Advanced NASH, getting pretty sick, trouble urinating, bad gi pain

Hi--

I don't know if anyone here has really bad bad NASH. I was misdiagnosed with hepc (no one did a pcr, test false positive for hepc and riba inconclusive, one side of my entire family is dying from severe fatty liver and complications from it and all test false positive for surface antigen and consistently negative viral load and inconclusive riba) and the interferon alpha or the fatty liver gave me ai disease and made me really really sick, worst symptoms anyone had seen and they wouldn't lower the dose.  One day when I was 28 I got horribly sick, lost pigment, got hyperpigment and ai symptoms and through the roof liver enzymes.  

Now I'm in alot of pain, I've had like four bx and don't want another.  the last showed my liver as full of fat as it could possibly be in every cell.  Now my enzymes have mysterious dropped, though I feel worse than ever.  I feel that I am moving on to the next stage of cirrhosis.  My grandmother dropped dead young from it due to this condition, so it scares me.  I'm on pred for my AI symptoms and sjogrens, COPD with hypoxia, brain atrophy, anticardiolipin antibodies, and have polyendo deficiency that is worsening.  And lately I cannot urinate.  In 24 hours for my cortisol test I only went 600ml and this is normal for me.  Can my liver be causing this?  Also, I have red raw bloody patches on small and large intestine that bx as neg for everything so they assume ai disease.  I have neg anti-ds-dna, which keeps me from a lupus dx.  I feel that I am slowly getting very ill and no one has any answers,they just treat symptoms. My son is 19 and already showing problems that suggest he has this illness.  I'm not digesting my food and I have really bad upper abdominal and lower abdominal pain.  I'm constantly nauseaus and losing weight but now retaining tons of water from not urinating which is makeing me really sick.  Can this be from the liver?  Will the prednisone hurt my liver?  It seems to help some.  Thanks in advance for any ideas or help anyone can give.

 

Marji,

I also do onot know anything about NASH although I do take prednisone for AIH. The prednisone does help those symptoms, particularly with energy levels and feeling more like myself. As far as I know, prednisone does not do additional harm to the liver, although it has another whole list of problems associated with it, brusing easily, weight gain, diabetis, etc. I have had fluid retention problems and have been on both lasix and spironolactone and pink grandma mentioned, but I have never had problems with not being able to urinate like you are describing. Y

Thanks so much Y, pinkgrandma and Lucy. I've been scoped twice on the bladder and gi tract twice. I did have a cancerous colon polyp. I just have so much pain and tightness under and around my ribs and it looks like I'm 8-9 mos pregnant. Everyone things I'm pregnant. My belly's not hard like I've seen in friends with ascites, does it have to be? I guess maybe another ultrasound is in order, though I heard they don't show cirrhosis, does anyone know if that is true. I just don't want another biopsy. Can cirrhosis cause you not to be able to digest food? Is there a point in liver disease where your liver enzymes drop because mine were always consistently elevated and I'm on more meds than ever and sicker than ever--some int that list were dropped for allergies or just discontinued as not needed/working. I need to edit. I will ask about the lasix or spironactalone. I'm on pred now so doing better, but still having some trouble going and lots of abdominal pain. GI, hepatologist, primary care, two urologists and rheumatologist all pointing fingers in other directions. Lots of odd throat pain too, my grandma died of ruptured esophageal varices from severe liver disease and she didn't even know she had a liver problem and doing housework. It scares me.

Thanks hep93,
I'm so sorry you have gone through so much with your liver. No one deserves that. I hope that you are doing ok, glad to hear you are doing better. I will keep you in my thoughts and prayers that you stay strong and heal well. Someone on another forum suggested I get an abdominal MRI or at least of the liver, they have never done that so I could have some kind of architectural problem there and not know it. I've had some ultrasounds but the girl doing it had to ask me which side my liver was on! I wish Mayo took my insurance, I hear they are good. It's funny you mention the Voltaire quote, some people like it some don't so I changed it last night to a Calvin and Hobbs thing. I like funny quotes. It is funny that in a lot of cases Voltaire's quote holds true, and I think even some doctors would agree with it. After all, how much can you know the average patient in a 15 min appt and with all the multiple problems? They just do the best they can. I really want to try the Lasix and Aldactone. Are they like diuretics? Can they make you want to go more? I'm always thirsty but don't want to drink because of retention. I can't go the normal amount. Just dribbles. UT guys say nothing rong on their end.

I'm going to make an appointment to see if I cant be put on something for the fluid retention. I know a lot of that is fluid because if I would get the flu and have diarrhea I often lose about ten pounds myself from the water loss. Unfortunately, even the flu doesn't seem to keep me from eating something. I just don't eat much due to nausea. I want to ask about the Lasix and Aldactone and see what they say. I don't know if my primary care doc can deal with this or not. She put me on HCTZ a thiazide diuretic due to my blood pressure, but I don't think its working. I was on blood pressure medicine but my blood sugar goes so high and low that I passed out and had like a bp of 70/40 and had to go to the hospital. Now my bp is going up due to not being able to pass urine and the pressure is bad. I ask about the firmness because when I was in the hospital the people in there that had ascites all had it from medication and had it so bad that their belly buttons where popping out. I'm glad to know it can be soft. Thanks for the great info and helping me so much. I really appreciate it. Sorry so long, will try to be briefer.

Thanks so much to everyone for the help.  I have a hepatologist,gi, urologist and pcp and will talk to one or all about it and try to at least get my regular diuretic increased.  Now I have some possible explanation and a plan to try to improve things. Thanks so much for your help, esp. being really sick.  I will keep you all in my thoughts and prayers and I wish you all the very best in treatment and life. 

Thanks Connie and again Pink grandma and hugs and happy Thanksgiving back!

CNSKris said...
Sorry to sneak in here Marji - but I did't get to say goodbye. My email is krismcarmenathotmaildotcom.

Thanks - Kristin

Kris I just edited your email so that spammers couldn't just pick it up.