Re: Barney still having problems

[Guest guest]

I do not recommend giving so much honey in a day! The yeasty bugs will have a

jolly good party leaving the mess for you to deal with. First cut out the honey,

even though you are thinking it is calories you are giving him. Also maybe his

digestive system is not ready for too much fat in one day (almond butter/

coconut butter). If the system cannot tolerate too much fat it comes out real

quick into the toilet!

Let him have chicken soup to rest his body a bit from the tiring day he has just

had, and give some apple sauce (just apples cooked in water, with some cinnamon

for flavor) so he gets some carbs. If he can tolerate the carrots in the soup he

should eat that too. Let him have smaller portions of his foods every 2-3 hours

if he gets hungry. If you think the meat is not a problem (the patties) give it

small portions at a time so the system can handle it easily wihtout being

overloaded - it will just come out otherwise.

Suneeti (Crohns, SCD 2000)

[Guest guest]

Thank-you Suneeti, VERY MUCH, We Have a Plan Now. It feels Right. I started

Chicken Soup This morning at 8:30am All he has had this morn.is yogurt But I put

Honey on it was before I emailed for help.I keep hating to bother people. Seems

like after a person been doing this one should know what to do. Healing will

take place today.

>

> I do not recommend giving so much honey in a day! The yeasty bugs will have a

jolly good party leaving the mess for you to deal with. First cut out the honey,

even though you are thinking it is calories you are giving him. Also maybe his

digestive system is not ready for too much fat in one day (almond butter/

coconut butter). If the system cannot tolerate too much fat it comes out real

quick into the toilet!

> Let him have chicken soup to rest his body a bit from the tiring day he has

just had, and give some apple sauce (just apples cooked in water, with some

cinnamon for flavor) so he gets some carbs. If he can tolerate the carrots in

the soup he should eat that too. Let him have smaller portions of his foods

every 2-3 hours if he gets hungry. If you think the meat is not a problem (the

patties) give it small portions at a time so the system can handle it easily

wihtout being overloaded - it will just come out otherwise.

> Suneeti (Crohns, SCD 2000)

>

[Guest guest]

Please don't worry about 'bothering people' - that is what we are here for - to

help and learn from each other. It took me also a long time to get the diet

right with a lot of scoldings from Elaine along the way - and I will always be

very grateful for those scoldings - like a mother hen clucking over her brood of

naughty chickens!

Hope Barney starts to feel much better soon.

Suneeti (Crohns, SCD 2000)

[Guest guest]

Barney was up ,most of night going to bathroom all night 5 time 3 this morn. ask

for imodium, didn't won't to do it but need to stop it.He ate only chicken soup

and yogurt with out honey 1 soft boil egg,half cup tuna with scd mayo.

yesterday. I am very sad this morning .

> >

> > I do not recommend giving so much honey in a day! The yeasty bugs will have

a jolly good party leaving the mess for you to deal with. First cut out the

honey, even though you are thinking it is calories you are giving him. Also

maybe his digestive system is not ready for too much fat in one day (almond

butter/ coconut butter). If the system cannot tolerate too much fat it comes out

real quick into the toilet!

> > Let him have chicken soup to rest his body a bit from the tiring day he has

just had, and give some apple sauce (just apples cooked in water, with some

cinnamon for flavor) so he gets some carbs. If he can tolerate the carrots in

the soup he should eat that too. Let him have smaller portions of his foods

every 2-3 hours if he gets hungry. If you think the meat is not a problem (the

patties) give it small portions at a time so the system can handle it easily

wihtout being overloaded - it will just come out otherwise.

> > Suneeti (Crohns, SCD 2000)

> >

>

[Guest guest]

Sounds like he may be going through the 3 month flare if he is at 10 weeks.

This is the kind of thing that happens. Plenty of rest, epsom salt baths, no

stress,

simple foods, etc.

What I am wondering is why his doctor has not prescribed any maintenance drugs

besides prednisone.

It's normal for UC patients to be on one of the sulfasalazine drugs for

maintenance.

Also, instead of prednisone, which is a systemic steroid, I wonder about

entocort,

which is a anal suppository steroid and, therefore, local.

Mara

> Barney was up ,most of night going to bathroom all night 5 time 3 this morn.

ask for imodium, didn't won't to do it but need to stop it.He ate only chicken

soup and yogurt with out honey 1 soft boil egg,half cup tuna with scd mayo.

yesterday. I am very sad this morning .

>

>

>>>

>>> I do not recommend giving so much honey in a day! The yeasty bugs will have

a jolly good party leaving the mess for you to deal with. First cut out the

honey, even though you are thinking it is calories you are giving him. Also

maybe his digestive system is not ready for too much fat in one day (almond

butter/ coconut butter). If the system cannot tolerate too much fat it comes out

real quick into the toilet!

>>> Let him have chicken soup to rest his body a bit from the tiring day he has

just had, and give some apple sauce (just apples cooked in water, with some

cinnamon for flavor) so he gets some carbs. If he can tolerate the carrots in

the soup he should eat that too. Let him have smaller portions of his foods

every 2-3 hours if he gets hungry. If you think the meat is not a problem (the

patties) give it small portions at a time so the system can handle it easily

wihtout being overloaded - it will just come out otherwise.

>>> Suneeti (Crohns, SCD 2000)

>>>

>>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Terry thank-you for responding, Barney was up and down again last night, 5 times

last night very loose stools, 3 or 4 times this morning lots of pull ups messed

up. not good, I gave him some legal gatoraid, and had him drink 1 cup of club

soda with 1/8 tsp of legal bak soda, this morning for fluid replacement. LET

ME EXPLAIN, WE HAVE NO INSURANCE, EXCEPT FOR THE COUNTY HOSPITAL. LAST VISIT

WITH THE GI DOCS WENT LIKE THIS, (jULY THIS YR) BARNEY WE DECIDED YOU ARE NOT A

CANIDATE FOR REMICAID TOO OLD 63 TO MUCH WT LOSS, WE CAN TAKE YOUR COLON OUT

THATS IT THATS YOUR CHOICE, I CAME HOME DECIDED TO TRY LOOKING ONE MORE TIME ON

COMPUTER FOUND THIS DIET. AND STARTED . WE WERE SEEING THIS LITTLE DR. AT THE

PARKLAND CLINIC LAST 3 TIMES IN HERE . THIS LAST TIME HE SAID I HAVE NO

EXPERTIZED IN UC GO GET THE COLONOSCOPY AT BIG PARKLAND AND SEE A GI DR.THERE. I

JUST ASK HIM COULD WE GO SEE DR. BRADFORD A DR. WE HAVE SEEN IN PAST AN

INTERNIST, AND HE SAID HE DON'T THINK SHE WILL SHE HIM BECAUSE HE US UNDER CARE

OF PARKLAND DR.'S. THIS MORN HE ATE 3 EGGS, AND TUNA WITH LEGAL MAYO. AND JUICE.

HE TOOK NO IMODIUM LAST NIGHT JUST TOUGHED IT OUT.

>

> Has Barney considered Lialda? It reduces the symptoms of UC and will allow him

to make gains on SCD. I, like Mara, am surprised that he is only on prednisone,

which obviously is doing nothing for him. Also, taking the Lialda will stabilize

him and can get him off the prednisone. Prednisone has a lot of side effects,

Lialda, much less. Also, Lialda's effect is by a local anti-inflammatory action

directly on the gut and does not suppress the immune system the way prednisone

does.

>

> It's time to have a serious discussion with Barney's doc, or find a better one

who can help you. SCD is excellent, but many of us on this list did, or do meds

with SCD for best results. But you need the right kind of meds.

>

> Keep us posted.

>

> Terry

>

[Guest guest]

MARA, WE STILL HAVE THE SULFASALAZINE SUPP'S. WE STOP, WAY BACK IN JUNE CAUSE

AFTER A WHILE HE WAS STILL HAVING LOTS OF LOOSE BMS AND DR SEEMS TO THINK THEY

MAY BE MAKING IT WORSE, I COULD START BACK UP AND SEE,THEY ARE JUST SITTING IN

CABINET. HE IS TAKING EPSON SALT BATHS, EVEN FOUND SOME LAVENDER EPSON SALT. HE

RESTS ALL DAY. RIGHT NOW HE JUST GOT UP AND TOOK OUT 8 YR DAUGHTER OUT SO SHE

COULD RIDE HER BIKE, HIS MENTAL STATE IS GOOD, I NEED NEW MEDS AND FEEL VERY

VERY TRAPPED CAUSE PARKLAND COUNTY HOSP. IS NOT THE BEST PLACE TO GO FOR HELP.

> >>>

> >>> I do not recommend giving so much honey in a day! The yeasty bugs will

have a jolly good party leaving the mess for you to deal with. First cut out the

honey, even though you are thinking it is calories you are giving him. Also

maybe his digestive system is not ready for too much fat in one day (almond

butter/ coconut butter). If the system cannot tolerate too much fat it comes out

real quick into the toilet!

> >>> Let him have chicken soup to rest his body a bit from the tiring day he

has just had, and give some apple sauce (just apples cooked in water, with some

cinnamon for flavor) so he gets some carbs. If he can tolerate the carrots in

the soup he should eat that too. Let him have smaller portions of his foods

every 2-3 hours if he gets hungry. If you think the meat is not a problem (the

patties) give it small portions at a time so the system can handle it easily

wihtout being overloaded - it will just come out otherwise.

> >>> Suneeti (Crohns, SCD 2000)

> >>>

> >>

> >

> >

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

Hi---I'm a little confused as to who is taking care of Barney.

If it is the GI doc at the county hospital, why can't you call this doc and say, 'When we saw you last, you said Barney's too old for Remicaid and you offered to take out his colon and put him on prednisone. I've been doing a lot of reading, and I'd like Barney to get started on Lialda, please.' If the doctor says, but this and but that, you still answer nicely and firmly, 'I'd like Barney to try this medication and see how he does before we can consider removing his colon'. Just be polite and insistent and don't take no for an answer. Tell him you would like to try a conservative treatment and the prednisone is not working. If no luck with him, call the little doctor at the Parkland clinic and tell him you want a prescription for Lialda, that the prednisone alone is not working and you went online and found that Lialda is a very good drug for UC. With all due respect, just because you don't have insurance and you are at one specific facility because of that, does not mean you can't be the squeaky wheel that gets the grease. Unfortunately, you are Barney's case manager, and you need to start pounding a fist and persevere in order to get what you want. Barney deserves to get the best medical care wherever he goes.

Now Lialda is expensive, but I have a phone number you can call to register and your prescription will be ten dollars a month. He is to take two pills a day, and for him, at night, it will help him get through the night. There are cheaper versions of this drug, mesalamine. But it requires taking up to 14 pills a day and I have read the studies that show Lialda has the potential to be more effective. You can't beat $10.00 a month for 60 pills.

Call first thing tomorrow and keep us posted.

Terry

[Guest guest]

Also, just my opinion, if I were going so much, I would not have tuna with mayo. Is it canned legal tuna? No vegetable broth in the can?

I would be doing chicken soup with boiled hamburg and coconut oil or chicken fat for calories. Roasted meats in their own fats with pureed peeled and seeded zucchini that you could roast in the same pan with the meats. Garlic is very healing for the gut, smash and boil or roast the garlic with the meats and drink the juices. The bone broths are very healing for the gut--boil the crap out of a bunch of bones with knuckles and let him drink that broth seasoned with pureed everything in it. Pureeing is an easier way to digest and takes the burden off the gut.

Good luck,

Terry

[Guest guest]

Terry, hi, I will call in the morning, the GI clinic and the smaller clinic

too. All I will be able to do is call and leave messages , Thank-you for

teaching what to say to the dr.s, I will try. We have the mesalamine

suppostories, We tried with those a couple months back didn't do any good that

we could tell. We have sulfasalazine tabs lots of refills on that again we had

tried these before. I got the supposatories out today and he used one. just

don't know. Thank-you so much for being there.

>

> Hi---I'm a little confused as to who is taking care of Barney.

>

> If it is the GI doc at the county hospital, why can't you call this doc and

say, 'When we saw you last, you said Barney's too old for Remicaid and you

offered to take out his colon and put him on prednisone. I've been doing a lot

of reading, and I'd like Barney to get started on Lialda, please.' If the doctor

says, but this and but that, you still answer nicely and firmly, 'I'd like

Barney to try this medication and see how he does before we can consider

removing his colon'. Just be polite and insistent and don't take no for an

answer. Tell him you would like to try a conservative treatment and the

prednisone is not working. If no luck with him, call the little doctor at the

Parkland clinic and tell him you want a prescription for Lialda, that the

prednisone alone is not working and you went online and found that Lialda is a

very good drug for UC. With all due respect, just because you don't have

insurance and you are at one specific facility because of that, does not mean

you can't be the squeaky wheel that gets the grease. Unfortunately, you are

Barney's case manager, and you need to start pounding a fist and persevere in

order to get what you want. Barney deserves to get the best medical care

wherever he goes.

>

> Now Lialda is expensive, but I have a phone number you can call to register

and your prescription will be ten dollars a month. He is to take two pills a

day, and for him, at night, it will help him get through the night. There are

cheaper versions of this drug, mesalamine. But it requires taking up to 14 pills

a day and I have read the studies that show Lialda has the potential to be more

effective. You can't beat $10.00 a month for 60 pills.

>

> Call first thing tomorrow and keep us posted.

>

> Terry

>

[Guest guest]

Hey, no no no only canned tuna that says, tuna and water, sprouts has good ones

, even Walmart the low sodium ones, taking care to read, ok even so , He did the

supp at around 1 or 2pm and he said it seem to help. went 2 more times but

mostly gas he said so afternoon has been good. He had " fresh " chicken soup < I

made yesterday, and today ,too, and eggs for supper.Yogurt without honey.

>

> Also, just my opinion, if I were going so much, I would not have tuna with

mayo. Is it canned legal tuna? No vegetable broth in the can?

>

> I would be doing chicken soup with boiled hamburg and coconut oil or chicken

fat for calories. Roasted meats in their own fats with pureed peeled and seeded

zucchini that you could roast in the same pan with the meats. Garlic is very

healing for the gut, smash and boil or roast the garlic with the meats and drink

the juices. The bone broths are very healing for the gut--boil the crap out of a

bunch of bones with knuckles and let him drink that broth seasoned with pureed

everything in it. Pureeing is an easier way to digest and takes the burden off

the gut.

>

> Good luck,

>

> Terry

>

[Guest guest]

I quite agree, keep Barney on very simple early foods. As just a

comment, if I were eating that tuna I'd be in the bathroom just like he

is. I can't eat even one bite of super known-fresh fish of any kind

without troubles. My doctor says I have an " unusually high

intolerance for bacterial contamination " . I'll believe him; I

sure can't handle fish of any kind! Chicken is the bland one for

me; turkey would be OK but usually has sugar basting solution and

sometimes chemicals.

Of course I'm sorry to hear that you are limited just to the one clinic,

but OK, you have a regular doctor and a gastro guy if I understand

right. If neither one of them will at least prescribe the Lialda, I

would recommend seeing some other doctor at your clinic. There must be

someone else. Sometimes you can get more sympathy and cooperation and

helping from a family physician or internist, if the GI and the other doc

aren't really being helpful. But start with what you've got. As my

DH says, " become their most important problem " . Keep

whacking away at them until someone decides it's reasonable to let Barney

try a few other things before they whisk him into surgery for the

works.

Also, just my opinion, if I were going so much, I would not have tuna

with mayo. Is it canned legal tuna? No vegetable broth in the can?

I would be doing chicken soup with boiled hamburg and coconut oil or

chicken fat for calories. Roasted meats in their own fats with pureed

peeled and seeded zucchini that you could roast in the same pan with the

meats. Garlic is very healing for the gut, smash and boil or roast the

garlic with the meats and drink the juices. The bone broths are very

healing for the gut--boil the crap out of a bunch of bones with knuckles

and let him drink that broth seasoned with pureed everything in it.

Pureeing is an easier way to digest and takes the burden off the gut.

[Guest guest]

I don't know about garlic when you're having D, that would kill me.

but i do think you're going about this in the wrong way.

I cannot stress enough that your husband barney should be the one directing this

thing, only he can discern which foods are causing trouble. most of the foods he

is eating are very advanced... eggs, tuna? forget about that stuff for now...He

should be eating FRESH foods! ripe banana, DCCC,yogurt, blueberries, are my

favorite breakfast, try something like that. for lunch/dinner I usually have

sliced tomatoes, canned olives, sliced cheese with burgers, or baked chicken.

I keep it very simple, Elaine always recommended not to combine too many

therapies and stay " PURE SCD " so you can determine what exactly any one food is

doing to you.

he should probably just stop eating for a day, just to give his gut a rest, and

then start with just ripe banana and see if he can handle that, maybe add in

some DCCC, then maybe eventually a little yogurt or maybe even honey

this diet will work for him, but probably not by you on the internet, but by him

taking control of his life/disease, and figuring out for himself what he can and

can't tolerate and go from there

best,

steve

>

> Also, just my opinion, if I were going so much, I would not have tuna with

mayo. Is it canned legal tuna? No vegetable broth in the can?

>

> I would be doing chicken soup with boiled hamburg and coconut oil or chicken

fat for calories. Roasted meats in their own fats with pureed peeled and seeded

zucchini that you could roast in the same pan with the meats. Garlic is very

healing for the gut, smash and boil or roast the garlic with the meats and drink

the juices. The bone broths are very healing for the gut--boil the crap out of a

bunch of bones with knuckles and let him drink that broth seasoned with pureed

everything in it. Pureeing is an easier way to digest and takes the burden off

the gut.

>

> Good luck,

>

> Terry

>

[Guest guest]

Steve,

I definitely agree with you about the fact that Elaine always recommended

not to combine too many therapies and stay " PURE SCD " so you

can determine what exactly any one food is doing to you.

Barney may not have the computer skills to get on here to get the advice

-- and besides, it is his wife who is doing the cooking. So she needs to

know what to prepare and how to prepare it. It's spectacular that she's

on here, trying her best to help her husband, especially with the

confusion of doctors all too eager to do surgery and to discount what a

good diet can do.

What's advanced for you may not be advanced for some one else. I ate eggs

-- soft boiled, with butter -- on my intro. Sliced tomatoes and canned

olives on a daily basis would turn me inside out.

However, I do agree about adding foods gradually.

There has also been some excellent advice about using a medication to get

over the hump. Elaine never once said that medication should not be

used.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

It took me months to tolerate raw. At Barney's stage, cooked, peeled, seeded and

pureed fruits and vegetables are easier on a sore gut. Barney has been on here,

but his wife is the cook. I would have thanked G-d everyday for someone to help

like this when I started SCD, but " family cook " is my job too. I tolerated eggs

and lots of yogurt at the beginning, but others don't. It is a bit of trial and

error to advance on SCD. I have not even tried olives or raw tomato yet.

Raw fruits and veggies are healthy, but harder to digest. I used a Vitamix to

introduce raw when I felt better. I also agree with using medication to help

reduce inflammation, and I still take the maintenance dose of sulfasalazine.

PJ

>

>

> Steve,

>

> I definitely agree with you about the fact that

> Elaine always recommended not to combine too many

> therapies and stay " PURE SCD " so you can

> determine what exactly any one food is doing to you.

>

> Barney may not have the computer skills to get on

> here to get the advice -- and besides, it is his

> wife who is doing the cooking. So she needs to

> know what to prepare and how to prepare it. It's

> spectacular that she's on here, trying her best

> to help her husband, especially with the

> confusion of doctors all too eager to do surgery

> and to discount what a good diet can do.

>

> What's advanced for you may not be advanced for

> some one else. I ate eggs -- soft boiled, with

> butter -- on my intro. Sliced tomatoes and canned

> olives on a daily basis would turn me inside out.

>

> However, I do agree about adding foods gradually.

>

> There has also been some excellent advice about

> using a medication to get over the hump. Elaine

> never once said that medication should not be used.

>

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

> Babette the Foundling Beagle

>

[Guest guest]

This is Barney,.I am very offended speaking to my wife like this. I can not see

well, my wife is my rock. That is your opinion everybodys got one. I have given

my wife instruction not to visit this site anymore.

> >

> > Also, just my opinion, if I were going so much, I would not have tuna with

mayo. Is it canned legal tuna? No vegetable broth in the can?

> >

> > I would be doing chicken soup with boiled hamburg and coconut oil or chicken

fat for calories. Roasted meats in their own fats with pureed peeled and seeded

zucchini that you could roast in the same pan with the meats. Garlic is very

healing for the gut, smash and boil or roast the garlic with the meats and drink

the juices. The bone broths are very healing for the gut--boil the crap out of a

bunch of bones with knuckles and let him drink that broth seasoned with pureed

everything in it. Pureeing is an easier way to digest and takes the burden off

the gut.

> >

> > Good luck,

> >

> > Terry

> >

>

[Guest guest]

Yes Barney- no need to give up on this group! Everyone has different opinions

and sometimes people may type their thoughts and they may come across as

abrasive, but it's just how they write. The important thing is that people care

enough to give you advice- it's your decision whether you want to take it or

leave it

Hang in there- I hope you feel better soon! I've demoted myself to chicken soup

and burger patties every day so I know how you feel... it's so bland!!!!

-Joanna

SCD 9/2009, Crohn's 1992, 20mg Prednisone

>

> Barney, please don't stop your wife from getting advice and support from good

people here on account of one offense. It was the support from this board that

saved me from being alone with GI issues. The rest of the people in my life,

even my husband, cared, but nobody but the people on this board truly knew how I

felt. SCD is a great diet, and the advice here in invaluable, but so is the

support. It is very difficult to feel bad, and also hard to take care of and

worry about someone who feels bad. You and she don't have to be alone with this.

>

> PJ

[Guest guest]

At 07:04 AM 10/4/2010, you wrote:

This is Barney,.I am very

offended speaking to my wife like this. I can not see well, my wife is my

rock. That is your opinion everybodys got one. I have given my wife

instruction not to visit this site anymore.

Barney,

Please understand that just because one person is, in your opinion, rude,

doesn't mean we all are.

I think your wife is an amazing woman who is working very hard for the

man she loves.

I use a breathing machine, called a CPAP. On the Forum where I go for

information about that, there is a wonderful lady who was deeply worried

about her husband's therapy, because she did not feel it was going well,

that he wasn't sleeping properly. She knew nothing about the therapy, but

she dug in and learned, and now her husband is doing very well.

By the way, there's a lady I know of who is implementing SCD for her

children who is herself blind. How she manages the cooking and

participating on the Forums with her voice-reader, I don't know. But her

faith and perseverance is wonderful.

I hope that the rest of the BTVC-SCD folks can help both of you. You are

welcome here.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

I would suggest mainly (and i know this isn't easy) trying to find a

few core foods that either don't cause Barney problems or at least

minimmize them. For example, when I have D and nausea and it's a

really bad day, my core foods are very simple: broth (if I have

some, if I don't I won't feel like making any that day!), chicken

breast, ripe bananas, legal applesauce, and shredded carrots.

And I will postpone eating to noon if I can, to help the nausea calm

down. I do have to have some banana with an essential pill that they

say will eat holes in my stomach if I don't take it with food;

otherwise, I'd wait til even later in the day to eat. I'll have the

banana and applesauce and broth, then later in the day things will

usually be calmer and I can have some chicken and carrot, too.

But this is just me. Others have entirely different basic foods that

they can handle on a bad day.