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Diet options for high ammonia & a diabetic

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Posted 1/2/2009 3:40 PM (GMT 0)

Hi all -

I just found this forum last night after getting a call from my mom that my father had been rushed to the hospital after a spike in his ammonia levels (again) caused an episode of severe disorientation and loss of bodily function control and belligerance regarding actually going to the hospital.  Thank you so much for having such a great resource of information!

A little about my dad:  He has alcohol-related liver failure, but has been sober for 2 years (this month!).  His primary issue stemming from the liver failure is ammonia level control (last night at the ER it was 160, but usually hovers around 70-80), and despite having fatty liver combined with cirrhosis, his other levels have not been that bad.  He's on high amounts of of lactulose by mouth already as well as miralax, and is on an antibiotic regimine as well (I can't remember the name of it), and is being monitored by Dr. Araya at Albert Einstein in Phila.  He also has a multitude of other, unrelated health issues as well, including vascular issues (which make him an unlikely transplant candidate) and diabetes.

This latest episode we think was brought on by eating too much protein over the holidays.  And, because of the diabetes, it's been very hard to find foods that are both low-carb AND low-protein.  I've been unable to find very much on google about a diet plan that is both.

Any advice for us - resources, menu planning, etc?  I'm hopeful that they'll be able to get him through this latest crisis and when he comes home, we can come up with a more solid dietary plan for him that doesn't pit his liver function against his diabetes.

Thanks in advance for any information.  I'm trying to direct my mom here as well, because I think that it would be a great help for her as his primary caregiver.  (Unfortunately, I live 4 hours away and can't be much use on a daily basis, and don't have the ability to be "boots on the ground" with her as she works through this with him....)

Posted 1/2/2009 4:22 PM (GMT 0)

Archichik, welcome to the forum!  I'm so sorry that your dad is battling both liver disease and diabetes.  That is a rough combination.  I think he is fortunate to be fairly stable, aside from the encephalopathy.  You are probably right about too much protein.  The only thing I can suggest is a diet free of beef and low in animal protein, in general.  Beans and eggs can be good substitutes.  Beans are carbohydrates, but like pastas they are complex carbohydrates which are broken down more slowly.  I eat a lot of fresh fruit and veggies, but I'm not a diabetic.

When your dad next goes to see Dr. Araya, have your mom ask about a good diet for him, or referral to a nutritionist there. 

Also, do continue to persuade your mom to come to this forum.  It could be a great source of support and information to her.

Sorry I can't be of more help, but perhaps someone else here knows more about diabetes and can offer more suggestions.

Posted 1/3/2009 1:46 AM (GMT 0)
Hi Archichik, I just wanted to welcome you to the forum. I am sorry that your dad is dealing with this disease. My husband has cirrhosis. His main problems have been encephalopathy and edema. Since his lactulose was adjusted to every 6 hours, the encephalopathy has been pretty much under control. He had a bleed from varices in his stomach in November. Since he has been home from the hospital the encephalopathy has pretty much diminished. I know how frustrating it can be, although he was never bad enough to be hospitalized from it. When the episodes would come on I could never narrow down anything different that he was doing to cause it.
I think Connie gave you some good advice about talking to a nutritionalist. The balancing act can be hard enough with cirrhosis. Adding diabetes must make it so much harder. It isn't uncommon for a person that has cirrhosis to develop diabetes. It is actually one of the complications that can be caused by cirrhosis. I'm sure that a nutritionalist will be able to help.

I hope you continue to come back and also encourage your mother to check the forum out. There are alot of wonderful, caring people here that have loads of experience with this disease. They have been a lifesaver to me.

I will be praying for your family.
Posted 1/3/2009 4:54 PM (GMT 0)
Hello Archichik, Just wanted to add my welcome to the forum. I realize how hard it must be for you and your mom. This liver disease ride can be as wild as any roller coaster ride. Nutrition is a big part of controlling some of the symptoms of it. Connie gave you some good advice. Getting your father to a nutritionist is very important.
It would be great if you can get your mom to visit us, but whether she does or not, you are more than welcome to stay and at least get some support for yourself, from people who have or are living with it. The ability to communicate with people who really understand what's going on with this disease and can relate to you is priceless.........it was a life saver to me personally. And as you can see our forum is filled with very caring and knowledgeable people.

Thoughts and prayers........
Posted 1/4/2009 4:44 AM (GMT 0)
Archichik,

I just wanted to welcome you to the forum. It has been a life saver for me.....wonderful caring knowledgable people here. My husband has HepC and cirrhosis. He is currently on a transplant list, though at the bottom of the list. We, too, have battled the encephalopathy and high ammonia level issues. He is on lactulose and when I notice him starting to go into left field a little, I just increase the lactulose, etc. I think you have hit the nail on the head w/ the protein issues. My hubby ate alot of protein over the holidays, and he has had a rough couple of days as well. I think Connie gave you good advise.....talk w/ a nutritionist because the liver disease alone is quite a balance nutritionally but adding the diabetes would be a tough thing to balance.

I wanted to welcome you and encourage you to stick around. If you could get your mother to visit, it would probably be a great outlet for her....there are several caregivers on this forum and we are walking the same shoes as she is.......

Hang in there!

Mer
Posted 1/4/2009 4:30 PM (GMT 0)
Archichik,

My husband has the same problem.  He is on a transplant waiting list at Barnes-Jewish is St Louis. He is currently having to have a parasentisis once a week.  This week they will try the albumin infusion to see if that will help delay the parasentisis.  Unfortunately, due to the liver disease he is now also a diabetic.  His serium sodium level is very low, so they have drastically reduced the diertics.  I am having a tough time trying to figure out how to provide him with a low protein, low sodium and low carb meals.  We go back to St Louis next week and I am going to request an appointment with a dietician to try to help.

Still trying to figure out this forum and how to get back to things, respond, post etc. 

Will post any info I receive after returning from St Louis.

Good luck to you...wingk

Posted 1/5/2009 2:15 PM (GMT 0)
Thank you all for your warm welcome!

My dad is doing better - his last ammonia was at 79.  The lactulose wasn't working in the hospital and it had been three days since his last BM, so they had to do an enema yesterday.  (He wasn't too happy about that - but at least his faculties are coming back now!)

One thing they noticed on the additional testing is that his gallbladder is now compromised.  He had gallstones, but now the gallbladder is "contracted" and although tests show it is functioning somewhat, the doctors feel that this may have contributed to his latest crisis.  He is not a good surgical candidate, but my mother is going to get a surg. consult today because, of course, it is just another chronic problem for him to manage (add low fat to the low carb, low salt and low protein diet!)  She is also going to try to get him in to see a nutritionist as well, but the first order of business is getting him a little bit stronger so he can come home.  Right now, although he is a lot more "with it", he's weak and tired, and he had a fall in the hospital because he didn't want to get help to go to the bathroom, so now he's sore and they are checking on his old back injury for which he had a laminectomy (sp?) several years ago.

My mom is also going to call Dr. Araya today - she wasn't sure if the local doctors had contacted him yet.

Thanks again for all your support.  I am going to continue to recommend she come here for herself because I really think she needs to hear more from others in her own situation. 

Happy new year, all!

Posted 1/5/2009 7:44 PM (GMT 0)

Archichik, thank you for updating us on your dad's condition.  Since his fall, maybe they will put the rails up on his bed so he won't be inclined to go to the bathroom alone.  I hope his back will be okay.  Good to hear that his ammonia has gone down.

I hope your mom will join us, but if not...please keep us posted.

Posted 1/6/2009 3:57 PM (GMT 0)
Yesterday morning, there were thoughts he might actually come home today, but his ammonia went back up drastically (from 79 to "between 100 and 130" - the nurse couldn't say), so not sure what that means, or how it was triggered, because he's been on low protein and heavy doses of lactulose in addition to the enema he had the day before.... Not good news.
Posted 1/6/2009 6:30 PM (GMT 0)

So sorry to hear that, Archichik.  I hope that they can get the ammonia down so he can go home.

Keep us informed.

Posted 1/7/2009 4:34 AM (GMT 0)
Archichik, I'm sorry your dad is having such problems with his ammonia levels. I will continue to pray for you both.
Posted 6/27/2016 2:57 AM (GMT 0)
Oh my GOSH! THANK YOU for sharing your father's experience! I am currently living quite the similar scenario with my own father. He is a diabetic (Type II) and has cirrhosis of the liver. We are continually dealing with his ammonia levels.
At first they falsely diagnosed him with rapid onset dementia, which I fought until we finally ran an ammonia level and it was over 200. They quickly removed the dementia diagnoses and put him on lactulose. Once on lactulose for 48 hours he was "right as rain". We still cannot figure out WHY his ammonia levels are going up and "down" (lowest was 80). The only symptoms we get are his overwhelming sleepiness AND a bit of "crazy" (peeing in the sink because he can't find the toilet, coming downstairs naked not knowing where his clothes are, etc) along with some mental issues (not knowing the year or what day of the week it is, etc) as well as being irritable with a "nasty streak". By the time we put it all together (the "crazy") we are off to the ER.
Normally my dad is the most modest, kind hearted, gentle spirited guy with a "workhorse" work ethic. He is 73 but acts like a man who is in his 40's, landscaping, renovating his house (he is from the construction industry) and it seems like after any exertion (physical or mental) it wipes home out and he is prone to start the cycle all over again.
He is currently in the hospital (working on day 3) while they monitor his ammonia levels. Monday they were 99, Friday (4 days later) they were at 177 in the ER with the "symptoms" that go with it. Hospital did them 24 hours later (Saturday) they were 203. 24 Hours later (Sunday) they were 162. His blood pressure is going up and down and they are only giving him Lactulose (30g) three times a day. I asked about an antibiotic for him to help rid his intestines of the bacteria producing ammonia and was told "no" because he doesn't have an "infection".
I have done some research online (how I found you all :D ) and believe we can nip this with proper balance of diet ... albeit quite the challenge as I have read the cirrhosis of the liver diet and diabetic diet seem to be at polar opposite ends of the spectrum. :(
Any suggestions that I might be missing?
Thank you so much,
Posted 6/27/2016 5:53 AM (GMT 0)
Lactulose absorbs the ammonia and other toxins in the body. The stomach is where the toxins are drawled to. He should be having three loose bowel movements per day. If not, increase the dosage of Lactulose until he does. Lactulose is basically a synthetic sugar and you can't overdose from it. Taste horrible and the end result is a bad case of diarrhea. I've said in the past "If Hell has water fountains, surely they only dispense Lactulose".

He should check into a drug called Xifaxan. This stuff is designed to work in the intestinal tract specifically. It removes the toxins that remain in the intestines. Combine the Lactulose with Xifaxan and it often resolves the Encephalopathy issue your father is having. Xifaxan is very expensive but he may qualify for assistance straight from the manufacture. Salix is the only one who makes this drug. /www.salix.com/ or phone number 1-866-282-6563.


Ziff
Posted 6/28/2016 2:57 PM (GMT 0)
Welcome to the HW liver forum,

You have added to a 7 or 8 year old thread.

It would be great if you started your own thread and then you could add information or questions over time.

I am caregiver to a liver disease patient who has had all these symptoms over the years. He finally needed a transplant and has had some setbacks but is doing pretty well.

Check into the Xifaxin as Ziff says. It really made a difference.

And come back often...some great folks here who have been through it all.

Hugs

MamaLama
Posted 4/12/2017 2:45 AM (GMT 0)
Hi..I am new to the forum..My husband has Cirrhosis. He was diagnosed in 2005 after becoming very anemic and was hospitalized and given blood transfusions. It was several days later that the diagnosis of cirrhosis was reached. He had to have several procedures to stop bleeding in the stomach and has had these procedures every 6 months since the onset. Two weeks ago he became very disoriented and I was not understanding what was happening to him. The doctor never mentioned that ammonia levels being too high could happen. I am blaming myself for not knowing this but I do now and it is quite scary. He stayed in the hospital for several days and is now home on Lactilose and xifaxin. The insurance company denied xifaxin but we managed to get it temporarily through the Salix Pharmaceutical company that we are very thankful for. It is really hard to regulate the amount of lactulose needed but I am learning. He is diabetic, and had a mild heart attack 20 years ago. My biggest worry is if he needs a transplant in the future...will a 67y/o even have a chance of getting a transplant with multiple health issues? I am very glad to have found this forum as I have gotten more information here than any of the health professionals we have dealt with have given. I am a heart patient..had bypass 20 years ago and 2 stints just 2 months ago. I am so concerned that i need to stay present and strong for him and he feels the same way. Thanks for letting me vent.....
Posted 4/13/2017 2:17 AM (GMT 0)
hi nanapapas5 and welcome,
sorry about your mans diagnoses!! im going thru a similar problem myself.. my brother has esld and cancer of liver. What kind of hepatitis does he have. (viral, alcoholic, fatty liver etc).

Lactulose and xifaxan are both needed together. they work in the intestines to move food quickly through the GI tract.. my brother takes takes lactulose 3 to 4 times daily. his dr wants him to have at least 3 bowel movements per day. Seems like all insurance denies xifaxan initially.

as far as a transplant is concerned..a serious heart condition could eliminate a transplant. if his is mild and you have a good chance to survive 5 years you may be approved..diabetes has to be avaluated.

let me know how hes doing, we have transplant members who check in at times. it would be helpful if you started a new thread. you will get more responses.. this thread is ancient!!
I wish you and hubby the very best
Posted 4/22/2017 2:31 AM (GMT 0)
nanapapas,

here is another nana...my man is 67 this year, 6 years post liver transplant.

if you look to the left of the posts you see the handle of each poster. If you go to the SEARCH choice on the blue bar above and enter MamaLama you will get a lot of posts from me...going through the hell that is Liver Disease...warts and all.

Once he had a nice new liver, he was able to manage the sugar stuff. WE have had other dialysis dependent members who have qualified for transplant.

Put that in the SEARCH also Diabetes and Transplant and see if you can find those old posts. The members may not check any more, but their stories might be helpful.

The liver has over 600 jobs to do...making various chemical changes to foods, stored fats, etc etc. With cirrhosis, things get very mixed up. Mike would go to the hospital about every 4 weeks that last year because his albumen or sodium or whatever was all mixed up..they'd put him on the IV, give him whatever was messed up and he'd stabilize and go home. It was awful to watch.

He even had cancer! Once they found the small heptocellular carcinoma tumor, he got extra points he qualified for the transplant. The docs were amazed the day they told him about the cancer....we didn't cry, we were GLAD...cause of the points for the transplant. He got the points in February and got his transplant May 1st. Whew...just in time.

Best to you,

Mama Lama
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