When is Lactulose recommended?

Posted by clutch @clutch, Sep 14, 2021

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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

bgiddio | @bgiddio | Sep 21, 2021

In reply to @rozy288 "@hopeful33250 Hi , Xifaxan is more like an antibiotic they use to kill H-Pylori in the..." + (show)

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!

rozy288 | @rozy288 | Sep 21, 2021

In reply to @hopeful33250 "@rozy288 Hi Rosemary, I really appreciate the added information about Xifaxan. I am sorry to hear..." + (show)

@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 🙏!!

gloria811 | @gloria811 | Sep 21, 2021

Hi Rosemary,
I too have lived with some of these similar issues for many years. One of the things that has helped me is following a low FODMAP diet. I wrote a list (and placed each item of food in a chart) of my favorite fruits and vegetables and their corresponding offending sugars. If I have too much of the offending sugar(s) I have the worst time especially at night since I cannot digest these sugars. It's really been trial and error for me over the years. I read that you have tried digestive enzymes without relief but what I have found is that if I limit the particularly offending sugars and add the digestive enzymes I am able to have a better quality of life. I'm hoping that this might be of help for you also. 🙏

JK | @contentandwell | Sep 22, 2021

In reply to @rozy288 "@hopeful33250 Hi , Xifaxan is more like an antibiotic they use to kill H-Pylori in the..." + (show)

@rozy288 Are you referring to xifaxan when you say you can only be on it for two weeks? That must be true for your type of problem but people with cirrhosis are on it for much longer. I took xifaxan for about 16 months.

I hope you can solve your digestive problems, it must be so difficult to live with. Have you tried the FODMAP diet recommended by @gloria811? That sounds like it could help, I know it does with many things.
JK

tupelogirl52 | @tupelogirl52 | Nov 25, 2025

In reply to @contentandwell "Hi, @clutch I used Lactulose prior to my transplant due to HE episodes. It was prescribed..." + (show)

@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

I just found out I have most of the symptoms of HE and waiting to get in to see a Dr...
I FOUND HE Symptoms on line... Me to a T...
What are your HE episods like? I cant remember my name sometimes, an cant even carry on a conversation.
There are no Drs near me that even know what this is. I had to DEMAND a prescription for lactulose when she to me to go find another Dr ! My Blood test was 50% high Ammonia. She was Digestive Disease Specialist !!

minajo | @minajo | Jan 27 9:56am

Hello, my autistic, epileptic daughter, post sigmoidectomy 2024 with many setbacks, sees her neurologist tomorrow
She is on Lamictal for seizures, Seroquel and buspar for autism, behavior but still 3x day lactulose with Miralax only in am
Recently antibiotic for bronchitis
Thoughts on continued lactulose , she has a stool usually every other day, but how safe is it ?

Lisa Lucier, Moderator | @lisalucier | Jan 28 12:21am

In reply to @minajo "Hello, my autistic, epileptic daughter, post sigmoidectomy 2024 with many setbacks, sees her neurologist tomorrow She..." + (show)

@minajo - I wanted to let you know I moved your post here to where other members were talking about lactulose:

- When is Lactulose recommended?https://connect.mayoclinic.org/discussion/lactulose/

Hoping members such as @tupelogirl52 @gloria811 @rozy288 @clutch and @hopeful33250 will have some input for you on lactulose.

I'd be interested to know if her neurologist has any input about this medication at the appointment tomorrow or if your local pharmacist has some thoughts, if you'd please post some information on how that goes?

minajo | @minajo | Jan 29 11:32am

In reply to @lisalucier "@minajo - I wanted to let you know I moved your post here to where other..." + (show)

We saw neurologist yesterday, discussed seizures , antipsychotic, those important meds with her autism, epilepsy,
I mentioned lactulose but she referred to g. I. I want to see how she absorbs meds with lactose
She just finished antibiotics, was off due to loose stools with that so now seeing how she does and if we can back off 3x day to less
We see g. I. in month
For now lactulose has worked best, post op 1 year but taken a long time Thank you all for interest, Lisa is nonverbal so can't describe symptoms.

Lisa Lucier, Moderator | @lisalucier | Jan 29 12:09pm

In reply to @minajo "We saw neurologist yesterday, discussed seizures , antipsychotic, those important meds with her autism, epilepsy, I..." + (show)

@minajo - thanks for the update on your daughter. Glad you got some of your concerns addressed by the neurologist. I hope your visit in a month with the gastroenterologist is also productive.

I also wanted you to meet @jodeej @jeanne5009 @gaylea1 @amyintucson @kltchrmn who have mentioned lactulose in different discussions on Mayo Clinic Connect, who might comment on their experiences with taking lactulose on a continued basis.

gaylea1 | @gaylea1 | Jan 29 4:11pm

In reply to @lisalucier "@minajo - thanks for the update on your daughter. Glad you got some of your concerns..." + (show)

@lisalucier lactulose was the bane of my life but I have to admit that it definitely stopped my HE episodes and helped me through my wait time for a donor. Post transplant I never needed it anymore. I'm glad now that I had it to help me. I'm 7 years post transplant now ❤️

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