PSC and Cirrhosis, Diet

[scampi2122]

Morning all, hope everyone is as good as they can be. I have a few niggles and thought I might get some answers here. I have had lots of tests, Ultra sounds, fibroscan, MRI, last week I saw the dietetics clinic who explained what I should be eating, which was useful, I hv no idea why I was not sent previously. I did not realise I have to eat more to compensate for my diseased liver, high energy and high protein, calorie intake above the norm, rather than the health diet I thought I was eating. I shall endeavour to do this, now I know.

I am now abstinent from alcohol for almost 11 mths, I have not got the results of the abdominal and pelvic scan I had a couple of weeks ago, I know my fibro scan score was stage3/4 cirrhosis. My consultant says PSC is a question mark, the radiologist was of the opinion it was likely.

I think I am on a list for another MRI scan, I have a DEXA bone scan in a couple of weeks. I will go and nag for a copy of what the consultant sent to the GP, the results of US scans which I don't have.

Should I be concerned about the PSC thing?

Should I request a different sort of test? I see my consultant again end of June

My last set of bloods were excellent, nothing out of range, just got to keep on eating I suppose and stay abstinent. Thanks, happy to listen to any advice Mel

[AyrshireK]

Hi scampi2122, we have a number of members of the forum with PSC and PSC related cirrhosis so maybe some of them will pop along at some point and you can share concerns or experiences with them.

If you wish to read up more on Primary Sclerosing Cholangitis (PSC) the British Liver Trust has a page dedicated to the condition at:- britishlivertrust.org.uk/li...

Hope that helps a little.

Katie

[scampi2122 in reply to AyrshireK]

Thank you Katie, I seemed to of missed that x

[LAJ123]

Good morning Mel,

From what you have just said, seems that you are heading in the right direction, especially with the alcohol.

As Katie just said, there is specific information regarding Primary Sclerosing Colangitis on the British Liver Trust website.

However, for more information / support, you might find the following link useful.

pscsupport.org.uk/

In the meantime keep up the good work, be positive and make sure you keep active with regular exercise,

Jim

[LAJ123]

PS.

Interesting article today.

bbc.co.uk/news/health-43504125

Jim

[scampi2122 in reply to LAJ123]

Thank you for this info I shall give it all a good read x

[Kristian]

Hi Scampi,

You've got to love the liver disease diet, or should I call it the "have your cake and eat it, and have another one diet". I was asked to keep a diet record as part of the transplant assessment. I was thinking, "should I really put those angel cake slices on?" and, "oh dear she's not going to like that bag of chips just before midnight". To my surprise, her reaction was to the contrary. Apparently a good dose of carbohydrate before you go to bed was a good thing, although, maybe not in the form of a bag of chips! Some biscuits or toast is better, lol. Its quite funny actually. On the back of the room doors at the QEHB there's a poster asking if you've ordered your bedtime snack. I just couldn't resist the jaffa cakes and mini chedders.

Sensibly though, yes lots of protein and stuff to give you energy, hence the carbs and cake. Do keep the salt intake down. Over time you may become low in Sodium, that isn't as a result of intake though. A little is fine, and I'm sure the dietician gave you advice on that. If things taste a bit bland use pepper as something to sprinkle on or add more herbs to what you are cooking. Be careful about hidden salt in things too, such as ready meals and soups.

On the PSC front, only get concerned by it if its confirmed. Its progression is pretty variable, it can take anything from 5 years to 25 years to get to a stage where a transplant may be required. With PSC its basically a waiting game at times. Keep monitoring it and you, treat any symptoms as best you can, and if necessary assess for transplant. There are worrysome things associated with PSC. However, they wont affect everybody and once diagnosed you will be well monitored. Some things will be unavoidable and you and your medical team will just have to deal with those as they arise. There is though now quite a bit of research in to PSC. Its seems to be coming a little bit more sexy and lots of work is now ongoing in to potential treatments. They are not there yet. There are some promising developments but its still early stages.

In terms of tests, it looks like you've had most things done. If they still have suspicions of PSC but your MRI was clear then they may do a biopsy. A biopsy wouldn't be required though if the MRI is conclusive. Next time you have a blood test you may want to ask if a ANCA (Anti Neutrophil Cyctoplasmic Antibody) test is worth doing. They don't always do it as its not terribly specific and not everyone with PSC will have it, but there is an association.

Good luck with your diagnosis and enjoy your cake!

[Kristian in reply to Kristian]

Having read through this again, I feel the need to qualify my response a little. This isn't an excuse for anyone to go mad and binge. Its about making sure you body has a chance of staying alive when your liver is struggling to process the food you eat. Always follow the advice of a dietician who is knowledgeable about your specific condition AND the stage it is at!

[scampi2122 in reply to Kristian]

I need that advice, eating is not my strong point, I hv discovered the joys of a large full fat hot cocoa and large bar of galaxy chocolate every night. I just have to put in a better plan of meals and snacks, I skip meals frequently, so I will have to work on it. Thanks

[Kristian in reply to scampi2122]

You'll probably find that's ok for you, lol. But yes, eating little and often is not too bad a plan.

[M8118]

I was advised to follow a general heart healthy diet. Low sodium, low saturated fat, high whole grain / fiber.