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End stage liver failure and drooling/no bowel activity
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End stage liver failure and drooling/no bowel activity

My mother-in-law has liver failure and end stage cirrhosis. She has had major diharia and incontinence for over seven months. During the last three days her bowels have not moved, although she is urinating. She is more drowsy and has noticed she has this disturbing drooling.  She is on lactulose and has NOT missed a dose. Is this an alarming symptom? I am going to call hospice to ask a nurse. I just wondered if anyone has seen this with anyone they have cared for with cirrhosis.
Thank you for your continued sharing.
Mary Z
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Well, your thanks are welcome but kind of premature, I do not recall in the two years I have been here of ANYONE posting as a caregiver for end stage liver disease.  

I did care for a friend that we lost to ESLD, but when we were at the point you describe, we had long since put round-the-clock care in place.   It seemed to be the most compassionate thing to do, since none of us were doctors or nurses.  

It seems you might have a hard time finding someone here who would be willing to make a call on what you describe, not because we don't care, but because you are talking about a deadly serious disease that deserves better information than you might find on a forum full of patients.

Take care,

Willow

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217229_tn?1192766004
Willows is kinda right.

We're all the patients. We kind of look at it from your mother in law's perspective.

However, I will say - it doesn't sound pleasant.

Make sure you check with her doctors.

And get yourself some relief. You're going to run yourself ragged.

You're at the point where you're hitting the bigger end stages. Give yourself the freedom to let her go into Hospice Care. If she is still coherent, let her make the decision where she would like to go.

Or get yourself assistance at the house - if this is your wish.

But the fear you're living with - that is so very stressful - and so very hard to watch someone go through all of this.

Take some time for yourself - remember what it was like to live before all of this. And remember you are still alive.

Celebrate your healthy life.

Everything that happens from this point on with her - is way beyond what we - the patients -  can help you with.

At that stage, most of us would be unable to be posting here. And most of us have never seen someone completely fail from a liver disease. Because we're battling the diseases ourselves.

Make sure you check with the doctors... This is a long wait and see game for you. I hope you are alright and you get the help you need.

Many hugs and good wishes.

Meki


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Hi Mary,

I
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Thank you for the posts. I am not wanting to make anyone feel awkward. I will not post any more. I think those of you who have responded are very brave, I am just concerned about the symptoms and this is the only website I have found. I know most of you will live a LONG time.......in fact, my best friend Susan has had her husband with Hep C for over 10 years. Its a different story with alcoholic cirrhosis and end stage liver failure. I just thought some of you would have experience. Take care.... I will not post any longer.
Mary Z
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208237_tn?1190189205
     This is a hard one for many to answer, Me included, we are not docs.  I am a certified nurse assistant that works with  the elderly.  None of my clients have major liver problems, mostly strokes etc. I am mostly around to keep them company, monitor BP.  make sure meds are taken. What I can respond with that may help, Is if my clients were showing symptoms as you described I would not be alarmed at this point. Drooling, Drowsy is not major flag in itself,  If patient is already very ill . The  B.M. can very and some people go 4-5 days without.    Hope this helps a little,   a doctor appointment would be best to answer your concerns . My R.N. would not have me rush to E.R. though unless symptoms worsen (drowsiness. No B.m. for over week or more)
          Remember I am not a doctor , I answered since others could not, I can only speak from my experience.    Take care of yourself, Hope all goes well.
                           Aloha ,, R.
                                                                          



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/Don't want to get on anyones wrong side but I was under the impression that hep c was a liver related ilness. Correct me if I'm wrong I"m on this site because I am being tested for hep c and want to be informed.

MARYD ask you dr. about the lactulose it is ment to give you diarriah as to remove the amonia (ammonia) from the liver. I believe I read this on this forum.
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217229_tn?1192766004
"/Don't want to get on anyones wrong side"

No - no way - you will never do that. OK?



"but I was under the impression that hep c was a liver related ilness."

It is a liver related disease. Mary's issues are about taking care of someone who is at the end stage of liver disease. She is taking care of her mother in law who is in the process of (at least to my understanding) dying - or close to the end phase. Her mother in law's condition is much more than we are capable of giving advice about.



"Correct me if I'm wrong I"m on this site because I am being tested for hep c and want to be informed."

You're not wrong - this is a HepC forum area - HepC is a Liver disease - you can get very informed here.

"MARYD ask you dr. about the lactulose it is ment to give you diarriah as to remove the amonia (ammonia) from the liver. I believe I read this on this forum."

Lactulose does a lot of things, including making bowels run very quickly and it does have the affect of amonia (ammonia) depletion.

However - Mary's  mother-in-law is in the LIVER FAILURE stage - and is at end stage cirrhosis. Mary is the Caregiver for her right now - but has a hospice at hand.

None of us - unless we've managed to come back at the very last possible moment have the answers she needs... Unless one of us has also caregiven for someone who is in the end process of dying from Liver disease, etc.

None of us are doctors.

It would be awful for one of us to give advice - and have Mary follow it - only to have it prolong or create a painful end for her mother. That advice needs to be left up to the doctors.

HOWEVER, we can certainly provide support for Mary herself.

At least that is my take on it.

And cat - we can provide knowledge and support and understanding for those who are diagnosed, worried, family members of those who are diagnosed or worried about HCV.


So - hopefully when you do go to get checked up - I hope that you are HCV negative - and have no problems. But, if you do - or if you need any thoughts, or help - this forum is here for that.

Meki
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217229_tn?1192766004
Mary you can still post and ask questions...

Most of us just feel inadequate at answering them and don't want to give you false information, false hope - or worse --- bad advice when the situation is already bad.

We would love to know what you are going through... We just don't have the right answers for you.

And because we're the patients - we don't know what to tell you --- the person caring for the patient... because most of us haven't gone that far yet...

But don't let that stop you from asking questions - someone ---- somewhere here might have some answers for you.

Hugs - and much hope for brightness in your life.

Meki
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Thank you for a wealth of information . I am being tested for hcv don't ask me why my doctors are non verbal and I'm not very good with questions. I have many questions but believe I am one of those who was never diagnosed as having dislexia so it takes me a while to take thing in . Talk to you later.
cat
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I have heard others recommend this following link, not sure if it has the kind of support you are seeking, but when i put in keyword endstage and janis it did pull some things up.  good luck.  i know that this is a difficult time and you are so thoughtful and caring to want to help.

janis7hepc.com/
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I am dealing with end-stage liver disease right now... My fiancé was admitted to ER throwing up blood excessively.. She had 5 cardiac arrests and numerous respiratory failures...Was put on a respirator, morphine, an IV in the neck, a catheter and feeding tube... After surviving all that was admitted to a nursing home.. There she received lactose and pain medication... She began throwing up green bile... and was admitted to 2 more hospitals.. and back to ICU... The doctors concluded she was over medicated with pain medicine that stops your bowel movements... While there she was put back on oxygen had a tube placed through her nose to her stomach to pump out air, a catheter and back on a feeding tube, etc... She was released last night back to the nursing home... She is doing fine... You will have good days and bad days... but right now it is just a matter of living comfortably... So far no pain meds and her bowel movements are back... But end-stage liver disease diagnosed by over 3 doctors.. Gives her a life of 6 months... a transplant is a in year waiting if your lucky... and because it is alcohol related.. She must be alcohol free for six months.. I know you must be thinking " How could I let this happen!" Well she was a functional alcoholic who hid her liquor... and most of you know, that's vodka.. It hides in tea, lemonade etc and has no smell. Looking back... at all the signs... I do feel stupid..... but there's no turning back time... She did this to herself... NO rhyme or reason........She is bloated, green skin, yellow eyes, has jaundice and hepatitis...She was a beautiful tall thin natural redhead well liked and well respected ... So don't think it only happens to bums. I consider myself lucky with the last eight years I have spent with her... Tomorrow is only her 45th birthday.... I hope this helps someone... If not, it helped me writing about it.. It's hard to tell someone your future wife is dying of alcoholism.. No one offers sympathy to an alcoholic........

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People often fail to sympathize with anyone suffering from an illness that is percieved as "self-inflicted" - whether it's obesity, cancer related to smoking and/or alcohol, or alcoholism itself.  That is because unfortunately most most folks don't understand the underlying psychology that can lead to self-destructive behavior. My heart goes out to you and your fiancé.  Doing some kind of advocacy or education related to recognizing the warning signs of occult or hidden alcoholism might help you to deal with your pain and sense of helplessness and just might help save someone else's life. Thanks for writing- if I've learned nothing else on this site I have become acutely aware of the struggles and pain that so many people worldwide are facing on a daily basis.  And I am so impressed with the hope, strength, compassion and comraderie that is shared so freely among the folks posting here.
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I should have said psychology/physiologogy that can lead to self-destructive behavior...because many additive behaviors appear to have biochemical/biological cause.  
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2nd writing) There is something... I noticed the doctors do when my fiancé starts getting pain and no bowel movements..... That is; when her electrolytes get imbalanced... this causes bloating, pain and no bowel movements... I believe they check this with a blood test... and then may put her on an IV to correct this...Also if the lactulose is not working... The doctors may prescribe you give your mother-in-law an enema..  You may want to discuss this with her doctors....but that's what they did for my fiancé' .. and in end stage liver disease... I believe this happens quite often... at least with us... It has happened 3 times in 2 months..... I hope this helps to ask questions with your nurses and doctors... but what I am telling you is what she is going through and how they have dealt with your similar problem....
and to Electra56  (underlying psychology that can lead to self-destructive behavior) What I have gathered from her past to present is no rhyme or reason to be an alcoholic...(believe me I have asked every question I could for a reason) So as an educational issue... I guess it's like drugs, smoking or eating.. They can not stop, once it's progressed to this degree... but what I do know Is why full blown alcoholics do not stop drinking... because they know they will die, if they stop...
and on a different note... Her skin has turned back to it's natural color, and her eyes are clear now.
She seems stronger but last night started experiencing very bad pain in the gall bladder area.. but the doctors will not operate because with someone in end-stage liver disease .. Any operation can be fatal....... I am sharing this information so others can gain some knowledge from my experience and maybe help them detour some of these symptoms before they start... I By the way she was admitted to emergency on July 15.. So all of this I have descibed is less than 2 months but it may sound crazy but I still have hope we can beat this....That's all you can have in a situation like ours is hope! You never know..
Neil
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3rd update: Well it's December now.. and here’s some great information... We moved her out of the Nursing home... because the care was only enough to sustain life; till death... That was the best thing we could of possibly done.. A family member her sister opted to take her in her home in a different state..She took her to her own family doctor who is 78 years old and this physician recognized her symptoms.. and completely changed her diet and medications... She could drink what she wanted. She was told to take salt. He checked her thyroid and put her on thyroid meds at 3 times the dose.. Solved the bleeding problem that other doctors couldn't recognize.. He said all the blood was from a vessel in her throat that burst..( Common for drinkers).. It was now healed... She has made a remarkable recovery... Her skin is beautiful, Her beautiful red hair has new vigor, her green eyes are clear, her voice is back, her strength is improving... (Another stat.. If a healthy man/woman is made to rest flat in a bed He/She will lose 7 percent body strength a day up to a certain degree).. She is feeding herself, moving to the bathroom by herself in a wheelchair, She is able to visit restaurants (wheelchair bound). and is now moving into a walker...I believe from what I have seen that if you can give family support morally and physically and take control the patient will improve... Just be prepared for a tremendous amount of stress on yourself.... The last blood tests which are taken weekly or bi-weekly.. showed her liver enzymes are normal, all levels of hormones and vitamins are normal, her thyroid is normal etc. etc. She has made a dramatic improvement and I can't wait to parade her in front of all the doctors (4-8) who gave her 3 to 6 months to live... The walking may never come back completely because of poly neuropathy that is associated with drinking... but she  is alive and I expect may outlive me..LOL....PS She has not drank in over 5 months now .. when we go out she orders virgin frozen drinks.. and is dealing with that nicely... Good Luck to all and if you have any questions I might could help someone with... leave a message here.. and I will try to help with my limited knowledge
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thats a wonderful and truly inspirational story

may god bless u and ur fiancee!
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I know this is an old post, however I found this from a Google search, as I've got the drooling going on again, after many years.

I've had drooling off & on for MANY years. I tested + on a screening, then a RIBA test on the same sample - no typing yet, which is driving me nuts, frankly pissing me off, as with other health problems I have, going natural for the most part may be the best, if not ONLY route to treat me for HCV (assuming the test is correct, but I, & whoever is treating me, is going to need typing & the earlier the treatment the better. The doc that ran the test did a screening (he's a rheumatologist, not a hepatologist), then a RIBA was ordered (I think the health dept. in my state may have auto-ordered this, or perhaps the lab's protocol (frustrating though, as if the sample was cross contaminated & the same sample dipped for the RIBA, then we could have 2 false positives.) I just had this testing down & why the other wasn't drawn & type-tested is beyond me... the rheumatologist said he left it for my internist, then she did nothing, knowing damn well that I wasn't going to see the gastro doc for 3 weeks & said she's leaving the test to him... She's in this "healthcare system" that wastes more resources than any I've even known, makes you come in for every darn little thing, even meds you must be on for life, if you weren't seen for THAT medication, & yet was seen & talked about it a week ago, they'll make you come so they can bill for an "extended visit" to say, "Hi, why are you here today?" takes you weight & BP, regurgitate their notes from the last visit, then send you on your was & electronically send off your prescription (which is fraud BTW). Ah once they took my blood for allergy testing I absolutely did NOT need, yet the nurse wanted to run it because she was curious about the accuracy.

(Yep! 90+% of the time, the doctor was not available, but the clinic would tell you that he was via his Palm Pilot, so that made it 'legal' for a nurse (not a NP, one I believe is an LVN, the other I doubt is out of school yet), AND prescriptions are sent to the pharmacy under their names as being "doctors" (they aren't doctors & this is illegal as HE**, but leave it to the corporate conglomerates that set up clinics in rural areas, get government kick-backs so real doctors can't, and the care is substandard. My real doctors in the LA area have a hard time understanding this crap, or how the heck they get away with it, frankly so do I, but I know there's a LOT of politics involved, and the care is seriously substandard. IF I'd taken the actual doctor's advice & allowed he & his nurses to give me Toradol IM at 60mgs twice a week for years on end, I would likely have either be on dialysis or have died of kidney failure by now.

Anyhow, I was on Lactulose with Zelnorm & did FAR better on it, than Amitiza & stool softeners, which my gastro doc put me on. (Who BTW joined up with this crappy clinic system & before that I got FAR better care.) I'm not sure how he got mixed up with this clinic bunch, but he gets pissed & his care has gone to crap since.

I need to get the he** out of that system... I'd rather be of ANY

Anyhow, IF drooling was definitive alone, I would have been gone years ago, although I do wonder if, at least in part, this could have been an active, or very active spike of HCV?And with my most likely exposures being when we used to call it "non-A, Non-B hepatitis", & in the late 1960's & early 1970's.

I had an endoscopy roughly 15 years ago because of waking up in a pool of spit, and being new to the gastro world, yeah, I had severe constipation then, hadn't had a BM in about 3-4 weeks. I've always had constipation, so this wasn't anything new. After a few doctors blowing off the drooling, I was finally referred to a gastro doc that did an endoscopy that found some esophogeal scarring/burning from allegedly medication getting caught in there. Now I wonder.

Waiting to get a PCR test to see if this is in fact a real positive, and i so, what type we are looking at. Waiting & wondering who's doing what testing is frustrating! Rheumatologist  & I expected the internist to  run the PCR test & she passed the buck to the gastro doc, and no clue if he works with HCV
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i've a question, is taradol bad then, my husband has liver cirrhosis, hepatitis B, hepatitis C and the Dr told me on july 9 2014 that my husband has less then a year? his currently taking Lactulose Solution,USP 10g/15ml,lasix 20mg twice a day, lisinopril 20mg, Aldactonee 50mg twice a day, Propranolol 20mg twice a day, Omeprazole 40mg,Aspirin 81mg can you please tell me if these meds will really help my husband!  and do think the Dr actually told me the truth about my husband having less then a year :( hoping to hear from you soon! my husband has no insurance it's hard for me to get his meds but i sale whatever i don't use at home, he's gonna be 56yrs on Aug 2014!  
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Hi Bambi
Welcome to the forum

So sorry to hear about your husband.

This is a really old thread and the person you asked dream surfer only has made that one post in 2012.

So more people will see your question so you can get more answers please go to the top right of the page and select the orange "Post a Question" link. That way everyone will see your new question.

Is your doctor seeing a hepatologist at a liver transplant center? Is he eligible to get on the transplant list and has he been listed? One reason they would not allow him to be listed is if he is drinking alcohol. If he is he would have to stop drinking for 6 months before he could be considered.

On your list of meds I see aspirin as far as I know he SHOULD NOT be taking aspirin du to the blood thinning caused by aspirin and the danger for a person with cirrhosis having a bleeding episode. Has he been checked for esophageal varicies (enlarger blood vessels in his throat) by upper endoscopy? Do you know his meld score? Does he have regular blood test for bilirubin, creatinine and bleeding time (PTT or INR). Does he get abdominal ultrasounds at least every six months to check for liver cancer?

If he is not getting all this and more you need to see a different doctor ASAP and like I said a hepatologist

Please post a new question many here will try to help guide you through this and also help you know more about hot to get help with the costs.

Good luck to you and your husband
Lynn
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