1. < Transplants

Lactulose question

Posted by jodeej @jodeej, Apr 8, 2018

I've seen that several of you have taken lactalose (not sure how you spell it) while awaiting transplant. My husband is having some HE symptoms, but wants to work as long as possible. Is it possible to take lactalose and still work? I don't want him to take it, go to work, and then have bathroom issues.

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amyintucson | @amyintucson | Jun 8, 2018
In reply to @amyintucson "I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance -..." + (show)
@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance - I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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@windwalker - small world. I live on the eastside of Tucson near Camino Seco & Wrightstown Rd and my sister lives near Speedway & Pantano. Sarcoidosis is a strange disease. I know someone who was diagnosed with it in the lungs in the mid-80's with little to no symptoms to date. Mine showed up fast and furious in 2008 in the liver with only a small stable nodule on the lungs, but the liver has been a constant source of concern. Does your cousin have active symptoms?

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MikeJones | @mikejones | Jun 11, 2018

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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4 replies
gaylea1 | @gaylea1 | Jun 11, 2018
In reply to @mikejones "I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and..." + (show)
@mikejones

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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@mikejones: what is the name of the lactulose alternative. I am so sick of taking it 3 x daily for the past 18 months. Sometimes I feel sick trying to swallow it even if I mix it with juice. It is messy and the gas embarrassing.

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MikeJones | @mikejones | Jun 11, 2018
In reply to @mikejones "I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and..." + (show)
@mikejones

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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Kristalose is the only powder form of lactulose.

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JK | @contentandwell | Jun 11, 2018
In reply to @mikejones "I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and..." + (show)
@mikejones

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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@mikejones I sure wish that had been an option when I was taking the dreaded lactulose. After transplant, when I was still in some pain (really the pain was only the first few days) my husband would cheer me up exclaiming “NO MORE LACTULOSE”. 🙂
JK

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gaylea1 | @gaylea1 | Jun 11, 2018
In reply to @mikejones "I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and..." + (show)
@mikejones

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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@mikejones thank you so much for sharing. I am going to ask my doctors about this.

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amyintucson | @amyintucson | Jul 1, 2018

I have been using the Kristalose - powdered lactulose - for a couple of weeks now. It is so much easier to get down and I do not dread taking it like I did the syrupy version. It is more expensive, but well worth it for me as I take it regularly and it transports easier than the bottle.

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parrot53 | @parrot53 | May 20, 2023

I too have a question. I have not taken the lactulose yet but it has been recommended if I can’t get my bowels going. I am trying fish oil and probiotics as well as diet modification without much luck. I have not had any HE episodes yet but am dreading them. Has anyone started lactulose before HE episodes?

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katebw | @katebw | May 21, 2023

@parrot53 I am 1.5 years out from my liver transplant. When I was still sick I had one episode of HE pre lactulose, and 3 episodes after; they had to adjust the dose and within a few months it stopped happening. Those episodes knocked my socks off, scary. As gross as lactulose is, it’s much better that HE so you may want to try it. Are you also taking xixifan? It helps address the bacteria in your gut that promote these episodes. Good luck!

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1 reply
parrot53 | @parrot53 | May 21, 2023
In reply to @katebw "@parrot53 I am 1.5 years out from my liver transplant. When I was still sick I..." + (show)
@katebw

@parrot53 I am 1.5 years out from my liver transplant. When I was still sick I had one episode of HE pre lactulose, and 3 episodes after; they had to adjust the dose and within a few months it stopped happening. Those episodes knocked my socks off, scary. As gross as lactulose is, it’s much better that HE so you may want to try it. Are you also taking xixifan? It helps address the bacteria in your gut that promote these episodes. Good luck!

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Thank you for your reply. I am thankful not to have had any HE episodes. I am scared that the constipation will bring it on. I do not like what I hear about Lactulose so I am trying to adjust fiber, water, exercise, and consulting the nutritionist before I resort to using it. I really appreciate your response. Thank you again.

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