Cirrhosis Support Group
Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and...
Hello everyone! I have been going through a lot lately and wanted to ask you some questions.
I think I've have figured out where I'm at right now with this Liver thing. I have a problem with fat malabsorption according to the November 2010 stool result, and also I had one done in 2/09 that was botched up and the Dr. at that time didn't ask me to retest it, which I'm really mad about! This was right around the time when I was having so much pain in the abdomen a couple of months after the Gall Bladder was removed and before my sphincter of oddi was cut (which was a mistake in my mind on the doctor's part) Had the stool test been redone they may have realized that I had Steatorrhea/Cholestasis. I am so fuming right now! They would have done a biopsy on me because my liver enzymes had shot up again and again!
Anyway, now that I suspect all along I have Cholestasis what stage of Liver Disease am I in? Do you know? What do you do for it? What do you eat. I keep telling the doctor's I'm losing weight and not absorbing fat and what do they do nothing except for telling me to keep eating.
I ate a few cups of organic roasted almonds (roasted them ourselves) yesterday and the night before last and I have noticed my vessels bulging in my hands and trouble with digestion (sick to my stomach). Boy, did they taste good! What's real interesting is that I have a fungal infection in the gut and I now believe this is because of poor digestion related to not making bile. How is one to know if they're not producing bile? And another thing is that's weird is that the chronically elevated AST/ALT, ALP are way back down in the normal ranges. For the past 3+ years that have been elevated. Everytime I have been given a drug they go up then come down. The ALP once was 147.
This has been so complex because the stupid liver doctor didn't do the liver biopsy back in 2/09 when the liver enzymes went up again. He said in his Clinic Visit notes in 11/08 the next they went up he would do a biopsy. I'm so mad!
Now he no longer works at CPMC and I have a new doctor that just keeps saying how unfortunate I am and because I'm a JW they won't do a biopsy anyway now! I don't totally buy into this! How many times does one bleed out on a Liver Biopsy and need a transfusion!
I'm now 112 pounds, down from 176 pounds in 12/07 and I continue to lose weight. I'm concerned I have Cachexia and am literally hungry all of the time and fatigued.
I went to a new Hep last week and he just told me how concerned he is about my nutrition. And when we asked him about the increased fat in the stool, his comment was "There are a number of reasons for that". I did ask him about Cholestasis, that being my problem, and I can't remember what he said now, but he just basically told me to go to Stanford and see this GI doctor and to keep eating. Well I eating and I am continuing to lose weight and I think it's" Marasmus" a form of Cachexia. I found out later that the GI at Stanford treats patient's who have cancer. Very Interesting!
I am trying to survive all of this but what a nightmare this has been. I have no quality of life, I'm at home all of the time because I'm ill and weak. I'm trying to get SSDI and State Disability through my Counselor. This has been so stressful for me to deal with! Ongoing illness. Oh, by the way the Hep told me that this is not liver related and I beg to differ. I know my body and I can tell that something is not working, like my ability to break down my food! My BM's are foul smelling, float, shiny and green! And I have constipation! Everyday it's hard to go!
I just wanted to know there's someone on this website that has Cholestasis that can give me some help with how to digest my food and what food's do they eat! I can go back in time and explain the details of how this all got started and I know now why I had Peripheral Neuropathy back in 2006 and all of the nutritional deficiencies that started back then.
Thank you to all for listening and possibly getting through this difficult time. I have anorexia and muscle wasting, to add also. I cry when I look at my body and I say to myself, why don't the doctor's tell me to my face that I have Cachexia? My skin is hanging on my bones! And there is no fat on my bones either! Have the doctor's just basically sent me off to die?
Marjorie
I think I've have figured out where I'm at right now with this Liver thing. I have a problem with fat malabsorption according to the November 2010 stool result, and also I had one done in 2/09 that was botched up and the Dr. at that time didn't ask me to retest it, which I'm really mad about! This was right around the time when I was having so much pain in the abdomen a couple of months after the Gall Bladder was removed and before my sphincter of oddi was cut (which was a mistake in my mind on the doctor's part) Had the stool test been redone they may have realized that I had Steatorrhea/Cholestasis. I am so fuming right now! They would have done a biopsy on me because my liver enzymes had shot up again and again!
Anyway, now that I suspect all along I have Cholestasis what stage of Liver Disease am I in? Do you know? What do you do for it? What do you eat. I keep telling the doctor's I'm losing weight and not absorbing fat and what do they do nothing except for telling me to keep eating.
I ate a few cups of organic roasted almonds (roasted them ourselves) yesterday and the night before last and I have noticed my vessels bulging in my hands and trouble with digestion (sick to my stomach). Boy, did they taste good! What's real interesting is that I have a fungal infection in the gut and I now believe this is because of poor digestion related to not making bile. How is one to know if they're not producing bile? And another thing is that's weird is that the chronically elevated AST/ALT, ALP are way back down in the normal ranges. For the past 3+ years that have been elevated. Everytime I have been given a drug they go up then come down. The ALP once was 147.
This has been so complex because the stupid liver doctor didn't do the liver biopsy back in 2/09 when the liver enzymes went up again. He said in his Clinic Visit notes in 11/08 the next they went up he would do a biopsy. I'm so mad!
Now he no longer works at CPMC and I have a new doctor that just keeps saying how unfortunate I am and because I'm a JW they won't do a biopsy anyway now! I don't totally buy into this! How many times does one bleed out on a Liver Biopsy and need a transfusion!
I'm now 112 pounds, down from 176 pounds in 12/07 and I continue to lose weight. I'm concerned I have Cachexia and am literally hungry all of the time and fatigued.
I went to a new Hep last week and he just told me how concerned he is about my nutrition. And when we asked him about the increased fat in the stool, his comment was "There are a number of reasons for that". I did ask him about Cholestasis, that being my problem, and I can't remember what he said now, but he just basically told me to go to Stanford and see this GI doctor and to keep eating. Well I eating and I am continuing to lose weight and I think it's" Marasmus" a form of Cachexia. I found out later that the GI at Stanford treats patient's who have cancer. Very Interesting!
I am trying to survive all of this but what a nightmare this has been. I have no quality of life, I'm at home all of the time because I'm ill and weak. I'm trying to get SSDI and State Disability through my Counselor. This has been so stressful for me to deal with! Ongoing illness. Oh, by the way the Hep told me that this is not liver related and I beg to differ. I know my body and I can tell that something is not working, like my ability to break down my food! My BM's are foul smelling, float, shiny and green! And I have constipation! Everyday it's hard to go!
I just wanted to know there's someone on this website that has Cholestasis that can give me some help with how to digest my food and what food's do they eat! I can go back in time and explain the details of how this all got started and I know now why I had Peripheral Neuropathy back in 2006 and all of the nutritional deficiencies that started back then.
Thank you to all for listening and possibly getting through this difficult time. I have anorexia and muscle wasting, to add also. I cry when I look at my body and I say to myself, why don't the doctor's tell me to my face that I have Cachexia? My skin is hanging on my bones! And there is no fat on my bones either! Have the doctor's just basically sent me off to die?
Marjorie
-
I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
-
I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
In my heart I fear that I don't have much time left, I have developed more anger inside, which is not like me at all. For the past few years I noticed I started getting Paranoid and not making sense at times. I will say things that don't make since. My husband doesn't know whether to believe me or the doctor's and that hurts terribly. Doctor's do make mistakes and they are not all knowing, so when I ask my husband to believe me he has a hard time. I think the Doctor's are wrong. They don't seem to have the time to spend to really ask the difficult questions. I'm just a very unfortunate lady, according to the previous Hep who saw me 11/2010, when he said it's too bad that I hadn't been seeing the GI motility doctor all along for the bacterial overgrowth. Well, the GI doctor dismissed me from his practice right around the time when the stool specimen was done improperly, (due to their staff not giving me the appropriate instructions) and the labs were showing some kind of infection was going on in my body. (fungal infection in the gut). So, I was so sick that I didn't think about getting another GI doctor and before too long the LFT's were up again and the doctor's decided to have my Sphincter of Oddi cut, which I believe was cholestasis. I ate some ground flax seeds which I hadn't eaten any fat for a few months, after the gall bladder was removed and I had pain in the upper abdomen liver area after eating any fat or animal protein. I think this was definitely a bile issue and I have told them this!
Marj
I'm hungry all the time now. After eating those nuts and scrambled egg yesterday, it just feels like something is backing up and not being digested. I was so tired this am too! It's like I'm not getting any nutrition from the foods I'm eating. So today I don't think there's any bile available to help me to digest my food. Remember my Sphincter of Oddi is cut so supposedly the bile is coming down constantly! Which I am doubting!
Back in 12/07 when the LFT's shot up for the first time and I stopped drinking, I remember having this incredible itching on the side of my thigh and couldn't figure out why and awful abdominal pains. This was the start of trouble-I did drink wine for a 8-10 year period, pretty moderate-to-a little heavy (on the weekends 8-10 glasses of wine) I also found out last year that I'm missing the Glutathione gene totally in the liver and I have been nutritionally deficient (B1, B3, B6, Folate, B12, antioxidants, D, E, K2, CoQ10 and serine) I have told the Hep's about the nutritional deficiencies and he wouldn't even consider the Holistic doctor's labs! When I die, I will be getting an autopsy, even when we can't afford to! There will be a lot of explaining to do from the Hep's. i would not want to be in their shoes!
About cholestasis-
Here are some things that you may already know:
Our liver creates bile. The bile flows through ducts inside of the liver (intrahepatic bile ducts).... then leaves the liver, traveling through bile duct to the duodenum (small intestine.)
That trip (from the liver... to the small intestine) is called "bile flow".
If anything interferes with bile flow (example: a narrowed or blocked bile duct)--- it can result in stagnant bile backing up in the liver. (Stagnant bile = bile stasis = cholestasis)
Cholestasis causes the bloodtest for alkaline phosphatase to rise (and the bloodtest for GGT and bilirubin may rise too.)
If your alkaline phosphatase bloodtest is high, your dr. would want to figure out the cause of the cholestasis. (Example-- they'd want to make sure your bile ducts were ok and that bile is able to flow from the liver to the duodenum.)
(They'd also want to over any medications that you take. (Many medications (some prescriptions, and even some over-the-counter medications, supplements, herbs, etc.) can cause alkaline phosphatase to rise.)
"Anyway, now that I suspect all along I have Cholestasis what stage of Liver Disease am I in?"
When bile has a hard time leaving the liver, stagnant bile can build up in the liver and cause liver inflammation.
(Liver inflammation can possibly lead to damage (fibrosis, and then eventually scar tissue (cirrhosis).
A liver biopsy would show whether or not there's any damage to your liver.
A liver biopsy shows:
the grade of inflammation (usually on a scale of 0 to 4)
(0 being no active inflammation... 4 being alot of active inflammation.)
-and-
the stage of fibrosis (usually on a scale of 0 to 4)
(0 being no fibrosis.... 4 being cirrhosis.)
Is there anyone who can help me? For the past 3 years, between the insurance and me, I have definitely spend close to $100,000 in medical bills. When will they stop?
I am so fearful of taking any medications because it causes so much pain in the liver. Last 8/2010, I was at Stanford Hospital, having a specialized test called an Endoscopic Pancreatic Function Test with Secretin, to check to see if the Pancreas was secreting Pancreatic enzymes. And it was normal. Right after I was brought into the Recovery Room I started developing these severe pains in the liver and no one believed me. I understand now because of the Cholestasis I'm not able to eliminate drugs very well because the bile carries the drugs out of the liver, coupled with the genetic fact that I'm totally missing the Glutathione gene, which helps to detoxify the liver, I feel like screaming at these doctor's. No one now will give me a liver biopsy because of the risks involved with bleeding and my liver enzymes are strangely lower than normal when I had my blood checked last 11/2010. They have been chronically elevated for over 3 + years. I feel so terrible! Do I need a Liver Transplant if I'm not able to digest my food properly? Do you have any suggestions anyone, please! This is a nightmare! I'm so tired of trying to search for answers anymore. I really need someone to help me out I have already have my Memorial Planned because I'm so sick.
When the original Hep told the Psychiatrist it was ok to prescribe Celexa for me after I had just gone through SOD and GB surgery back in 7/09, I was very leary, but went along with it, and paid dearly for this because my liver started aching within 3 weeks of taking it and I had major sweating and chills and my liver enzymes shot up. Everytime I had surgery the LFT's shot up so the doctor's kept attributing this to the surgery and not further Liver Inflammation and injury to my bile ducts and liver. Who are these doctor's? Who gives them the right to practice medicine on people?
I remember back in 2006, having trouble taking vitamins and had to stop taking them because they were causing me discomfort. I had trouble digesting them and I remember telling this to the Naturopath about this. I was getting this high feeling from taking them like they were too powerful for me. Never in my life had I ever had problems taking vitamins.
There are so many things over the past 5 years that now explain that my liver was scarred. From 2005 to 2007 I cut back on drinking wine because I was getting all sorts of abdominal pains and weird things happening to me (sharp stabbing pains in the legs). So when I went to a new PCP in 12/07 and for the first time the LFT's were high, she told me to stop drinking and I did! But I think at this time it was too late. I think what I had at that time was called Alcoholic Hepatits and the scarring was already present. But no one referred me to Liver specialist until 11 months later. I saw a GI doctor in 9/09 who said there was nothing more for him to do after the endoscopy and colonoscopy was done for my increasing upper mid and upper right abdominal pains. So he referred me in 11/2009 to a Hepatologist who ran his tests and found nothing and I continued to get worse. I was admitted to a Hospital and numerous labs and imaging tests were run on me to rule out Pancreatitis, etc. They found a non functioning Gall Bladder.. This is just the beginning of the downturn for me. I was so sick and upset from everything. It was so hard for me to function at times with the pains I was in. I couldn't eat normal after the gall bladder surgery, so I just ate beans, rice and vegetables for the longest time until one day a Holistic doctor told me to eat some ground flax seeds in my diet and I ended up in the ER. I think this was due to the Cholistasis. But I didn't know at this time that this was the cause of the elevated LFT's.
I have quite a story and I've carried on for too long but would like to share my story with you if you would like to hear more.
Maybe I should write a book about my misfortune and get it published before I die. Sound like a plan!
Please feel free to email me as I would like to educated myself some more. I feel like calling up the previous Hep and talking to him about this! Hopefully, he will have the time to call me! These doctor's think that they are so protected! They always seem to find a way to cover themselves from Lawsuits and find loopholes and a way out! What a wonderful world we live in! I'll cry myself to sleep again!