Barrett's Oesophagus
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Quill
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Quote Quill Replybullet Posted: 02 May 2008 at 10:45am

OK please let me have your contact details. For ease please include Chris's in the same message and I will call you both to see what can be arranged when and where.

We can then continue this discussion 'off line'
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chrisrob
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Quote chrisrob Replybullet Posted: 02 May 2008 at 10:54am
Hi Charles
My number is 07771 567009 or my email chris@chrisrob.co.uk
Chris
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catsmum1
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Quote catsmum1 Replybullet Posted: 01 Aug 2009 at 7:02pm
How far have you got with meeting up with people around the Southampton area? I am newly diagnosed and could really do with some support from people who are going through the same experiences. My Barretts isn't under control at all and I am having all sorts of side-effects (I least I think they are) from the PPI's - in fact I feel a lot worse than before. My GP doesn't seem to know a lot about the condition. After my gastroscopy (confirmed Barretts but no dysplasia)  I haven't been referred to a specialist (isn't that a bit strange?)  and so have decided to self-fund and find the best and most sympathetic consultant in Southampton or Salisbury (suggestions very welcome!) - but what I really need is to chat with others in the same boat over a cup of something non-irritant!  Would love to hear from you.Confused
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Quote chrisrob Replybullet Posted: 02 Aug 2009 at 7:28am
Hi Catsmum,

Pleased to say the Southampton support group is established and thriving.
An account of the inaugural meeting is posted here: http://www.barrettscampaign.org.uk/forum/forum_posts.asp?TID=242
I'll send you a copy of the minutes of the subsequent committee meeting by Private Message later (when I'm on my other computer that has that file on it) so you can see what we have planned.

Chris
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Quote chrisrob Replybullet Posted: 02 Aug 2009 at 9:32am
Hi again,

Have just PM'd you the minutes refered to above.

It does seem strange your GP won't refer you to a specialist. (Although they do have to be wary of their budgetary constraints.) You shouldn't have to self-fund.

What dose PPI are you on presently? What happens if you don't take them?
With me, if I didn't take my meds, I suffered from the heartburn from the acid reflux and the cough. Taking  a high dose of PPIs produced many side effects amongst which were the asthma-like symptoms. After my anti-reflux op, I felt much fitter and returned to cycling which I'd been unable to do for over a year.

You do need to discuss these matters with a doctor. I'd suggest seeing your GP again to ask these questions and, if he can't answer them, request a referal. Don't know your area but Southampton General Hospital has a great team.

Chris

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Quote victor1 Replybullet Posted: 02 Aug 2009 at 9:37pm
Dear Jackie,
                     I was diagnosed, with barretts appr 2 months ago. I am lucky I do not suffer any major symptons, and have to have another endoscopy in 2 years time.(see my original posting).I live  in the Winchester area,and as Chrisrob says I think Radio Solent could cover this subject ,(they are very good at this type of thing) I dont get involved with type of site etc normally, but I find it very  helpful.( I am getting too old for all this hi tech stuff !).
                                      Victor
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Quill
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Quote Quill Replybullet Posted: 03 Aug 2009 at 9:19am

Hi Catsmum and welcome to our ever growing 'throng'. Yes as Chris has told you we have recently launched a Wessex Group and are hoping to get some events for the benefit of those in the area off the ground to help support the group, raise awareness and profile and funds for a bit of kit needed by Southampton General Hospital as well as for the movement overall to raise awareness nationally, as well as locally, help support sufferers and those nearest and dearest to them, and to fund much needed research for early detection, treatment and cure. So as you can see there are quite a few things on our 'shopping list'. I live in Eastleigh and am currently under Winchester Hospital although I have been meaning to get my GP to refer me to Dr Patel at Southampton - who looks after Chris & Jackie. If you have read through any of the forum pages contributed to by newly diagnosed sufferers you will see that, as with most of us, the first stage is initial shock and ‘is it going to kill me’, second is the aftershock of finding more than is good for you from the internet the third stage is finding others like yourself and the fourth stage is realising that at least you know and can now be regularly monitored to make sure it isn't getting worse or if it is for action to be taken to 'nip it in the bud'. For every one of us who have been diagnosed there are countless others out there who do not know and, sadly, some find out much too late when they then have OC and pass away all too soon thereafter. Take strength and comfort from the fact and the realisation that you are aware and able to do something about it and perhaps channel your frustration and energy into trying to ensure that others can benefit as you will. Welcome to the Barrett’s Support Group. Quill (alias Charles)

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Quote susan333 Replybullet Posted: 03 Aug 2009 at 8:20pm
Hi Quill
How true the four stages you mention are! I have gone through all four, lost about a stone through worry, and now pleased to say I am steadily putting the weight back on, as, only being 8 stone, didnt need to loose any to help my condition. I feel so much better now I have accepted my condition and learnt how to control it.
All the best to everyone.
Sue
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Quill
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Quote Quill Replybullet Posted: 04 Aug 2009 at 9:47am

HI Sue - Indeed as when dealing with many personal issues 'denial' is a BIG 'enemy'! Acceptance is 'empowerment'. The creation of this site and this 'forum' alone has been a great success. It somehow seems easier to vent one's spleen and first share with faceless but empathetic 'listeners'. The next stage is to meet others similarly affected, hopefully, in a regional group or if none to try and set one up. We need to reach out to so many people to get so many messages across. It is daunting at first to think how to go about this but with help and encouragement - and there are lots of us who are prepared to give as much as we can - the way to achieve this is part of stage four. First there must be an acceptance and then I suppose people will generally fall into a number of camps. In my business the trainers tell you that a successful organisation is made up of 'finders', 'minders' and 'grinders' and you need all of these characters to 'move on'. So the idea is to think which category you fit into and try to meet up with like minded people who, hopefully can bring the other 'skills' to the table as each person will be able to bring something to the table but will also wish to tie up with people who can help satisfy their own needs thus enabling them take something away that gives them either strength, encouragement or comfort  - or perhaps all three - depending on who they are and at what stage they may then be at. Be it meeting up for a coffee and a chat or something more ambitious it all counts. Whilst I live in Eastleigh I work in Basingstoke and if anyone wanted to meet up for a chat I would be more than happy to do so. Quill

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Quote susan333 Replybullet Posted: 04 Aug 2009 at 8:37pm
Hi Quill
Thanks for your thoughts. I am off on holiday tomorrow, to Wales, hoping for better weather!
All the best to everyone. Will miss my nightly dose on the site.
Sue
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