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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=229
Printed Date: 10 Dec 2019 at 6:32am


Topic: Newbie
Posted By: RichardP
Subject: Newbie
Date Posted: 02 Jun 2009 at 9:04pm
Hi,
 
My name is Richard and I was diagnosed with Barretts back in October.
 
Firstly I must say want a fantastic website and forum. I have found it a great source of information and comfort to some extent. I have read a number of comments saying we are 'the lucky ones as we know we have this condition' and this has been quite enlightening and given me a different way to look at the condition (glass half full rather than half empty). I must admit however that there is rarely a day that goes by without thinking about Barretts and the what if's.
 
I am 33 and started experiencing problems when I was 29. I experienced symptoms of occasional dizziness, feeling lathargic, a bloating and discomfort just under my ribs and on rare occassions heartburn usually only when bending or lying down.
 
After a visit to my GP acid reflux was suspected and an endoscopy was arranged and the presence of GORD was confirmed. I was prescribed 30mg of Lansoprazole daily to control the acid. These appeared to control some of my symptoms but had side effects of their own.
 
Over the course of the last 3 years the dose was reduced to 15mg daily and this still appeared to control some of the symptoms.
 
The fact I didn't get regular heartburn from the outset has always been a concern for me as I have had to rely on other symptoms to tell me if I have too much acid. Interestingly since being on PPI's if I miss a dose I do now tend to get bad heartburn.
 
A follow up endoscopy late last year showed the GORD was still present and the consultant also noted 1cm of Barretts which was confirmed by biopsy, but thankfully no dysplasia.
I have since increased my Lansoprazole to 15mg twice daily.
 
I have had manometry and PH tests a couple of weeks ago and have seen a consultant today to discuss surgery (Nissen fundoplication).
 
Given the risks (although minimal) associated with Barretts I want to take a proactive approach and tackle this head on. Although I appreciate the surgery will not cure the Barretts I am working on the basis that it could potentially help limit any progression and hopefully get me off the PPI's which would be nice. I do not relish the idea of taking the tablets for the rest of my life.
 
I am very keen to hear about others experiences of the surgery particularly any side effects. I have read about ChrisRob's experience and will be picking his brains shortly if he doesn't mind Smile
   
Hopefully one day we will all be on this forum discussing the Barretts we used to have and how we are glad to be shot of it.
 
Sorry for the essay, just want to share my experience.
 
Richard.



Replies:
Posted By: chrisrob
Date Posted: 03 Jun 2009 at 9:16am
Hi Richard, glad to have you on board but sorry for the "fare" you've had to pay.

You're welcome to "pick my brains" if you can find them. LOL

All the best,

Chris


Posted By: RichardP
Date Posted: 24 Jun 2009 at 12:41pm
Right Chris brain picking time Smile
 
I have a few questions regarding the fundo op so I'll just shout them out. If you (or indeed anyone else) can offer some feedback it would be most appreciated.  
 
  • Did/do you suffer any pain from the surgery either immediately after or now?
  • Can you feel the wrap or a difference in your stomach? As we all know the stomach is quite sensitive and I wonder about if this change in anatomy can be felt.  
  • Are there any side effects of the surgery? I understand trapped wind can be a problem along with being unable to eat much, but are there any other problems? 
  • Can I ask which hospital your procedure was performed at?
 
I am still waiting for my op date but it is expected to be some time in August.
 
I will keep you posted.
 
Thanks,
 
Richard.


Posted By: chrisrob
Date Posted: 24 Jun 2009 at 7:45pm
Hi Richard, pleased to help.

1. No pain. Other than a bit of a bruised feeling to my stomach muscles for which I was prescribed soluble paracetamol but didn't really need. 3 months later and still no pain. (I somehow managed to come off my bike a couple of weeks ago and sprained my ankle: now that's painful!)

2. Can't feel any difference to my stomach. I already knew I would feel full sooner as the stomach's volume's reduced and that initially I'd need to eat "mushy" food - as the wrap may cause inflammation making the lower sphincter narrower than normal. I read somewhere to think of it like taking all your food through a straw.
However, I found I was able to eat more solid food within a few days. I lost 20lbs but gradually found I was eating more and now seem to be eating normal sized meals and able to eat anything. AND NO MEDS!

3. Side effects: Can't (usually) burp - though have managed a couple of gentle ones. Instead, if I've had a fizzy drink or taken too much liquid too quickly, I get what I can best describe as a noisy hiccup. You do need to eat slowly and chew well but you can get a bit of wind!

4. My operation was performed at Southampton General Hospital by a young newly qualified surgeon, David Hou, to whom I owe an apology. I had been worried by his apparent inexperience but the operation was marvellous.

Don't know whereabouts you're situated? Hope your team's as good as mine.
Hope you get your date soon. I had to keep nagging to get mine.
Let us know how you get on.

All the best

Chris


Posted By: chrisrob
Date Posted: 26 Jun 2009 at 1:51pm
Don't know whether you've received immediate post op dietary advice?

Mine was mainly to have liquids and soft foods: mushy weetabix or porridge for breakfast, soup, scrambled egg, mashed potato etc are fine. Chicken in sauce or gravy. Gradually adding more solid food as you feel able.
I was also advised no bread or red meat until after the post op review in 4 to 6 weeks. Actually immediately after the op, I was told that review would be 6 to 8 weeks but I still haven't had it; it's scheduled for mid July (4 months post op!) but I ma eating red meat and bread. (In fact, looking at a diary I kept, I had a (half) sandwich after just 2 weeks - and I was on my bike after 2 weeks.

I have written my story on my website (which may be found via my member's profile page), mainly in response to another Chris Robinson, who is American, who has written his story ( http://nissenfundoplication.com/default.aspx - http://nissenfundoplication.com/default.aspx ). His fundo didn't  go as well as mine.

Not everyone's operation goes as well as mine did. This site: http://www.geocities.com/lapro_fundo/ - http://www.geocities.com/lapro_fundo/ has some horror stories but I imagine people are more likely to write of their bad experiences than if things went smoothly.

But don't be scared off: it really is worth it. Barrett's may form because of acid reflux. Whereas PPI's reduce the acid, fundoplication removes the reflux. Neither cures the Barrett's but helps remove the environment that caused its development.

Chris


Posted By: RichardP
Date Posted: 15 Jul 2009 at 11:56am

Hi Chris,

Have only just seen yours posts as I have been away for a while. Many thanks for answering the questions I had.
 
The surgeon I have is apparently very experienced and specialises in the fundo procedure and has completed 'hundreds' of them which gives me confidence.  
 
Seeing AndyR's post regarding the Linx device being tested in the US I am wondering if I should wait to see if it is a viable alternative before having the fundo. I like the idea of a procedure that appears a little more simplistic to apply and does not involve remodelling the stomach. I suspect however it could be a number of years before it is proven and available in the UK.
 
Decisions, decisions!


Posted By: AndyR
Date Posted: 15 Jul 2009 at 4:10pm
Hi Richard,
 
According to what I have read it is in a "Pivotal trail phase", but I am not sure how long that will take and what happens after that. The encoraging news was that people in the trial seemed to tolerate it well and get of the PPI's.
 
Even in the US it could be years before it is available. I just thought it was promising news that I would share with everyone.
 
I am also not sure that this procedure will be available to anyone that has had the fundo, I seem to remember reading that somewhere. It also makes sense as they place the magnetic band around the LES.
 
Regards,
 
Andy


Posted By: chrisrob
Date Posted: 16 Jul 2009 at 7:28am
Hi Richard & Andy,

There have been clips before placed around the lower oesophageal sphincter as an attempt to reduce reflux in a seemingly simpler operation. Perhaps the magnets idea will provide a better working solution at some future date but I, personally, would go for the fundo if they're going to invade your insides laparoscopically any way.

Of course, I may have been lucky my op went so well.

Chris


Posted By: AndyR
Date Posted: 16 Jul 2009 at 4:12pm
Hi Chris,

I agree, there have been a bunch of other surgeries that have tried to solve the reflux issue by tightening the LES in one way or another. Most of them have had limited success over the long haul.

I also agree that overall the lap fundo is currently the way to go, and generally works well.

Hopefully the future will give us more choices and newer technologies.

Regards,

Andy



Posted By: RichardP
Date Posted: 28 Jul 2009 at 6:11pm
Right I am doing it! Fundo op is on the 6th August!!!
 
I'll let you all know how it goes.


Posted By: AndyR
Date Posted: 28 Jul 2009 at 6:27pm
Hi Richard,
 
Great news, I hope eveything goes well and that you can get off the PPI's.
I am assuming that you are having it done laproscopically, right?
 
Keep us posted with your progress.
 
This may be something that I need to do in the future, so I am very interested.
 
Regards,
 
Andy


Posted By: chrisrob
Date Posted: 28 Jul 2009 at 7:11pm
Hi Richard

All the best for the 6th.
I hope yours goes as smoothly as mine.
Will be thinking of you.

Chris


Posted By: RichardP
Date Posted: 29 Jul 2009 at 12:02pm
Thanks for your words of support.
 
Yes have opted for this to be done laproscopically, although I understand there are some instances where it may need to be converted to an open operation. Fingers crossed this isn't the case with mine.
 
Richard


Posted By: twix38
Date Posted: 29 Jul 2009 at 5:46pm
Hello,

Regarding Hiatus Hernia op...........

Are you aware of the endoscopic procedure TIF using instrument called Esophyx

http://www.endogastricsolutions.com/

Performed in UK by

Dr Chris Fraser MB ChB MD FRCP

Consultant Gastroenterologist and Specialist Endoscopist

The Wolfson Unit for Endoscopy

St Mark's Hospital

Watford Road, Harrow

Middlesex, HA1 3UJ

United Kingdom

Email: chris.fraser@imperial.ac.uk



Posted By: chrisrob
Date Posted: 04 Aug 2009 at 12:27pm
Hi Richard.

Don't know whether you'd be in a position to read emails etc. tomorrow.

All the best for Thursday. We'll be thinking of you.

Chris


Posted By: AndyR
Date Posted: 04 Aug 2009 at 8:18pm
Hi Richard,
 
I also wanted to wish you all the best with op and a speedy recovery.
 
Regards,

Andy


Posted By: Quill
Date Posted: 05 Aug 2009 at 8:47am
Hi Guys
Have only just come across this active string and just wanted to wish Richard all the best for tomorrow. I am sure you will all keep us posted.
Kind regards
Quill


Posted By: RichardP
Date Posted: 05 Aug 2009 at 10:01am
Thanks all for your support, much appreciated.
 
A very small part of me is looking forward to having the procedure to see the benefits it will bring. I just hope its all worth it in the end.
 
I will update you on the outcome as soon as I can.
 
Regards,
 
Richard.


Posted By: RichardP
Date Posted: 14 Aug 2009 at 12:48pm

Hi all,

The op went well and appears to have been a success. I am not taking any PPI's and have had no heartburn or reflux.
The op has taken slightly more out of me than I had expected, been feeling quite weak and very tired for the last week but I suppose that is to be expected from any op.
 
Hospital stay was just over 24hrs.
 
I was in quite some discomfort for a few days after, the majority of which was pain from my ab muscles where they had been stretched and interestingly from one of my lower ribs. Because of my slim build quite alot of carbon dioxide had to be pumped into my abdomen to get a good view which resulted in me being stretched and some of the muscles being torn. It felt as if I had done a thousand sit ups all in one go!
I have also had some pain from a cumulation of carbon dioxide in my chest and shoulders which is common after key hole surgery.
It was also uncomfortable to take a deep breath or cough for a few days as my diaphram felt tight, but this is now easing.
 
Whilst in there the surgeon found I also had a slight hiatus hernia which has now been corrected.
I must say my surgeon and the team that looked after me were fantastic and gave me great confidence.
 
I have had no problems with eating and drinking and have gradually started to move on from the 'soft' diet. I have been very careful to chew my food well and eat slowly. I had thought this would be difficult as I have always been used to bolting my food and eating on the go, however the new way of eating appears to have come naturally. 
I could be mistaken for a pregnant woman as I am craving a nice large steak and chips which I know is a few weeks away yet.
 
Other than the sore muscles I have had no significant pain from my stomach only really from trapped wind and the sensation of cramp in my oesophagus as if it is trying to release the gas. I have been aware of alot of strange grumbling and gurpling noises from my stomach and intestines, all of which I am sure will settle down with time.
 
Riding in the car is currently a strange experience as everytime I go over a bump it feels as if my insides jiggle about! This is most probably due to the stomach, spleen and oesophagus having to be freed up from the surrounding tissue to complete the surgery and again I expect this will change once all is healed.
  
Would I do it again? Yes, even at this early stage whilst still feeling a bit tender I feel it has been a positive step. Not having to take PPI's and the absence of reflux is great, but also the peace of mind that acid is no longer attacking my oesophagus is worth it alone.
 
I must say a big thank you to you for the words of support, but particularly to ChrisRob for openly sharing his experience of this op and answering my many questions as it enabled me to go into this knowing what to expect.
 
I know a few people are concidering this procedure so please feel free to ask if you have any questions.
 
Regards,
 
Richard. 


Posted By: twix38
Date Posted: 14 Aug 2009 at 1:40pm
Congrats Richard all sounds very good and a job well done.

I also do not want to be on PPI's for life and wondered about doing the same op or as I posted above the TIF procedure, perhaps.

However, was it your Doctor who suggested doing the Nissen Fundoplication op or yourself that forced the issue, as most people have to make do with medication unless of medical necessity or pills not working etc??

Was it on the NHS?

What was the reasoning behind undertaking this op? i'e was it only a wish to get off PPI's or needed for other reasons/health issues?

I am 48 years old and have 2cm Barratts - non dysplastic and wish to get my Hiatus Hernia fixed, off PPI's and then address the Barratts, probably with Barrx Radiofrequency and maybe then only if progresses beyond non dysplastic until there are more statistics to recommend for non dysplastic Barratts.

Many thanks


Posted By: chrisrob
Date Posted: 14 Aug 2009 at 1:57pm
Hi Richard,

Good news about the op. Your insides may feel bruised for a little while and you shouldn't try anything too strenuous for a bit but you will get back to normal.

All the best,

Chris

Hi Twix,

I'm not answering for Richard, I'll let him tell his own story.
I had the hiatus hernia repair and fundo op on NHS without problem. I asked for it as I was having a problem with the side effects of the PPIs. My endoscopist said OK and he wrote to the surgeon.
You will need to discuss the possibilities with you GP and consultant and see what they say.

As regards the HALO/Barrx RFT, you're not likely to get that done unless you have High Grade Dysplasia with a slight possibility for Low Grade. As with all treatments, endoscopic or otherwise, there is always a risk attached. Since the chances of your Barrett's moving through LGD to HGD are small, is it worth the risk? Your regular (2 or 3 yearly?) scope should show any changes in time to have RadioFrequency Ablation if necessary.

Chris


Posted By: twix38
Date Posted: 14 Aug 2009 at 2:24pm
thanks chris,

I asked my Doctor about fundo over 10 years ago and was told to treat reflux with medication as not worth the risk. Back then I didn't have (or didn't know I had Barratts and was not on PPI's). I wanted to rectify the Hiatus Hernia rather than treat the symptoms for the rest of my life, knowing it could get worse but not better.

I will enquire at my Doctors again.

Re Barrx RFT. I'm not looking to get that done yet with non dysplastic Barratts, though I note that quite a few in the USA have had it done with non dysplastic barratts, though as I stated  i'd want to see more data and for it to be professionally recommended for non dysplastic barratts first, which it currently is not, so no worries there.

Thanks for info


Posted By: Quill
Date Posted: 14 Aug 2009 at 2:43pm
This is great news Richard. I hope that your recovery continues apace.
Kind regards
Quill


Posted By: RichardP
Date Posted: 14 Aug 2009 at 4:37pm

Hi Twix,

It was my Gastroenterologist that referred me for surgery. At the point I was referred my Barretts was only 1cm. The effectiveness of my PPI (Lansoprazole) appeared to reducing and I was experiencing some side effects. The main driver however was that I wanted to take a proactive approach and reduce my risks with regards to the Barretts. I didn't like the idea of the what and see approach that seems to be regularly recommended.
Another reason for having the op was to be in a position whereby if a cure for Barretts is developed (I am sure we all have our fingers crossed here) then I could have it safe in the knowledge that the original cause of the problem had been fixed.
 
This initially began on an NHS basis. I had the manometry and 24hr PH test and met with a surgeon to discuss the options. To be able to have the operation the results of the manometry and PH tests need to achieve a certain level to show there is a need for the operation. He advised me that the most successful procedure is the full Nissen Fundoplication, you can have a partial wrap but this is less effective and mostly used as a fall back if there are problems with a full wrap.
As we know this op is not a cure for Barretts but my surgeon agreed that logically if acid is the cause of the problem then if we can limit or remove it from the equation then it may possibly reduce the risk of the Barretts progressing. 
 
I had done some research before I met the surgeon and asked about the plicator procedure and although this is more straightforward I understand the success rate is lower and the repair may not last as long.
 
My surgeon is very experienced in the Nissen fundo and has been doing them since 1988 which gave me great confidence in his ability.
 
I found out that the surgeon also does private work and as I am fortunate to have healthcare insurance with my job I went down this route. Had I not I would have been waiting a further 3 months. Had the NHS route been the only option I would still have gone ahead with this procedure.
 
Hope this answers your questions. Any more please let me know.
 
Regards,
 
Richard. 


Posted By: twix38
Date Posted: 14 Aug 2009 at 4:54pm
thanks Richard,

I will see what my Doc says about a fundo.

I gather you could still have gone ahead under NHS with just a 3 month more wait, but yours may be based on PPI effectiveness reducing and side effects. I don't have either right now that I am aware of.

I have the same view as you, but got talked out of it 10+ years ago. Probably right for then, but maybe if I had insisted I would never have got Barratts. My thinking back then was it could only get worse over a lifetime and I was then in my 30's. I had not even heard of Barratts back then. I should have perhaps told my Doctor he was wrong (in my case as it turns out) and got it done ;-)

btw, TIF is a brand new procedure, but don't know how it will pan out. Had good indications from USA


Posted By: AndyR
Date Posted: 14 Aug 2009 at 5:02pm
Hi Richard,

I am very glad to hear that the op went so well and that you are recovering nicely. This gives me some perspective on what to expect should I decide to go for the fundo at some point. I am doing well on the meds and will continue with them for the moment.

Regards,

Andy


Posted By: Moggs
Date Posted: 14 Aug 2009 at 5:14pm
Hi Twix38
 
I had my routine 2 yearly gastroscopy in April this year. The result was my Barretts is now 7 cm but no dysplasia  this time although in the past I have got up to just between gade 1 & 2 - so the lanseprozole is working together with me watching what I eat & how much to keep the acid reflux at bay.
 
My consultant had good chat with me about a 6wks after the gastroscopy and advised me all the ins & outs of Barretts. This included advising it is not normally considered to have the op unless I get Dysplasia of 2 or more (i.e. heading towards the big 'c'. )
 
I do have bowel problems which he is sending me for a Barium X Ray next week just to be sure all is ok there (I had an endoscopy in April too but that can only see so far! & that showed Hemoroids only that end of my large intestine)  but this other x ray will look where the consultant can't . He thinks though that the problems are side effects of the Lanseprozpole and other medication I am on  together with it being a side line of Barretts! 
 
I am also sick  about once a week or so but I think this is me eating what my eyes see and not what my stomach can cope with!! in other words  my eyes are to big for my stomach  as mum used to say!!  LOL 
 
Any way let us know if you decide on the op and we'll be routing for you as we are for Richard. Smile
 
Moggs
 
  


Posted By: susan333
Date Posted: 14 Aug 2009 at 7:37pm
Hi Moggs
It is good to hear that your dysplasia disappeared, from being between grade 1 and 2, to having no dysplasia. I didnt realise this could happen, but really good news for you. Was this due to your medication?
All the best
Sue


Posted By: twix38
Date Posted: 15 Aug 2009 at 3:23am
Hello Moggs,

Thanks for your info.

I assume when Doctor did not recommend the op you are referring to Barrx RFT though using the "op" word made me wonder if you meant fundas op? If you mean Barrx RFT as I suspect then that fits in with what's said before as not recommended for non dysplastic and only perhaps LGD though certainly HGD. If you meant the fundas op, then could that have been due to your age as a significant factor, in not recommending?

Pleased to hear you are non dysplastic and echo the earlier question from Susan Humphrey about going from grade 1 or 2 back to non dysplastic assuming you have been on your PPI's that whole period? (I know prior to taking PPI's the dysplasia reading can be higher due to inflammation and can come down as this happened to me to. I was LGD then started my Omeprazole and next Gastroscopy I was non dysplastic, but I assume you have been on your PPI's all this time and had an improvement to non dysplastic. That's unusual isn't it?

Many thanks and I hope your other symptoms (sick etc) also improve.


Posted By: heidi
Date Posted: 27 Sep 2009 at 11:41am
I have got to have a Nissens redo,my first Nissens in October 2008 was unsuccessful and since then developed Barretts.I am still waiting for an operation date post seeing the consultant in June.My consultant is one of the 'best' in Fundo surgery so am quite optimistic.Just wish i did not have to have it redone,,,but i cannot go on with this suffering and want to eat normally again.Any advice welcome



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