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What to do?

Printed From: Barrett's Support Forum
Category: Barrett's Support Forum
Forum Name: Barrett's Oesophagus
Forum Discription: Your Questions about Barrett's Oesophagus
URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=176
Printed Date: 24áMayá2019 at 9:25pm


Topic: What to do?
Posted By: GillR
Subject: What to do?
Date Posted: 12áMará2009 at 7:10pm

Hi I don't know what to do. I was diagnosed with BE in July 2008 (on my birthday!). There are no cell changes. Current 'treatment'  is an endoscopy every two years. I have also had a 24hr PH test which showed no acid.  Because of that, fundoplication is not on offer.

I won't bother you will the hell the NHS have put me through in relation to the length of time between appointments/tests/results etc. But it has now been 16 months since this nightmare started.

I am taking Zoton orodispersable lansoprazole but can usually only take 1 per day (2 is max. dose) because I am also lactose intolerant and it contains lactose.

Since this started, I have not been able to eat much food at all. I have lost almost 6 stone (96 lbs) and am considered by the dietician to be malnourished. I suppose it goes without saying that my hair and nails are falling apart - I dread to think what problems are being stored up in relation to my bones.

Since the results of the PH test, the consultant (I have never seen the same one twice!) has suggested that to alleviate symptoms, I take Amitriptyline. I was on Sertraline for 7 years until all this started (for another medical problem) but cannot take it now because I get very severe (heart attack symptoms) and almost instant side effects. From what I have read, the tablets he is suggesting are likely to do the same.

Through all of this, I now have depression. I have no social life (who wants to go out for a meal with friends and eat just a bread roll?), I live on very little food, none of which has any enjoyment or 'look forward to' value and I have pain/discomfort/acid for a good part of every day. The days where I have no problems are very few and far between.

I have been offered a second opinion (which will no doubt take months to get) but what I really want is HELP. I need help to eat better and therefore improve my health and social life which should start to ease the depression. The consultant seems to miss that point all together - he is just looking at test results and has no suggestions on what can be done to improve things.

I have spent the last 16 months terrified for my life. The Grim Reaper is at my shoulder every hour of the day. This has come about simply because no-one has helped to alleviate my symptoms.

I am already doing all the pillows, no bending, not eating or drinking after 6pm kind of things.

Does anyone here have any advice on how I can improve my situation?  

Please excuse the lengthy post (especially since I have only just signed up!).

 




Replies:
Posted By: jcombs99
Date Posted: 12áMará2009 at 11:01pm
GILLR
   They have done a Upper GI (EGD)on you, BUT have they done a lower GI (COLON) on you and WHEN ???


Posted By: GillR
Date Posted: 13áMará2009 at 5:47am

There has been no lower GI done.  Should there be?



Posted By: chrisrob
Date Posted: 13áMará2009 at 9:02am
HI Gill,
Glad you found us and so sorry to hear of your problems.

It is unusual to have no stomach acid. This is the condition I have referred to in other posts called "hypochlorhydria" which occurs naturally quite rarely though can cause reflux itself. The condition is also artificially caused by PPIs.
The result is we do not absorb the minerals we need: calcium, iron, zinc, selenium etc.

I feel for you with the depression (though, fortunately, I wouldn't call myself a sufferer, I know some who have been through this). Sertraline is a particularly SSRI to come off and I assume your doctor is trying to help by moving you to the amitriptyline instead.
I think low selenium levels may be contributory to depression but check this out with your GP.

I didn't know lansoprazole contained lactose. Do you know if the other available PPIs (omeprazole, patoprazole) also contain it? Does Ranitidine?
You may find taking the lansoprazole in the morning and supplementing it with ranitidine in the evening helps? Discuss this with your GP.

I don't know what to suggest about your diet. Have you tried the weight boost drinks?

Sorry I'm not being much help but keep in there.

The good news is your Barrett's is being kept under surveillance: every two years is good. It's not going to kill you. If it is going to undergo dysplastic changes, they'll be seen and action (such as ablation therapy) will be taken.

All the best
Chris


Posted By: chrisrob
Date Posted: 13áMará2009 at 10:31am
Meant to add this link to my post; it's about selenium deficiency and depression:
http://www.ivillage.co.uk/health/comp/herb/articles/0,,181042_182159,00.html - http://www.ivillage.co.uk/health/comp/herb/articles/0,,181042_182159,00.html


Posted By: GillR
Date Posted: 13áMará2009 at 11:01am
Thanks for that Chris.
 
I suspect that the reason there was no acid during the test was that it was done during a relatively 'quiet' spell.  I actually wasn't in too much pain at the time (apart from the tube of course).  If they did it now (I've been in agony for the last few weeks) I'm sure they'd get an acid reading.
 
I came off the Sertraline (which I had been taking to help with ME rather than depression) over a year ago.  My GP offered me no help or advice whatsoever about the side effects of coming off it.  At the time, we did try another tablet but the side effects were just as bad so decided to do without.  I suspect long term use (7 years) may have altered my chemical balances so that now my body actually needs the chemicals.  However, it is certain that the BO and appalling 'treatment' I have received have contributed significantly.
 
It was acutally the consultant who prescribed the Amitriptyline.  He wants me to take it for pain.  Does this mean he thinks that the pain is all in my head, I wonder?  I am also concerned that it will be masking the pain rather than treating the problem which could be causing further damage.  But I'm not left with much choice.
 
He's told me that if these tablets don't do anything the only thing left is to get a second opinion which I feel will be more months of appointments and tests with nothing changing.  It's not that I don't believe the test results, I just want them to do something to help with the symptoms which have all but ruined my life.
 
Thanks for the info about selinium, it looks interesting.  Do other people taking PPIs usually take selinium as a supplement?
 
 


Posted By: chrisrob
Date Posted: 13áMará2009 at 11:16am
Hi again,
I have a couple of close friends with ME. I know one of them at least has been using SSRIs for his condition.
I also have a friend with Parkinson's (and was very involved with running a local branch of their society for a few years). I know many of them are prescribed Amitriptyline for depression caused by their condition.
It can also be used for pain control. Here is another link which may be helpful:
http://www.painconcern.org.uk/pages/page95.php - http://www.painconcern.org.uk/pages/page95.php

As for selenium supplements. I don't know of anyone taking any and I'm personally a bit sceptical usually of health food supplements which are often (I feel) over hyped and over priced. For most people, a healthy diet provides all the nutrients we need. I do get a craving for chocolate (which can indicate a need for selenium) and I do like brazil nuts which are a good natural source. I don't think supplements from a health food shop will harm you if you want to try but perhaps it would be better to discuss it with your GP?



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