I had my surveillance endoscopy today. I was diagnosed with cirrhosis in March 21. I was seriously ill with a deep rooted infection which had tipped my liver into acute on chronic liver failure. They diagnosed cirrhosis and advised me to change my lifestyle or I wouldn’t be around much longer…and very nearly didn’t make it through on that occasion. It scared me to death and I vowed if I ever got out alive then I’d never drink a drop of alcohol again. I haven’t - it’s nearly 2 and a half years on now. I’m feeling very well and my recent bloods were all normal but I wasn’t sure what to expect today and was very nervous as I had 2 grade 1 varices at my last endoscopy in September 21. I was worrying last night about whether they’d have got worse or some new ones developed. I’ve flights booked for September and was trying to work out whether I’d be able to fly if that was the case. I’d even started to look at how I could go by train if the news was bad. I’m delighted to say that they’ve gone! Better still there aren’t any friends to replace them! I’m completely varices free. I didn’t believe the consultant at first…and asked him if he was sure! He smiled and told me he’d been scoping for nearly 30 years and he was sure. I’m not posting this to boast, but to try to reassure members who are worried that cirrhosis is a death sentence. It’s not. I’m feeling better than I have in years, completely kicked alcohol and am fitter than I was in my 30s and 40s. I’ve eaten properly and listened to every scrap of advise I’ve been given and consider myself to be the luckiest person alive…I’ve been given a second chance and I’m grasping it with everything I’ve got.
Endoscopy surprise: I had my... - British Liver Trust
Endoscopy surprise
That is spectacular! I’m so happy for you…and for the rest of us here, as it gives us inspiration and momentum to stay strong and on course. 😄.
Enjoy your trip!
Thankyou
That’s wonderful! Yes, we ‘second chancers’ know just how incredibly lucky we really are! Keep going! Your not alone! I too am a second chancer, thinking that it couldn’t happen, but it did!
We both know just how slippery the slope is, how devastating the news can be! That helps keep me going.
Lovely to hear from you!
well done enjoy your new life alcohol free .im trying hard to do another year of alcohol free cos i was warned that i was heading for early cirrohsis.i did fairly well last year but had several times (my daughters wedding )when i imbibed.ps i dropped from f3 to f2 at least
A very uplifting story - thank you for sharing. Is that a tear in the corner of my eye, no it can't be....
amazing, you should feel super proud. Go and enjoy your holiday x
Thankyou. I’ve managed to negotiate a month out of work and am travelling in Spain. From Seville to Barcelona, with some time in Jerez, to get some horse riding in, Madrid and Zaragoza. So hopefully the temperature will have dropped in September, not sure I can manage the high 40 degrees!
Thats great news, Well done 👏 I myself was diagnosed with cirrhosis in September 2021( jaundice but no other symptoms. ,alcohol related and never touched a drop since and agree that it is not a death sentence and I feel a lot healthier now since abstinence and a healthy lifestyle. I spent a day in hospital having checks,I've had Ultrasound, MRI, chest x-ray, bloods but wasn't given endoscopy. I was asked about having one later on but I wasn't comfortable with it so my doctor said he'll send me for fibroscan and see how we go from there . I've also had routine 6 months bloods and scans and all came back no features of concern. I had consultation with him and he never mentioned about endoscopy but I'm hoping to travel abroad myself next year and wondering if I was ok to do so. Sorry for the long post and all the best on your hols.
I would get one done for peace of mind. It unlikely that you’ll have varices from the test results you’ve had done…and they are obviously not too concerned or they would be pushing you harder to get one completed. I had my endoscopy yesterday with just an anaesthetic throat spray but you could have sedation. I find that whilst it’s a bit uncomfortable it’s certainly not painful, and sedation disrupts my day more than just the spray. It took 10 mins at most and the consultant talked to me about what he was seeing whilst doing the procedure. Then did a report and talked me through it. I even saw some pretty pictures of my stomach! He commented that it was a very nice healthy stomach and completely clear of any signs of ulceration….which given the punishment it’s had from alcohol over the years is pretty remarkable! It’s not pleasant….but it equally is over pretty quickly. Give it a try.
I think you're right and it will give me peace of mind..lm due for a consultation soon since having my last MRI scan and blood results back (all normal no features of concern) so I'll mention about flying to him and see what he says. I think it's the thought of what they'll find but with having no symptoms hopefully I'll be OK. Can they see if the liver is healing through endoscopy or would that be found through scans. He also said my liver was functioning normal and my bloods were normal range and ive done well by losing 4 stone in weight through diet and exercise so I'm doing something right. The liver is a remarkable organ and can repair itself so well done with your journey and all the best.
well done, congratulations that is no mean feat . My husband is still struggling to give up alcohol despite the fact that he is diagnosed with cirrhosis, enlarged spleen and varices and portal hypertension. Any advice
I hit my rock bottom which prompted me to completely examine my life, which I was lucky to still have. I stopped drinking with support from Turning Point. It was only a couple of sessions with an alcohol support worker and we just talked about why alcohol had become such a problem for me. He gave me some techniques to use if I was tempted and also helped me work through triggers for drinking. I think I was at a point where I was ready to stop. My hospital experience scared me. It was the humiliation of not being able to even get to the loo without help and not to be able to comprehend what was happening around me. Mostly it was that I realised that if I carried on then I would die and pretty soon too and it would be a painful, humiliating death. He has to come to that realisation for himself…nothing you’ll say or do will make him. It has to be his decision. There is a lot of support out there…his GP can refer him to local services. I personally have found it easy to stop once I decided I was going to. If you’d said to me 5 years ago I would be completely abstinent even at weddings, parties and at pub lunches I’d have not believed you…it’s an internal shift which drives the decision but I did have help too.
That sounds amazing congratulations on working your way to a better life.great to hear a successful story gives me hope x
Thankyou. Cirrhosis is not a great diagnosis…but it’s equally not the end of the story. I’ve also had a lot of help from my amazing doctors, nurses, psychologists and all the other amazing health support I’ve had. Thank goodness for the NHS.
Hi Aotea2021 first well done for kicking the alcohol and the rest of the news is fantastic good luck to you, I hope you have a great holiday 👍.
Stay safe All
Dogbot 🐶🌈Dave
That's a wonderful and uplifting story and an achievement to be proud of. I had grade 1 varices at endoscopy. Been alcohol free for 6 months and am crossing my fingers for the next scan which is probably 8 months away Like you I feel much healthier and fitter.
Wishing you a fantastic holiday.
Pete
Thankyou. After six months of abstinence they were still there but at 2.5 years they are gone…so I think it takes time. Keep at it and keep positive
that is brilliant news I’m so pleased for you and the hard work you have put in to kick alcohol out of your life and find a better healthier way of living
I was diagnosed with NAFLD four years ago and told to lose weight (I’m 13 stone) I find it very difficult to lose weight and tried different diets, currently on slimming world diet but lost 7lb since November very slow. If you have any suggestions they would be appreciated
I’m no expert at NAFLD because mine was caused by alcohol. There are some fantastic pages on the BLT website and the helpline is great.
What an absolute inspiration you will be to others who are, or were in the same situation as you a few years ago. You have proven that one's liver can improve along with the complications that can be caused by not looking after this important bodily function. Sincere congratulations to you on doing such a remarkable turn around. Keep on going hey and lead a much deserved long and healthy life - you will appreciate it and your post will boost others. Brilliant post. Take care.
Thankyou. There are a few things for me…no alcohol, good diet and a positive mindset. I never believed I’d ever not get well…and there were set backs. I get very worried when I have check ups, obviously, but don’t think anything about my cirrhosis specifically outside that. I just live life and follow my diet and abstain.
That is fantastic news!! Good for you & go & enjoy your trip. Can I ask what caused the deep rooted infection. Karen
Wow, thats really great news , so pleased for you. My wife was diagnosed pretty much same time as you with de-compensated cirrhosis with Childe Pugh score C. As you have pointed out what a scary time this was for us but , I am also pleased to say fingers crossed we are on the same track albeit a little way behind you but my wife has not touched alcohol since she was admitted to hospital during those dark days and has gradually shown great progress with sensible diet and back working in our garden which she always loved before booze took over and nearly ruined our marriage was destroying our lives. She is back to the woman I married 38 years ago and this journey the last 3 years has made us stronger I am so proud of her , its been so tough for but luckily her liver consultant is back on the case( he went back to India during covid) she is having scans coming up in next week with further checks in September but he is generally very pleased with progress so we feel very blessed as you do . Very well done & look forward to having a great holiday !!
I am so pleased for you. I haven't had any alcohol for four years and I forget to ask about my varices, there isn't an outwardly sign of them. Note to myself ask the doc next time. Plus I agree with you I was told 18 to 24 mths and I am still here. So no it's not a straight forward death sentence.Congratulations you varices free person you. Enjoy your flights wherever you are going.
Do you not have annual gastroscopy to check the condition of yiur varices ? I though this was standard practice in NHS
No I only have one since all this started. If you mean ultrasound I have one of those a year.
Have you been diagnosed with cirrhosis ? With cirrhosis it is normal in the NHS to have ultrasound scan every six months to monitor for HCC (cancer) and my consultant says I have to have surveillance on my varices with an annual gastroscopy. I will aldo have an annual fibroscan and 6 monthly blood tests. If you've had a diagnosis and are not getting this level of monitoring I would be asking my GP and consultant why.
Your story is truly inspiring. Well done to you! Thanks for sharing this and giving us all a ray of hope on what can sometimes feel like a never-ending battle.
Have you been taking a beta blocker such as Carvedillol or attribute it to anything in particular ? 😁
No, I haven’t taken any medication. My consultant said that if they’d progressed when I had my endoscopy then I would need to take them but he explained that they were efficacious to avoid bleeding but less well demonstrated at stopping varices developing in the first place. The best solution for both was to avoid alcohol and eat correctly which I’ve done.
Thank you. This is tremendously reassuring for me, to see that mild cases can improve without even beta blockers (in some cases - if lifestyle is changed).
I didn’t have varices to begin with (mild portal gastropathy) and feel a million times better than I had when that endo was performed about a year and a half ago.
I really wish there was an easier way to asses portal hypertension. ..? Any information or ideas? I’ve read some research on fibroscan results, and how they can proportionally reflect portal hypertension.
The liver nurse who did my fibroscan said she couldn't see portal hypertension but nonetheless my gastroscopy showed grade 1 varices so there must some portal hypertension
thanks for the info.
The best way to improve liver health which drives portal hypertension is to take care of it. Looking after your liver means avoiding the things that stress it…alcohol, as well as eating a good diet and exercising. On top of that, whilst not directly related to our liver but equally important because of the effect on our overall health, is paying attention to our emotional and mental wellbeing. Healthy mind leads to a healthy body. I do that through mindfulness, yoga and riding horses, but there’s loads of ways to do it.
yes, I completely agree. If your emotional state is a rollercoaster ride then the beta blockers would have a challenge in stabilizing it. Always best to address the cause and not the symptoms whenever possible.
That being said, if I had high risk varices I’d be the first to take a beta blocker.
I’m all about mindfulness. I’m doing yoga 4x/week. Plus walking and reading positive sources. I found the book “the Four Agreements” to be a valuable source in positive thought process modification. I got it as a gift.
I’ll have to look into the horse riding thing. I haven’t ridden one in years. 😆 yikes. 🤣
If I’d have had high risk varices after my endoscopy I’d have been the first to go onto beta blockers too. Horse riding, go on give it a go! 🐎😁
😮🤣
Thank you for sharing your positive story. It encourages me so much!
That's wonderful news!! I can hear the enthusiasm in your words. Congratulations! Keep up the good work!!
That is great news! Well done.
Can I ask if you suffered from fatigue, when that went and did you ever have to go for a transplant assessment?
Really good to hear you’re well. Thanks for sharing.
At the start, when newly diagnosed, I was very tired. As I’ve got better my energy levels have improved. I now work 4 long days and still have energy. I do pay attention much more than I used to to what my body is telling me and rest when I feel the need rather than ploughing on as I would in the past. I’ve never been near transplant territory as my liver function has improved.
Thank you for that. Wishing you continued health and healing.
You are AMAZING, you took your diagnosis and turned your health around with your lifestyle change. My husband has cirrhosis and it's taken him awhile to embrace it in a more positive rather than negative mindset. Doctors were sure bc of his livers stiffness doing an endoscopy would show severe varices and surprise nothing. Miracles do happen but are supported with hard work as you have obviously done. I wish you continued good health and happiness.
Excellent news and Well Done!!!! 😊👍
Brilliant news x
Congratulations! These are the ‘little’😜 reminders of how much we can do to improve our own quality of life!
Chin up, shoulders back, looking forward! And what a forward you have to look to! Congratulations again!
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