Poor Liver Function

Shell,

In the past 10 years, I have occasionally had blood tests showing out of whack liver chemistries. I was told that it may be due to a "fatty liver", which I think may not have anything to do with IBD, or my meds. It has to do with high tryglycerides. However, I have worried about all the meds I am taking effecting my liver function.

Also, I read your signature and wondered about your alcohol consumption, but I am sure this is an issue you must have discussed with your Doctors.

Years ago prior to my colectomy, Imuran was used to treat my UC and I was taken off of it after one month when my liver chemistries went absolutely haywire.

I would ask your Doctor exactly what is off and then report back as that may give others who are more astute (like Jan) something more to work with.

Thanks for your prompt reply. I will post the results when my dr rings me back. Probably at the end of the week. As I mentioned before my liver functions are never perfect but this time tey were alarmingly out (according to my dr) I haven't actually seen the results from the first tests but will ask when she phones me.

Thanks again

Shell

Most likely it is fatty liver disease, which actually IS associated with IBD. Other causes of elevated liver enzymes are gallbladder and pancreatic inflammation, also associated with IBD. But with those, you'd be more likely to be symptomatic.

However, the BIG worry when there is a significant jump in liver enzymes is PSC, which again is associated with IBD, and its course does not follow the course of IBD (meaning colectomy has no impact on whether or not you get it, or how it progresses once you do get it). The saving grace is that it is relatively rare. Usually, repeat liver function tests are done, followed by a MRCP (noninvasive). If that is positive, then ERCP and/or liver biopsy is next.

Hopefully, it is the simple fatty liver disease- treated by weight loss and avoidance of liver toxic substances (like alcohol and acetominiphen).

http://www.ccfa.org/resources/...disease-and-ibd.html

Jan

Thanks Jan!

I knew you'd come through with the voice of reason. My doctor did say she was testing for fatty liver as that was the most likely. I'm quite happy to give up my occasional glass of the old red stuff if it means it will keep things in check. As for following a low fat diet/losing weight. Well that is a problem for me as I don't eat a lot of fatty foods and conventional diets don't like my poor compromised gut so losing weight is a problem. I'm not overweight by normal standards but I am heavier than I like to be. I'll know more when my doctor comes back with my results. Got my appointment for the scan.... not til the end of January (thanks to our oh so slow health system) so will have a long wait for those results.

Thanks again for putting my mind at rest.

Shell

Shell: liver tests can come back skewed if you've been under stress. Mine were always great except for one time shortly after I returned from my father's funeral (involved a very long, stressful road trip). My enzymes were elevated then, but normal at follow-up.

And for what it's worth: I take milk thistle in an attempt to keep my liver healthy. There are lots of articles out there for you to research if you have an interest in this.

Shell, sometimes just a very modest weight loss will do the trick, like 10 pounds. You don't need a low fat diet, just a low calorie diet. Yes, stress does add a load to your liver because it increases your cortisol and other stress hormones, but if your enzymes are chronically elevated, more likely it is fatty liver disease. Like your doc told you, it is not the fact that they are elevated, but that there was a big jump. Repeating the tests will rule out lab error (it happens). And sometimes repeating in a few months will rule out a personal blip (like situational stresses). If they are still elevated, then they need to pursue other diagnostics. You don't want to mess around with PSC or liver cancer!

Oh, and yes, milk thistle can be good, but would not necessarily give you a license to drink or pop lots of Tylenol (just in case you were thinking in that direction)!

Jan

Thanks Jan and n/a,

I do need to lose about 10lb to be comfortable with my weight. I think my problem is probably too many carbs but as you are aware, high fibre doesn't fare well for me so I'm limited.

It doesn't help that I've just got back from a week cruising the Nile followed by another week at a 5 star hotel in Luxor. All that lovely Egyptian food! lol

Well I'll just have to try reducing my portoion sizes to see if that helps... and giving up the red wine of course!

Thanks again guys.

Shell

It doesn't sound like PSC. I have the world's most mild case of PSC (thankfully) but when it first set in it hit me like a truck. With a month I could hardly sleep, was itchy as all hell and looked somewhat like a basketball (color wise). After a couple of ERCPs it's never flared back up (here's hoping it never will). I don't want to give out false hope or anything, but it doesn't sound like PSC to me.

Epic,
I have PSC since around 1998 with no symptoms. I am curious as to what a "mild case of PSC" is.
Did your dr tell you it was mild or do you just refer to it that way since you no longer have symptoms? My blood tests have been normal for at least 12 years but my MRCP's do indicate I do have it. Did you have a stent put in when they did the ERCP's? I must say I am glad you are presently well.

Basically no symptoms. My numbers were a little high right after surgery, but they've come down significantly and are now only slightly elevated. I did have a stent put in during the first ERCP, but things opened back up so much that it was flushed out. The second was to clear out anything that was left.

I was actually more or less fine for about a year after that before UC hit me. I think I've finally got all this health business under control. Now to make up for the last 5 years.

Hi Epic and Donna,

Donna, that is what worries me. I've heard that a lot of people don't actually have symptoms of PSC until it's quite advanced so really nervous about the results of my latest blood tests. I should hear from my dr by the end of the week hopefully.

Thanks again for your input.

Shell

Best of luck Shell... <3

Shell,
I know it's easy to say don't worry but there is a very good chance it is nothing. My son had elevated liver enzymes a few years ago and I was worried to death of course. He was about 15 lbs overweight and was drinking a glass of wine every night. He lost weight and drank less and his enzymes have been now normal for years. Sleep well, dear.

Shell,
You probably don't remember me, but you were my first "chat" on this site so many years ago.
I also went through the "liver drill' recently. Turned out to be fatty liver, which seems like a catch-all disease. I'm also trying to lose 10 pounds and cut out some of the fat.
Hope your results turn out good.
Jerry

Hi Jerry!

Of course I remember you! How are you doing? Hope you're well.

I really do hope that this is something easy to fix. I could do with some tips on how to lose this 10 pounds. I'm struggling to find a diet that agrees with my gut. To add to the problems I also have a haitus hernia which is very problematic at the moment. I'm restricted with the sort of excersises I can do as I'm very prone to incisional hernias plus the cost of joining a gym here is very expensive. I walk almost everywhere (unless I have grocery shopping to do) but still find losing weight pretty hard to do. Any advice on losing weight would be much appreciated.

Thanks again for all your support.

Shell

A couple of years ago I lost 65 pounds. Gained back 25, so still battling it.

How did I do it? Severe calorie restriction, 960 calories a day, using meal replacements (160 calorie protein bars and shakes). Drank lots of calorie free drinks and 30 minutes a day on the treadmill. This was through a medical weight management program. I learned you can get by on very little food and you don't really need all those carbs.

Jan

Thanks Jan,

My doctor rang back today with some of the blood results, Most came back negative (hepatitis etc) but the liver enzymes are up on the last test. Not surprising when you consider that I've just come back from holiday so have been eating and drinking more than I would normally. However she said that they weren't dangerously high and she'd seen much higher. She's thinking along the lines of fatty liver too but this can't be confirmed until I have my scan on the 28th January.

In the meantime I'm going to try to lose some weight and cut right back on the alcohol (easy as I've not been enjoying it much lately anyway). Now I just need to get some excersise in and try to avoid overdoing it at Christmas.

Thanks again for all your support. I'll keep you posted on the scan results.

Shell

Sounds like a plan. I had double to triple of he normal values of AST and ALT for about three years. Stopping NSAIDs helped some and I wasn't drinking alcohol anyway. The weight loss made the real difference, but even gaining back some of my lost weight hasn't caused a relapse. I even now enjoy wine with my dinner most evenings. I wonder if getting my arthritis and cuffitis under control also helped.

I'm sure you'll be fine, although I bet you'll be on pins and needles until you can get that scan! Maybe there will be a cancellation....

Jan

Thanks Jan,

I shan't hold my breath on the cancellation. I have been told to stop taking paracetamol (Tylenol) which is a bit of a bummer because the only way I can control my fibromyalgia and neck pain is by taking paracetamol and Tramadol together. I don't take more than the stated dose and only take it twice a day max but it's the only thing that helps. Tramadol alone just doesn't touch it. As you know, I need the pain meds to get me moving and can't lose weight unless I can excersise. It's a catch 22.

I'll have to make the effort though because I'm not happy about the consiquences to my liver if left unchecked.

Thanks again for your words of wisdom. You rock!

Shell

Well here's an update:

After my ultrasound scan, many more blood tests and an MRI scan I have been diagnosed wiith PSC and fatty liver. The MRI scan didn't show any damage to my liver but my GI insists that I do have it as my blood tests confirmed it. I've been on on Urso for a month now which has slightly lowered the liver enzymes and my high cholesterol, which it seems is a symptom of PSC.

The fatty liver I'm dealing with by losing weight but it's the PSC which obviously has me in a spin. Just about all the info out there states that life expectancy after diagnosis is on average around 10 years. I've had elevated liver enzymes and high cholesterol for at least the last 3 years. My GI however is insisting that it can take decades to show up in the liver. I'm not sure I believe him though.

On top of that I need surgery for my haitus hernia because I am getting reflux in my airways. However, he won't refer me until my liver enzymes are more stable.

Anyway, thanks again for listening.

Shell

Shell,
I am so sorry about your diagnosis of PSC. However, your doctor is correct in saying that it can take years to show up in your liver. I was diagnosed with it in 1999 and figured that I had it probably for two or three years before that. Ok, that would be 17 years or so and I still have not had any symptoms. I also take Ursodiol and from what my dr says, it is still unclear whether it really helps but that is all there is right now. My enzymes have not been out of whack since shortly after I was diagnosed so I am fortunate there. It is quite a shock to learn that you have this terrible disease but I am ok with it now since I don't have a choice in the matter. I don't fret and just pray that when and if it does happen, I will be able to accept it and live the best life I can. My doctors said that the MRCP confirmed my diagnosis and that the elevated enzymes do not since there are other conditions that can elevate your enzymes. I just want to comfort you in telling you that I have had it for a very long time and so far so good. Let's keep our fingers crossed that there will be a new drug discovered so we do not have to deal with any more health issues. And I do hope your hernia surgery will come out well. Take care and think positive - you will be in my prayers.
Donna

Hi Donna,

Thank for so much for your kind words. Yes it was a shock to find out I have it. After everything I'd read about it on the net I was sure it was a death sentance. My GI has told me that it can take decades to show up in the liver so I'm a little bit calmer about it now.

I know there is no other treatment other than the Ursodiol and worryingly I had read that although it lowers the enzyme levels it may in some cases actually speed up the liver damage. Hearing your story has put my mind at rest somewhat. Have you been taking the Ursodiol since you were first diagnosed? I was wondering what, if any, damage it can cause after taking it over a long period of time?

My GI also told me I can drink alcohol with PSC. I find that a bit strange because although I know it's not caused by alcohol surely it can't do any good? Despite my footnote about the wine I really don't drink that much anyway but he said 2 glasses a day were ok? I've given it up to be on the safe side though.

Anyway, thanks again for putting my mind at rest. I really appreciate it.

Shell

Shell,
I think the liver damage occurs in high doses of Ursodiol. I take 300 mg three times a day and have been taking this dose for the entire time I have had PSC.

Regarding the drinking, my doctor said I could, if I have to, have no more than a couple of glasses of wine a month. Hey, I live in wine country and love wine but I do adhere to the rule and will save drinking to when I am out during a social event. I think you are right when you said "to be on the safe side."

There are several support groups out there which I visited early on but found them a bit depressing. When I start having symptoms, I probably will go back to visiting them but right now I am feeling well and see no need for it.

Please try not to worry about it. It is easy to say that but I really do not and enjoy my life to the fullest. I am sure when I get itchy or my bile ducts get blocked, it will be a different story but right now I am just happily cruising down life's path.

Take care, Shell, and enjoy this beautiful spring with the flowers and the birds and all the new growth that life has to offer. That in itself is healing to me.

I'm sorry about your new diagnosis and can imagine how terrifying it must be. However, there is a treatment which appears to work - vancomycin. Unfortunately many hepatologists are not using it/are not aware of it. I have several friends now who have but their children with psc on it and their UC and PSC is in remission. I think it's well worth a shot.

http://stanmed.stanford.edu/2011spring/article6.html

I have heard of the study and in fact, sent this link to my doctor at UCLA. It sure sounds promising and I am still waiting for her reply.

Shell,

Sorry to hear of the diagnosis of PSC but there appears to be hope on the treatment front.

KC,

That is an interesting article about vancomycin. It sounds similar to xifaxin insofar as it is not absorbed by the intestines. Also, this theory of "backflow of pathogenic bacteria" into the bile ducts as the cause of PSC, is an interesting theory. It is essentially the same theory as to why I have inflammation above my J Pouch, yet do not hold an official Crohn's diagnosis. It is believed that "backwash stool" as a result of fecal stasis due to pooling from my narrowed bowel above the pouch inlet is what is creating bacterial overgrowth in that area. It seems like the Stanford researchers think the same process can occur with the bile ducts. In essence, what is normally a street with one way traffic becomes a two way street in both cases, spreading the inflammatory disease process "upstream."

Donna,

I am on 250 mg or Ursodial 3 times a day so you've put my mind at rest about that. As for the support groups, well I joined one and posted on it but that was weeks ago and still no one has replied so I've given up. You're right, it is depressing when you read some of the stories but it's like this place. It doesn't give you a true statistic of how common or severe the disease can be. Only people who are having problems go there and I've seen no one there who isn't having symptoms.

The symptoms I've had on and off for the last 3 or so years are upper right quadrant pain, high cholesterol (which I've since discovered is a symptom of PSC) and of course the high liver enzymes. I've had a lot of reflux and indigestion/heart burn, but that could be mostly due to the hiatus hernia. I also get a lot of mouth ulcers and inflamation and ulcers actually on my stoma which puzzled the doctors as they didn't think they were Crohns related (my diagnosis was/is UC though doctors are divided between UC and Crohns). My GI said that the blood tests are showing that my UC is active and I also had infamatory markers showing up. All these symptoms had been a bit of a mystery as I no longer have my colon and am missing about 4 ft of small intestine but I'm now wondering if they too are all PSC related.

Killcolitis, thanks so much for the link. I'm going to check it out and mention it to my GI.

CT, thank you for your kind words. They are much appreciated.

Thank again to everyone for your continued support. You cetainly put my mind at rest somewhat.

Shell

Shell,

Do you still have your gall bladder? I had severe pain and indigestion some years ago and after an ultrasound, it was discovered my gall bladder had stones in it so it was removed. I have never had that pain again.

It is interesting that you said a side effect of PSC is high cholesterol because mine is very, very low. My good cholesterol is off the charts and i don't really know what that means.
I, too, will get the upper quandrant pain under my ribs. Sometimes it will not occur for months and then it will come back and cause pain but not for long. I cannot figure that one out. My liver enzymes have been normal for so long but when I excitedly told my doctor that, she said that is not an idicator that the disease is not progressing (did ya have to tell me that, doc). I don't get the mouth ulcers and wonder if that is a PSC symptom or maybe just an inflammation side effect.

I am glad that you are rather relieved and please don't think too much about it. You may be fine for 10, 20 more years - look at me - 17 years and I have not had one problem yet. It could happen tomorrow, yes, but are you going to worry about a car accident you may have tomorrow??

Take care and appreciate today.

Donna

Donna,

Yes I still have my gall bladder. I've had it scanned a few times in the past and it's always looked perfectly healthy. It was fine with this last MRI scan too. I think my good cholesterol is ok, it's the bad cholesterol which is up.

I am convinced that the upper right quadrant pain is when there is inflamation in my liver. The problem for me is that living on a small island means we have limited resourses and by the time I get the relevent tests the inflamation has subsided.

I have read that Ursodial won't stop the progression of the disease. Nothing will and even if we're not having symptoms it will still progress in it's own time. It will never reverse. The Ursodial only helps stabilise the elevated liver enzymes which in turn helps us start absorbing fat and vitimines again. That's what makes us feel well, not the fact that the liver has somehow stopped deteriorating.

I could drive myself mad with trying to analize all the information out there. I'm terrible in as much as once I have a diagnosis I want to know as much as I can about the disease I have to deal with. My other half Frank is the total opposite and thinks that ignorance is bliss but I have to disagree. I think it's far better to know what you are facing. It certainly can't be any worse than what my imagination can conjure up. I don't think it's a good idea to visit support sites because usually (as in this site) mostly people with problems post on them and that can skew the statistics somewhat.

Anyway, it's late here so I'll say goodnight. Thanks again for all your help Donna. It's good to actually speak with someone who has it and has a good outlook.

Take care.

Shell