I am a 46 year old male who was diagnosed with Crohns Disease in early 2008. At the time of my diagnosis, the consultant mentioned scarring on my liver due to the Crohns ulceration. I was put on a course of steriods (prednisolone) initially for six weeks and then a further five weeks along with azathioprine. I have been on azathioprine since early 2008 and was told to stop taking them in September 2015 due to LFT results. I have always had raised LFT's since being on azathioprine but my consultant advised me that it was a side effect. I had looked up some of the issues with azathioprine side effects and discussed this with the consultant in 2014 but I was advised that I must continue with azathioprine and the side effects were the better of the two evils. Suddenly this September I am told to stop taking azathioprine. So far I have not had a Crohns flare up and the consultant advised I may be in remission. However, my last LFT's have caused him some alarm and now they are worried about my liver.
My last LFT results were: ALT 107, AST 61 and ALK 206. They have never been this raised before, just abnormal due to the medication - my consultant seemed not worried overe the years.
Two weeks ago I had what I think was an ultrasound scan (jelly and probe on right hand rib cage) and when he showed me the sliding scale diagram, my reading was about 7/10ths of the way along, so the liver has damage. I have a MRI booked for 15th December 2015, and Endoscopy (down throat) for January 2016 and I have had bloods taken on November 2015 - no results yet - this I understand was to rule out a rare condition that affects tubes at the bottom of the liver - that's all I know!
I have already been cleared of any Hepatitis problems by previous blood test.
Apart from Googling myself to death, I feel fine, my stools are okay, passing water okay, my appetite seems fine, I am not jaundiced and no sickness or confusion. I have on very rare occasions had some slight itchiness on my arms but I thought it was dry skin, applied some moisturiser and it was then fine.
I am trying hard to remain calm and stay positive. Some of what I have read on the internet looks terrible however my consultant did say that a scarred liver can still work normally even though damaged.
My next LFT test is in two weeks and I am keen to see if the levels have dropped of course. The sickening problem at the moment is being left in the dark. I have asked three times if I could have the results of the blood test taken on 11th November and just silence so far (okay, I have only been asking for this week) but the hospital must know that their patients will be concerned - a little consideration would be nice especially as all I am now thinking about is if I am in trouble, what am I going to do? I am 46 with wife and four kids!
The wait is awful.....
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HopefulAl
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The scan you are talking about sounds like a Fibroscan to me, its similar to the ultrasound but much better at detecting Liver scarring. here is a Fibroscan scoring card:
If you were 7/10 along this scale this would indicate F4 or Cirrhosis im sorry to say.
If the cause is removed then the Liver can recover some what and many live for years without issues. The endoscopy is to check for veins that get over pressured due to blood flow problems in the scarred Liver, if they are starting to bulge then they can be banded so you don't have an internal bleed.
as far as im aware crohns can cause Liver problems itself with toxins going into the blood stream and stressing the Liver. Add the pills to this and your Liver has had a very hard time I would say.
I am thinking that your doctor was incompetent for not looking at the raised LFTs more closely right away, by not acting you have sustained more Liver damage than you should have.
Thanks for your reply, I kind of guessed I was in a bit of trouble due to the Fibroscan.
I am just hoping that without so many of the symptoms so far, they will find the route cause and and get me stabilised as best as possible. I was a very occasional drinker but have stopped completely and I have always had to avoid fried food or foods that I was sensitive to.
I guess I am going to have to hope that they can help me now even if they are a bit late.
SO sorry you have this situation. Hopefully without the pills the Liver inflammation will stop so it will start to heal, atleast as much as it can. At the moment your Liver would be considered to be in "compensated" state where is has enough cells to carry out its functions. The horrid things you read about online are when the Liver becomes "de compensated", although with Cirrhosis the bleed risk is always there even if it is "compensated"
The Fibroscan can indicate the Liver is stiffer than it actually is due to inflammation(high ALT), but this would only be by around 2kpa on the scale. So what you want to see in your next results is the inflammation stopped or atleast subsiding and normal bilirubin, albumin etc. The future is not lost yet because your issues aren't alcohol related a transplant could be an option in the future.
Thanks again Ralph, in a weird kind of way I am looking forward to my next blood test to see if coming off the azathioprine will make the difference. I am not sure but have heard that azathioprine can take up to three months to fully leave my system so I'm not too far from that now. Fingers crossed now.
I would double check first if the scan was a fibroscan or ultrasound. Both are very useful tools for detecting damage to the liver in different ways and for full investigations, both should be done although the CT will show even more detail and can give a very good picture of the insides!
There are a few auto- immune conditions that affect the liver that the consultants may be investigating particularly as you have chrohns- it is possible to 'collect' auto immune condition so. 2 affect the bile ducts- primary schlerosing cholangitis (psc) and primary biliary cholangitis (pbc). There is also auto immune hepatitis in which the immune system rejects the liver and can cause inflammation and damage to liver cells which can lead to fibrosis or if left too long without treatment, cirrhosis. These are all manageable conditions. I have had AIH for around 20 years. Mind was unusually aggressive and I have recently had a transplant but lived with cirrhosis for probably about 12 years and lived a full and active life up until about 2 years ago when I went into decline. I would definitely recommend that you go the the British liver trust website britishlivertrust.org.uk and find their leaflets in the mentioned conditions. Transplant is an unusual resort for all of these conditions as with treatment the liver can stabilise. If there is cirrhosis, it is unlikely to heal completely but if it is fibrosis, this can, with care, treatment a cry looking after yourself, be reversed. I would also take a look at the diet and liver disease leaflet by the British liver trust.
Apologies for the long message. Hope it helps and feel free to pm me anytime
Thank you so much for your reply and no apologies needed, I am grateful for your detailed explanation.
I have much to be hopeful for after your explanation that what I may have is manageable. Ralph in a previous reply gave me hope to. You read the Internet and convince yourself that you are on death row!
If you don't mind I will keep your details and let you and Ralph know what my next LFT results are. I think it is great that people who are already suffering come here to help those just starting to suffer. I will be an active member now.
You are very welcome. Be cautious of the Internet and find trusted sources of advice such as the British liver trust, the NHS and medical journals. There is an awful lot of scaremongering and rubbish out there!
Many of us with AIH like Jenni take Azathioprine to control the AIH. Some people however don't suit Aza and like you it seems to cause liver problems rather than control them. However there are alternatives to Aza which we can take. It concerns me that your consultant advised you to keep taking the Aza and told you that the raised liver enzymes were side effects you had to put up with.....until finally they have got so significant you have had to stop taking it. I would be asking why they kept you on Aza when clearly it was not doing you any good and why they didn't switch you to a different treatment ages ago. I'm not sure why you have been left with no medication if it is making you poorly, surely you are at risk of a crohns flare?
Thanks for your reply. I have never been offered anything other than azathioprine and my LFT's have been raised/abnormal since I started it in early 2008. The consultant said it was a side effect and was acceptable. In 2013 I read about the side effects of azathioprine and had a minor tantrum and threatened to stop taking it but I was strongly advised to stay with it. I have been off azathioprine for over 8 weeks now and thankfully no flare up yet. My consultant said the azathioprine may have now put me in remission. So I am off azathioprine, no substitute and having these new tests as he is worried about my liver. MRI on 15th December. I feel a bit in limbo at the moment but I appear well and with none of the listed symptoms associated with cirrhosis. I am trying to remain calm and level headed and hoping for a better LFT in two weeks time.
Even the basic NHS website online has mercaptopurine as an alternative to Aza for treating Crohns, so if your Crohns does flare I would be asking about alternative immunosuppressants to keep you well.
Thanks Bolly, I have no idea why I wasn't offered an alternative but will keep what you have said firmly on my mind. I hate to say I always found the consultant a bit dismissive. I don't actually see him again till 28th February, he has pushed me on to his colleague who is more a liver specialist.
If it turns out you do have a damaged liver perhaps you are better with this new doctor. Have you looked at the Crohns and Colitis website which is full of useful information about Crohns and current treatment, My brothers adopted daughter has been diagnosed with Crohns aged 10 and her first line treatment was a food supplement (can't remember the name) to calm the flare and then steroids. Another drug to use is 6MP which metabolises differently to Aza.
Hi Bolly, I will certainly have a read, I was on steroids initially with the azathioprine but came off steroids mid 2008. The new consultant looking at my liver is only at the start of his tests but there appears to be a standard wall of silence. You tell a guy he has liver problems, order tests, at least have the decency to give the results after each test? He ordered specific blood test and this was done 11.11.15, to rule out another possibility and I am none the wiser. I know they are very busy but he could ask one of his junior doctors to call? Also, Torbay Hospital is not a huge hospital so I had hoped they might have spared 5 mins to keep me up to speed.....oh well 😔
I never get results of hospital blood tests except many months later when I go to my next clinic appt, by which time they are at least 3 months out of date! However patients on immunosuppressants should have their bloods monitored, my GP does it monthly on behalf of my liver specialist. I DO get printed copies of these test results...but not automatically, I have to ask nicely each time at the doctors, and give a valid reason why I want copies. It varies hospital to hospital and GP to GP what their practice is re test results. I get told if anything is worrying but told nothing if everything is ok. When do have a follow up with this new guy? You will most likely get a chance to see your test results then. You could try ringing the consultants secretary, explain you are anxious about your results and see if they will send or fax them to your GP for you.
I have 4 weekly blood tests at my GP practise as part of my azathioprine prescription, my LFT's have been raised since 2008 but more abnormal just lately. I have had all these results from my GP (they call me within 48 hours of every 4 week blood test to tell me my LFT's are high). My last appointment at the hospital was with a different consultant gastroenterologist as my normal consultant referred me to him for the liver scan I just had ( I think this consultant is more liver related ). After this scan I had bloods taken (11th November) to rule out a rare condition, he mentioned something about pipes at the bottom of the liver. I have been trying to get the results of this test with no success. The new consultant was off all last week and all next week. I left a message with his secretary (no call back) and my wife has spoken to the secratary of the consultant who treated me initially back in 2008 ( she sounded like she was going to help ). My next appointment is 15th December for an MRI scan but it would be nice to know if I do or don't have the rare condition thingy. Let's hope tomorrow/Tuesday brings some news.
Thanks for all your replies and helpful chats, it helps me keep a balanced view after googling myself to death already 😉
Going back to your original post. When the consultant said you might be "in remission" did you understand by that he meant your Crohns being in remission? If so, I assume that means you have had no symptoms from your Crohns for a while, no pain, no inflammation, no bowel problems etc. I'm posting a link to a NICE document about maintenance treatment for Crohns patients "in remission". It would be interesting if your specialist is on the same page as NICE re drug options and how to maintain a patient in remission.
The liver issue is obviously the important thing at the moment. If your enzymes have been elevated for 7 years then it's not surprising your Fibroscan showed damage. Results are usually given in kPa rather than just showing the patient a graph or sliding scale, but there we go, perhaps you will get the actual score when you see the gastro guy.
Yes my GP does 4 weekly tests while on Aza, it's such a shame they have presumably not questioned the specialists decision that you, the patient, stay on Aza long term despote elevated enzymes. Was it really better to be putting up with the damage to your liver the Aza has caused compared to damage to your bowels from a Crohns flare. One hopes the consultant had your best interests at heart and was trying to avoid surgery on your bowels, but I am still baffled as to why no alternative drugs were offered. Did you research the condition and treatment yourself when diagnosed or have you preferred to leave all decisions to the doctors?
It seems you have ended up in a risk-benefit dilemma. The risk to your liver from the Crohns meds compared for the benefit to you if you avoid a Crohns flare. Or the risk of a flare by coming off all meds versus the benefit to your liver by being med free. Which option do you prefer? Would you like to try a different immunosuppressant to hopefully keep the Crohns in remission, or would you rather go med free but risk a flare?
I wonder if by "pipes at the bottom" he means bile ducts. If so, why not say "bile duct", presume you are of normal intelligence, lol!! If he does mean bile ducts they are probably testing for PBC as this might account for your itching. The MRI is detailed enough to pick up any problems.
Did the doctor who ordered the endoscopy say what they are looking for? Is it inflammation caused by your Crohns, or do they suspect you have cirrhosis and want to check for varicies? Have you had an endoscopy before?
Hi Bolly, yes, I understood that he was referring to my Crohns when he mentioned remission. Although I have not yet had a flare up, I personally feel that it may only be a matter of time.
I have read bits and pieces about Crohns but I rely on the hospital and consultants to do what is right and best. I have my doubts about the consultant that has been overseeing me for the last eight years now. Having questioned him about the azathioprine side effects he was quite dismissive and insisted I continue.
Given the choice I would have most certainly chosen to try other Crohns medications and avoid the azathioprine side effects. I was never given any other options.
This new consultant who ordered the specific blood test while I was with him works in the same gastroenterology department and so I feel he will cover over his colleagues dismissive ways, however he read my notes, saw that I had recently been taken off azathioprine and blurted out how that was a good thing as this was the wrong drug if I had a liver problem!
I am a chartered surveyor and so educated and would appreciate better explanations and when I see him next, I will tell him so.
I still don't have the results of my blood test of 11th November which was to test for the pipe thingy which I now, thanks to your posts, understand to be for PBC. If I do have this I understand that it is treatable? I still don't have any of the listed symptoms for cirrhosis and although I had itch forearms about four times this year, I moisturised and it stopped after fifteen minutes or so.
I am quite sure that my liver has issues but is it heavy scarring or inflammation? The MRI on 15th December will tell more I believe.
I feel well in myself, eating healthy, staying clear of alcohol (only used to consume 4/5 units a week at most, sometimes just 2/3) and am reasonably active through my work and home life.
As for my tests booked, I have not been told what they are for but by reading posts on here I get a better idea. I have had two colonoscopies but never an endoscopy, about to have that pleasure early January 😩
We are all different when it comes to our health, some like me tend to be a bit obsessive and want to know everything. Some find it easier to cope by not over thinking things and trying to be "normal" and if leaving everything to the docs reduces stress or anxiety then so be it. Unfortunately not all doctors work the same way, and in some cases docs ignore recommend guidelines and just do their own thing. In your shoes I would be questioning my doctors decisions a bit more, even though you may risk upsetting them briefly. After all, it's your body and your life and they don't always know best - they may know how to treat from a textbook but I bet they have never actually had Crohns or taken the drugs you take! I advocate becoming an expert patient, but not one that quotes Google, they hate that! Just read up from the Crohns website where there will be accurate information and no scaremongering.
Endoscopies can be done with just an anaesthetic spray to the back of the throat and the patient fully awake. Doctors prefer that as it's quicker and they can see more patients that way. I always have sedation. It might take longer and might be the docs second choice but it means I don't remember the procedure at all. Who wants to be awake gagging when they stuff a camera down your throat - sword swallowers excepted.
I agree Bolly! 😄 So I have a small update. Having bugged my hospital my liver/gastro consultant called me yesterday. The blood test he took on 11.11.15 to check for what he called "condition affecting pipes at the bottom of my liver" are normal. So it looks like my billiary system is ok? Due back to hospital on 15.12.15 for an ultrasound (not MRI as informed previously). Am told that the radiology department will discuss the scan with me briefly then........really? Camera job booked 5.1.16. So, one down - two to go 👍🏻
If its a consultant radiologist doing the ultrasound then I guess they are qualified to interpret it, whereas a radiographer is more of a highly qualified technician (have to be careful what I say as dont want to offend any radiographers!). My radiographer told me what he found on the last US he did, and caused a right stink with my hepatologist who felt he should not have attempted a diagnosis without all my medical history.
yeah, I am not going to get carried away thinking that the radiologist will give me a brief on my scan, I will expect them to tell me to wait for my consultant to call me
So an update, I had an Ultrasound today with a consultant radiologist, who couldn't have been more helpful if she tried 😄 She had a thorough look and said that the surface of my liver is a bit course and there were some pockets of fatty deposits. My liver was of normal size, good blood flow and no fluid in the stomach. She will send the results to my liver gastroenterologist but did not seem worried and gave me much reason to be hopeful now. Got my 'down the throat job' on 5th Jan and hopefully that will be fine too.
Hi Bolly, so I gave you my scan update which seemed positive. I have just spoken to my GP who had my recent 4 weekly blood test results, I am up in two out of three sections!!! My ALT has dropped from 159 to 140. My AST has risen from 78 to 87. My ALK has risen from 206 to 256. Despite these results I have had a normal blood test back for PBC and my ultrasound showed a normal sized liver, bit course, few small fatty deposits but good blood flow and no liquid on stomach. It doesn't make sense?
Doesnt sound like they have got to the bottom of your elevated results yet. Good that the ultrasound didnt pick up anything worrying. The coarse liver texture is consistent with having some liver damage, possibly inflammation or fibrosis i dont know for sure. Not sure if purely 'fatty' liver would account for enzymes which are still out of whack. Hmmmmm, curiouser and curiouser as Alice would say.
Hi Bolly, had my 'down the throat camera job', bloody awful that was too, the consultant who did it was the very first consultant I saw 9 years ago for my first endoscopy. He said no varicies, all clear right down to lower duodenum. Back to the liver consultant on 20th for a re-group after all my recent tests. LFT's still abnormal, in fact last set worse than the ones four weeks before! No idea what my body is doing 😏
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