GI bleeds

[angse]

This question may not be able to be answered but cannot get any joy from gastroenterolgists, last jan 2013 I had my first endoscopy, was told no varices seen, however there were 2 lecsions which Dr took 2 biopsys of, then Feb 2013 just one month apart lost 4 pts blood went unconscious had severe encelopathy and had 5 varices banded my family told may not survive , so my life has not been the same since, I cannot seem to get any feedback from drs I have asked how did the endoscopist miss 5 varices but cannot get any direct answers only saying they may not have been there at that time just one month apart that amazes me, I have had grade 1 and 2 varices for the last 3 months that has not needed banding yet, I have endoscopy every 3 months just wondering if anyone else had any experience like this hope you all are keeping well. Angse

[AyrshireK]

HI Angse, can't answer fully but know that the first we knew of my hubby having cirrhosis was when he had a massive upper GI Bleed requiring 7 veins banded (April 2012). After a couple of weeks he returned to hospital where another 3 required banding and at every session since he has needed veins banded.

The gaps were initially 3 months then rose to 6 months but once we got moved to the liver unit in Edinburgh for treatment (instead of the local gastro doc) his consultant there said she wanted to 'obliterate' all his varices to reduce their chance of bleeding again - this has resulted in endoscopy exams every 4 weeks or so and at each one she has banded up to 6 veins at a time. So, yes they can 'pop up' to be at a stage requiring banding in the month or so like you experienced.

My hubby is having another endoscopy next week which will actually be nearly 5 months since his last one and doctor said she will know better how they are behaving with them having been left for such a gap and whether she will need to get 'aggressive' again in her regime of banding them or whether they have shrunk enough to enable lengthier gaps between endoscopy.

We have never been told the grades of his varices & he hasn't (apart from one week) been on any beta-blocker medication for his portal hypertension, thankfully other than a bit of confusion he doesn't seem to be showing any major signs of encephalopathy and has no ascites (touch wood) though we have recently learned that his bloods have began to go a bit more iffy perhaps indicating that his Auto-Immune condition is returning so last week he went onto Prednisolone 20mg per day.

I don't think you'll get a definitive answer to your question from doctors as every single case is different and some people respond differently to the treatment, their degree of portal blockage is different, some respond to beta-blockers but we were told they weren't of much use if you've already bled. We've asked various questions about hubbies varices and got no proper answers and even the repeated banding itself can have issues as Phildad has described where by patching one vein its causing veins to pop elsewhere.

Sadly just keep going through the endoscopy and I guess trust in the docs. Are you under a liver unit or just local gastroenterologists because it might be worth pushing for a referral to your nearest liver/liver transplant units - they prefer to see people sooner rather than later and control your condition in the hope of delaying/reducing the need for transplant.

My hubby hasn't been assessed for transplant but is now a patient of the Scottish Liver Transplant Unit in Edinburgh and it is they who have taken over his consultations and his endoscopy procedures and who are co-ordinating all his scans, blood tests, medication etc. etc. The local gastro doc is still kept in the loop in case of urgent need locally as we are 3 hours away from the Royal Infirmary of Edinburgh.

Anyway, hope you are doing ok just now.

All the best from

Katie

[Ph1ldad in reply to AyrshireK]

Hi all, Just been to Birmingham Unit and was told there that the banding regime I was on has now been suspended. Having had endoscopies every 6 weeks for 9 months resulted in 27 bandings and 2 varices in the stomach that get bigger every time they band. These bulging veins can pop up in a few weeks from a small red patch to a full sized varix. The consultant said that he reccommends no bands unless there is evidence of any bleeding. I'm really pleased with this as I had a lot of problems with the procedure. He is also very sanguine about the state of my liver saying that as I'm 15 years post cure for HCV and it's still well compensated, it will last for many years yet; whoopee! Still have problems with the various other things but I can tolerate those. They have reduced my beta-blocker but are continuing with the 6 monthly MRI scans but I'm a fortunate one in that my treatment and symptoms are not onerous and I look forward to many years. Good luck to all

Phil

[angse]

Hi ayshriek hope I have spelt this correctly, yes I am under kings college liver unit in London, they do regular 6 monthly ultrasounds on liver, bloods, and consultations. I have 3 monthly endoscopy in Kent where I live I am also on betablockers as they said they want the pressure to be as low as possible, I have also had a procedure called APC which is an endoscopy with laser on the end that burns all varices in the hope that future varices will not bleed, like your husband we can only do our best to stay as healthy as poss, very sorry to hear about what he also is going through, I only had enceplopothy that one time last year, and I recall nothing about it at all, I went to bed one night woke up in hospital two days later, very scary experience I feel so sorry for people who suffer from it on a regular basis, anyway thanks for replying your post did help, hope your husband and yourself remain well annette

[Hidden]

Bless you - don't know the answer to your question - all I can say is that my hubby Rob had his last Endo in October 2013 and as he was going to Kings the following day for appt they decided NOT to band his 3 varices as his platelets were too low ?????? And as always (with us) no one has looked or mentioned them since !!!!!! So I presume we have to wait for him to have a 'bleed' ????? I know when he had the 5 varices banded that had been bleeding when he went back 2 weeks later they banded another few ??? So don't know how long it takes to 'develop' but can only guess that it is quite quickly - if you have portal hypertension xxxxxxxxx

[angse]

Hi robswife. Thanks for getting back to me, hope your hubby is doing OK at present, I would really ask Hosp what are they going to do about your Hubby's varices, its awful to think that he may have to wait to have a bleed, as this could be really nasty, hope that does not happen to him. Good luck to you both Annette xx