Diet and Protein Restriction

[mimi3535]

Good morning!  I got my husband to read all the postings from yesterday!  He kept saying "this is so cool!!", but of course when I tried to get him here on his own he refused! BUT he did ask me to ask every one about their diets.  Our doctor has placed him on a 40 gram protein diet.  He has seen the dietitian and is now feeling a bit sad and overwhelmed with all the restrictions that have been placed on his diet.  He wants to know is anyone else on a protein limited diet and if so, "What do you eat?"

As for me I really appreciated all the support offered yesterday.  It really made his day reading all the postings!!!!  I have been trying to be as supportive and loving as possible, but he has kind of shut down and hasn’t really spoken to me about how he’s feeling. I get little bits and piece here and there. That’s why I’m gonna keep coming here for him until he can feel comfortable to come alone.  

Thank you again!!!! I am so glad there is a place that we can come to find others with similar problems and experiences!

[NYgirl]

YAY I'm so glad that if he isn't wanting to post YET that at least he is reading!  Just knowing that there are people who are going through the same things that you are - whew it helped me a LOT.  I felt like some oddball pariah when I was first diagnosed, like I had a dirty little secret! Now I know it happens in ALL walks of life for all different reasons. Heck even my father's friend has it LOL.

Anyway - once I started treatment I found it REALLY difficult to eat big meals of any sort.  I have to eat a lot of little meals a day because I've lost a lot of weight and at 5'7 and 117lbs I'm skeletal.

I have no dietary restrictions from my doctor except to AVOID IRON.  

Personally = since I'm rarely hungry any more I have been eating a lot of ice cream and frozen yogurt because it helps with my stomach ageda (can't take antacides) and my mouth has the bumps in it and they hurt and it makes it feel better AND it adds calories to my intake.

I hope you can get your husband to at least just post "hi".  Once you start...as you've seen - it's really easy.  We all had to get the courage up at one time or another LOL

Just make sure he knows...he is NOT alone.

Debby

[sunspot]

I had no diet restrictions at all. It's good to take the Riba with a bit of fat to help the body absorb the meds.
For me, there was a time when I needed protein and fat badly. I would get dizzy and weak and the only thing to relieve that was eating. Eggs and cheeze or a Rubin, depending on time of day, would give me ease.

Best to you and your hubby, Dana

[can-do-man]

Oh yeah that diet thing. Me and my hepo had a nice talk about that. My goodness id rather starve. We agreed id slow down some on the greesy foods. He said ok if i agreed to take all my meds. Plus while your on this riba you need some fat makes the riba work better. So we agreed eating was important so he lets me eat whatever i can while on this stuff. Hope your husband decides to show up here. Us geno 1 with stage 4 need to stick together. Good luck to ya both.

[NYgirl]

Ask the DOCTOR if there are any restrictions - while a dietician is a nice idea they are going to be WAY harder on you I am sure than a regular doctor - I don't even mean cause of the disease but in GENERAL right?

Greasy foods do cause stomach aches now where they didn't before and we DO eat more fat because it DOES enable the Ribavirin to work better but none of us have given up something we feel like we have to have really - as long as food is healthy and it's not a beer and a piece of pizza (ok ok I had pizza last night for dinner it's good for you!) he should be fine.

Good Gosh - if you want a bowl of ice cream have it ;-)  that's my personal advice!  :)

[Mister beagle bailey]

good morning,

I had no diet restrictions because of the weight lose.  I was 176lb. and now down to 152.  I find most Drs. would like you to eat healthy but are more concerned about weight lose and like me they told me to eat what ever to help me gain weight.

    Beagle

[can-do-man]

I had to calm down a client yesterday afternoon over a screw up that was made over the weekend. So i personally took her a 5 gallon tub of ice cream on the house. So all the way there i'm laughing thinking of you. I get there joke around with her and told her i'd make sure the guy got it right next time. Anyway i ask her where she was raised. She tells me New York. I just lost it. She knows im crazy but ask me whats so funny about that. I just told her it reminded me of some crazy nygirl and loving her ice cream. So now that my new name for her.

OMG two of you.

[NYgirl]

LOL that is too funny!  But you know I am sitting here wondering really impatiently what KIND did you bring her? ACK my whole world has turned upside down - when did ice cream become the thing that people think of me for?  Gosh years ago it was for being the party queen hahahahaha :)

Good for you you know - women LOVE to be treated special like that...it just goes to show that even though you joke around a lot...you have your finger on the pulse ;-)

I bet she LOVES you.

[beamishboy]

Hello,best to y'all going forward..i also eat what i want and do get cravings for sweets& junk...but we are trying to 'get healthy' and we need 'good' food...so i eat bananas, pears,bananas,yogurt,granola,apples,mangos,lots& lots of veggies,onions,GARLIC,rice,sweet potatoes,salads,grilled cheese sandwichs,mixednuts and yes ice cream!!!! i also bought a juicer & make myself a fresh carrot juice everyday.....doesn't leave alot of room for meat,but i still eat a bit.....Drink lots of water,per Doctors orders,and treat yourself well.......as far as posting here goes,heck i just read for days on end,don't sweat it- At All !!.....GOODLUCK

[Mister beagle bailey]

Can- do your right know one knows ice cream like NY girl. LOL
It must be a NY thing, I'm also a ice cream lover, and have to have it every night.

       Beagle

[dyce]

Good morning you love birds, tell your husband thanks for reading our post amd tell him we don't bite, we're on his side, fightin a big ,mean old mean dragon. My doc said to eat some fat with my riba for better absorbtion . As far as protien I probably consume 70 grams a day but I'm lucky enough to have 0 liver damage. I've always been diet conscience ,so eating certain foods is no problem for me. From what I've read it's harder for the liver to process protien when it has damage

I eat alot of fruits and green veggies, lots of fiber enriched food, yogurt and plenty of water. Tell your hubby he'll be fine and all this dieting and all will payoff down the road.

Dyce

[can-do-man]

butter pecan of all things. YUCK

I could have had the routeman take it but the clients need to know that we do care about there business. Thats one big problem anymore with business. Having good old fashion customer relations goes along ways.

[can-do-man]

Must be, One of our male clients owns a ice-cream shop, maybe i'll start calling him beagle. He won't question it, he knows me to well.

My eight ball tells me your hgb will be 9.8, hasn't failed me yet. Good luck

[can-do-man]

Tell him its not all serious stuff here, we do have alot of fun. But i do my best to keep them in line though.

[Mister beagle bailey]

Man I hope your right with my HGB, It's h**l if it drops any lower.

We all know you well and Thank God your here with us we need your humor, let me know how he takes to being called Beagle.

     Beagle

[sailinlady]

Diet, what diet?  If anything my eating habits have become so bizzare I am scared what will happen when tx is over.

I am with my buddy Deb on the ice cream.  I even have it for breakfast sometimes.  Cookies are great, anything sweet seems to help my tummy.  I try to have an Ensure once a day to give the old bod some kind of vitamins & nutrients.

Large meals don't work any more.  Spices don't taste right anymore.  Cheese, nuts & pickels are great.  Any kind of meat doesn't taste good right now so I try to get protien from dairy.

LOVE THAT ICE CREAM.

[dancegirl54]

The length of time I have probably had this and the relatively good shape my liver is in may have something to do with being in pretty good shape and being careful about my diet, but then again it could have nothing to do with it. Surely though, being sober for 20+ years has a lot to do with it.
I ate a vegetarian diet, then vegan for a long time for health reasons - it really did help with fatigue and aches and pains. Now I eat close to a vegetarian diet but am not as rigid about it. I was in france for a while for work and felt wonderful - because what I was eating was so fresh and natural??? Maybe. I dont eat a lot of protein - I dont measure, but whole grains and veggies make up most of my plate.  There are tons of resources and great recipes out there. I would start gradually - just start reducing portion size a day at a time and add in the good stuff - use olive oil, tomatoes, blueberries, colorful veggies, brown rice, kashi, whole grains are great and crunch, fresh and organic. Fresh fish, free range chicken, etc.

[Dale_Ray]

My doctor told me not to worry about what I ate only that I needed plenty of protein and no limit. His suggestion that I eat 5 smaller meals a day has helped with indigestion. Before treatment I liked chicken - now I don't. Sometimes I just eat a big hamburger steak and mashed potatos. I'm on week 15 of 48 so my taste buds have come back and I like anything other than spicy. So far it is like riding a roller coaster but If your husband is on Peg / Cop / Nupo it seems like your doctor would just be concerned about keeping food in him and maintaining weight until he completes. I don't know you exact circumstances but the other thing that is important and until the folks in this forum convinced me of the importance of water I had all kinds of problems now the best medicine is drink plenty of water. I hope he gets to feeling better and don't let him withdraw from you I think that is a tendancy caused by the treatment. Good luck to the both of you.

[mimi3535]

OMG....My hubby will eat a gallon tub of ice cream in a few days if I let him!!!!  I am sure hubby will be excited to read all you’re posting today!  We are making progress, he actually asked me to go on and post for him today...I think I'm an enabler.....I will go on today and create him his own log in name....We are making progress because he has already picked out his online name...airborne...he is retired Army and spent 20 years in the 82nd airborne division.

As far as his diet goes, the doctor was the one that put him on a 40 gram protein diet. His ammonia level has started to increase and he was getting a bit confused and forgetful.  BUT HE NEVER TOLD US ABOUT THE FAT AND RIBO!!! This MD must have gotten his license from a Cracker Jack box! I've been adding fat to his diet because of the decrease in food consumption, and had no idea he should be doing this because of the medication!  We have an appointment today with Cracker Jack, MD. I better keep my cool.....breathe.....I've made an appointment with another MD because I haven't been happy with the care he has been receiving.  This will be MD number 3.....The first GI MD told my poor hubby that he had 5 years to live..... Can you believe that?  That’s when I went "NEXT" and found doctor number 2.....Cracker Jack......LOL.....This state has such poor health care it’s not even funny.... I am thinking of having him fly down to California for treatment if MD #3 is a flop.

[sailinlady]

Forgot to say good luck to both you & hubby.

Is this Dr. a GI or hepatologist? (if you already said so, sorry I missed it). One thing you have to be sure of is your doctor.  Ask lots of questions and keep changing until you are satisfied with the care.

[can-do-man]

you said....The first GI MD told my poor hubby that he had 5 years to live..... Can you believe that?.
_______________________________________________________________

Sadly yes i can, Should have ask him how much he wanted to bet on that. is there any teaching hospitals close to where you live? Where you can find a GI that is mainly a hepatolgist?

Glad he's thinking of coming around here.

[Bill1954]

Hi Kathy,

You caught the protien/cirrosis connection, our posts must have crossed. How the heck have you been geting along lately--where are you in tratment now? Hope all is well,

Bill

[friole]

Hi Bill - glad to see you posting today.  I can hardly believe it but I am on week 34 now.  It is going fairly smoothly as long as I conserve energy for what I have to do and just don't do the rest!  How are you?  are you into "overtime" ?  How are your joints/hands doing?  Did that ever level out?  I know posting here was hard for you to do for awhile.
Kathy

[friole]

I am doing great today.  Got all my teeth in and my glasses work most of the time...... lol.....

You know Jim used that Holiday Express joke once, and I didn't get it then, and I don't get it now.  Call me thick.  BTW -- too bad you're not in Texas -- I just love Butter Pecan.
Kathy

[azgrl]

I like the eight ball because if you ask a question and you don't get the answer you want you can always throw it....you know there is an online version if you ever find yourself in a situation and you've forgotten your ball.....

Pie....Pie...Pie....of course...it was cherry pie!!

deb in az

[Forseegood]

Hi, I've never been given any diet restrictions other than not to take iron supplementation and to stay away from eating a lot of iron rich foods constantly, like I wouldn't eat loads of spinach every day, but of course, I wouldn't do that anyway, ha ha!

I didn't read your prior post but I'm thinking that your hubby has more advanced liver damage than me...that's usually when people are put on diet restrictions...

I just think that the fact that we all have an impaired liver, to varying degrees...that we should all eat a very good diet with as many veggies and fruits, etc. that we can...but of course that makes me the unpopular kid at the dance and no one will dance with me...boo hoo! ha ha! Hope your hubby is doing better and good luck to you both!

[friole]

greetings- glad to see you both here today.  You have got to realize none of us are doctors, and we have all varying degrees of liver damage. Many of us don't need any kind of food restrictions. Your doctor probably put you on limited protein due to the advanced stage of damage. Perhaps you could discuss that with him today. Ask the benefit of the limited protein vs staying on treatment.  Perhaps he would let up a bit.  I think we are all in agreement, that getting through treatment is the most important thing at this point.  That means whatever it takes for food intake.

The Ribavirin is said to be absorbed as much as 80% more when taken with a high fat meal.  So, that's not a blanket authorization to just eat fat food, but I think most of us figure the more of that nasty stuff we absorb, the more virons we are slaughtering.
frijole

[can-do-man]

No were not doctors but i have watch er and i did stay at a holiday express once. Should count for summin. Hows your day going? Good me hopes

[azgrl]

WHAT?!  I thought I was the only one who still consulted the magic eight ball?!  I have one in my office and one at home....althought the kid keeps taking it even though he can't read yet.....You know you're having a good day when the eight ball is giving all the correct advice and you have jelly bellies.....

And another thing....um butter pecan is only the best ice cream evah!!!!

deb in az

[NYgirl]

Hello to you airborne!  We've been ejoying your wifes company - she is a very lovely woman you are such a LUCKY man to have her during this time.  I sure wish my exhusband wasn't such a dumb mooch and I had somebody to show me with not only their words but also their actions how much they loved me.  :)

You got stuck with a raw deal this disease is junk - but at least you know in addition to your wife you are not alone. We are here and will support you as best as we can with our whole hearts.  For some of us...this is IT this is THE support.  It's become a way of life.

I remember the first time I posted I was like oh they are never going to talk to ME and all of a sudden there were all of these people becoming friends and answering my DUMBO questions (I can be a bit insane sometimes...but I was BEFORE I knew I had this disease).

There are people in here with better livers and worse liver shape than you.  But they are NOT alone and can come in and ask ANYTHING at ALL (from questions about Mr. Johnson falling and not getting up to...can I eat too much ice cream ;-)

People here are honest and open adults who just want to HELP the next guy make it through treatment. We ALL hate this disease and want it GONE. There is power in numbers after all right?

You wouldn't have been in the 82nd Airbone = the toughtest of the tough (I only know because my brother was a marine and always talked about them like GOD) but you guys wouldn't want to go in to BATTLE on your own would you?

Same thing here - just another war.  :)

[FlGuy]

As tx goes on Bragg's appetite will dictate what he eats. You can probably count on him dropping 10 - 20 pounds though. I went to a dietician too since I had some blood sugar complications with HCV.  Most of it went out the window when I realized I'd eat what I could.  Did try to stay away from the bad stuff when possible. Remind Bragg of a few words he's already familiar with : 'I will never accept defeat' and I will never quit'. Hang in there!

[Bill1954]

While the comments from other posters here are quite supportive, none of them seem to address the fact that your husband is a cirrhotic. Protein management can definitely be a concern for the cirrhotic patient, although management techniques seem to vary. Cirrhotic patients may have a difficult time processing proteins, which tend to increase ammonia levels, and can lead to encephalopathy. Some docs reduce dietary protein intake, while others tend to chemically manage with meds such as Lactulose. Although I’m not a cirrhotic patient myself, I have personal contact with several transplant survivors, and I’m merely passing along info I’ve gathered from them. I guess the take home message here is make sure that you discuss things with your doctor before you start stuffing “Airborne” with rib-eye steaks, LOL! Hopefully Mikesimon or others more knowledgeable will stop in with additional info. If you want to research a little on your own, this might be a good place to start--

http://janis7hepc.com/articles1.htm#no

Best of luck to you both,

Bill

[can-do-man]

Don't you just love shaking that magic 8 ball and watching it float around. Entertains me for hours. You been ok? Ever figure out what pie made your hubby happy?

[GoofyDad]

All - airborne's protein restrictions are probably due to his cirrhosis.

Mimi - I think they make a distinction between animal protein and veggie. You may want to check on that. Soy ice cream anyone?

Also, my hepo team does not specify to take riba with fat. They don't discourage it, and the nurse acknowledges it helps absorbtion, but it's not part of their standard patient instructions. These folks know their business. I don't know why they don't include that in their orders, but I think it would be wrong to conclude it's a matter ignorance on their part.

[GoofyDad]

Wood Eye!

[NYgirl]

My daughter was put on a very restrictive diet for her health when she was small (she has chronic obstruction pulmonary disease...or HAD should I say pretty much thank GOD she almost died twice) and the one thing she did enjoy was the rice product ice creams I think.  It was the saddest thing to watch a little kid not be able to have chips or cookies or cake I am so GLAD that is over.

The health food store had lots of good things she could substitute in her diet.

I think that Rocker said that high ammonia can also be from dairy breaking down in our systems.

As Bill said above - maybe the doctor can help manage it with the medication instead of hard core diet restrictions?  It would definitely be worth asking that's for SURE.

[jojogirl]

to late to post qustion, but when you start meds do you get sick alot and is it true your hair falls out. ???????????

[Bill1954]

Way to go, Kathy-

That last quarter will blur by! It’s amazing how fast time goes _if_ we have the benefit of hindsight. I remember thinking 48 weeks was an almost surreal time frame until just recently. Here’s hoping that your remaining treatment days are peaceful.

It’s actually been my noggin rather than joint problems that have prevented me from posting these last six months or so. A couple of months into treatment and I began to have difficulty with recreational reading; shortly after, my concentration went to h_ll to the point that typing just wasn’t in the cards any longer.

Yeah, just finishing up overtime here, Friday I’ll do injection 56/56 (the 14 caret syringe, I hope), and my doctor said to discontinue the riba then as well. I’ve remained at 1800mg/day riba since 5/05, so if this doesn’t take, it hasn’t been without some effort. I’ll try to keep you informed of post-treatment progress.

Meanwhile, take real good care of yourself, and hang tight, the end is in sight!

Bill

[Forseegood]

Just wanted to say, I think you can get used to anything...my dad was always a really healthy eater, so he didn't allow us to eat a lot of garbage...no twinkies, etc...and now, I kind of thank him for it cause I really never deveoped a taste for those types of things...

You develop "palettes" especially when you are young, a salt palette and a sweet palette....the saltier you have your food, the more salt you will crave...same with sweets...

If you intentionally lesson the sweetness or saltiness of your food, your cravings for saltiness and sweetness will lesson (for most people)...

I never salt my food, or very little, so now if I go to most restaurants - the food tastes really salty for me...it's the same with sweets, rarely have them...so most sweets taste really sweet to me...

Once I took this 16 year old into my care...she used to b*tch all the time that she had to eat "health food" cause I don't buy a lot of junk food, some but not much...and that was what she was used to...

And now, when she goes to her relatives and has to eat their food...she now whines that she has to eat a lot of junk there and she wants the type of food I prepare, cause she's used to it...and she also likes staying at a good weight now which wasn't happening before...now her relatives are complaining to me that she won't eat their food and they have to buy "health food" for her, guess they mean veggies and fruits...

I think the treatment must do something to the different palettes and taste buds, that's why people can't eat the same things they were used to...in that case, guess it's important to eat anything you can get into your mouth...(goof, you behave yourself)

[Bill1954]

Your question really deserves a new post. You’ll find as many opinions here as the hairs on your head that you’re concerned with losing, LOL. We all respond to treatment individually, a few get violently ill, some breeze through with very few problems, and most of us fall somewhere in between. I really wish there was a stock answer for this, but it’s simply the truth. If it helps any, most of us find this doable, but rather unpleasant. You might try a new post between 9:00 and Noon Eastern, which should be your best shot.

Best of luck,

Bill

[beamishboy]

Wow, 1800 riba.you are an Ironman!!......i rem dscussing reading difficutys,which has gotten bettr for me:travel/adventure books are working!!!! i can lay on the couch & dream ...On that dosage i can only imagine that your appetite is sh!t !!! If yu don't mind posting??? Tell us about your:facts,stats,situation and a good ol rant 'bout sx's.....if ya don't mind indulging me-GOODLUCK DRAGON SLAYER