janelouise

Dear Mdlala - I hope you make a speedy recovery. I completely understand your decision, and I will be following with a removal as soon as my ulcers have healed. It is a little daunting facing life without the band, but as you rightly say, lessons have been learned. I am looking forward to being able to eat healthy food again with out the problems we faced with the band. It works for some and not others. I have managed to keep 40lbs off so not a disaster by any means. When you feel better do let me know what eating plan you are going to follow? I have a mind to do Weight Watchers online! Anyway, brave decision and the right decision get well soon J

Following an earlier post where I asked if any band patients had experienced fibrous stricture - where you experience pain before eating, whilst eating and after eating! This went on for 3.5 years and I was told it was because the band was too tight. The tightest I ever managed was 3.5cc - anymore and I couldn't swallow. At my last appointment with my surgeon I stood my ground and said take all the fill out. He suspects there is fibrous stricture where the band touched the stomach wall and this has reacted to the band. Now the band is empty I still feel some constriction and I still get pain although not continuous( as when the band had 1cc in) when I eat and after. I live in the UK. At my pre-surgery weight, my BMI and other related conditions meant that I met the NICE (National Institute for Clinical Excellence) criteria for NHS funded surgery - however they refused to do this. So I borrowed money and had the band fitted. I now learn that the NHS will not help me with any problems relating to band surgery - even though my surgeon was also doing some NHS bands at the time. So here is the dilemma - I need an investigation and probably band removal and I will have to pay for this myself. So do I just try and find a way of getting the band removed privately and not bother getting the camera diagnosis confirming what everyone suspects? I really cannot afford any of this so it seems pointless to pay for two procedures..... my GP also advised me to think carefully about these options as her opinion is that it should come out. She said at 5 years I was one of the longest banded patients at their practice and she suspects that banding is soon going to be outdated. Has anyone experience of using private services provided by NHS hospitals rather than good old Spire and similar private hospitals?- I read something in the paper about the NHS going down this route at the weekend. It appears they trying to raise revenues by offering private work - makes me cross though as it seems at odds with the basic ethos of the NHS. Anyway enough rambling - I would love to hear from anyone who has had their band removed or with any advice or thoughts you would like to offer! Thanks Jane

Sorry to hear you are suffering Mdlala. I am now taking medications 4 x day to coat the ulcers, hopefully enabling them to heal. I have been in trouble for years with this and have only now gotten to the bottom of the problem. It has also been suggested that I may have a fungal infection and that may also require some medication. Fungal infections are not that uncommon apparently (says my surgeon) I do not want to be in any more pain, nor do I want to be taking wretched medication all the time so will be saving up to get it removed. Probably in the region of £4000. I have no fill at present and there still appears to be restriction and I think this is due to the band sometimes absorbing Fluid but also from the irritation caused by the ulcers. Try and get some investigative work done if you can. Also make sure you wash out your pouch before bed so that no food ends up laying above the port. And JACK thanks for the kind words. It isn't an easy journey and I know many people on here have encountered problems. I have kept off just over 40lbs - my best weight loss was 46lbs so not too bad all things considered. Of course I worry that having it removed will be 'dangerous' for me, but I also worry that I could be doing untold damage to my oesophagus by letting this carry on further. Will post an update soon.

Endoscopy done today! I have a group of ulcers about an inch (25mm) in length from the lower oesophagus to the cardia and a hiatus hernia :-( The ulcers explain the chronic pain I have suffered over the last 4 years. The omeprozole was not helping and that was because it was not a total reflux issue. The consultant thinks the ulceration is is due in part to stasis of food sitting in the oesophagus. And this is due to tight band and also not eating small/regular meals..... Apparently it will take a couple of months to heal the ulcers and I am now taking sucralfate 1gm x 4 times per day and also back on omeprozole Not sure what the moral of this story is but I would advise anyone suffering long term pain at any time of day to get it checked out if you can. Bizarrely the band is ok, empty but no stricture evident. It is staying empty for some time until I feel better and can sleep through the night with out getting up to drink gaviscon.

>trying2slim Oh dear! Sorry to hear your news. Wishing you speedy treatment and recovery. I am still waiting to hear if my GP recommended me for the endoscopy. J

I hope so too - do let me know how you go? I have sent a letter to my GP asking for the endoscopy x

Oh goodness - I think the sooner we both get a correct diagnosis the better! My GP is on holiday for the next week so waiting to request choose and book for an endoscopy and see if they accept or reject my request. Still drinking gaviscon but not as much thankfully. I joined weight watchers as I wanted the online food diary to keep a track of what I was eating and since I had my band emptied I have lost 4kgs.... but I have friends and family also doing this as well so lots of support. I would add that I can now eat healthy stuff - lots of vegetables and fruit and am considering going vegetarian at least 3 days a week. Onwards and upwards - I am sure we will get to the bottom of theses problems - we just have to wait for everyone else to pay attention!

I totally agree - after 5 years this has helped me address eating issues too. In a strange way I have also come to the conclusion that whilst the band makes you eat slower which is so important, and also address the amount you eat it actually promotes very poor eating habits if you have it adjusted wrong. And how many 'bandsters' have their band adjusted to the optimum I wonder? Since having my band emptied I have lost 3kgs in 6 weeks by following weight watchers online!. I ate my first apple in 5 years and it was a joy and I am also eating more vegetables and love it! I am now considering more vegetarian meals, perhaps 3 or 4 nights a week and have requested some veggie cookbooks as birthday presents :-). Re: funding to get an endoscopy diagnosis. I received some more information about requesting this. I would need my GP to request an endoscopy using the 'choose and book' system. This would need an authorisation from the PCT to fund it and that is not guaranteed. So I will go back and ask for the request to be set in motion. I also have a nagging concern in the back of my mind that whilst we are all assuming this stricture as being the cause of the esophageal pain it may not be... so if I can get this endoscopy done on the NHS that would be very helpful. The bigger decision about the band would follow on from this diagnosis. But after sleeping on it I am pretty certain I want it taking out now. Please keep in contact - it is so reassuring to chat with someone experiencing similar concerns J x

Hello 'trying2slim' - good thought. I suspect it will be the post code lottery. The fact that our local main hospital is setting up to do their own private work makes me a bit despondent... but I need to investigate further. The only good thing about that is they cannot possibly charge as much as the other private hospital groups!

Hello Highland NHS = National Health Service in the UK

In May 2007 I had my Mid-Band fitted. The first 2 years were taken up with trying to find the ideal band fill. I have never 'needed' much and the highest fill was only 2.25ml. I have yo-yoed up and down and for the last 12 months have been at 1.5ml. For the last 4 years I have suffered from what I thought was indigestion and it has become progressively worse. I started taking gaviscon but no help. The indigestion can be when I am late for a meal, before eating, whilst I am eating and after and also at totally random times - especially annoying through the wee small hours! I was taking omeprozole but that didn't really seem to work all the time. I am now lugging liquid gaviscon - and getting through 500ml (1pint) every 5 days.... and it never goes away. Over the last few years my consultant did not seem to take this particularly seriously and was always micro managing my diet when I had appointments. Perhaps I did not kick up enough fuss, but that is not my way, I would rather try and explain the negative impact this was having on my general health as well as weight loss. Two years agoI had second opinion and a barium xray and the band was appeared to be in position and working well. I do not have a hiatus hernia. Today I was back with my surgeon to explain I cannot cope with this any more ad that I want the band emptied. Again he tried to steer the conversation to diet but I managed to stand my ground. He does not believe it is 'indigestion' that is acid reflux coming up from the stomach, he said it could be a fungal infection in the oesophagus ( !?!) or a reaction from my body to the band creating a FIBROUS STRICTURE between the silicone of the band and the stomach wall. The band is empty but when I drank the obligatory glass of Water afterwards to see how the flow felt I could still feel some constriction :-( I will need to have a barium x-ray and probably an endoscopy if it has not settled down in the next two weeks. He said there is always a risk of this scenario ( affecting 0.05% of all band patients) and he has had 3 patients who have suffered this. Two sufferers have had their band removed and one managed to carry on after some surgical adjustment to it. If there is anyone out there who recognises some of my story, or who has experienced FIBROUS STRICTURE I would welcome your comments please? Thanks

Thank you all for your suggestions! And Den sorry for jumping on the end of your original post but thought it was better to keep this thread 'together'. Den did you manage to resolve this? I am off to see the consultant on the 30th and will report back with his comments! ps I did have a barium x-ray a year or so ago and my band appeared fine - although the port has flipped to a funny angle. hey ho! Thanks to you all xxxx

I am 4 years in and have been struggling with acid reflux and irritation from reflux for 3.5 years. I have taken antacids in tablet and now by necking gaviscon from 500ml bottles. I stop eating solids and revert to liquids when it is at its fiercest, I have taken prescribed drugs to reduce acid production but it rarely goes away for more than a day or so. I have had my band fill reduced but to no avail. I eat small, I eat sensibly and I still get this before during and after meals, when I am due a meal and most annoyingly at night (normally 3am) and heaven forbid I get a cold or fever as the band closes even tighter - all this at 1.5ml I have decided to have the band emptied and just be nice to my poor body for a while. It was never meant to be like this and my consultant seems to think it is my fault! I suspect that many consultants are still learning about some of the stranger side effects of this contraption hence the exceedingly unhelpful comments. At the end of the day this irritation or whatever it is is dragging me down and I really cannot take another week of this discomfort. I would love to know if others have experienced this and what they did to relieve the symptons please?