Depressed and frightened: Hi, i am new... - British Liver Trust

British Liver Trust

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Depressed and frightened

Simonbaxter1 profile image

Hi, i am new to this site and just wanted to introduce myself to this site, as i have many unanswered questions, which i'm sure i will be discussing very shortly!

30 Replies

Hi Simon, welcome to our merry band. Once you are ready to post your questions I am sure many of us will be able to offer support and help.

Katie

Trust5 profile image
Trust5Administrator

Hello,

Welcome to the forum. Many of the people on this forum have felt as you do, I have no doubt that you will receive much support from fellow forum users.

regards

Hi Simon, and welcome. We are all here to try and support each other. Regards Alf.

Welcome to this site Simon, l hope your able to find the help and support you require. If you feel unsure about speaking to an open room, please feel free to message anyone privately.

Hi Simon, welcome to the forum and ask away!

Thanks to you all for your replies, it is very comforting to know that there is so much support out there!

Hi simon, welcome to the site am sure you will get great help and understanding here as I have

Huw

Hi Simon, and welcome to our friendly group. There's a lot of knowledgeable people here, and fellow sufferers who will offer help and advice to you, so just fire away when you are ready.

David

Hi Simon, When I joined people were and are so supportive. This is a brilliant resource. We are all here to help where can and your not on your own.

I am new too Simon, but have already had great help with my questions. Welcome!

hi!! chat when u feel ready

Hi Simon, The only regret you are likely to have is wishing you had found the site sooner. I certainly wished I had Hazelxx

Hello Simon

Firstly welcome to a great team of lovely people on this fabulous forum! You will notice that can be serious at times and give great advice based on there own experiences when required, funny at times with some banter between each other which you'll see if you read older correspondence, and most of all we're all very loving and caring people when good or bad things come to our attention!

Hopefully my we note helps you feel a little more ease and maybe I/we shall here from you again !

Take care in the meantime

Trish

Simonbaxter1 profile image
Simonbaxter1 in reply to

Thank you so much for your message, but don't feel quite ready yet, as i find it hard to put into words!

in reply to Simonbaxter1

You take care ! You can always PM me if your struggling!

Love Trish x

Hello Simon

Just checking your ok as I've not come across any messages recently.

Were here to help! Take care

Trish

Hi, thanks for your concern, it's just that when i saw my liver consultant in January (i also have chronic pancreatitis), but am under a pancreatic consultant for this consultant). I have regular 6 monthly scans and appts. However, my liver consultant when i asked what stage of chirrosis being 1-4 he said it goes on C-F, of which he informed me that i was between D-F? I drink 1 and a half litres of Lambrini (7% which is quite low in volume, but all the same still alchohol, so no excuses there)! He has also treated me for ascities, but said that i could have one 70cl bottle of Labrini at weekend? He also informed me that because i suffer from heamachrmototis as i carry the gene and said that my iron levels were high and would need 2 pints of blood taken away, heard nothing since, but he has now put my appt for Sept instead of March (which was my original appt)! I just don't know what is going on??

Kindest regards and thank you!

Hi Simon, I don't know what scoring system your consultant is using to come up with C-F staging description. As you've become aware cirrhosis is normally staged 1-4 based upon symptoms present.

Stage 1 & 2 are compensated.

Stage 1 - patient has no varices, no ascites.

Stage 2 - varices but no ascites.

Stage 3 & 4 are decompensated.

Stage 3 - ascites +/- varices.

Stage 4 - bleeding +/- ascites.

I am horrified that any consultant is advising a patient with pancreatitis, cirrhosis and a struggling liver due to haemochromatosis that they can drink a bottle of alcohol. It would be HIGHLY ADVISABLE to leave the booze alone. Your liver and your pancreas will both thank you for it.

Please look after yourself. Fingers crossed you get some proper answers in September and begin treatment for your various conditions.

Katie

Hi again, that's exactly what i thought? That's what is why i am totally confused? However, due to my diabetes, my pancreas no longer produces insulin. I have recently been in a cast for 3 weeks and now have a crow boot on my foot, which has been on now for 6 weeks, and is really getting me down (diagnosis is charcot foot),i am due back on Thursday to see how i am doing, but was told earlier that it could take up to 18 months to heal properly😩, (fingers crossed)!! I am also having phsyco-therapy at the moment with a Rape Crisis counsellor (which i feel i am re-living what happened to me from the age of 12-18 years old)! Just feel so low, restricted and useless and in turn have once again hit the Labrini! Is there any way out of this mess i feel i'm in?

Kind regards!

It's like swings and roundabouts (a never ending circle)!😞

Is there light at the end of the tunnel!!😢

Really sorry to hear you've got so much going on just now both health wise and with your childhood trauma issues. As regards reaching for the bottle to help solve things then sadly it won't, alcohol is a depressant drug and whilst you are already low the booze is only going to make things worse in the long run - your mood as well as your health are only going to sink further.

I take it the Charcot Foot is a side effect from your diabetes as it seems to be as a result of neuropathy.

I wonder if there are any clubs, hobby type groups you could go along to (even with your limited mobility) anything to try and divert your mind from all the negativity. Have you told your counsellor how badly the rehashing the past is affecting you? Perhaps you need to next time you have a session, whilst it helps to get things out rather than bottle them up, if you are not quite ready to then I guess it can be a negative experience and you've already got so much going on.

Keep venting on here, even if we can't physically help it does help to perhaps put your worries down in print even to us strangers. No one here is judgemental and everyone has their own back stories and histories that led them on the journey they've faced.

As regards your liver health, make sure you are actually seeing a hepatologist and not just a gastroenterologist. You've got various issues to contend with regarding your liver - probably fatty liver from having diabetes and also the haemochromatosis, the cirrhosis itself and any knock on effects from the pancreas. Hopefully all your specialists share information and you've got some sort of hollistic/joined up treatment plan going on. If not then you need to make sure that they start doing so as treatments for one thing might impact another and they are all impacting you. Try your hardest to rid yourself of the booze crutch as sadly it is only going to make things a lot worse. I don't know what the chances of you having need for a transplant in the future but you don't want to face the prospect of having to wait a minimum of 6 months before they'll even assess you if alcohol is deemed to have contributed to your liver ill health.

I wish you the world of luck.

Katie

Thank you, and i know in my heart and head that everything you are saying is absolutely spot on, but can't seem to shake it off! Now you mention it, it is not a hepatologist i am seeing, it is a gastroenterologist i am seeing! Excuse my ignorance but what is the difference between the two?

Kind regards!😕x

Seein Gastro for both liver and pancreas!😕x

But different consultants for both liver and pancreas!😕x

A gastroenterologist deals with everything from the mouth to the other end re. the gastric tract and includes gullet, stomach, pancreas, liver, duodenum, bowels etc. etc. BUT are not normally specialists on any one bit of it (sometimes you get gastroenterologists who have a qualified interest in the liver - this means they spend more time on pure liver and biliary work than the rest of the gastro tract). HOWEVER, a hepatologist is a liver specialist - the liver is their main focus of work.

If you are able to request a referral to one of the liver specialist units you'd get more appropriate care for the liver aspect of your condition. It sounds a bit daft to be seeing two different gastroenterologists when one dealing with both your liver and your pancreas/diabetes would be more joined up to treat the 'whole you'.

Maybe see what other services are near to you. BLT website has a page detailing UK liver centres and t/p units. britishlivertrust.org.uk/li...

All the best,

Katie

Welcome!!!

Everyone on this site has been awesome ... helpful too !!

Hi Simon I just wanted to say how sorry I am for everything that you are going through. Most of us here have been through our own type of hell too and I feel that makes it easier to share on here than in the outside world. A Hepatologist is someone who specialises in all things Liver. Please take care of yourself and when you’re ready to post again pop on here and let us know how things are xxx

Welcome - there lots of friendly people here with a huge amount of knowledge to support you.

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