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

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cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 11/18/2007 9:49 PM (GMT -7)   
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.
 
 
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 11/19/2007 2:46 AM (GMT -7)   
Hello Marji, Just wanted to to say hi. I am so sorry that you are feeling so bad. I am not very knowledgeable about NASH. I just googled it and learned a smidgen. I read that the pain is a part of it but it had said nothing about urination. Have you talked with your doctor about it? I know that for cirrhosis caused by hep c they have the patients take lasix and/or spironolactone for the water retention. Hang in there. Someone who is more knowledgeable maybe able to help you better than I. My thoughts and prayers will be with you.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/19/2007 4:44 AM (GMT -7)   
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

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/19/2007 4:47 AM (GMT -7)   
Marji

Sorry don't know what happened but didn't finish the post. You should really consult your doctor about the problems you are having. Please keep us posted on what you find out. My thoughts and prayers are with you.

Lucy

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/19/2007 10:23 AM (GMT -7)   
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.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/19/2007 10:32 PM (GMT -7)   
Marji, I love that Voltaire quote. However, I am receiving such great and knowledgeable care at Mayo for my liver disease and other problems, I cannot possibly apply that quote to them.

Prednisone will cause tiny stress fractures, and also is the leading cause of osteonecrosis (ON), also known as avascular necrosis (AVN.) I have ON, and have needed bilateral hip replacements, but it was not caused by Prednisone. The docs have told me it is due to long-term heavy drinking. However, when I was diagnosed with ON in 2002, I had not had any alcohol for 17 Years!!  (I just noticed I put 6 yrs., but that was when I was diagnosed with hep C. )  I now have 21 1/2 years with no alcohol!

As far as the decreased urine output, you definitely need to be seen for that. It often means one's kidneys are shutting down.

I had a biopsy of the left lobe of my liver, at the time the right lobe was removed due to cancer. That biopsy showed mild cirrhosis. Prior to that, I'd had the most sophisticated scans imaginable at Mayo and nothing showed up as cirrhosis. So it would seem that biopsy is the only way to tell.

I was interested in Pink Grandma's statement about cirrhosis causing ascites. I thought it was the hep C...and indirectly it was. I had the soft, big belly until I was placed on Lasix and Aldactone. I lost 10 lbs. of fluid in the first week. I had also gained weight that was not due to ascites, but inactivity and too much sugar in my diet. So I started adjusting my food intake, as far as what I eat, and lost another 7 lbs. I have gained back two, but had gone off my self-imposed diet of no sweets. So now I'm trying to lose that, plus several more.

Also, I have recently been having the "dropsies" and having memory problems. I thought it was just from getting older and maybe clumsiness like my grandmother had from age 65 forward (she lived to be 92.) Now I think it is worth mentioning at my next hepatology visit.
 
My liver enzymes have decreased since I had the hepatectomy of the rt. lobe of my liver, due to cancer.  They are not normal, but not as high as they have been in the past.

Post Edited (hep93) : 11/22/2007 1:15:56 AM (GMT-7)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/20/2007 6:58 PM (GMT -7)   
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.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/20/2007 8:55 PM (GMT -7)   
Hello Marji, I agree with Connie, you need to have doctors opinion about your decreased urine output. It very well could be your kidneys. And yes both Lasix and Aldactone are diuretics and they are used for high blood pressure also. Apparently they both must be easy on the liver as lots of liver patients are put on one or both of them. Actually with your Nash, maybe you should see your Hepatologist about it. They are a lot more knowledgeable about what medications are good and bad for the liver.

Connie, I believe that it is the cirrhosis that causes the fluid retention. It doesn't matter what has caused the cirrhosis....Hep C ,AI Hep, or just Alcohol. At least that is what my husband's doctors had told us. MD Chronie if you read this please jump in anytime give us the correct information.

Both you ladies give a knew meaning to being a hero. Because what you both are doing is nothing less than heroic. Here you are.. being so sick and still giving so much of yourselves to others. May God wrap you both in his loving arms and keep you safe. My thoughts and prayers will be with you both.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/20/2007 9:51 PM (GMT -7)   
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. 

Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/22/2007 1:26 AM (GMT -7)   

Marji, if you were a male I might suspect an enlarged prostate gland as being the reason for the difficulty urinating.  I started out with HCTZ, also, but for BP.  It did nothing as far as being a diuretic, that I could tell.  Mayo put me on Lasix and Aldactone.  If you take both, you do not have to take potassium chloride.  At first, they had me on the Lasix alone, and I just could not swallow those huge potassium pills.  This way, it is not necessary to take it.  I have always urinated often, but the diuretics definitely put me on the "throne" more often!  The HCTZ stopped working for my BP, so my PMD added Norvasc.  Pressure is now normal.

Pink Grandma, thanks for the input about cirrhosis as it relates to fluid retention.  Prior to being diagnosed after the biopsy May 15th, they had not wanted to put me on any diuretics.  I had some really bad swelling--about 4+ pitting edema in feet and calves.  Perhaps they thought it was due to hip surgery and would go away in time.  When they found I had cirrhosis, they prescribed the diuretics.

And Pink...you made me tear up for the 2nd time today, with your kind remarks.  Like you, it does me good to be of some help and to be able to share my experience with others.

Take care and have a good Thanksgiving.

Hugs,

Connie


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/22/2007 9:13 PM (GMT -7)   
Thanks Connie and again Pink grandma and hugs and happy Thanksgiving back!
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted Yesterday 8:02 PM (GMT -7)   
Sorry to sneak in here Marji - but I did't get to say goodbye. My email is krismcarmenathotmaildotcom.

Thanks - Kristin

Post Edited By Moderator (Pink Grandma) : 12/8/2007 10:39:16 AM (GMT-7)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted Yesterday 8:59 PM (GMT -7)   
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.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted Yesterday 9:06 PM (GMT -7)   
Thanks pink grandma,
I've been missing kris. I am so happy to hear from her. I hope you are doing well.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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