for the past 2 1/2 months have been suffering from rightside pain, that sometimes goes into my back, with occasional pain left side too. Noticeable change in my memory and confusion (forgetting words, cant' think clearly and just a general fuzzy feeling in my head) I find that just going for a walk around the woods with my son makes me very tired later in the day and also aches pains in muscle and bone. Loss of libido. I have lost 2 stone during this time but it's stabilised at about 16stone 10lbs. I had ultrasound about 1 month ago which showed quite a fatty liver with local area of fatty sparring? . At this point I am now being seen by a G.I doc. I have had a endoscopy which shows grade 1 asophical verices. he then put in for a ct of abdomin and pelvis with contrast. That was 2 weeks ago and I am waiting for him to put me in for a Fibroscan. Today I noticed I have bright red blood in my stool which is also very pale with bits of undigested food. I guess this is due to portal hypertension? I don't have jaundice, little bit of itching but nothing severe. My feet are bloody freezing cold.. my hands are also cold at times. I have noticed a mild tremor in my hands which I also feel through my whole body.. very subtle but it is there. I don't drink or smoke but I was overweight and my diet WAS very very bad. SInce this started happening 2 1/2 months ago ive been eating clean meals, chicken veg etc, no processed foods, keeping fat,sugar and salt to a minimum. I do feel quite unwell. I will phone my G.I doc's secretary tomorrow morning and explain the increased confusion and blood in stool.
I did have fatty liver for a few years before this happened. But it's my fault I didn't change my diet... I just got used to the right side pain as that was the only symptom I had!.
My fear is now transplant may be the only option, I don't feel myself at all... it's weird I feel like i'm just watching everything happen around me without actually being there if that makes sense... feel like a blank slate.
Any advice is appreciated. Sorry for the long post and any errors in spelling!
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ktan49
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Also forgot ( oh how fun ) that I did initially have really bad nausea and was sick a few times, and couldn't sleep at night... a month on and i do have occasional nausea its nothing severe, and I can fall asleep really easily now at night. I must add that my appetite is still as big as ever, which I guess is a good thing? I'm only a young bloke at 29, with a 3 year old little boy I need to know if my G.I doc realises how bad things are can you get fast tracked for a liver assessment? As far as I know, my kidneys,lungs,heart etc are all in good health.. so far. but i feel worse everyday... i can deal with the aches and pains but the HE is annoying as hell, forgetting everything. Also if I get admitted to my local hospital would they transfer me to the Queen Elizabeth in Birmingham, as that's my closest liver centre.. about 30miles away from me
I would definitely ask the question about referral to the transplant team, they prefer to see people too early rather than too late and with many of the symptoms you are describing it does sound like your liver ill health has advanced somewhat. It doesn't sound like you are at 'deaths door', however, it might be time to touch base at least with t/p unit to see what stage you are at and what they can offer going forward.
My hubby was seeing t/p team in Edinburgh a year before he was listed for transplant, they took over his liver treatment and actually after 10 months he was delisted because his liver had stabilised. Sometimes you just need the correct doctors involved.
Thank you so much for the reply, really appreciate it. How would I go about getting in touch with a transplant unit? As my G.I doc initially thought I had "acute fatty liver" even though I told him about my "brainfog" pains etc but since then he did my endoscopy and I heard him say that I will need a fibroscan. I feel like no one is taking me seriously.
What happens If I deteriorate further, will transplant team still consider me? I can still do stuff like go shopping, driving and stuff round the house, as long as I don't over do any physical tasks i'm not too bad. I'm really panicking now, what can I say to my G.I doc next time I see him? I just want to be taken seriously
I read that "emergency" transplants do happen, if you was on "deaths door" without having an assessment would a transplant still take place?
Again sorry for all the questions. I feel that this forum is a gold mine for advice, I've had no one to ask up until now
The fact an endoscopy has shown varices might indicate you have a bit more damage than actually 'just' fatty liver. Sounds like GI doc now isn't 100% sure of diagnosis hence the request for fibroscan - this would give a reading of how thickened the liver tissue is & it's good they are looking to do this. Once you have that fibroscan - especially if it confirms a diagnosis of cirrhosis then request a referral for a 2nd opinion at Birmingham (you are entitled to that anyway even if transplant isn't yet on the cards).
From the symptoms you describe you arn't yet at transplant stage - you don't describe any ascites, jaundice or really advanced symptoms - although the confusion / brain fogginess are a slight concern. It would do no harm to get looked at.
Don't overly concern yourself with the need for emergency transplant or anything just now, if you were to go into liver failure without a t/p assessment the medical team can work miracles to stabilise giving time for transplant assessment and suitable listing etc.
When is your next gastroenterology appointment, ask then about referral to Birmingham although do telephone secretary and make them aware of what you feel are new symptoms.
Thank you again for your extremely useful reply I don't have an appointment as of yet, he said he would be in touch next week, over 2 weeks ago. So ill phone his secretary tomorrow and explain the increased confusion and bloody stools, maybe then he will get back to me as a matter of urgency.
I'll keep this post updated as and when I get more info.
I know how frustrating it is to spend your life waiting for appointments for scans and to see the specialist. When I was first diagnosed with cirrhosis I asked my gp to ask for an urgent appointment with a hepatologist and / or the gastroenterologist who I was under the care of (even though I'd never seen him) . I was refused by the hospital the heptologist is at because they said I needed to carry on at my local hospital. I wasn't given an urgent appointment as it was decided that my case wasn't urgent and the waiting list is in excess of 20 weeks. I rang the gastroenterologists Secretary and asked if he saw private patients. He does and I saw him that evening. £180 well spent as he put me straight onto his nhs list. Although I still haven't seen him at the nhs hospital he arranged for me to have a CT scan and due to the results of that he has now referred me for a capsule endoscopy. Hopefully when he gets the results of that I will finally get to see him in clinic. I just want to know what has caused my cirrhosis and what treatment/medication I need. I don't drink or smoke but I do have another autoimmune condition so we're wondering if it is autoimmune. I know it is horribly stressful but try not to worry too much. You are a young man, I'm a grandma of 58 and I'm not ready to pop off any time soon. 😊 Take care. Deb
God! DONT drive. HE can get you and you may think you’re OK but you’re not. Eyat if you go into the doolally state. You probably wouldnt be insured. Sorry i just speak from personal experience. The Birmingham (fantastic team) T/P team were horrified when i said I was still driving. I had to send my licence off to DLVA.
BTW glad to see Katie is talking to you. She is an absolute mne of information and advice. As is Deb.
I’m not 😀
I only have my own experience to call on having been through the whole raft of liver issues for 4 years. I’m glad tonhear you’re going tompush for resolution. It is , believe it or not, quite hard to get on the Birmingham clinic, it took 3 and 1/2 years from when i started having liver problems (all that time going to the local clinic frequently). Fortunately every 3 months one of the Birmingham’s liver specialist ccame to a shared clinic at my local hospital, and at the third one of these I got referred to Birmingham. PS I knew nothing and never asked questions and nefer looked up Dr Google (donso with caution) or even knew about this fantastic forum!!
Long and short had a T/P 6 weeks ago. Obviously its traumatic and, despite what you may be told, it does hurt like hell for 2/3 weeks - this ibviusly varies from person to person - BUT its the bedt thing since sliced bread. 😀😀😀😀. I can walk again, about 400m now and improving. So don’t be (easier said than done I know 😬) put off by, if worst comes to worst, the thought of a T/P.
Thanks for the reply, so when you say you went through the whole raft of liver issues for 4 years, you had Confusion,portal hypertension, pale bloody stools, muscle loss aches and pains all that time? Glad to see you had a transplant feels like I hit a brick wall 2 months ago... and I feel like a different person for all the wrong reasons. Driving me mad. Feel like I'm.going crazy
Will my CT result of abdomin/pelvis with contrast show cirrhosis?
Wow everything you've got i had (some remain until medication finishes) inluding floaters - loads - (yoiks) but not stool issue. My related issue was constipation I was on max lactulose (did nowt for me after first couple of months) ended up having to use liquid enemas myself yuk...
Also not sure about dizziness but i had, and still to some extent have still, a lack of balance...don’t ask me to walk in the dark unless I’ve got a wall to lean on...wuheyee 😀
Sorry ktan I dont know how ciihosis is seen, wrongly or rightly i just went along with things. I had lots done when doolally with HE.
Funny story (?) - Since a child i always wondered what it would be like in back of ambulance with flashing lights and sirens. Well I achieved my aim but....
I had HE so bad it took 3 people to get me downstairs from the bedroom. Once in my comfy chair apparently i refused to move, so reluctantly (first time ever) my wife rang 999. Good news I had my ride in an ambulance with the works? Bad news is I didn’t come around until about 2 hours later and couldn’t ,and still can’t remember anything about aaah.
Glad you got that ambulance ride you wanted I don't think my HE is that bad yet, I find myself talking to my partner and as soon as she finishes talking, ive forgot pretty much everything she just said. she gets frustrated with me at times but I try to explain. Also feels like time goes really fast? Hard to explain. I find myself sitting down and it takes me ages to finally get up and do something, sometimes I make a drink or boil the kettle and completley forget what i did.
Did you get prescribed rifaxamin for your HE? Ive tried taking lactulose on its own but doesnt seem to do anything for me. maybe once ive got a diagnoses they will get me rifaxmin. Hopefully soon as i feel like im loosing my mind and its so upsetting. im not an emotional person before this but now everytime I look at my son or if im on my own I just start crying, thinking the worst all the time.
Just got off the phone with GI secretary and they said they have booked fibroscan today could take few weeks!! Will i be ok with these current symptoms for that long? She also said she will pass the message onto him about my confusion getting worse.
Does anyone have any tips for diet? i'm eating very clean at the moment, chicken, fresh veg, fruit, low salt cereal. But I have such a big appetite especially in the evening, is there anything I could snack on that won't do me any harm? Ive been given no advice in terms of diet from my G.I as of yet.
I know! I said the very same things, what the heck CAN you eat. Don't add salt to anything you cook, keep away from ready meals, check the labels before you buy foods, it's impossible to avoid salt completely, and as far as I know, the body needs salt to survive. I read the labels on food and either don't buy it or choose the lower salt content. My husband always liked his crisps, so I buy the salt your own for him, and he bins the salt. I use cornflour and browning sauce when I cook meat, avoiding stock cubes. Spring onions are a good flavouring in food. It's paying attention more than anything. Hope this helps.
Sorry for slow reply had to rebuild my ipad again third time in about 1 month. Why oh why do apple make nearly everyhing so difficult! Takes me over a day to get it to look like it was before. Even now I’ve got a wallpaper that’s horrible and only one option to change to which is just as bad. On my previous build there were lots of options! IOS 12?
Sorry - back to your question, yes I was put on Rifaximin for the lst 6 months before T/P. Apparently it’s very expensive, hence the relictance to prescribe!
Yes emotions do run high, I certainly suffer (well not suffer suffer but you know what I mean 😄).
Hehe i have long discussions with wife and then ask her to say what she really thinks. She says “about what?” I say what we were talking about! She says you’ve been asleep for last 5 mins. Omg its quite worrying and sometimes I’ll do that twice a night. Fall instantaneously asleep, no warning. But its starting to lessen now thank goodness. I want my driving licence back 😫😬😀
in reply to
Ooops found wallpapers now. More brain fog!
Bright red blood is not something I experienced when I had portal hypertension problems. The stool is more likely to be black and tarry (i.e. sticks to you like glue!) if you are having a bleed from a varice.It seems unlikely that you will need emergency transplant at this stage. When you are diagnosed with a lot of worrying symptoms all in one go, it is easy to think worst case scenario, but I have had bleeding varices (2 years ago) and still not on transplant list. Varices can be banded and put an end to the bleeding. Medication can manage the risk of them reappearing (beta blockers). Pale stools are a sign that your liver is not working as well as it should.
As for diet, you can ask for a referral to a dietitian I am sure. I eat porridge (no added salt there) or shredded wheat (again no salt) or fruit compote with Greek yoghurt for breakfast and homemade granola (I control the amount of salt added). These are just a few suggestions. Weetabix crunchy bran is really good at getting things moving if required (!!!) and only a few are needed if you add to the above cereal options, so that will keep the salt low.
Hopefully that's enough info for now. Keep eating well and you should be able to help your condition. I got a referral to QE through my GP- my consultant didn't think I was at that stage yet(!) QE took me on and I am still with them. Good luck for the future and be reassured that your gastro will see you sooner rather than later when they have all the info they need (or at least that has been my experience)
Thank you for your reply, good information. What did you say to a your gp to get referral to QE and how long did that take? Any idea what I can do for the pain? Mostly right side.. was on and off about 1 1/2 month ago now it's pretty much constant all day before I go to bed and there when I wake up.. although it feels like I'm not actually sleeping anyway. I have do have quite a high pain threshold I'm scared to take any pain killers. Is it normal for liver disease to make you feel this unwell ? My whole abdominal area just feels horrible. My tremors are also annoying, whole body feels like it's got a slight shake.. more noticeable in my hands. Everytime i have abowl movement now there is always bright red blood in it.Thanks all
Sorry for all the questions, need to ask before I forget them !
I should have clarified on the blood situation. Oesophageal (throat) varices which bleed tend to produce black, tarry stools. If you are getting red blood, that indicates fresh blood and could be from haemorrhoids or varices in the back passage. (There could be other causes, but since I am not a doctor, I can't suggest what they might be). Either way I would see the GP about this and a quick exam will tell them what's going on.
I had had a few things progressing with my condition ( I have an auto-immune problem) and wasn't getting the answers to my questions from my consultant, so I just asked my GP if he could refer me. I'm afraid I can't remember how long it took. When I saw them at the QE, they said you don't need to be at the transplant stage for a referral, but I had, as I say been having a few problems and my condition was getting worse after having been stable for quite a few years. As it turns out I have a fairly unique problem, so maybe on paper I looked to be of interest?!!
With regards to pain, I really can't comment. I have never experienced this pain on the RHS. The liver does not have any nerves, so you will likely be told that the liver is not causing the pain, although many people do experience this RHS pain (just check out the search bar for upper right quadrant pain). The sac surrounding the liver does have nerves and if the liver is enlarged, it can put pressure on this sac and affect the nerves there. Equally well, if the liver is enlarged, then it can squeeze the surrounding organs and cause pain (everything is very tightly packed in there).
As I say, check out the search bar and you will find lots of posts about it, although whether there are any answers, I couldn't say. As for sleep, mine has been badly affected, so I have tried lots of things to help with that (all matural- reading, no T.V. for an hour or so beforehand etc) and yes people with all types of liver disease feel lousy, but not all the time. Over time you learn to listen to your body and take advantage of the good times!!!
I would recommend a good GP that listens to you and gets to know what is normal for you. Whilst it is a concern when things seem to be going wrong, I prefer to see my GP for help and use the QE when things are going really wrong. My GP (and many others at the same practice) is excellent and I find that they can deal with most of the stuff that comes up.
I too avoid painkillers. You should avoid NSAID's e.g. ibuprofen etc anti-inflammatories, since they are not recommended for those of us with liver issues. Again, check with your GP for clarity or consultant. You can take painkillers, but they are not recommended for long term use.
I appreciate the time you've taken to type that up. I'll get onto my GP this week. Once iv'e had my Fibroscan and had the diagnosis of Cirrohosis then i'll get my consultant to refer to QE. Cheers
Last thing sorry, would I be better waitng for diagnosis of cirrhosis from fibroscan before asking to be referred to QE or could i just ask gp as i am now
I should have said, I was stable for 8 years before things started to progress, so I was with the same consultant for 8 years (and still with them for endoscopies) before I asked for a referral. I would talk to the GP and explain why you want the referral and then they will advise whether or not they think it's worth waiting for fibroscan results or not. I asked for a referral as I wanted more answers as to why my illness was progressing. If I had remained stable, I would probably have waited. With regards to transplants, the rules changed this year and now you are assessed on blood results. Whereas before input was allowed from the necessary team, it seems the blood results now determine transplant referral.
Sorry I can't be more helpful with referral guidance. Only you can decide and your GP will advise. They may not feel it is necessary at the moment or they may..... All the very best
Detailed post, thank you. When you say "stable" does that mean you still had all the symptoms HE, and all the rest of it? Sorry if I sound stupid. So could I be classed as stable even with all these horrible symptoms? Cheers again
I have an auto-immune disease which is managed with meds. For most of the first 8 years nothing much changed and I was stable. However, without going into detail, I have over the last couple of years "progressed"- my words. So I have had bleeding varices and ascites, but never had HE (only a very minor form I think). So far meds have managed these problems along with a couple of stints in hospital. So despite having had bleeding and ascites, I still have largely remained stable, although I do think it is getting worse again at the moment with ascites, so I manage this with increased diuretics, which will hopefully bring the fluid back down (but may not).
I would never suggest anyone was stupid because there is so much to learn and everyone's situation is different. I still know only a smattering of what there is to know, so I ask a lot of questions of my consultants or whoever scans me etc. I can only pass on what I have learned over the 10 years. However, be aware that my condition is very different to yours and so while there may be similarities, there are many things I won't know since I have never been through what you are experiencing with regard to weight and fatty liver. I have no idea for example of how this is treated or how much of the damage can be reversed (if any). In my case, since the damage is caused by my immune system, the damage will not be reversed since I cannot remove my immune system!!!!
Generally, my understanding is, that as long as they get good blood results and everything else is managed, then you could be classed as stable, but still have other issues. The liver performs around 500 functions, which is why we know about it when it goes wrong. Have a list of your most pressing questions ready for the GP and any that they can't answer, get the consultant to answer.
Thank you. Will be seeing gp I morning. My partner says I have got a yellow ish look about me so I'm very worried . Will ask for blood test so they can check the bili levels
Anyone else suffer with this scary tremor ? Only slight but is getting worse ... could that be related to the HE
Been to gp today, got me to do urgent bloods will get result later today. She said my symtoms are worse than what my previous (4weeks ago) blood test showed. I explained the tremor confusion, pain, weakness, weightloss. I've lost 7kg in 6 or 7 weeks. She said my BMI is still abit high and im still classed as overweight but another stone or so puts me in the healthy margin. asked about referral to QE and she thinks as soon as my gastro does the Fibroscan that he will get me QE hospital asap. I Did the hand test in front of me and I don't have flappy hands just pretty bad tremor. I asked about rifaxamin but she didn't know anything about that drug. So best to just try hang on until gastro sees me again. It's so difficult I feel weaker each day will update later with blood results
Sorry for the Continuous posts, it just makes me feel bit better to have people in similar situations to talk to. Thank you for all who have posted with advice etc means a lot to me.
"Edit" CT scan normal.. not that it would show anything anyway?
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I need to know if my G.I doc realises how bad things are can you get fast tracked for a liver assessment? As far as I know, my kidneys,lungs,heart etc are all in good health.. so far. but i feel worse everyday... i can deal with the aches and pains but the HE is annoying as hell, forgetting everything. Also if I get admitted to my local hospital would they transfer me to the Queen Elizabeth in Birmingham, as that's my closest liver centre.. about 30miles away from me
I'm new here.
I'm new here and very worried
I'm new here. Been having upper right abdominal pain and been vomiting every time I eat and drink.
New on here, terrified, possibly Stage 2 and would love advice
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