my first banding

Hi everyone, hope you are all as well as you can be. I had my first banding on Wednesday and feel a bit grotty. Up until now I've been a cirhossis sufferer with minimum treatment other than twice yearly consultant appointments and loads of tablets daily. I'm experiencing the first invasive aspect of my illness and the banding (even though I've read posts on here about it) was pretty grim. Was diagnosed with dilated varicies in April, and had 4 done not the three I expected and I'm having some awful after effects. perminant hiccups, feeling sick, and was dissapointed a patient information leaflet wasnt given to me as to what to expect etc. Was told the banding would make my gastritus worse and I can't have the tablet to lower my portal pressure as my liver wouldnt cope with it. That was my GPs comment. I have been pretty much left to get on with my cirhossis. Whenever Im ill and go to to the doctors I just get told 'its due to your liver'. I am 45, teetotal and live in a rural area in Wales. Have to go back to have more banding in 6 weeks so it seems new varicies are developing all of the time . Gosh, I am feeling sorry for myself today considering there are many of you with such serious liver conditions. I really do feel Im being left to my own devices. Thank goodness for you all and although I dont post much I do read your advice and experiences.

20 Replies

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  • Hi Jules45, sorry to hear you are having such a rough time, reading your post above I wondered whether or not you have been prescribed Omeprazole. This is a tablet which reduces your stomach acid and stops the acid burning your damaged stomach lining and oesophagus. Before my husband was diagnosed he was having horrendous burning 'heartburn' (we thought) especially after eating acidic, citrus foods it would leave him bent double with pain and nauseous. Since diagnosis and going on omeprazole (and watching what he eats) he has never had that horrid sensation again.

    He had a massive bleed from his varices which is what brought his liver condition to light - he too is tee-total and already had advanced cirrhosis before he even really knew he was ill. You are right (sadly) in figuring out that varices do keep forming when you have portal hypertension. Between April 2012 and May 2014 my hubby has had 42 varices banded over 13 endoscopy procedures. His consultant went 'aggressive' on his and he hasn't needed banding since May of last year - he has his next one in July.

    Have you been referred to a liver specialist? With a diagnosis of cirrhosis you should be seeing one, even a referral to 'touch base' with a transplant unit wouldn't be out of order either. They may only keep an eye on you or may take over your care altogether which is what has happened in my hubby's case. Your cirrhosis needs to be monitored, you should be having an ultrasound every 6 months and regular blood tests to check on your liver, presence of fluids and to ensure you haven't developed any tumors etc.

    You sound very much in the same boat as my hubby, so, if you have any queries ask away, happy to provide guidance based on our own experiences - PM if you wish. We also have some post-banding advice leaflets if you need I could type out details. It seems unusual for them not to have provided one as some fairly serious complications can arise though what you are describing all seems fairly par for the course after banding.

    All the best, Katie :) x

  • Hi Jules45

    You haven't said whether your varices have actually bled and although you say you can not take the tablet to lower portal pressure you do not name what type of tablet it is?. Could it be one of the usually prescribed non selective beta blockers such as Carvedilol?

    If it is then I am surprised by what you say. I was diagnosed with varices a few months ago but they had not bled,touch wood (I think they were classified as Grade 2 ) and initially was told by the doctor who carried out the gastroscopy during which they were discoved , that they would need to be banded with a view to preventing bleeding. However when I subsequently saw the liver specialist who is looking after me he said that the current protocol is not to do banding but instead prescribe low doze Carvedilol (6.25 mg once or twice per day) because research had shown this probably provides a better outcome than banding (only talking about preventing first bleeds here). This is because it significantly decreases the pressure in the portal vein thereby making bleeding less likely. I have read the research papers and this all seems to be correct.

    My own GP who is also well up to date on these matters prescibed the medicine for me and when doing so told me it is tolerated well by most people even if they have liver disease .He also mentioned the only time it shouldn't be prescibed and taken is if the patient suffers from asthma ,bronchitis or emphysema or some sort of block or problem with the heart otherwise it is generally OK. It does need to be monitored though to make sure liver ,heart and other organs coping with it.

    If your varices haven't bled and you do not have one of the adverse condition that prevents carvedilol or a similar non selective beta blocker being prescibed then that really is most unfortunate . Personally I have had very few side effects and it seems to be working for me.

    I can also vouch for the Ameprozole that Katie has mentioned to you because she recomended it to me a short time ago to eliminate the gastitis and reflux etc that i also suffered from for a short time , and it worked like magic

    Hope you can get your problem sorted soon and those awful side effects eliminated.

    Regards

  • Thanks for your reply. My varicies werent bleeding thank goodness but my GP has ruled out any tablet for pressure even though I dont suffer from asthma etc. I have taken omeprazole for years and it has been a godsend doubling the dose. Perhaps when I eventually see my specialist at hospital I can ask why I cant have a drug that many liver patients take

    Best wishes

    julie

  • I've had banding before and been fine. Maybe it was just a bad experience. can I ask what meds you take? I just take omoprasale, and propanal.

  • Hi, I take two types of water tablets, (furosimide and spironalactane), omeprazole, morphine for pain, Vit B and Thiamine, a laxative solution, colecal (for osteoporosis), something to help me sleep and Fortisip liquid food. Is your propanal for internal pressure?

    Best wishes

    julie

  • Sorry to hear this. Are you attending a proper transplant clinic or hepatologist? Rather than dealing with your GP and maybe a Gastroenterologist.

    We were in this position for 4 and half years with a Gastro.

    In the end I asked for 2nd opinion at transplant unit.

    Consultant was horrified that no endoscopy had been performed to check for varices. 5 or six were carried out over the next few months banding each time. Was end stage within 5 months of getting 2nd opinion all gastro kept saying was " Your liver function tests are not too bad." ( have since found out this doesn't always correlate with the actual condition of your liver.

    Also his Alpha Feoto Protein was always "normal" and yet on explant the Liver contained over ten HCC (liver cancer). Way beyond the amount allowed to receive a TP so it actually worked in our favour. So I don't always go with test results push further.

    Good Luck

  • Hi, Im in the same situation you were in where I am only under Gastroenterologist and GP. My previous Gastro had a special interest in the liver but he has just left. Ive been in this situation for 4 and a half years which is since my liver first failed and Im not a very assertive person. The varicies were only picked up when I had a CT scan on my colon as I was having stomach problems then I was sent for endoscopy and here I am.

    Im going to be a bit more assertive thanks to the support I get on here.

    Thanks for your reply

    julie

  • Hi its not down to your gp to say your liver won't cope with blood lowering tabs to keep down portal pressure, that is down to your gastroenterolgist or heptologist hope you have a heptologist, I have cirrohiss and varices which needed banding as I did have massive GI bleed in 2013 which was nearly fatal, I have been on propranolol since then to keep blood down, and yes every time I go to gp with different ailments, always put down to liver, they have no right as they know very little about, now I don't tolerate them anymore, as have gone around with symptoms suffering mfrom something else but told by gp its liver disease, best to put your foot down demand you be sent for tests if your not happy as you know liver can change in a flash. Good luck. Annette

  • Hi Annette, no, not under a hepatologist which confuses me. Just gastroenterologist and Gp. I agree with you about the liver changing in a flash as it would explain the days when I can function and the days when everything feels wrong and the tiredness is extreme. Im sure people think Im lazy but noone except the patient of liver disease can understand the iextreme fatigue and aches and pain etc. I live alone, keep my house tidy and just make the most of good days which are getting few and far between.

    I am going to persist in asking for a portal pressure lowering tablet.

    Hope you are ok today

    julie

  • Yes fine thanks Julie

    I really do feel though that heptologist would be suitable for you as well as gastroenterolgist, heptologists are really the!liver experts, I just see my gastroenterolgist for endoscopys, I got propranolol because I did have massive GI bleed may be that's why they didn't give you any but push them for answers. Annette !!

  • Hi, did something positive and left a message with the stand in gastroenterologist's secretary to ask him tomorrow and come back to me regarding propranolol or similar. I agree with you about having a hepatologist as I was told 5 years ago about future transplant, nothing mentioned since. Also found out by accident that I have a gall bladder full of stones. My gastro knew, didnt tell me but the radiologist during an ultra sound told me assuming I knew! Told can't have gall bladder op as again "my liver wont cope"

    Best wishes

    julie

  • Hi Jules45. Like you, I am mid-40's, with varices and portal hypertension. They think my problems began with a case of diverticulitis, causing sepsis and a blood clot blocking my portal vein and the resultant pressure build up causing my varices. Thats the current thinking, but it does seem to change fairly frequently! The treatment, scans etc for my diverticulitis revealed an enlarged spleen and put them on the hunt for liver disease. My varices were banded earlier this year and my latest gastroscopy has, I think, revealed things are alright for the moment.

    Like Angse says, its really down to your Gastroenterologist to say whether your liver could cope with a beta-blocker or other tablet to reduce your portal pressure. Early on my consultant was fairly adament that I should take propranolol rather than band the varices. That said, a year later they've banded two varices and told me I should expect to be on the propranolol long term.

    The first couple of weeks after banding are generally uncomfortable. I dont believe I got an information leaflet giving any information on what to expect after banding (just got a pre-scoping leaflet on what to expect from the procedure).

    Hopefully things will ease up for your shortly. If they dont, I wouldnt hesitate to call the hospital for advice.

    Mark.

  • Thanks for your message. Have taken the first step in leaving a message for gastro who did my banding at hospital about propanolol or similar and ask why Im not under a hepatologist. My gastro of 4 years left last month and I was due an outpatient appointment in May. See what his secretary tells me when she rings me tomorrow after asking the gastroenterologist the questions. Seeing him again in 6 weeks for more banding and you cant ask consultation questions on treatment day especially after sedation. He is my only port of call pending recruitment of a replacement for my old consultant

    Best wishes

    julie

  • Yes, the propanal is to stop the pressure as two and a half years ago I had 8 varracies rupture and almost bled to death. It was horrific.

  • Hi, Im going to ask about propanolol as I am scared of a bleed especially living on my own. You sound like you had a scary experience. I have been warned many times about bleeding varicies and when told I had varicies and what could happen I was pretty scared

    Best wishes

    julie

  • Hi Julie

    Yes you would be scared of a bleed, but you did right thing by getting things rolling with doctor, its awful that you were not told about gallstones, you must have been in pain, if you are put on propranolol it will give you a sense of security. Good luck. Annette

  • Thanks Annette, fingers crossed and I will let you know what happens. Hopefully someone will take responsibility and put me on propranolol for piece of mind.

    Hope you are ok today

    julie

  • In my humble personal view it may be wrong to pin your hopes too much on being prescribed Propranolol so that you are not further disappointed if it is not. I say this because it seems not everyone responds well to Propranolol. There is also reported medical research that advocates Carvedilol as being superior to propranolol in reducing portal pressure and more effective than banding in preventing first variceal bleedings.. However you doctor will identify whats best for you but its probably best if you do not raise your hopes on on being prescribed a specific medication.

    If you are interested in checking out the research then Google 'Low Doze Carvedilol for Primary Pophylaxis of Variceal Bleeding' and see what comes up

    Best wishes and good luck

  • Thank you for your sound advice and I will think about what you have said and see what hospital say.

    Much appreciated

    julie

  • Hi Julie

    Glad you sound positive, I'm not to bad thank you. Keep well. Annette

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