Liver Mystery, how to find the answer? (Solved! Sort of!)

Hi guys, I'm new here but really hoping for help. I understand you are not doctors but I've learned to trust people who've been down the same road more than people giving advice from the outside. I guess I should start with my history.

In July 2009 I had a laporoscopic gallbladder removal. The next day i was back in ER with horrible pain and turning yellow. It took them several days to figure out they had damaged my bile duct. I had exploratory surgery and a roux-en-y choledochojujenostomy repair to my bile duct. After surgery I developed gastroparesis, and recurrent choliangitis. I had a bile duct stent put in and then removed 3 months later. I felt good for about 8 months. Last Oct. I started getting a new illness every week, always felt tired. In Jan/Feb I started getting mysterious fevers followed by dark urine itching so bad it sent me to the ER. They said my liver enzymes were elevated and to follow up with dr. I did so, he gave me antibiotics and I felt good for about month while they ran every available test. Everything came back negative or normal, even an ultrasound. I finally had a liver biopsy because my ALP was still high, and they said mild chronic inflammation of cells and mild portal inflammation. I have since had one more episode of dark urine that went away, but I've been itching insanely for about a week and half, to the point that I can't sleep. I have an exploratory ERCP tomorrow, and as strange as it sounds, I'm more scared they WON"T find anything. Dr basically said this is the last step, and if they don't find anything, it's the end of the diagnostic road, and I am so tired of not feeling well. I always have liver pain, sometimes it's sharp, sometimes it's dull, but it's always there, I'm always tired, not to mention the recurrent fevers and itching.
Does anyone have any suggestions or a clue as to what could be going on? Is there some other procedure or test I can ask for or do I just wait to get sick again and then hopefully they'll find something?
I know this is a lot to ask from a newbie, but anything at all would be helpful.

Post Edited (JoBelle) : 5/23/2011 9:38:08 PM (GMT-6)

Hi there, and thanks for your replies. This dr is kind of like my second opinion because he is just the most recent in a string. He did run all the tests for viral and autoimmune Hep, all negative. I believe he did one for PBC too and it came back neg. It's hard to remember because there were lots of abbreviations I didn't know. I did have a biopsy 2 weeks ago, the report says " mild portal chronic inflammation without interface hepatitis or fibrosis, mild increase in chronic inflammatory cells".
I've been reading a few other posts around here and it saddens me to see so many people going through much harder times. I'm sorry if my problem seems small in relation, I'm just trying to find answers.

I've tried just about everything topical and oral anti-histamines with no relief. My blili is not too high but I guess I might be super sensitive? It is actually better today than it has been in 10 days, with no obvious reason why. I've been on 2 antibiotics for a week to help the inflammation, maybe they are finally working. I was kind of hoping I would still be symptomatic tomorrow to increase the chance that they would figure out why. (I tell people I hope they find something and they look at me like I've lost my mind).

Thanks again for the responses, and the hugs. :D

Jo

JoBelle,

Do you have all your results from the blood tests they've done?  You could check those for anti-SMA, anti-ALK-1 or anti-SLA...those would be tests for AIH (autoimmune hepatitis) or AMA which would test for PBC (primary biliary cirrhosis).  Given that you didn't have interface hepatitis, I think that's why they ruled out AIH as interface hepatitis is commonly seen with it.  It could also be that this is a complication to having your gallbladder removed...you did have to have repair for the surgery...so maybe?

Which antibiotics are you on and for what inflammation are they supposedly treating?

There are several viruses that cause jaundice and elevated liver enzymes...CMV, EBV...and all the other viruses in the herpes family.  CMV and EBV are very common and usually present as flu-like illnesses...only sometimes do they come out and wreak more havoc.

St. Ives also has a good moisturizer for itchiness (I think it's the oatmeal and shea butter one), as well as the Gold Bond Connie mentioned.

I checked the paperwork and they did do anti-SLA and AMA which were both negative.I did not see anything about CMV or EBV though.

It is likely that this has something to do with my surgery, since I really haven't been well since then. I had the 1st stent because of a stricture in the bile duct scarring shut. I also have had weird horrible pain attacks that the dr said was adhesions. I think it is entirely possible that I have another stricture or issues from the adhesions, they just can't seem to find them.

I am on Cipro and Metronidazole, to relieve the assumed inflammation in my ducts to make the ERCP easier.

I will definately mention the ursodiol to my dr, he had said he might put me on cholestramine but he didn't think billi was high enough yet. I'm going to tell him he has to give me something, to at least try, because out of 20+ otc things I have tried, nothing works except taking melatonin + benadryl + atarax to put me to sleep for a few hours. It doesn't make sense to me why I'd be itching so bad, but I'm absolutely convinced it is related.

Thanks again for the help guys. If he tells me there is nothing else he can do, I'm going to travel to Lubbock (nearest big city) and see if I can find another one, a better one who won't give up! :)


Jo

No the only effect I seem to have from the Atarax is to get sleepy. Antihistamines are completely ineffective, except to help me sleep. Not a single thing I have tried has given me any significant relief, it just seems to go away on it's own after awhile. This is the longest it's lasted, but mysteriously after scratching holes in my skin for about 10 days, it's almost gone. I still itch, but I am able to ignore it now and not suffer with the intense itch and painful scratching. It always comes on after a little bit of mild jaundice. I may or may not get a fever, then my urine gets dark for a few days, whites turn noticeably (but not dramatically) yellow, and the itching starts.

The thing is my urine has been almost brown for several days recently, and when I told the nurse she said it was a common side effect of the Metronidazole. It will be interesting I think to see if it is still dark after the meds are out of my system.

I'm really just hoping when I wake up from my ERCP tomorrow they have good news, which is they found a stricture or a stone, and fixed it while they were in there, and viola, I should feel 100% in no time...However the fact that I have chronic inflammation in my 28 yr old liver and I don't drink makes me wonder if it is that easily fixed.

I admit that I probably shouldn't spend so much time on the internet searching and ultimately scaring myself, but none of the doctors seem overly forthcoming or overly concerned. I feel like they would be if they had to live with the symptoms, mild as they may be as yet. If nothing else you guys have given me some ideas. The best one so far being that this doesn't have to be the end of the search, and I can go and get *another* second opinion!

JoBelle

Well here's my update!

I had the ERCP and I did have some congealed bile in the common bile duct that he cleaned out, but it turns out that even with the colonoscopy scope instead of the usual ERCP scope, they couldn't even reach the site of my repair to know if was strictured or blocked or what have you.
So now I'm looking at having to make a trip to Dallas to the ERCP specialists there, and I'm very nervous of what they may have to say. I'm so ready to be well, I'll just be very apprehensive if they tell me I need another repair to get that way.
I am glad however that I'm being passed on to a more experienced doctor. I just wish someone could do something about the itch, my feet look like hell from scratching.

Thanks for all the advice and taking the time to read and respond to a less serious issue.

Bag Balm for itching... or what was that other stuff Gold Bond... and better to go to the best and get a more informed answer.... take a deep deep breath then go scuba diving... ooops wrong forum... take a deep breath step back for a minute... ur gonna be nervous but go see what they have to say... then talk it all over here.. ur not alone... weigh ur options.. then go forth go forth.. there is no less serious issue.. and that itching is not fun... Mike had that...take care and try and relax... worrying just gets u more stressed and is not healthy... positive vibes ... positive vibes.. Sandia..

JoBelle, please get some Bag Balm or Gold Bond Ultimate Healing Cream (not lotion.) In addition, try oatmeal baths. There are colloidal oatmeal baths you can get OTC at a drug store. Also, do a search here for itching. This is a topic that has been discussed a lot on this forum.

Hugs,
Connie

I had my ERCP follow up appointment today with my G.I. and boy, was it interesting.

First of all, let me say that I just took my first dose of cholestramine, and while it hasn't started working yet, just knowing the relief is coming and that I don't have to feel this way endlessly has helped my mood and stress immeasurably. Apparently I have developed a hypersensitivity to the bile salts because of long term low levels of them. Nothing much has changed since this morning. I am drunk on fatigue, and still insanely itchy, but I am euphoric and hopeful and did a happy little dance as I drank it.

Now for the rest!

He told me that the reason I had to have the repair in the first place was that they stapled my bile duct shut when removing my gallbladder, and after 5 days couldn't reopen it. The repair they did was in the shape of a Y, with 2 branches coming from and draining my liver into one opening in small intestine. The list is kind of long about how it is going wrong. First, even though bile is coming out into my small intestine, the opening is very small, when usually they make it very large. It is small enough that he had trouble seeing it with the scope, so that may be backing up the drainage a little by itself. The other problem is that there is a "foreign body" in the duct where the 2 top branches of the Y meet, which he saw with contrast but couldn't get to with the scope. Either because of this, or stricturing, the entire left branch of my repair and liver are barely draining at all, so little that he couldn't even get dye up there to see it on the films.

Wowsa. Not quite what I expected to hear, but I am so glad we have a path of care now. Due to my super raised LFT and billirubin, he referred me to an endoscopy doctor in Dallas, who then said it wasn't something he could handle endoscopicly and referred me to a surgical team at Methodist Medical Center, Dr. Mejia. I see them Wed. afternoon! My G.I. said another surgical repair is really my only long term option, as putting in and taking out stents every 6 months for the rest of my life would probably eventually kill me from reoccurring severe pancreatitis.

I remember the terrible pain after that big surgery, and I am nervous about that, and the complications, and also the cost. But it appears I am indeed fixable, and that makes me so happy. I know a lot of liver patients with Hepatitis or cirrhosis are not "fixable", and have no reprieve coming, no rainbow at the end of their journey, and so I am acutely thankful that it appears I do.

I originally came here because the diagnosis on my liver biopsy was mild chronic inflammatory hepatitis. I hope that it's still ok to post here now that I know it is not any of the viral OR autoimmune heps causing my problems, because everyone who answered my posts or guided me to look for more information have been a godsend.

Jo Belle,

Glad you have some news and some direction. Just my two cents worth, but have you considered trying to get in with the docs at Baylor Dallas?? Methodist is a good hospital, but I am speaking from experience, with liver stuff the docs at Baylor are the cat's meow!!!

I am just glad it's something they can "repair"....wowza, is right!!!

You hang in there!!

Mer

Well, I am back from Dallas. The news was not nearly as great as I hoped, but it is still good. I think I have a road ahead me (at least physically) similar to transplant patients. Indeed, my doctor is a transplant surgeon because I guess they are the only ones who know exactly how to fix this problem.

June 8th, I have to go back to Dallas for an MRCP and MRI so that they get a good picture of the internal anatomy of my liver, then I will meet with the dr. to see what it's all about. they wanted to do it sooner, because I'm a "ticking time bomb" as the dr. said, but we have no money so we had to come back for fiancée to work for a little while so we can afford to go back. (We live in Amarillo). Depending on my condition (which is worsening rapidly now), they admit me then and put some drainage tubes into the top of my liver, which will be either short term or long term. If they don't work as well as he hopes, 2 days later I will be having a repair-of-the-botched-repair surgery, and I'll be there 7-10 days. The success of this surgery depends a lot on the blood flow and how much of my original duct is left, and there are risks afterwards of course like structuring, and stones, and maybe a need to keep the drainage tubes indefinitely.

I'm more yellow than I was when I left, enough that every time we stopped so I could pee people looked at me funny. They did a million blood tests, and while my PTT is on the high end of normal still, my ammonia is slightly above normal. I thought I was just forgetful from loss of sleep, but I've read enough of the threads here to know that is probably why. I'm itching just as bad, and now I have diarrhea. I may call them and ask if increasing my cholestrymine would help that. I feel ill now, and tired, and so I need prayers I think, and this board more than ever! I had no idea obstructive jaundice could be so bad.

Wish me luck, and I hope this all can be taken care of on our schedule instead of an emergency situation. I'll update as I know things! Ty!

Jo