When is Lactulose recommended?

Posted by clutch @clutch, Sep 14 5:37pm

Hello All,
I have seen a mention of lacrulose here on the forum. It is known to treat constipation, but I am wondering when is it used in the course of treatment It? What are the implications? It would be great to get some feedback from Connect Nembers who have actually used it. BTW, is there an OTC form or just prescription?

@clutch, there's a discussion about lactulose in the Transplants group.
– Lactulose question https://connect.mayoclinic.org/discussion/lactalose-question/

@contentandwell @jodeej @gaylea @kltchrmn can share their experiences and maybe answer some of your questions.

Clutch, why is lactulose being recommended for you?

REPLY

I had surgery in Jan. 2020 (abdominal) and after trying everything, my doctor prescribed Lactulose. It’s the only thing that worked for me. I tried, senacot, Miralax, magnesium, benefited, fiber gummies, colace, and others.

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Hi, @clutch I used Lactulose prior to my transplant due to HE episodes. It was prescribed for me initially in my local hospital but when I went to a hepatologist at Mass General, my transplant hospital, she prescribed xifaxan which I was able to take without the need for lactulose. Eventually though my liver worsened of course and my HE episodes resumed. With xifaxan alone I went about 9 or 10 months with no HE episodes. When HE resumed I had to add lactulose back in along with xifaxan.

Xifaxan apparently works differently than regular laxatives. It somehow helps to flush out the bacteria that go to your brain and cause the episodes.

Next week it will be five years since my transplant and I am not quite sure exactly what it does differently but I do know that other laxatives do not operate in the same way. If there were other laxatives that would do the same I am sure they would recommend them. I do not believe you can get lactulose OTC. It was NOT a very expensive drug with my insurance, vs xifaxan which was quite costly. I think depending on your income you can get various grants to help with the cost of xifaxan but we were paying about $700 a month. When you are on Medicare as I was and paying that much though, you get to the "donut hole" fairly quickly and the cost goes down considerably. I don't remember exactly what we paid when I hit the donut hole but I think it was less than $100 a month.

Lactulose is one of the very few drugs that the patient has to titrate themselves. I found I generally took about 32 ml 3 times a day but some days that wasn't enough and I had to take more and some days it was too much and I decreased how much I was taking. I suspect that has something to do with what I had eaten and how those foods affected me.

Please feel free to ask anything about this you want. I am not on Connect every day but I will get back to you. I think I am one of the Connect mentors who has the most experience with HE and these drugs.
JK

REPLY
@contentandwell

Hi, @clutch I used Lactulose prior to my transplant due to HE episodes. It was prescribed for me initially in my local hospital but when I went to a hepatologist at Mass General, my transplant hospital, she prescribed xifaxan which I was able to take without the need for lactulose. Eventually though my liver worsened of course and my HE episodes resumed. With xifaxan alone I went about 9 or 10 months with no HE episodes. When HE resumed I had to add lactulose back in along with xifaxan.

Xifaxan apparently works differently than regular laxatives. It somehow helps to flush out the bacteria that go to your brain and cause the episodes.

Next week it will be five years since my transplant and I am not quite sure exactly what it does differently but I do know that other laxatives do not operate in the same way. If there were other laxatives that would do the same I am sure they would recommend them. I do not believe you can get lactulose OTC. It was NOT a very expensive drug with my insurance, vs xifaxan which was quite costly. I think depending on your income you can get various grants to help with the cost of xifaxan but we were paying about $700 a month. When you are on Medicare as I was and paying that much though, you get to the "donut hole" fairly quickly and the cost goes down considerably. I don't remember exactly what we paid when I hit the donut hole but I think it was less than $100 a month.

Lactulose is one of the very few drugs that the patient has to titrate themselves. I found I generally took about 32 ml 3 times a day but some days that wasn't enough and I had to take more and some days it was too much and I decreased how much I was taking. I suspect that has something to do with what I had eaten and how those foods affected me.

Please feel free to ask anything about this you want. I am not on Connect every day but I will get back to you. I think I am one of the Connect mentors who has the most experience with HE and these drugs.
JK

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Hi @contentandwell,

I so appreciate the information you provided about the laxative products you have used. Your detailed descriptions were very helpful.

REPLY
@hopeful33250

Hi @contentandwell,

I so appreciate the information you provided about the laxative products you have used. Your detailed descriptions were very helpful.

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@hopeful33250 I just realized I made a mistake in what I said. Xifaxan is not a laxative. I meant that lactulose works differently from other laxatives. If I recall xifaxan basically kills the bacteria in your gut so it does not get through to your bloodstream and then to your brain.

Sorry for the error.
JK

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@contentandwell

@hopeful33250 I just realized I made a mistake in what I said. Xifaxan is not a laxative. I meant that lactulose works differently from other laxatives. If I recall xifaxan basically kills the bacteria in your gut so it does not get through to your bloodstream and then to your brain.

Sorry for the error.
JK

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No problem @contentandwell, I was most interested in knowing how the lactulose worked.

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@hopeful33250

No problem @contentandwell, I was most interested in knowing how the lactulose worked.

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@hopeful33250 I believe anyone who has been on lactulose will tell you how good it was to get off of it. It's really obnoxious tasting and the effects of it prevent you from wanting to be around anyone else.

When I was in the hospital after transplant if I was feeling a lot of pain my husband would say in a very happy voice "No more lactulose" to make me feel better. My daughter made a joke about the whole thing and she would say the name "lactulose" in a sing-songy type of voice to make me laugh. It was an experience, for sure. Better than an HE episode though.
JK

REPLY
@contentandwell

Hi, @clutch I used Lactulose prior to my transplant due to HE episodes. It was prescribed for me initially in my local hospital but when I went to a hepatologist at Mass General, my transplant hospital, she prescribed xifaxan which I was able to take without the need for lactulose. Eventually though my liver worsened of course and my HE episodes resumed. With xifaxan alone I went about 9 or 10 months with no HE episodes. When HE resumed I had to add lactulose back in along with xifaxan.

Xifaxan apparently works differently than regular laxatives. It somehow helps to flush out the bacteria that go to your brain and cause the episodes.

Next week it will be five years since my transplant and I am not quite sure exactly what it does differently but I do know that other laxatives do not operate in the same way. If there were other laxatives that would do the same I am sure they would recommend them. I do not believe you can get lactulose OTC. It was NOT a very expensive drug with my insurance, vs xifaxan which was quite costly. I think depending on your income you can get various grants to help with the cost of xifaxan but we were paying about $700 a month. When you are on Medicare as I was and paying that much though, you get to the "donut hole" fairly quickly and the cost goes down considerably. I don't remember exactly what we paid when I hit the donut hole but I think it was less than $100 a month.

Lactulose is one of the very few drugs that the patient has to titrate themselves. I found I generally took about 32 ml 3 times a day but some days that wasn't enough and I had to take more and some days it was too much and I decreased how much I was taking. I suspect that has something to do with what I had eaten and how those foods affected me.

Please feel free to ask anything about this you want. I am not on Connect every day but I will get back to you. I think I am one of the Connect mentors who has the most experience with HE and these drugs.
JK

Jump to this post

@contentandwell, thanks very much for the detailed information. That does help!

REPLY
@hopeful33250

Hi @contentandwell,

I so appreciate the information you provided about the laxative products you have used. Your detailed descriptions were very helpful.

Jump to this post

@hopeful33250 Hi , Xifaxan is more like an antibiotic they use to kill H-Pylori in the small intestines. You know if you have it if you get the Lactulose Breath test sometimes called SIBO test .

I’ve had a few , and been on that RX a few times ( it’s 2 week max being in it ).
I requested to go on it all times even being neg at time for SIBO . I’ve had horrendous digestive disorders fir 7.5 years, 5 Gastro Drs … so many tests, RX , diets. , holistic . No relief. Going for 3 tests at Mayo Clinic Jacksonville Oct 3-6 w/ new Gastro . Long wait to get televisit!! Finally going . Praying 🙏 they can help cure me or something soon . Rosemary….

REPLY
@rozy288

@hopeful33250 Hi , Xifaxan is more like an antibiotic they use to kill H-Pylori in the small intestines. You know if you have it if you get the Lactulose Breath test sometimes called SIBO test .

I’ve had a few , and been on that RX a few times ( it’s 2 week max being in it ).
I requested to go on it all times even being neg at time for SIBO . I’ve had horrendous digestive disorders fir 7.5 years, 5 Gastro Drs … so many tests, RX , diets. , holistic . No relief. Going for 3 tests at Mayo Clinic Jacksonville Oct 3-6 w/ new Gastro . Long wait to get televisit!! Finally going . Praying 🙏 they can help cure me or something soon . Rosemary….

Jump to this post

@rozy288 Hi Rosemary,

I really appreciate the added information about Xifaxan. I am sorry to hear about all of the digestive problems you have had. It really can be frustrating to have digestive problems. It creates difficulty with eating and so much more!

I am so glad to hear that you are being seen at Mayo. I look forward to hearing how that appointment goes. I hope that it gives you some more information and some help.

If you don't mind sharing, what is the most difficult digestive symptom you have right now?

REPLY
@rozy288

@hopeful33250 Hi , Xifaxan is more like an antibiotic they use to kill H-Pylori in the small intestines. You know if you have it if you get the Lactulose Breath test sometimes called SIBO test .

I’ve had a few , and been on that RX a few times ( it’s 2 week max being in it ).
I requested to go on it all times even being neg at time for SIBO . I’ve had horrendous digestive disorders fir 7.5 years, 5 Gastro Drs … so many tests, RX , diets. , holistic . No relief. Going for 3 tests at Mayo Clinic Jacksonville Oct 3-6 w/ new Gastro . Long wait to get televisit!! Finally going . Praying 🙏 they can help cure me or something soon . Rosemary….

Jump to this post

Hi Rosemary, I have also been to many Gastro Drs with no help. Finally went to one who told me he would figure it out and he did, with a colonoscopy and endoscopy, diagnosed with pancreatic insufficiency, and tortuous colon with many twists and turns. Am on enzymes, and other meds and doing so much better. Its all about the right Dr. Good luck!

REPLY
@hopeful33250

@rozy288 Hi Rosemary,

I really appreciate the added information about Xifaxan. I am sorry to hear about all of the digestive problems you have had. It really can be frustrating to have digestive problems. It creates difficulty with eating and so much more!

I am so glad to hear that you are being seen at Mayo. I look forward to hearing how that appointment goes. I hope that it gives you some more information and some help.

If you don't mind sharing, what is the most difficult digestive symptom you have right now?

Jump to this post

@hopeful33250 The worst of my symptoms are 3000-4000 deep wet sewer water tasting belches day and night . So much non stop 🛑 gastric distress , non stop churning , grinding .. loud small bowel sounds that could wake you up at night . Like aliens 👽 in a war zone . I can’t eat anything w/o being so sick 🤢. I’ve been diagnosed w/ chronic gastritis , small hiatal hernia , esophagitis , Class B GERD, diverticulosis. I’ve had so many tests in the 7 years, elimination diets , tested for everything. I’m a medical mystery to the Dr’s . It’s a hard hard life . I can’t enjoy much of anything. We cook at home nightly and no fast food , caffeine , low dairy and low sugar . I just turned 60 last week. I’ve lost most of my 50’s to this .
They will do endoscopy w/ endo flip , a special CScan of small bowel and other organs nearby , a 2 hr Lactulose a Breath test ( again ) at Mayo.
May or may not be able to figure it out Drs said . I live on Ultra Pepto, tried every enzyme, every pre pro Biotic , every PPI , you make it I’ve done it .
Thanks for asking … keep praying 🙏!!

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