This is something that I have worked my way though so many times I couldn't count. Not that I could count because somedays counting by 3's I can only get to 15. Somedays I wake up and have no idea where I am. I have been putting away groceries all while trying to figure out if we went into the store or did curbside pick up again. I have dozed off at the table and woke up in a panic because I couldn't remember if the boys had gone to school. I have gotten lost... in my laundry room. Every day is a struggle. I focus, double and triple check everything and second guess myself all day long on the bad days. On the good days, I deep clean, bake goodies and make some awesome dinners. This is just how life with Hepatic Encephalopathy goes. I try my best to stay on top of it, but life happens and to be honest if it was as easy an a pill I would be much better at it. Its not.
Warning: Theres some TMI kinda talk coming up. I know some people are kinda sensitive about these things. Me not so much, but Ill try to keep it PG!
If y'all have been following for a while you have heard me talk about this. But if you are new around here or are here looking for some answers about H.E, I figured I would answer a few questions I have gotten, plus share a little more about how I am treating my Hepatic Encephalopathy. If we are friends on IG you may have seen my water bottles filled with the dreaded Kristalose (Lactulose). And heard me talk about how awful it is and how I am really bad at taking it as I should. So let me explain.
Wait, actually first let me say that I am not a doctor. Im just sharing my experience and what I have done to help with the side effects that I have. Please talk to your doctor before making any changes to your medication.
What does Lactulose do?
Lactulose is a laxative. When taken to treat H.E it draws ammonia out of your bloodstream and into the colon and then binds to the ammonia. Then it forces toxins out of you. And by force, think stomach flu and food poisoning times 2. No pun intended.
Lactulose is a laxative. When taken to treat H.E it draws ammonia out of your bloodstream and into the colon and then binds to the ammonia. Then it forces toxins out of you. And by force, think stomach flu and food poisoning times 2. No pun intended.
How does a medication that helps also hurt you?
Sounds like a mean joke right? The toxins that Lactulose takes out of me are the ones that cause the H.E. As the toxins are eliminated, my head clears up but my body takes a hit from the side effects. Its draining. Mentally and Physically. The hard part is staying hydrated while getting rid of everything. And its tricky, because dehydration makes the H.E worse.
Why can't you leave the house?
Ok, when I first started taking this, the doctor told me it might take a few days to start working. So the first time I took it, I knocked it back and figured nothing would happen. I brushed my teeth and got dressed and then got the boys dressed for a walk to the park. By the time I got to the bottom of the stairs, I had to turn around and run back up stairs to the bathroom. Apparently he meant it would take a few days for my head to clear up. The lactulose kicked in within an hour. I spend the next few hours playing with the boys on my bed while running to the bathroom over and over. I remember thinking, this can't be right! It is. They said they wanted the toxins out, this does it! Along with everything and anything you have eaten, like ever in your life.
What tips do you have for others who are just starting Lactulose?
• H.E is a hard pill to swallow. So is Lactulose. Well its not actually a pill. Its more like a shot of corn syrup. You can mix it with something but I used to just toss it back and chase it some ice cold water. If you have a hard time taking your lactulose because it is so thick, ask your doctor if Kristalose is an option. It is a powdered packet that you mix with water. Also, mix it as directed with at least 4 oz of water. When I started taking it I would take it with as little water as I could so I could get it down in one chug but it always made me sicker, faster and worse than when I mixed it right. Kristalose is easier to swallow and has been less traumatic on my stomach.
• Eat something. Nothing heavy but what goes in must come out and if your stomach is empty all you are going to do is piss you stomach off. The lactulose rumbles are hunger rumbles on steroids. The boys used to tell me there were monsters in my belly. Then they said it sounded like a thunder storm. Feels like it too. Give your self something to process and get rid of. Other wise you will spend the day with nothing more than god awful, painful cramps, bloating and rumbly stomach.
• Stay close to home. Trust me on this. Give it a few hours to completely pass though before you put on those cute jeans and try to go hang out with your friends. Matter of fact, don't even bother with pants until you know how your body handles lactulose. I have heard many say they take it before bed so they can go when they wake up. Yeah, I am not one of those people.
• Say goodbye by to modesty. This medication is the most un lady like medication I could ever imagine there is. There is a reason I choose to take it when no one is home with me and I can just do what I need to do with out worrying about anyone knowing whats going down. Its not a graceful process at all. But its worth it. So is soft toilet paper!
• Take it as prescribed. I will admit, I struggle myself with this. The prescription says to take 3 times a day but my Dr said that if three times a day was too much, two would be ok. But some days even twice is to much. Some times I will take it for a few days, feel great and then take a day off because I was just to exhausted to go though it all again. But I always kick myself in the butt for doing it when I have to force myself to take it again. And Im awful at taking it on the weekend. Im trying to be better at it.
• Hydration is key. Let's be honest, this medication will drain you until you are sure there is nothing left in you. There is. And it will take that too. Make sure that you are replenishing your fluids and staying hydrated. I know its not the most exciting thing in the world, but we can't live with out it.
Speaking of hydration, I wanted to share with y'all a little something that my Cardiologist recommended last month. Its called Liquid IV. Its a packet that you shake into your bottled water that actually triples the hydration. Think gatorade on steroids with a little bit of a saltier more hydrating kick. Its like 3 bottles of water in one. And it really does help!
There are some days that I really don't want to take my lactulose. I will be the first to admit that there are days I don't. When the boys were young or I have extra kids after school, I didn't take my meds. If I did, by the time they were home, I was depleted and pretty much unable to adult. The struggle is real. There are days that I am so drained from the day before that trying to convince myself to take it again is next to impossible. It has been a little easier now that I switched to the kristalose but I still have those days. I don't want to spend the weekends in the bathroom, so I usually use those as my break days. I have talked to other liver patients who have had to do the same thing. Sometimes we just need a rest. But its also hard to play catch up come Monday.
Life with liver disease isn't easy. We are human and are allowed to feel defeated and have bad days. Those are the days we ask "why?" Those are the days we get angry and cry. But then we have to pick ourselves up and remember what we are fighting for. We got this.
Have you or anyone you know taken Lactulose or Kristalose? Can you relate?
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