I am confused...... again!: My husband... - British Liver Trust

British Liver Trust

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I am confused...... again!

Bs1524 profile image
18 Replies

My husband saw the gastro consultant a few weeks ago who said he had the biggest heamarroids he had seen (so proud) arranged he should see the relevant consultant urgently and also was referring him to see a Heptologist. Meanwhile he has developed cellulitis. Well we saw the consultant who said he has got heamarroids now but wants him to have a colonoscopy. The other consultant hasn’t referred my husband to the Heptologist and this consultant said well no need really he only has cirrhosis nothing particular about his liver??? He asked about drinking and I told him his last drink was the 12th May this year the gastro Charlie has put end of May I explained I know,the date as it was when I was discharged from hospital so he mentioned him being so young that a liver transplant may be considered.

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Bs1524 profile image
Bs1524
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18 Replies

I'm confused about who said what. It must be difficult unraveling it all. If a gastro says have a colonoscopy, I'd be having it for sure, that much I'm clear about. If there are any polyps in the colon which could potentially at a later date become cancerous, these will be removed at the time of the colonoscopy with no additional discomfort. Best wishes. It seems a long, long journey for you.

Bs1524 profile image
Bs1524 in reply to

Hi we will definitely have the colonoscopy I was more puzzled by one gastro consultant saying you have the biggest heamarroids and you should be seeing the Heptologist to the next gastro consultant saying it is only cirrhosis nothing particular about your liver you don’t need to see the Heptologist and you don’t have heamarroids all in a couple of weeks. We have just been to see the neurologist and what a waste he told us about the mri scan what we had already been told said some changes due to age some due to alcohol never explained the significance of the changes said all his responses and reflexes fine he was a bit jaundiced going to,suggest taking aspirin if no contraindications and said he should stop smoking as that could cause further damage.

It was the devils own job to get to Queens Medical Centre in Nottingham thanks heavens a friend took us.

I agree that they were waiting to see if he would/could stop drinking and I understand why.

When we next see the GP I am going to go over my concerns and request a detailed plan of how his condition is managed going forward and exactly whose care he should be under. I may see if my husband will agree to a private consultation with the Heptologist I have been given the name of an excellent one but I think,he wants to bury his head in the sand over his condition.

Hi,

If you would like to have a chat about your concerns call our helpline. 0800 652 7330 10am to 14.45

Best wishes

Trust1

Bootandall profile image
Bootandall

Oh dear, l have a very large hemorrhoid as well. I guess it developed with all the straining l did before l was put on lactulose, hard to believe it used to be hard to poop. Sometimes hemorrhoids are surgically removed, but of course that depends on a few things, risks versus benefits. Low platelets for example might contraindicate any surgical procedure, but there are creams that can shrink the tissues enough to allow healing.

It sounds like the gastro is under the impression, if your husband has quit drinking, then his cirrhosis is of no consequence, but he may just be trying to downplay it for whatever reason. And his offhand comment about a transplant, is it possible he was only making small talk? Your husband really should be referred to a hepatologist for follow up care, the gastro guy only checks out the colon, for hemmoroids and polyps and possible disease, like diverticulitis or Crohn's. This stuff is important to diagnose and treat, but obviously the liver should not be ignored.

Bs1524 profile image
Bs1524 in reply to Bootandall

Hi Boots yes that is my belief he should see the heptologist so now we don’t know when or who we are to see

Bootandall profile image
Bootandall

So in all this time, these past few months, he has not seen a hepatologist? He was diagnosed with cirrhosis after presenting with ascites and jaundice right? Who diagnosed him, can they follow up or do a referral?

Bs1524 profile image
Bs1524 in reply to Bootandall

The hospital gastronomic consultant but the gp thinks he should see heptologist too

Bootandall profile image
Bootandall in reply to Bs1524

Okay, sorry, just going back over your old posts, it looked like he didn't see one yet. That sounds like the next step. I'm not positive, but I think they were probably waiting to see if he can abstain from the drink before investing in his treatment. Seems cruel (and it is) but with limited resources, it is really a numbers game. If the patient continues to drink, they won't be transplanted either, if it ever comes to that. Hopefully they are able to refer him now (finally!). I wish you both well.

Hi

No wonder you are confused!! I think your GP is right, he does need to see a heptologist especially as he has cirrhosis. Please let me know how he gets in. Love and hugs to you both Lynne xxxx

AyrshireK profile image
AyrshireK

Many people even with cirrhosis don't see a hepatologist, my hubby sees a local gastro consultant and even at Edinburgh he sees a gastroenterologist (albeit one with a liver specialism) but doesn't see a hepatologist.

Bs1524 profile image
Bs1524 in reply to AyrshireK

Have they explained why? I understood if the hospital didn’t have a Heptologist then you would see a gastro who specialises so I was surprised to discover there are two Heptologists.

AyrshireK profile image
AyrshireK in reply to Bs1524

We are in Scotland and there are next to no hepatologists, in Ayrshire & Arran where we stay there are none. He was only seeing gastro locally for over a year then in 2013 referred to transplant unit where the majority of liver specialists are based. There he sees another gastro but she has a qualified interest in the liver - she is a gastro but spends a significant amount of clinical time on liver and biliary issues. After delisting from transplant list she has kept him on her books.

Gerbera01 profile image
Gerbera01 in reply to AyrshireK

I have only ever had a gastro consultant too, but never a hepatologist. My gastro seems to know all things liver related, I'm in good hands with him. Never a gastroenterologist either, is it worth asking about one?

AyrshireK profile image
AyrshireK in reply to Gerbera01

Your gastro consultant is a gastroenterologist (that's what a gastro consultant is) - they cover everything in the digestive tract from one end to the other which incorporates the liver. Some gastro's do have what's called a qualified 'interest' in the liver which means they've done extra training and spend much of their time working on liver and biliary issues - that's who my hubby sees at Edinburgh - a gastro with a liver specialism but not a hepatologist.

Gerbera01 profile image
Gerbera01 in reply to AyrshireK

Oh, right, Roger that! Thanks for clarifying.

Hi Bs1524.

At that end, good to hear that your husband is finally going to have what must be a most uncomfortable issue dealt with.

If I recall there was or is bleeding involved so if any further bleeding presents after this business is taken care of, it would be important to know, from what I understand.

Bleeding is something that I was instructed to watch for and my husband does not share that same malady.

I hope that there is a date now scheduled for this procedure and that your husband's GP is being copied on all specialists' reports and test results.

You may need to ensure that the Consultants are all in sync with one another.

Your husband has come a long way with his now accepting some medical care and refraining from the alcohol. You must be encouraged in that regard.

Hopefully the rest will better fall in to place and there will be a clearer path forward for you both.

It seems reasonable that the med community should ensure that all of your questions have been answered.

Take good care.

Bs1524 profile image
Bs1524 in reply to

I fear mentally he is no further forward this morning he said during the night he felt like going to sleep and not waking up. He said that feeling had passed but I am not convinced. I am very worried.

in reply to Bs1524

That's so sad, Bs. My husband has felt / stated similarly at times over the months.

Has yours been prescribed any vitamins such as B12?

Is he anaemic?

Are you aware of any deficiencies?

Some can certainly affect mood and energy levels.

Blood work should tell the tale in those areas.

Is your husband's ascites being dealt with?

Were diuretics introduced? Do they think he requires draining?

Is he up to getting out at all these days? Or do his knees prevent most physical activity still?

It appears that my husband may be up for another hair cut today.

He has more blood work later as well. Every two weeks still at this point.

I'm glad that he is being so closely monitored.

And getting out breaks up the monotony of his days at least.

The sunshine/Vitamin D can only help too.

It's not much but I've started massaging creams in to my husband's feet, legs, etc. before bed. He looks forward to that now. It slightly helps the itchiness and I hope his circulation. It might even release some dopamine?

Everyone needs to feel some joy and have some hope.

It can be challenging trying to help others find some when they are feeling so poorly.

Besides the many cirrhotic symptoms which are bad enough, your husband has a number of other health issues so it is understandable that he feels so low.

I know it's difficult for you both. So sorry to hear.

At this end, I am just so pleased that I don't need to check on mine all the time to see if he is breathing or if I can somehow figure out how to get him to agree to or want to seek help. So far that has been the most difficult part of this journey for me. I think you had to go through that too? So many do. What an emotionally exhaustive and draining process that was! TG that part is currently in the past. This disease certainly takes a toll on all involved.

Like you and others have suggested before, don't forget to look after yourself.

I'd better get my husband out before he changes his mind! HAGD!

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