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Richard M
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Quote Richard M Replybullet Topic: Advice for a new member
    Posted: 04 Nov 2009 at 4:55pm

First of all, may I say I'm delighted to find this site and to see how information can be exchanged to the benefit of all. Rather selfishly I've only questions - not answers - at this time. All and any responses will be gratefully received.

I was diagnosed with Barrett's Oesophagus in April this year. I'd experienced terrible heartburn for about 10 years. The condition became worse and I found I was nearly choking with the acid reflux/regurgitation taking place in my gullet when I lay down to sleep.

I had both an endoscopy and gastroscopy. Incidentally I didn't find these to be at all uncomfortable - I was given a sedative beforehand. After the procedure I was told that I had an hiatus hernia and Barrett's. I was initially prescribed 20mg Lansaprazole daily. (I had this changed to 20mg Omeprazole as I found that the former upset my stomach). I take the drug 1st thing in the morning but find that it doesn't always totally quell my reflux in the evening. If I sense a problem is likely I take liquid Gaviscon before bedtime which usually helps a lot. Sometimes though have to get up out of my bed and sit upright for a couple of hours or so until the symptoms subside. Chewing ice and taking sore throat tablets can also help ease the burning sensation in my throat.

I've been advised by one consultant to have a Nissen Fundoplication procedure. And by another (the "lead" consultant who performs the NF operations) that lifetime medication is probably the way to go. Frankly I'm confused by the advice as to the best way forward (I had to see 2 separate consultants as part of the examination procedures). My GP hasn't been able to guide me as to which course to go. Since reading up on the condition I realise that there are as number of other therapies that might be appropriate and which haven't been discussed with me (eg Endoscopic Mucosal Resection, Radiofrequency Ablation, Photodynamic Therapy).

Are there "key questions" I should be asking the consultant about my condition.

I'm due to return for another endoscopic examination any time now and frankly wonder if I should start afresh. Is there an acknowledged "centre of excellence" for the treatment of Barrett's in the UK.

I'm finding myself exceptionally tired - with very little energy. Admittedly I'm 58 years old and in a sedentary job (and have a vegan diet) but this change has been so pronounced in the last few months. Is this a problem experienced by other Forum members? Are there any recommendations for a strategy to overcome this (apart from retirement that is!).

I'm uneasy about a lifetime of (legal or otherwise) drug taking. I've read of so-called natural remedies as an alternative to prescription medicines - honey & apple cider vinegar for example. Do members have any views on the efficacy of these?

Finally I'm sorry this note is so long. If the points have been addressed elsewhere I'd be grateful if I could be directed to them.

Many thanks again

 

Richard M

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chrisrob
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Quote chrisrob Replybullet Posted: 04 Nov 2009 at 6:18pm
Hi Richard,

I'm glad you've found us. Hopefully we can give you some advice.

I am not a doctor but can provide information based upon my own experience and my own internet research.

I am only a few years older than you but had had many years of very painful heartburn and probably had Barrett's at least 15 years though only diagnosed 2˝ years ago.

Like you I was put on Lansoprazole (and then Pantoprazole) and then Omeprazole as they tried to find the one that worked best for me with least side effects. But I usually had to supplement this with Gaviscon liquid at night but would be up frequently because of the reflux cough.

My medication was increased to the maximum dosage (which caused my pharmacist to query it until he knew and recognised me) and I had to supplement this with an anti-emetic (domperidon) to help peristalsis, a cough suppressant (pholcodine linctus), iron, asthma inhaler …

Like you, I hated the idea of a lifetime of drugs and their side effects so asked if I could have the operation. I'm so glad I did.

There are basically two approaches to reducing refluxed acid which causes Barrett's to thrive: either PPI's (the medicines) to reduce the acid or an operation to prevent the reflux.

I had a laparoscopic Nissen fundoplication earlier this year and it gave me my life back.

I am now totally drug free. I had reached a point where I would get out of breath attempting to walk a hundred yards – due to anaemia caused by mal-absorption of iron from the hypochlothydria (insufficient stomach acid) resulting from the PPI's. Now I cycle 24 miles every morning.

The operation took 90 minutes (leaving just 5 small puncture wounds that are hardly visible) and I was discharged the next day with (soluble) paracetamol which I didn't need. For a few days I was on small portions of “sloppy” foods and I lost a stone and a half (which I had been told I would) but I eat normally now and am happy with my weight.

There are claims for alternative remedies and quacks selling their magic cures on the internet which can range from various berries, different types of apple, the cider vinegar you quote etc. Most fruit is good for you. (I became almost addicted to peaches. Perhaps I should sell that on the net as my magic cure?) But, although helpful, they won't cure your reflux nor your Barrett's.

The other treatments you mention are to get rid of the Barrett's cells but you will only be offered those if they find your Barrett's has developed high grade dysplasia when there is a risk of it becoming cancerous. (Fortunately the chances of that are very small and your regular surveillance scopes would spot it.)

I don't know which part of the country you're in but there are a number of very good hospitals and practitioners around. I can personally vouch for the care of the team at Southampton General Hospital.

Please ask as many questions as you like. Hopefully we can find the answers for you.

All the best

Chris



Edited by chrisrob - 04 Nov 2009 at 6:21pm
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Richard M
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Quote Richard M Replybullet Posted: 05 Nov 2009 at 12:47am
Chris
 
Your speedy response is greatly appreciated. I suspect I will have some follow up questions shortly. First I'll go and be checked for anaemia though. I live in NE Hampshire so Southampton isn't far away.  Are BOC patient group members meetings held in this region? Thanks again - you answered so many questions.
 
Richard M
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jcombs99
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Quote jcombs99 Replybullet Posted: 06 Nov 2009 at 1:07am
R.M
   Try one 20 mg before breakfest and one before dinner.Raise the head of your bed 8 in.Don't eat TOMATO EVER (acid)OR FOOD 4 HOURS BEFORE BED. After 7 days ask your doctor to raise it to 30 mg (that's me) twice a day IF it doesn't work .My doctor has one on 5 a day .

                        ASK YOUR DOCTOR FIRST.

                         DO YOU HAVE DYSPLASIA ???

                      HGD JEFF

Edited by jcombs99 - 06 Nov 2009 at 1:14am
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Richard M
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Quote Richard M Replybullet Posted: 06 Nov 2009 at 9:31am
Thanks Jeff. All very helpful advice which I will follow. Just rather depressing about the tomatoes! I grow many different varieties at home and it has been my favourite food. Cheese had been #1 previously but I had to give up dairy produce when I was found to be lactose intolerant.
 
I have no idea whether I have severe dysplasia or not. In reading the posts it seems that many other members are better informed about their condition.
 
Best regards Richard
 
 
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jerryffd
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Quote jerryffd Replybullet Posted: 20 Nov 2009 at 11:45pm
I am new to this as well. I had the surgery 18 days ago. I am feeling real well. I am slowely starting to eat small bites. My MD says I will be back to normal meals in 6 weeks. Is that about right. I sometimes have a fear in the evening about getting sick due to the facts that was when I would normally get sick. How did you get past this small fear factor. I am a firefighter in the US and I go back to work in 2 weeks. Should I have fear about this and will my life get back to normal. I just checking to see that I'm not alone in a little fear of it coming back. Thanks for the site. It helps!!!!
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chrisrob
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Quote chrisrob Replybullet Posted: 21 Nov 2009 at 7:18am
Hi Jerry and glad you found us.

I'm guessing you had the full laparoscopic Nissen fundoplication? And you're now totally free from meds?

In my own case, I was fine after a few days and back to a full exercise regime within a few weeks. That was 9 months ago and I've not looked back. I eat normally and haven't needed any antacid or anti-emetic drugs since.
I haven't been sick until about three weeks ago when I had either eaten something or picked up a bug; it wasn't reflux.

If my case is anything to go by, you should have nothing to worry about. However for a few weeks just be careful with the physical exercise so you don't pull the interior stitches apart. I notice your job cam be physically demanding but by the time you return to work, it'll be about 5 weeks after your op? I guess there shouldn't be anything to worry about by then. I was back to cycling within that time and cycle 24 miles every day before breakfast now.

All the best

Chris

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