1. < Digestive Health

NASH and cirrhosis of the liver.

Posted by mollyb1968 @mollyb1968, Sep 1, 2016

I have type 2 diabetes and have been diagnosed with chronic non-alcoholic steatohepatitis with mild intracytoplasmic cholestasis. Minimal lobular actvity. Scattered lymphocytic infiltrates noted within the portal tracts with minimal hepatocyte necorsis and mild portal fibrosis. Due to also having portal hypertension, gastric varices and stomach polyps, it has been suggested that I may have cirrhosis of the liver as well. Does anyone else have this diagnosis and should I be greatly concerned? Is there treatment for this? Any help would be appreciated.

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mollyb1968 | @mollyb1968 | Sep 1, 2016
In reply to @rosemarya "@mollyb1968, I welcome you to this discussion. I want you to know that you are not..." + (show)
@rosemarya

@mollyb1968, I welcome you to this discussion. I want you to know that you are not alone. I've had a complicated history due to liver disease, and I can say that I know what you are experiencing. I'm here and will provide any support or encouragement that that my own experience might allow.
At this point, I say that it is highest priority for you to talk with the doctor who made this diagnosis; I am surprised that he/she did not give you a full explanation of what is happening inside of you. Are you being treated by your primary care physician or a GI? My primary care physician referred me to GI specialist, who often consulted with a liver specialist. If you are not being treated by GI, I urge you to do so. I'm wishing for the best plan of action for you. Rosemary

I would like to share the following link to information about NASH.
http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/home/ovc-20211638

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I see the doctor in October. I will start making a list of things I need to know. Thank you again for your help. This means a lot to me.

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mollyb1968 | @mollyb1968 | Sep 1, 2016
In reply to @nategilbraith "Hi @mollyb1968, welcome to Connect! It sounds like you’re going through a lot right now so..." + (show)
@nategilbraith

Hi @mollyb1968, welcome to Connect! It sounds like you’re going through a lot right now so I’d like to introduce you to some other Connect members who may be able to share some of their own experiences so you can better understand your situation. Please meet @rosemarya, @mnangelmom, @peakbagger, @lorettanebraska, @sandraf, @havithealthy1, @hurtle12 and @dianne1.

You may also be interested in taking a look at this past discussion where members are talking about NASH and cirrhosis of the liver http://mayocl.in/2bVRAY4

Molly, there's a lot of information is the details of your diagnosis. Have you been able to sit down with your doctor and go through all the terms to develop a treatment plan?

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I will. I especially need to know what some of the terms are. They sometimes act like they are afraid to tell you anything. Answers will only inform me and maybe I can find something I can do to help this disease.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 1, 2016
In reply to @rosemarya "@mollyb1968, I welcome you to this discussion. I want you to know that you are not..." + (show)
@rosemarya

@mollyb1968, I welcome you to this discussion. I want you to know that you are not alone. I've had a complicated history due to liver disease, and I can say that I know what you are experiencing. I'm here and will provide any support or encouragement that that my own experience might allow.
At this point, I say that it is highest priority for you to talk with the doctor who made this diagnosis; I am surprised that he/she did not give you a full explanation of what is happening inside of you. Are you being treated by your primary care physician or a GI? My primary care physician referred me to GI specialist, who often consulted with a liver specialist. If you are not being treated by GI, I urge you to do so. I'm wishing for the best plan of action for you. Rosemary

I would like to share the following link to information about NASH.
http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/home/ovc-20211638

Jump to this post

I feel confident that you will learn more when you return to your October appointment. . And it is not easy to wait and wonder. I am happy that this chat has helped you. I remember me and my husband feeling completely alone and frightened because no one was available at the beginning to talk to outside of the doctor office. I look forward to ongoing conversation with you. Rosemary

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caretothepeople | @caretothepeople | Sep 2, 2016

Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968.

Getting a diagnosis of any type can certainly be scary, especially when it comes as a surprise. A range of emotions, including shock, sadness, and even angry are common. I can tell you that when liver disease came up in my family recently there was alot of denial and resistance to making changes/seeking care, which of course is not very productive.

It sounds like you are being proactive and very motivated, which is so wonderful. Ultimately you are your own best advocate. Yet navigating all the information being thrown at you can be a lot to digest.

As Colleen mentioned, there are a lot of great resources out there that may assist in learning more about NASH and feeling prepared for upcoming appointments. Mayo Clinic has a guide of high level questions to ask the doctor here. These are a great starting point!: http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/diagnosis-treatment/preparing-for-appointment/ptc-20211651

The American Liver Foundation has a wealth of information and resources. For example, here is a guide they have for those newly diagnosed with NASH. This may have useful information. http://www.liverfoundation.org/downloads/alf_download_921.pdf

-Melody

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7 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 2, 2016
In reply to @caretothepeople "Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968. Getting a..." + (show)
@caretothepeople

Thank you for tagging me in this discussion, @colleenyoung! And hello to you, @mollyb1968.

Getting a diagnosis of any type can certainly be scary, especially when it comes as a surprise. A range of emotions, including shock, sadness, and even angry are common. I can tell you that when liver disease came up in my family recently there was alot of denial and resistance to making changes/seeking care, which of course is not very productive.

It sounds like you are being proactive and very motivated, which is so wonderful. Ultimately you are your own best advocate. Yet navigating all the information being thrown at you can be a lot to digest.

As Colleen mentioned, there are a lot of great resources out there that may assist in learning more about NASH and feeling prepared for upcoming appointments. Mayo Clinic has a guide of high level questions to ask the doctor here. These are a great starting point!: http://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/diagnosis-treatment/preparing-for-appointment/ptc-20211651

The American Liver Foundation has a wealth of information and resources. For example, here is a guide they have for those newly diagnosed with NASH. This may have useful information. http://www.liverfoundation.org/downloads/alf_download_921.pdf

-Melody

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Thanks Melody! I always appreciate your guidance to resources.

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mollyb1968 | @mollyb1968 | Sep 2, 2016

I have a question: My sister-in-law had recent lung surgery and has to be careful regarding who and what she is around. Is NASH, in any way, contagious or something she should stay away from. Is this a form of hepatitis A, B, or C. Thank you for your help in this matter.

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2 replies
caretothepeople | @caretothepeople | Sep 2, 2016
In reply to @mollyb1968 "I have a question: My sister-in-law had recent lung surgery and has to be careful regarding..." + (show)
@mollyb1968

I have a question: My sister-in-law had recent lung surgery and has to be careful regarding who and what she is around. Is NASH, in any way, contagious or something she should stay away from. Is this a form of hepatitis A, B, or C. Thank you for your help in this matter.

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@mollyb1968 - No, NASH is not contagious. This is from Saint Louis University's NASH Research Center: "No, NASH is not contagious. “Hepatitis” simply means inflammation in the liver. Although some people have liver inflammation (hepatitis) because of infections by viruses such as hepatitis B and hepatitis C, NASH is not caused by an infection of the liver and is not contagious. "

nashresearch.slu.edu/index.php?page=take-care-of-your-liver

REPLY
mollyb1968 | @mollyb1968 | Sep 2, 2016
In reply to @mollyb1968 "I have a question: My sister-in-law had recent lung surgery and has to be careful regarding..." + (show)
@mollyb1968

I have a question: My sister-in-law had recent lung surgery and has to be careful regarding who and what she is around. Is NASH, in any way, contagious or something she should stay away from. Is this a form of hepatitis A, B, or C. Thank you for your help in this matter.

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Thank you so much for the info.

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mollyb1968 | @mollyb1968 | Sep 3, 2016
In reply to @colleenyoung "Molly, I get that. It can be so overwhelming getting all that information, to not understand..." + (show)
@colleenyoung

Molly, I get that. It can be so overwhelming getting all that information, to not understand the terms, etc. How are you suppose to know what questions to ask? We, the members of Connect, can help you with that. Right Rosemary?
I'm going to bring @caretothepeople into this conversation. She is so amazing at finding resources to help prepare for appointments and questions to ask.

Here are my favorite tips to start the discussion.
1. Always bring pen and paper to your appointment. When a term you don't recognize is mentioned, get the doctor to spell it. In your case you can bring your report with you. Your doctor should take the time to explain each term and what they collection of issues means in your case in particular.
2. Say it back. When you doctor explains something. Ask to repeat it back in your words. This helps you remember better, and it helps the doctor understand how you've interpreted her/his explanation. Misinterpretations can be cleared up then and there.
3. Bring a second pair of ears. If you have a friend or family member who can go with you, they can help take notes and be a second pair of ears.

Anyone got more tips to add?

Jump to this post

Does anyone know what the term: intracytoplasmic cholestasis means? or lymphocytic infiltrates within the portal tracts means?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 3, 2016
In reply to @colleenyoung "Molly, I get that. It can be so overwhelming getting all that information, to not understand..." + (show)
@colleenyoung

Molly, I get that. It can be so overwhelming getting all that information, to not understand the terms, etc. How are you suppose to know what questions to ask? We, the members of Connect, can help you with that. Right Rosemary?
I'm going to bring @caretothepeople into this conversation. She is so amazing at finding resources to help prepare for appointments and questions to ask.

Here are my favorite tips to start the discussion.
1. Always bring pen and paper to your appointment. When a term you don't recognize is mentioned, get the doctor to spell it. In your case you can bring your report with you. Your doctor should take the time to explain each term and what they collection of issues means in your case in particular.
2. Say it back. When you doctor explains something. Ask to repeat it back in your words. This helps you remember better, and it helps the doctor understand how you've interpreted her/his explanation. Misinterpretations can be cleared up then and there.
3. Bring a second pair of ears. If you have a friend or family member who can go with you, they can help take notes and be a second pair of ears.

Anyone got more tips to add?

Jump to this post

Hi Molly,
Here are some explanations I found through a Google search. I would confirm these interpretations to understand how these results apply to you.

From the book "Biopsy Interpretation of the Liver" by Stephen A. Geller and Lydia M. Petrovic
"Cholestasis is the presence of visible bile in liver tissue... In prolonged cholestasis, the cytoplasm of liver cells also contains bile pigment (intracytoplasmic cholestasis)."

The portal tract is sometimes also referred to as the portal triad. It gets its name from the lliver's triangular shape and its three major components: the hepatic artery, the hepatic portal vein, and the hepatic ducts, or bile ducts. http://www.wisegeekhealth.com/what-is-a-portal-triad.htm

Lymphocytes are seen in portal tracts in the normal liver, and infiltration increases in many inflammatory diseases. http://www.nature.com/icb/journal/v80/n1/full/icb20027a.html

Did you get these results from a liver biopsy?

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