In recent years I have taken many different tablets to try to ease the pain.

I seem to have a continues upper abdominal dull ache and would be interested to know what sort of aches are experienced other sufferers?

7

Another treat I found on Amazon is Carob and Hazelnut spread, it is called biona, it is lovely spread on toast. I bought six jars (400g in each) £19. I have no reflux problem with this at all.

Thought I'd share this, this is like a choc spread healthier too. Just waiting for the delivery of Carob buttons.

8

Hi Larraine,

Look I have been diagnosed with Barretts Mucosa,hiatus hernia and inflamed gullet,have my 2 yearly endoscopy(with sedation),and have endured periods of absolute despair,mainly at night but by day also,at the moment all seems to be ok and I can eat anything,and quickly,being ravenous.

I now very seldom tale lansaraprozole,but do take the odd Ranitidine(once called Zantac) if I feel slightly distended or uncomfortable.

I tried slippery elm(not nice tasting) and deglycerinated licorice,plus a digestive enzyme all bought at a health shop,besides the prescribed meds and things improved,FOR A WHILE.

Back to docs,another endoscopy,similar result as listed above,same treatment.

I suspected an ulcer,having had a duodenal way back,but no signs of one,anyway tried all the medicines,at random for a week,and tried to eat normally,not cutting down on food and slowly my symptoms disappeared,and have never caused me a problem in over 4 months now,they could return tomorrow,who knows.

One thing I did realise was I was worrying way too much so I taught myself to turn off even be it briefly and I'm sure it helped,stress is the silent enemy and is a big catalyst for this kind of problem.

I now rise early,walk as often as I can,do crosswords,watch a movie,play with my granddaughter,anything to prevent me from dwelling on this condition,it's still there,it will never go away,but never let it get on top of you if you can,it beat me a couple of times,but like a champ I just got up off the canvas and fought back.

I take pregabilin regularly for moderate pain (had two knee replacements) I think this helps as it is also a mood stabiliser and not at all addictive,although you must follow the dosage.

And drink loads of water too it dilutes the acid.

Well I wish you well and hope that some of this makes sense,always read the medical forums and get ideas off people,some may well work,try anything and most of all cut down on the stress.

Regards Malc

9

Malcolm

Thanks for this, it does help, like you I think I have worried incessantly about it, and clearly have been worse when I do. I am now trying to take it in my stride and monitor the things Im doing and eating etc. to see the effect. Similarly the Lansaraprozole didn't seem to be having effect, so I am trying the alternative medicine suggested. I am waiting results of further tests as to the severe pain as the doctors think there is another problem not associated with Barretts.

Thanks again, good to hear things are better, and Im sure stress is a contributor.

Regards

Larraine

10

Hi Larraine,

Good to hear you're taking steps to get to grips with this debilitating disease,you know not all doctors are very understanding or sympathetic to this condition,I've been lucky.

Do's and dont's well it varies from person to person I think,depending on the severity of the Barretts and all the usual acompaniments,GDR and Hiatus hernia.

My plan was to try alternative meds as I said and to eat sensibly and frugally,you know bananas,apples,high fibre food,not too much milk and to bombard the thing with all I could,both natural and prescribed,but not to take more than the prescribed dose.

For instance I would take a lansaparozole first thing in the morning before eating ,eat then have slippery elm with honey after,plus a DGL,have a small lunch and another slippery elm plus DGL,for tea lansaparozole before eating,then fish or a chicken dish,and no food after 21.00pm but loads of water.

Trouble is I got hungry but the more I ate the worse I became and after about two months I thought well beggar this i'm gonna eat well,distension soon after but i carried on eating eased off lansaparozole,got some ranitidine off doc and swallowed two or three after meals and slowly it all subsided.

Yes I still have odd days where I am not right but I can handle it and it was after i accepted that part of this with me was psychosomatic,so I meditated and relaxed a bit more,and I've eaten properly now for 4 months,but how long will this last?

So really do pester your doctor for alternative medication if yours is not working.

Read up on other peoples posts and you'll be surprised how lucky we are.

Exercise,walk or cycle it helps.

Drink that water day and night.

Accept the symptoms don't fight them,tell yourself I can beat you,(it takes time)

Do use the elm apparently it tries to reline and contain the affected areas(old N American Red Indian remedy)

And always see your doc if and when symptoms worsen.

Don't overworry,don't eat curries or spicy foods,avoid oranges and lemons,and any acidic foods,don't over do the milk too much is not good about a half cupful,don't use mouthwash,it will bite back,don't give up even when your'e at your lowest.

I lost both my mum and dad with esophagus cancer,I know the score it will not get me!

Another 'DO' keep in touch with the members an they're a varied bunch but very advising and comforting.

Yours Malc.

11

Hi all its really good to hear other peoples stories as im recently diagnosed with both barrets and hiatus hernia,Im still waiting for my biopsi results ,but im finding it really hard to come to terms with the diet(allthough i am sticking to it ),Its what im allowed to drink is whats baffeling me ,can we drink anything other than water? and are we ever allowed to drink tee or coffee again, regards Melanie

12

Dear Melanie,

Have had Barretts for 2 yrs now,when I felt really ill I stuck to water and a small measure of milk daily for months,but I also had a couple of cups of weak tea each day,which seemed ok.

I also had my natural remedy of Slippery Elm,mixed with honey and warm water,more like a paste than a drink but I swear by it.

I also had the odd bottle of beer,which strangely went down OK.

Now i'm a lot better I drink tea,fruit juices,fizzy pop,beer(not much) and zero bad effects.

I think when you are really suffering,stick religiously to a modified diet of sensible drinks,but when you feel better,and you will,open up a bit,you only live once,my daughter put me right when she said a lot of this discomfort and phobias about food and drink could have been partly psychosomatic,and she was right I took a new direction and didn't worry about consequences,now I've stopped the Lansaraprozole and eat and drink pretty much normally,but I eat slightly less and drink slightly less than I did of old,I am not a masochist and would not send out an invitation for GERD to give me more sleepless nights and days of discomford.

Moderation is the key,but try to banish that fear of what to eat and drink,it'll make things worse,really

Hope you soon feel better,and enjoy whatever food and drink you have.

Regards Malc

13

Thankyou Malcolm its really good to hear how others cope with this ,not sure if its theright thing to do but im having the odd glass of ribena and it seems ok, thanks again

14

Hi Mel,

Ribena should be fine,full of goodness and vitamins that you need,you know sometimes the doctors get it wrong stomach problems can be caused by too little acid in the stomach,when at my worst I sucked on a slice of lemon which seemed to help,strange but true,think you have to seek out that which upsets you and that which doesn't and work from there..

15

Hi Laraine

I have a sliding hernia with Barretts too so understand how you feel. It is a shock to hear that you have Barretts but once you get it into perspective then you will feel better. On the positive side at least we are being monitored whilst many people are probably walking around with it and do not know they have it. Only a very small percentage ever goes on to develop cancer and there are many stages the cells go through before they get near that. There is also what they call the Halo procedure. This is where they can laser the Barretts away altogether and has a very high success rate. This will not be done, though, until it reaches more of a serious level.

Regards controlling the acid I have found that reducing my carbs (especially all white carbs such as white rice, white bread etc ) to be very helpful and rarely get the acid problems now. I was on 40 of Omprazole per day but have now reduced it to 20 per day. I am a little bit wary of coming off them altogether as I do want to keep a fairly rigid control of the symptoms and want to avoid the Barretts getting worse.

I find sipping lemon and ginger tea very good for bloating and nauseous feelings and also keeping some Digestive Enzymes in and taking them after a particularly heavy meal or one where I think it may be going to give me trouble later.

Hope this helps you a little - just make sure that you keep your appointments for your check ups - yours has been caught early and that is the important thing.

16

Barnie

Thanks for this, it is really good to hear what like minded individuals are doing and what works and what doesn't. Interesting regarding the Lemon and Ginger, I have been avoiding that because I thought anything to do with lemon was a no no., but I will try it, I have tried just ginger tea and that seems to help. I am also keen to reduce the level of Lansoprazole because of any potential longer term side effects which I understand can affect the bones, and having also been diagnosed with arthritis I am careful not to take anything which adds to that problem. I have taken to having DGL and Digestive Enzymes and they seem to be helping.

Thanks again.

L

17

Hi Larraine,

One very important don't is to ever think this has gone if you feel better,I've had four months literally free of any major problems but this past week have had a return to less pleasant days and nights,not as bad as pre Christmas but nevertheless there,I have not been cautious enough and have let my regime slip thinking it had gone.

So therefore one big do is to stick to your regime that works,eat and drink sensibly,do not overeat,nor drink too much,and never get to the point where I was stupid enough to think I had beat it,now I am playing cautious again,what a mug I am!

I will get better and I'll do it within this week,I know what not to do now.

Wish me luck

Regards Malc

18

Hi Larraine,

I am sorry to hear that you found out about Barret on your birthday. I really don't know how the GI doc decide when one should have the next endoscopy. I was told I have to do it every year. I don't think I like to do that cause I did not feel good for a long time. My stomach is bloated since the endoscopy and my chest pain has increased. I am eating less now and that seems to help. Less carb helps too and no sugar. Ginger tea is awesome. I have taken chocolate out of my diet. I found out that I cough immediately after eating it. This blog has really help me not to think that this is the end if the world for me.

I have stopped taking Omeprazole because I have constant headaches. Now I am taking homeopathy. Don't know if it is working or not. But my headaches are gone. I don't know if I am doing the right thing... I am just hoping I am! I will give my homeopath a chance to help me. Good luck!

19

Hi JulsW

No it is not the end of the world for you I am sure. I am not sure how they decide how often to see you with the endoscopy appts - it is usually 2 years here in the UK unless they want to keep a closer eye on things as far as I am aware.

Lemon is a strange one as it is acidic but then turns to alkaline when it hits the stomach from what I have read. I very often have some hot water and a little fresh lemon squeezed into it and find that is good too.

Good luck with the homeopathy - keep us posted of how you go. Just be sure to keep the acid under control as well as you can though by whatever means you need.

Good luck

Barnie

20

confused HI Malcom ,Jules w and Barni , im gonna be honest it scares me to go off the diet the docs asked me to follow, and like you Malcolm i thought maybe the diet or the meds were working then wham 2 bad nights,does anyone else khow the length of the area the barrets has infected .mines 29cm x2 cm is bad

Melanie