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Lactulose Zifaxin delicate balance

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Posted 1/7/2013 8:06 PM (GMT 0)
Hi, everyone ... so sad for those of you battling ESLD with such terrible symptoms.  I am doing much better and my labs last time were pretty good.  Am on lactulose & zifaxin (and tegretol for unrelated seizures) and finding it EXTREMELY challenging to stay balanced.  Find myself just eating crackers or rice because they're palatable.  We went out for a very early dinner on New Year's Eve and I couldn't eat my dinner.  Spices just do me in.  Things smell strangely to me.  Most foods make me gag.

My husband and I have stopped eating the same meals even though I still prepare his (I cook for two or three days' worth so he gets nutritious meals still).  I've tried home made soups but can't eat tomatoes or vegetables very well right now.  Eggs and yogurt are o.k.  Cheese is o.k. in small amounts.  Can't drink juice, only water and herbal tea.

If I step away from these "controls" I pay for it so badly the next day ... it's just not worth it.  That's not healthy thinking is it?  To think that it's not worth it to eat?

But it's not just the food ... trying to plan an outing around bathroom stops is daunting ... I'm thinking of buying women's diapers so I don't have such fears.  I manage at home ok ... but I sleep SO MUCH!!  The tegretol makes me sleep through the night so that's helpful at least.

I'm trying to change my expectations as to what I can accomplish but I feel so useless.  Then at night I am in a rage (but the meds for the seizures help control that too).  I don't act out ... I just withdraw and try and talk myself down.  AND THIS IS WITH FAIRLY NORMAL TEST RESULTS!!!  God help me if it gets bad again.

I am so hoping that this all calms down and I get some kind of rythym going that is manageable ... right now it just isn't.  My head is pretty clear though ... I'm just a bit wobbly otherwise.

Thanks for listening.

 

Posted 1/7/2013 10:23 PM (GMT 0)
Deb, I just wrote a long post to you, but it wouldn't go through. To summarize: Are you on hep C treatment?

What you are eating is protein, which is good. Lots of water and herbal tea are also good (I drink green tea with honey and lemon.)

I hear you on the fatigue. It just goes with liver disease, particularly hep C. I've been tired for 20 years and it keeps getting worse. It's frustrating, but I've come to accept that there are certain things I can no longer do. This is also due to artificial hips and 3 revisions.

I take a bunch of meds for sleep (no sleeping pills, just off-brand use of drugs for other things that happen to make one drowsy or enhance sleep: Trazodone, Flexeril, Benadryl, and recently I've added 1 mg of melatonin. If I don't get a total of at least 10 hours' sleep, I'm good for nothing. Learn to delegate or pay someone to do certain things for you. I have a cleaning lady once a month who cleans the bathroom thoroughly with sanitizing Lysol cleaner and bleach, and also vacuums my wall-to-wall carpet.

Are you taking a MV w/o iron? You probably should be. Speak to your doctor about it. Also take vit. C...500 mg daily.

We are all just getting by the best we can, so don't be so hard on yourself.

Hugs,
Connie
Posted 1/7/2013 10:35 PM (GMT 0)
Deb

What is so interesting to me is your ability to be INSIDE these feelings and yet still articulate them.

At our house, pre transplant, Mike's outward signs were the same..the food, the smells, the gagging, the odd sleeping...but he had no way to reflect on what was happening to him. Or chose not to. He could not observe his feelings of rage.

He, like you, wanted NO spices, nothing that "smelled," nothing very flavorful. Tomatoes were horrible to digest. Meat of course. He drank a lot of ensure so as to get some nutrients in, especially protein. Eggs worked, as you say. He ate some very very plainly prepared chicken. Lots of apple sauce and canned peaches, even when the fresh were wonderful.

I feel for you with a family to look after.

And respect your wanting to handle things when your body is fighting with you like this.

Hugs,

Carol
Posted 1/7/2013 10:36 PM (GMT 0)
Deb , I can relate to a lot of what you are saying . I went through those same problems for a year solid along with severe ascites problems . I feared eating anything that would possibly cause encephalopathy or more fluid build up , Food lost it's taste also mainly because I couldn't use salt . I salted food heavily even prior to tasting it through out my life prior to diagnosis . I survived on protein shakes & peanut butter and jelly sandwiches for along time until my body started getting accustomed to the new diet and taste experience . Mind you I was also taking vitamins also . Something you probably already know but just a reminder , Don't take medication without food on your stomach . Force yourself to eat if need be , This isn't a option you have to eat when taking meds .

I know eating as healthy as possible is the best way to combat further problems with this disease but in my opinion you need to find a happy medium at least until you get this worked out . Lactulose is nasty stuff but it has to be taken . David and I both have shared some horror stories regarding the diarrhea effect it does on you , You are not alone there either . As far as adjustments , If it's keeping you clear headed enough to type the post above there's a good chance you are taking it properly .

A. Ziffle    

Posted 1/7/2013 10:47 PM (GMT 0)
my husband went thru stages . . . couldn't eat enough mangos for snacks, and shrimp any way they were cooked he loved them, he ate so much chicken he got tired of it. Post transplant . . no tomatoes, no onions, no mushrooms, tomatoe sauce gives him an upset stomach . . He is hard to cook for!!

Good Luck
Posted 1/8/2013 1:30 AM (GMT 0)
Same here in our household.  My hubby really could never type what you did.  But all the same feelings about food and the gagging etc.

Tiredness. 

  Just last night I was thinking about his schedule and it seems what has happened is that his average "day" is 2 hours, during which time he potties, eats, plays with the dog, takes meds, then he sleeps for two hours, then awake for 2 hours and eats etc and that schedule goes on days and nights.  At first I fought it, but it was such a struggle with him to try to keep him awake in the day and asleep at night and about 3 months ago, just gave up all control and he figured out his own schedule.  Of course, it makes for a crazy household and is not always the same, but generally the 2 hour day and 2 hour night prevails. 

    Hope you are working out what works for you.  Best to those of you who are caring for yourselves with this disease...can't imagine how you do it.  High Five to You All.

Angie1953

Posted 1/8/2013 1:41 AM (GMT 0)
 Angie smilewinkgrin .
Posted 1/8/2013 3:20 AM (GMT 0)
I ate fish and chicken breasts with no seasoning, other than lemon juice. Pretty neutral stuff, and you have to maintain protein. Don't skimp on lactulose, there's nothing worse than to be out of it. I used to have to wait a couple of hours each morning before leaving home, to rid myself of ammonia and other goodies. After that, I learned where every rest room in town was located, plus carried toilet paper in my car, for times when the side of the road was my only option. It is embarrassing to deal with, but you have to do it.
Posted 1/8/2013 5:18 PM (GMT 0)
Well it's good to know I'm not alone in terms of troubles eating (or with bm's) ... I'm pretty sure I'm not as sick as many on here who are fighting ESLD and my recent good lab tests show that. There just isn't anything out there to help you prepare ... except maybe this forum.

I'm HOPING I'll be one of those who can stabilize with the lactulose, etc. The thing is, you let your guard down for one day and it really kicks the hell out of you. But it's better than the alternative.

Connie I'd love to be on treatment, especially the new one. But since I decompensated and then began having HE troubles I'm no longer a candidate. I tried 4 treatments and none worked. I am taking vitamins C, E, D, Calcium and D. It's something my nutritionist worked out.

MamaLama, Cable Poodle, Angie, A. Ziffle and David ... I don't think I'm CLOSE to being as ill as your loved one or you were/are. The symptoms scare the hell out of me and I sure hope someone who understands is around if and when I get that ill because I'm sure I won't be able to control it. I sure understand why Mike had such terrible times.

If things go as they are they will take me OFF the transplant evaluation and just follow me every three months again. That would be great!

Apple sauce is my staple, too. That's not such a bad thing after all. I just want to keep this illness at bay as long as I possibly can. Thanks for making me feel like I'm not alone.
Posted 1/8/2013 5:54 PM (GMT 0)
 " If things go as they are they will take me OFF the transplant evaluation and just follow me every three months again. That would be great! " .

That's where I'm at exactly , Remember this took years ( around 2 ) to get to for me . Hopefully that wont be the case with you , Just because one us experienced identical symptoms doesn't dictate your path to stabilization will be the same .

 You know you are always welcome to lean your head on the forums shoulder so to speak . You or nobody else has got to feel alone in the sense of support here . Yes I also agree with your thoughts on the caretakers behalf , It's got to be more than most of them can bare to watch us suffer when we just cant seem to get ourselves on track . I see where I've been as patient and stand amazed that Connie and David managed those hardships solitarily . I had the help of my wife like you with your husband . Guess it's a case of determination that drove them to go on , Some folks are just born to be pig headed , in a good way of course .

I have a cousin with which we fought ( Fist ) constantly as children . I dreaded knowing we was gonna fight always just due to the fact that you almost had to incapacitate him to keep him from getting back up and swinging on you again . I think we have a few members here who have been cut from that same cloth  turn  .

A. Ziffle   

Posted 1/8/2013 9:54 PM (GMT 0)
Ziff, my grandmother used to say I was "the most contrary child" she's ever known (and she raised 5 of her own.) Tell me I can't do something and I'll turn myself inside out to prove I can. Some stubborness can be a good thing.

Deb, sorry you can't do treatment, but it will be great if you can stabilize.

Hugs,
Connie
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