[Guest guest]

Hi Harry,

Welcome! Sorry your illness brought you here but you have found a great place

& wonderful people with lots of knowledge to help you learn about this illness.

Take Care,

Chris

Cyclura S wrote:

Dear Group,

I am a 53 year old male with recently diagnosed Stills Disease. I just finished

2 hospitalizations and the diagnosis was made the second time

around. The first hospitalization included 8 days in the ICU with

meningo-encephalitis of unknown origin.

I am currently on a tapering steroid dose and most of my symptoms have

disappeared except for those related to anemia.

I hope to return to work in December on a gradual basis.

I look forward to sharing my experiences, feelings, and any pertinent medical

information with all.

Sincerely,

Harry S.. Cyclura@...

__________________________________________________________

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[Guest guest]

Dear Kerilyn,

this book sounds very interesting and I would like to read a bit more about

this.

Could you let me know what the book is called and who the author is?

Thanks.

(UK)

Re: Kerilyn and everyone (SHARON)

Keri,

I cannot lose weight either. I have literally mystified doctors -

even those who say, if you eat less than 1200 calories you WILL lose

weight. Well, i did an 800 calorie diet just to prove that i cannot

lose weight. Eat 800 or 3800, makes no difference to my body. I

have these weird spurts where i gain like 30lbs in a month and then

nothing for a long time, then a spurt again. It's scary.

Since I am feeling healthier and like the meds are working to do

some good for me, I am going to try to see if I can lose weight by

dieting again. I haven't tried in a couple of years becasue it's

darn disheartening to try so hard and lose nothing. I'm like you

though, I already don't eat much and it's usually good. I don't

snack, never have, don't like sweets, never have, etc. Everyone is

always suprised at how little I eat.

But I am trying south beach and trying to walk at least 5-10 minutes

a nigth with my dog. I even went out and bought a scale - the first

one I've owned ever. I figure it can't hurt and at least I tried

again. But I do think for people like us, we have to go into it

with a really good attitude and low expectations.

I'll let you know how it goes - and you too.

Houston

[Guest guest]

Dear , I am truly sorry to hear about your grandmother, and you know that

she will be in good thoughts and prayers here. Grandparents are just special

people. I really hope that she will be okay . It is so good to " hear "

you too. I have been a " missing member " for a very long time now. Too long.

I was very sad to hear about your truck too. I cannot believe that. WOW. Has

anything turned up yet. I hope that you hear something on that very soon.

Sincerely, Sue #2

lizdaly101@... wrote:

good to hear from you. I am hoping your Granma pulls thru...Lets us know.

Hugs Liz

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[Guest guest]

Note: forwarded message attached.

Sincerely,

[Guest guest]

Jo,

Thanks for your suggestions. Ok I don't have the cramping. So it must be

soft stools.

Frequent stools!!! I can't touch milk .I couldn't before the DS. Its just as

bad now. Bad bloating,

gas,nausea,stomach pains, very smelly poops in the morning. I swithched to Soy

Milk and its been much better!

I stay away from artifical sweeteners. I don't care for them. Its gross but I

have a mayo addition.

I have never taken iron. Mainly because I don't get periods anymore. It is in

my multi vitamin though.

I have never taken extra iron..

Consipation I got that once about 6 months out for a very short time. And then

after my surgery (tummy

tuck and hernia repair) I was told that was normal.

As you have mentioned. We do have a new normal and I am still learning how to

manage !! Being so far

away from Delano now. I feel out of the loop. Sometimes I feel alittle

embarrassed to be so far post op

and still have so many questions!! I am going to start going to meetings in

Orlando FL. I can't wait for that.

I will bug the crap out of them!!! LOL!!

thank you again for helping me out. I will try your suggestions. And yeah its

nice to know I'm not a DS freak!! LOL..

Take Care,

Jo wrote:

> why does everything give me diarreah? I dont care what I eat. I am

41/2 years out

> and still go alot through out the day. I may have had 5 solid BMs

in my post DS

=================================

What your experiencing is still in the realm of NORMAL for " some "

post-DSers. In fact it is very much in the realm of MY normal. (6

plus years post-op). I don't consider myself to have Diarrhea.

Multiple, soft stools YES...but not urgent, watery, cramping kind of

stools that I associate with diarrhea. Too be fair, Before DS, I've

always had multiple stools throughout the day..I used to have

frequent CRAMPING, nauseating diarrhea too. The Diarrhea part is

pretty much gone, just the annoyance of " going " often remains...so

in " my " book things are actually better.

Hopefully knowing that your not a DS freak helps. We are

all " plumbed " pretty much the same but our bodies chooses to react a

tad differently for each of us.

Some have major constipation problems...I NEVER, EVER get

constipated. But Lets talk about what Could possibly help.

**Decrease the amount of fats you eat. (some of those fats may be a

bit hidden..like in nuts, avocados, Cheetos, full fat cheeses, mayo.

salad dressings, lunch meats...)

**Decrease the amount of Milk products you eat (you may be lactose or

slightly lactose intolerant)

**Increase your fiber...Marta's Ezekiel type bread really does work.

**Increase your calcium intake...take 1000 mg three times a

day...more than your body will absorb, but the extra can help to firm

up your stools and make them less frequent.

**Take or increase your Iron...this will often constipate folks...It

don't me, but it may help you (watch your blood work, because it is

possible to overdose on iron.) Separate the time you take iron from

everything except vit. C or something acidic, like Tomatoes, a small

glass of juice...but especially don't take your Iron and Calcium

together. Allow at least 2 hours between iron and calcium.

**Decrease artificial sweeteners...they can increase gas and that

same gas can Push stool through your system faster.

If you give any of the above suggestions a try...give it at least a

couple weeks to see if it helps...Let us know how it works out.

One last suggestion...Dee has more knowledge and advice than anyone

on this list will EVER have. Give her a call...but...YOU GOTTA

ACTUALLY Follow through with the suggestions, cuz just hearing about

it doesn't do a whole lot to help! lol (me being a wiseguy)

Plus...sometimes we just have to realize...we have a new NORMAL...we

just need to learn to MANAGE that new normal to the best of our

ability.

With every flush of the toilet I say...goodbye unused calories!

Hugs

Jo

Hugs

Jo

---------------------------------

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[Guest guest]

Hi Liz,

I'm sorry you've had liver problems! As far as I can recall, (it's been

a while!), the flu I had prior to my hepatitis was the aches and fever

kind. My stomach was horribly involved once I got hepatitis. It's now

been 17 years since I had hepatitis and my liver function has been

normal.

------------------------------------------------------------------------

------

[Guest guest]

,

Thank you for your support, everyone on this board has been so

wonderful and I no longer feel as though I'm alone, going through all

this emotional stuff.

I'm sorry to hear about your cat isn't well. What did the Vet say?

Can anything be done such as dialisys (sorry about the spelling), or

medication? I could ask my sister if you'd like, what she would do.

I must warn you, however, she's a holistic Vet. Seems to be the way

to go in San Fransisco.

I have to go take Rubin, my son, to camp. Sorry to cut this short.

Thank you again for all your support and love.

Take care and be well.

Elle

[Guest guest]

Pat,

What kicks my butt is chocolate, especially the

hershey's milk chocolate bars because of the milk. I

am lactose intolerant now so I do not eat chocolate

anymore. When I was driving back home from vacation

(actually from bakersfield, back to sacramento), I had

a chickostick. Boy was that good, lol.

--- patricia {pat} wrote:

> Sounds like you are on it...Seems like that

> the iron is what all of us have a problem,

> of course probley everyone of us have thought

> it won't happen to me...I know I had to have

> 2 of the iron along with 5 units of blood when

> I had my problem in 03...My problem is getting

> my 4000 units of calcium in every day..I have

> gotten to where I have some pills on my nite

> stand and when I get up to the bathroom I will

> take one..I get up about twice a nite after I

> finally

> I get to sleep..

> Glad your appointment went ok,and sound like those

> chocolate chip cookies kick you butt sometimes,

> Sweets are my down fall, we all have our own demons

> Take care and God bless,

> Pat

>

>

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[Guest guest]

Hello

I get emails from " " . Does anyone know about the quality

of the products he sells?

Thanks

GB

[Guest guest]

Yes, its pretty much baby food mush... and this time is about letting your stomach heal and your body recover, so maximum nutrition with lots of vegies and protein is what you need all whizzed up into something resembling baby poo.... lol!!