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what are some ways to help tolerate loctulose?

I have stage 4 cirrhosis. I had Tips procedure done 3 days ago. i have 17 days sober. Im starting back work next week. loctulose has hit kinda hard. I would like to know if anyone had any advice.
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Avatar universal
Don't take it on an empty stomach!  That stuff is awful....I have had to take it for 7 years and the only thing I can say is to eat something before that awful swig.  Seventeen days super is GREAT!  I also have Stage IV Liver Failure.  I'm 62 and used off and on since I was 14.  They did the banding "stuff" early on but nothing helped with the hepatic hypertension so I had the TIPS done and it has worked GREAT!  I had it about 5 years ago and it has stayed in place the whole time.  Just had my bi-yearly check-up yesterday but I am sure you will have follow-up often at this point.  Congrats again o the 17 days and hang in!  I look forward to reading how you are coming along and will be happy to offer anything in my story or things I've learned!  
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683231 tn?1467323017
“ If you are taking this medication by mouth for liver disease, take it usually 3-4 times a day or as directed by your doctor. To improve the taste, you may mix it into fruit juice, water, milk, or a soft dessert. The goal is to have 2-3 soft stools each day.”

Helpful - 1
thank you for your help. im trying to time it where it interferes with work less as possible. im a flooring contractor... Im determined to stay as productive as i can.
Yeah I got it. I know we want to stay productive but with having HE (hepatic encephalopathy I’m wondering if you have you looked into social security disability? Advanced liver cirrhosis with symptoms of HE should qualify you for social security disability.

Most importantly what does your hepatologist say? Even driving can be a serious or dangerous problem for those with HE. I know of people who have gotten lost less than 1 mile from home.

Wishing you the best of luck.
I fear that being my only option. everything is new . 5 days since procedure. My work load is big and physical. my ego tells me to keep going as long as possible. I cant thank you enough for takeing the time and give me an honest outlook. Noone else has.
Really you probably need to have a good discussion with your hepatologist about your prognosis. Do you know your MELD score? Have you been evaluated for liver transplant? You should preferably be under the care of a hepatologist who is associated with a liver transplant center. Are you having abdominal ultrasounds and blood testing every six months? Have you had an upper endoscopy to check for the presence of esophageal varicies?

That is the kinda of testing I have had done. I was diagnosed with early liver cirrhosis  back in January 2008. In 2012 they found I had enlarged esophageal varicies that I had banded. On my most recent abdominal ultrasound they found two small masses that hadn’t been seen on previous ultrasounds. I’m having a CT scan soon to try to determine if I have liver cancer or if the masses are benign.
My  last  MELD score was 9 . that was back in 2019. i have a follow up with  my tips surgeon in 2  or 3 weeks.  he has ordered a abdominal ultrasound. Before the tips i had 2 banding procedures that didnt hold up. I  quess ill find out more with my follow up. My insurance has been with the VA.Noone has mentioned a hepatologist yet.   I hope your CT scan shows zero  cancer. you will be in my  prayers.
Thanks fingers crossed.

You should at a minimum be having abdominal ultrasounds and blood testing every six months to monitor for possible liver cancer.

Blood testing should be CBC,  Basic metabolic panel, hepatic function panel, and INR/PTT also possibly AFP (alpha-fetoprotein) which can be a liver cancer marker. With these tests you should be able to compute your own MELD score. Hopefully you are keeping copies of your lab work and other testing results.

That is what I’ve been having for years the goal being to find liver cancer in its earliest stages when it is more treatable.
When you say banding procedures do you mean you had esophageal varicies that needed banding? Did you have an esophageal bleeding event or were grade 3 enlarges esophageal varicies found with upper endoscopy?
The first banding was found and done during  an endoscopy. The second one was done 3 months later when I was told the holes were bigger and informed my liver wasnt working.  their answer was to do the TIPS. The Doc that did the procedure said my liver was hard  and the spleen was bleeding also. I have more lab work coming up I find the meld formula very helpful. i know my nb. needs updating.
It does sound like you are in decompensated cirrhosis with having HE and bleeding esophageal varicies

Do they have you on a beta blocker medicine? This is normally used to treat high blood pressure but for people with cirrhosis and portal hypertension and enlarged varicies it can be used to lower portal hypertension and reduce the risk of developing future esophageal varicies. A beta blocker does this by slowing the resting heart rate to around 60 bpm thus reducing portal hypertension. I can’t take a beta blocker as my resting HR is already less than 60 bpm.

As far as doing physical work like you do that’s not a great idea with portal hypertension and esophageal varicies. With the straining of lifting and bending if you have enlarged varicies they could potentially rupture resulting in a life threatening bleeding event.

Obviously, I don’t know the specifics of your personal health situation but you may want to have a discussion with your doctor if you really should be doing heavy physical labor. I know it can be hard to grasp especially if you feel more or less ok but we with cirrhosis are really in very poor health.

I’m still working but I’m considered compensated cirrhosis, I feel fine and I don’t have a physical job. If I do end up being diagnosed with liver cancer that greatly changes my situation and I’ll likely be forced to stop working and going on social security disability.
I had grade three esophageal varicies discovered on upper endoscopy. I had 4 upper endoscopies done over four months (so once a month) to band all the enlarged blood vessels. It is common to need repeated upper endoscopies to be able to eradicate all the enlarged blood vessels as you really can’t band all of them at one time it would block off your esophagus. Afterwards, I was having upper endoscopies every year over the next seven years to check to make sure they didn’t come back. Two years ago my doctor decided we could wait for two years before doing another upper endoscopy since I hadn’t had any new varicies. My next one is in two weeks.

Varicies are enlarged blood vessels caused by high blood pressures in the portal vein that flows through the liver. Due to liver scarring the portal vein blood flow starts to have higher pressures inside this blood vessel. The veins in your esophagus are the first blood vessels up stream from the portal vein and this excess pressure causes the veins (varicies) to  become enlarged where there is a risk of them starting to bleed. The doctor  attaches bands to these blood vessels to close them off. The tissue then dies and the bands and dead tissue falls off and leaves the body through the digestive track.

Not sure what you mean by holes unless maybe the bandings didn’t heal well. But like I said I had to have 4 upper endoscopies to be able to treat all my enlarged varicies back in 2012.
I havnt seen a doctor since the Tips. They are very slow and dont tell me anything,No calls. I think since Im covered with the VA, Im not a priority. Im grateful for the help Ive received from them buut Im ready to be more proactive  and pursue a hepatologist on my own. Work is my sanity right now even tho  it may come at a risk. As far has the banding they said the area they had to band was bigger. I  assumed this meant holes. Im not getting  feedback from them. im not a complainer. I will take more control and maintain my sense of humor. You are awesome for takeing your time to help. I hope I can help someone as I learn more.
Yeah we really need to be our own advocates especially in the VA system. I was helped along the way by those who came before you can look up HectorSF he was very informed and put out hundreds of posts about liver disease sharing his knowledge and his journey.

Best thing is to get copies of all your tests and read up from good medical resources. The American Liver Foundation is a good resource as is the American Association for the Study of Liver Diseases (AASLD) even if you don’t understand all the the information it’s a great way to learn more about this illness.  
thanks again
683231 tn?1467323017
Have you tried mixing it in with beverages? Also there is another medicine an oral antibiotic, rifaximin which many have found helps but it depends on your insurance as it I guess is more expensive than lactulose
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