Lactulose doesn't work, but diet does - Dr. insists I take Lactulose

When I went to our small local hospital with acute liver failure this past July 4, it was a horrible experience. Nurses force fed me lactulose, every 2 hours, for 24 hours. Staff did not help me to the (tiny) bathroom, or out of it, and mostly ignored me except for the force-fed lactulose. I was there ten days, and developed one complication after another. My regular doctor signed me into the hospital, then disappeared for her vacation. I saw about a dozen doctors, and none of them gave me the same info as any of the others.

My bilirubin (sp?) count was over 30. I developed an UTI, and a blood infection. No one would help me clean up (and I was unable to clean myself after a BM), and my bed was not changed one time. (You can only imagine. . .)

All the doctors were in agreement: I wasn't going to make it. Jaundice was severe (it had come on suddenly about two days before). So, basically, I was given up as a goner.

My kids, bless their hearts, figured out what was going on. They conferred with a larger hospital an hours' drive from here, and with help from a doctor I had not previously seen, and the hospital case worker, my stats were faxed to them. This is a big, well-respected hospital. . .but they refused to accept me. Instead, they referred me to UPMC in Pittsburgh, about 4 hrs. away. I was taken that day by ambulance.

I stayed there for six days, and had an excellent team of doctors. I did everything they suggested, including the lactulose 4X a day. Some of my numbers improved, and the doctors sent me home with instructions for nutrition, medication, etc. I explained that the lactulose made me very, very ill - and didn't result in improved bowel movement. Instead, when I take it I suffer from bloating, pain, lack of urination (I have a deficient kidney from another, earlier problem), and very sparse, rare bowel movements. After a day or two of this, I give up, and simply rely on lots of fiber, fruits, vegies, and an overall light, healthy diet. I eat 3X a day, with snacks of prunes, no sodium trail mix, etc. I keep sodium levels to less than 1,000 gms. a day.

I've been home three weeks. I have days when I feel quite well - got into our little pool one day, did light weeding for 10 minutes, do light PT suggested by my home PT therapist - and days when I feel I can barely do the light walks around the house he suggested.

All my numbers have vastly improved. I had been on two BP meds, with numbers still sometimes very high. I'm off those, and my BP averages 112/62. My bilirubin was down to 11, and the edema I had in both legs has nearly disappeared.

My only problem is the doctor's insistence that I take lactulose. As long as I stay off it, I have 3-5 very healthy BM's a day. Plenty of volume, good color, etc. I also have good urination, going 4-5X a day.

Every time I get to feeling good, some doctor or nurse insists I MUST take lactulose, at least 2X a day. Since I'm trying to really stick with doctors' advice, I'll start that medication again. . .and have a couple of MISERABLE days: weak, unable to have a healthy BM, very little urine output, bloated, etc. It takes me two days to reverse the effects of one day on this medication.

I am SO frustrated! I have had two doctors say that the lactulose isn't necessary if I'm having 3-4 healthy B.M.'s a day. Then my home health care nurse says, no - I MUST take this med. Another specialist (lined up by my Pittsburgh team), backed her up on this. So. . .yesterday I took the lactulose, and today I was MISERABLE. I expect tomorrow won't be much better.

I'm confused, and getting angry. Why fix something that evidently isn't broken, esp. when it causes other problems?

BTW: I quit drinking for 20+ years, and picked up again when my twin brother was murdered in 2001. I am very SURE I will never drink again - not even a second of temptation. I have a wonderful husband, remarried last year, who is following the more healthful diet, and won't even drink a beer now that I'm off the sauce. My business, which failed in 2006, is now back on track (with my husband's help), and life is lookiing promising. . .assuming I can beat this disease, and regain my health.

Post Edited (WorkinGirl) : 8/13/2012 9:29:59 AM (GMT-6)

I waS diagnosed with Alcoholic hepatitis. I don't know about the HE, but I was never "out of it." In fact, I was able to contribute to my business, communicate with suppliers, etc., without a problem. Though very weak and tired for a long time, my liver function tests were normal until about 6 weeks before my admission to the hospital, when they were suddenly very elevated.

I don't know about the ammonia levels. I DO know that lactulose does not result in bowel movements, and in fact interferes with urination. All it does is make me bloated, sick, nauseous, and weak. After stopping this med, and eating a well-balanced, high fiber, low sodium diet, things go back to normal in a couple of days. I have several B.M.'S, and good volume urination. Not only this, but they both have very strong smells - of ammonia. Not so with lactulose.

So I'm going to stick with what I'm doing, and let the blood tests determine over time if it's working or not.

Thanks for the quick reply!

Ask your docs what your ammonia levels are/were. If you're eliminating the ammonia without lactulose (which I doubt) than stay with your diet. I took lactulose for almost 5 years and over that time, never had a solid BM, but I did have at least 5-8 loose BMs each day. Just having a BM does not eliminate ammonia from ones blood.

WorkinGirl, thanks for the info. I am very surprised, though, about Lactulose alone not needed for clearing toxins. However, if you have no signs of HE, I say you're fine with just diet.

Hugs,
Connie

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682338.html




The above link can be copied and pasted into your browser , I think this will clear up a few of your issues or questions . Bowel movements due to diet aren't clearing your body of ammonia . You could poop till the cows come home but if you are not taking Lactulose for liver disease then just pooping ain't gonna be sufficient . You really need to find out from a Hepatologist ( Not G.I doctor or nurse ) what is best for you .
The repercussions for not taking it far out weigh the side effects from taking it . I hated it years ago and it doesn't seem to ever " grow on you " , A small inconvenience in the scope of things .



A. Ziffle

Post Edited By Moderator (hep93) : 8/14/2012 4:56:42 PM (GMT-6)

I never had HE. The worst I got, at any point, was mild confusion. So perhaps that's a consideration. I've learned, however, that there's been a growing debate in the medical community about whether or not LL is the only viable recourse for HE. The goal is to maintain effective, well-balanced flora in the gut, and this is what "cleans" up the ammonia. For many, or even most, LL is the best recourse. As evidenced by many, even on these forums, it has limited - or no - effect for some people.

Once again, have you been tested for ammonia in your blood. Saying, or thinking that you don't have HE, means zero, without blood work. I'd be willing to bet that no one with HE wants to admit they have it, because they have it.

My doctors, and home health care nurse, are all very happy with my progress - which has significantly improved, and continues to do so, since getting off the LL.

I'm not trying to fix myself - I followed doctor's orders on the LL, until I simply couldn't do it any longer. The doctor at that time told me about managing things with diet, to see how it worked. It worked, and everyone - my PCP, the specialists I'm seeing at UPMC in Hamot, Erie, and the team from UPMC in Pittsburgh overseeing the rest of the team, are happy to keep things as they are, as long as it's working. If they advise that I need to go back on LL, I will certainly do so.

Right now, my jaundice is all but disappeared, except for a hint in my eyes - and I was yellow as a school bus. The edema, also extreme, is also nearly gone. My stomach, while not svelte, is 1/2 the size it was. I lost 10 lbs. this week. (Had one bad episode, when I ate a small amount of chili. Though it was low sodium, it was still a bad idea!)

Everyone is different, and our bodies respond to different things. Mine objected violently to LL.

I have had a couple of tests for ammonia levels - another one tomorrow - and the doctors seem unconcerned about them. I get lab work 2X weekly, and the plan is to reduce that to 1X weekly, as long as results remain in the ranges they have been in, or keep improving.

Post Edited (WorkinGirl) : 8/16/2012 10:36:03 AM (GMT-6)

On another subject. I discovered that eating beef is a "no-no." Had fish at my son's house one evening, and it tasted terrible. Fortunately I didn't eat much, b/c I had a terrible night of itching and blotchy rash. Must have developed an allergy?

My sister went to Maine, and brought me home some frozen soft-shelled lobster tails. Does anyone know if this is a food that causes problems for hepatitis patients? I'm tempted to try one for my hubby's and my anniversary on Monday - but don't want to ruin a celebration by becoming ill! I couldn't find any info on this anywhere.

Thanks!

I agree with David. Also, you will seldom (if ever) hear a doctor tell you not to eat red meat if you have liver disease. We patients have heard it from others or discovered it ourselves. Red meat (including organ meats) is the most difficult protein to digest, even in a healthy person. In a diseased liver, it has to work overtime trying to process it. This results in feeling unwell, queasy, and sometimes upchucking. Why bother when there are so many other sources of protein? I have a new, healthy liver (so far), but still have hep C. So I eat chicken or turkey about 3-4 x a week, fish or shellfish once a week and plant or dairy protein the other days. Don't forget beans and soy products as great sources of protein.

Hugs,
Connie