questions

August 11, 2001

In a message dated 8/11/01 6:24:36 PM Pacific Daylight Time,

ramius@... writes:

<<

It has been a while since I posted & I am still new to the group.

This is all so new to me that I did not know enough to know what I

don't know. I am becoming frustrated enough with drs. to know I need

help so I can fight for myself.

>>

Hi Kim, I think that is your name ..... am I right? LOL Gosh there are so

many new members lately I hope it is...

I too would look for a new dr.. I know this isn't an easy task. Also if

there aren't alot of rheumy's in your area (like mine) maybe and ENT would be

able to help... An ENT was the dr that diagnosed me...

I agree with , with each flare damage can be done... Please don't give

up.. This is a crazy disease and I think once you find the right dr and get

treated you will see that it is also a not so scarey disease.

Please keep posting and asking all the questions you want... You will find

alot of information to take with you to the dr...

Glad to see you post now... looking forward to getting to know you better.

hugs

August 11, 2001

Hi,

I'm not sure who you are because I haven't posted much lately, but I would be looking for another rheumy and try to find one specializing in connective tissue disease. I found on in Vancouver BC and he was awesome. Besides I've never had a biopsy and neither of the rhuemies I have seen ever saw me flare, only my PCP. The website below has great info on rhuemies maybe you can find one in your area.

http://www.rheumatology.org/directory/geo.html

Good Luck and keep your spirits up, you just need a good doctor that's all.

Best wishes

Elaine

questions

Hello all..It has been a while since I posted & I am still new to the group. This is all so new to me that I did not know enough to know what I don't know. I am becoming frustrated enough with drs. to know I need help so I can fight for myself.The rheumy I am seeing says there is no way to positively diagnose RP without a biopsy. He seems skeptical that I have RP but he has not seen my ears when they are really inflamed. He said I should do nothing until I flare and they will then do the biopsy. This makes sense but...when is red, red enough??My ears get red for a short period of time almost every day. On one occasion, when they were a little more red than usual I went in. By the time I was able to contact the dr they were not "red enough". Yesterday, again both ears were red. After about an hour one of them began to throb. I called the dr. It took him 45 minutes after he got the message to call me back & by then they were returning to normal. It was then that he told me I needed to wait until the flare had lasted at least 2 days before calling him.This really bothers me. I am beginning to have times where it feels as if bugs are crawling along my ear. I think I am beginning to have nerve damage from all of the mini-flares. What does the dr really need from me? How long do you think I may have to do letting the RP damage my ears until I can get a diagnosis & start treatment?Thanks for your help. I read all your posts & will try to contribute more as I get a handle on some of this.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

August 14, 2001

> Hello all..

>

> My ears get red for a short period of time almost every day. On one

> occasion, when they were a little more red than usual I went in. By

> the time I was able to contact the dr they were not " red enough " .

> Yesterday, again both ears were red. After about an hour one of them

> began to throb. I called the dr. It took him 45 minutes after he

> got the message to call me back & by then they were returning to

> normal. It was then that he told me I needed to wait until the flare

> had lasted at least 2 days before calling him.

>

> This really bothers me. I am beginning to have times where it feels

> as if bugs are crawling along my ear. I think I am beginning to have

> nerve damage from all of the mini-flares. What does the dr really

> need from me? How long do you think I may have to do letting the RP

> damage my ears until I can get a diagnosis & start treatment?

Hi there,

You sound just like me! I can set my clock by my ears. Everyday around

2.00pm my ears start getting red and I feel really nauseated. I am

really having trouble with my right ear, I think I am loosing some

hearing. It bothers me a little all the time, even when it is not red.

I am going back to my rheumy and bother him. He decided I didn't need

any medication as I am, in his words " a mild case " , but I am taking so

much ibuprofen just to deal with the ears, jaw pain, joint pain...

have you thought of another rheumy? make sure you find someone who

will work with you. When I first had inflammation in my eye, my eye

doc at the time, didn't know what to do, and I lost some sight.

Tell us something about you.. where you live, how long you have been

diagnosed. I just joined a little while ago, and everyone is great. If

you ask anything you will get an endless supply of great responses and

alot of terrific advice.

le

November 24, 2003

Hi Crystal, and CONGRATS on the loss!!!!! I saw my doc 2 weeks post-op, and

was down 26 lbs-most of that being water weight....after that, I seem to be

losing 2-3 lbs. weekly......slow, but a loss is a loss. I am working on getting

my protein in...I find it difficult to get 60-80 gms of protein in daily. I

still tend to get nauseated, but am really working on the intake. I was on clear

liquids for the first 2 weeks until the ok from the doc...2) Yes, I did have

diarrhea until my body became adjusted, and it lasted for like 3 weeks. 3) No

rumbling, but I noticed that I get a lot of gurgling in my throat after eating.

4) Hubby ate out a few times with me with him, and yes, it was difficult, but it

is not forever...just temporarrily....5) take it easy on the exercise...just do

what you can and don't push it. When the doc gave me the ok, I joined Curves,

and LOVE it!!!!! 6) Get the ok from your doc before you advance your diet. Glad

things are going well....keep us posted. I hope this helps?....sherri

Questions

I had my surgery on 11/18/03. I went today and got the tube out and I feel

much better! I have lost 11 pds from my preop visit on 11/13 to today! You

would

think with as little as I am taking in it would be more but I am cool with it.

Here are my questions! I know EVERYONE and EVERY situation is different but

it just helps to ask others experiences!

Right now and until this coming saturday I am on full liquid diet! Taking in

80 grams of protein a day.

1.) How much weight did you loose the first week? Where you on liquids or

just soft foods?

2.) Did you have trouble with diarreah? Im thinking its from being on

liquids..Maybe the protein??

3.) Starting this morning I have a terrible rumbly in my tummy. Kind of like

gas but I don't ever pass it. Sounds like thunder in my belly and pretty loud!

Anyone experience this? If so how long did it last?

4.) Did you have trouble when people at real foods around you when you

couldnt have them?

5.) The first week or 2 how much should we be walking? I have been in pretty

much pain till today with the tube so I have gotten in 1/4 mile the last 2

days. Hopefully tomorow I can get more!

6.) I am calling the dr tomorrow but just curious. At what stage can I try

milk? just to give me something different to drink....

THANKS IN ADVANCE!!

Crystal

11/18/03

365/348/175(some weight lost preop)

-17 pds Gone FOREVER!!!

Dr Bellanger

Vista Surgical Center

http://CrystalsWLSJourney.homestead.com/index.html

November 24, 2003

Crystal

I can't recall how much I lost the first week but it was around 15 pounds

(alot of that was water I am sure).

I was on liquids the first month I was home.

When I first came home from the hospital I didn't have a bowel movement for

like 10 days. Then I had diarrhea. I still have it occasionally (11 weeks

post op).

I imagine alot of things cause the diarrhea. Just the changes made to your

intestine could cause it. My doctor told me that while I was

adjusting/recovering I could expect it to come and go (no pun intended) for

up to about 6 months. It does get a bit better when you get on solid foods.

The rumbling in the belly is gas and don't worry it WILL pass eventually.

Now I have the noise but it passes....frequently!!!)

It doesn't bother me when people have food that I can't have. Sometimes

when hubby has something that I really shouldn't eat I might try a taste

(very small we are talking baby spoon size taste) and usually it doesn't

taste good to me. My taste buds have been totally whacked since the

surgery. Very little actually tastes good to me these days.

You should walk as much as you can.

I was able to have milk while I was still in the hospital. I think it was

the day after surgery.

Candi

Questions

I had my surgery on 11/18/03. I went today and got the tube out and I feel

much better! I have lost 11 pds from my preop visit on 11/13 to today! You

would

think with as little as I am taking in it would be more but I am cool with

it.

Here are my questions! I know EVERYONE and EVERY situation is different

but

it just helps to ask others experiences!

Right now and until this coming saturday I am on full liquid diet! Taking

in

80 grams of protein a day.

1.) How much weight did you loose the first week? Where you on liquids or

just soft foods?

2.) Did you have trouble with diarreah? Im thinking its from being on

liquids..Maybe the protein??

3.) Starting this morning I have a terrible rumbly in my tummy. Kind of

like

gas but I don't ever pass it. Sounds like thunder in my belly and pretty

loud!

Anyone experience this? If so how long did it last?

4.) Did you have trouble when people at real foods around you when you

couldnt have them?

5.) The first week or 2 how much should we be walking? I have been in

pretty

much pain till today with the tube so I have gotten in 1/4 mile the last 2

days. Hopefully tomorow I can get more!

6.) I am calling the dr tomorrow but just curious. At what stage can I try

milk? just to give me something different to drink....

THANKS IN ADVANCE!!

Crystal

11/18/03

365/348/175(some weight lost preop)

-17 pds Gone FOREVER!!!

Dr Bellanger

Vista Surgical Center

http://CrystalsWLSJourney.homestead.com/index.html

November 25, 2003

hey crystal. my answers are in ///// ///////

lori h.

> I had my surgery on 11/18/03. I went today and got the tube out and I feel

> much better! I have lost 11 pds from my preop visit on 11/13 to today! You

would

> think with as little as I am taking in it would be more but I am cool with it.

> Here are my questions! I know EVERYONE and EVERY situation is different but

> it just helps to ask others experiences!

>

> Right now and until this coming saturday I am on full liquid diet! Taking in

> 80 grams of protein a day.

>

> 1.) How much weight did you loose the first week? Where you on liquids or

> just soft foods?

/////// 16 lbs in 7 days /////////

> 2.) Did you have trouble with diarreah? Im thinking its from being on

> liquids..Maybe the protein??

//////// not initially ////////

> 4.) Did you have trouble when people at real foods around you when you

> couldnt have them?

////////// nope b/c i wasn't hungry till 5 months out /////////

> 5.) The first week or 2 how much should we be walking? I have been in pretty

> much pain till today with the tube so I have gotten in 1/4 mile the last 2

> days. Hopefully tomorow I can get more!

////// @ 2 weeks out i would walk around the mall (s)///////

> THANKS IN ADVANCE!!

> Crystal

> 11/18/03

> 365/348/175(some weight lost preop)

> -17 pds Gone FOREVER!!!

> Dr Bellanger

> Vista Surgical Center

> http://CrystalsWLSJourney.homestead.com/index.html

November 25, 2003

Hi Crystal,

Glad your surgery went well. I got home Friday and have lost the

total of 15lbs as of today...I can answer some of your questions as

of what the nurse told me before I left the hospital...Hope it helps.

1)I am on full liquids, I can have:low fat yogurt,strained

soups,apple juice,crystal lite,flavored uncarbinated water, creamed

soups pureed with chicken broth, and instant mashed potatoes made

with chicken broth instead of milk, you dont have to add salt

2)yes I had a horrible time with diarreah, it hit me at 5am friday

morn, I still have it, I go to the bathroom to pass gas b/c I know i

will do other than just pass gas....lol..but the nurse assured me it

will get better,,just remember what she told me.. " better comming out

than staying in " ...lol

3) yes I have the rumbly in my tummy I can hear it and wonder some

times if anyone else can..but again like the nurse said..it will

eventually pass

4)At the beginning I had a problem with it, but I surprised my self

Sunday, My family had an early Thanksgiving Dinner b/c my dad wasnt

going to be home and I did very well. I just made what I could eat

and brought it with me, Believe it or not I was not tempted with any

of the other stuff cooked.

5)I walk about every 4 hrs around the perimiter of my yard twice.

I had my tubes taken out before I came home but I know how

frustrating it was to walk with it in the hospital.

6) I am surprised they did not give you milk in the hospital. They

started me out on 2tsp of skim milk as soon and I was started on

liquids. But every Dr is different, I hated skim milk but I found a

really good one at Wal-Mart it is by Dairy fresh, Fat Free Skim Mils

Supreme.. it tastes really good.

I know that I am as far along as you since we had surgery on the

same day..But I just wanted to give you the input my DR and the

nurses had shared with me....

11/18/03

220/205/120?

Dr Dyas

Providence Hospital

Mobile AL

November 25, 2003

Hi Crystal, I've lost 10# in one week, also surgery on 11/18. I'm on liquid

only. Diarrhea only the 4th-5th day. I started yesterday with noise in my

belly too, but am assuming it's probably things just re-arranging, haha. I

have a little trouble with real food around, especially as I'm cooking it,

but as tempted as I get, I try to remember I'm doing what is best for me.

Strange....as I don't usually have willpower.

Joan C, California

LAP RNY 11/18/03

282/275/265

November 25, 2003

i am so glad that i am not the only one that tastes buds have changed sine

the wls. i do not have a taste for much of anything that i used to i had my

surgery on 10-28-03 and i am slowly working my way to more solid foods but

nothing

appeals to me or at time it will taste good today and tomorrow it wont. and i

know that i am not getting in the protien that i should. i hope that this

passes soon because i really do not want to get sick and end up back in the

hospital.

nora

post-op

10-28-03

292/263/160

November 25, 2003

Crystal,

1. I think I lost 11 pounds the first week.

2. The first couple of weeks I had some diarrhea, but it settled

down. I think I was getting it from using two scoops of protein in

my milk instead of one. Also I had a too rich lobster salad the

second week or so and I think that got me too. But at almost two

months out, it's settled down.

3. I agree the rumbling is probly gas.

4. I don't have any problem with people eating aroundme cuz I hardly

have an appetite. Nothing appeals to me anymore. My tastebuds have

really changed. I adored spaghetti and sauce and I tried it a couple

of weeks ago and it did nothing forme. I couldn't believe it. I

thought I'd really miss it, but I dont' sofar! I was a sugar addict

too and we're starting to get holiday sweets in the office and I'm

not having a problem. Cuz I just don't have an appetite and I'm

still scared to try sugar.

5. You gotta walk as much as you can, it helps you heal and get your

stamina back.

6. I also drank milk my second day in hospital.

Hoped some of this helped you.

LoriB

RNYLAP 10/3/03

228/194/135

Feeling great and starting to look really good!!!

Wearing a size 18 dress today, haven't been below a 22 in over 13

years!!! (Well I did have about a month or two in a size 20 a few

years ago, but - - - well - - - - you know how that USED TO go for

us!!!

> Crystal

>

> I can't recall how much I lost the first week but it was around 15

pounds

> (alot of that was water I am sure).

>

> I was on liquids the first month I was home.

>

> When I first came home from the hospital I didn't have a bowel

movement for

> like 10 days. Then I had diarrhea. I still have it occasionally

(11 weeks

> post op).

>

> I imagine alot of things cause the diarrhea. Just the changes made

to your

> intestine could cause it. My doctor told me that while I was

> adjusting/recovering I could expect it to come and go (no pun

intended) for

> up to about 6 months. It does get a bit better when you get on

solid foods.

>

> The rumbling in the belly is gas and don't worry it WILL pass

eventually.

> Now I have the noise but it passes....frequently!!!)

>

> It doesn't bother me when people have food that I can't have.

Sometimes

> when hubby has something that I really shouldn't eat I might try a

taste

> (very small we are talking baby spoon size taste) and usually it

doesn't

> taste good to me. My taste buds have been totally whacked since the

> surgery. Very little actually tastes good to me these days.

>

> You should walk as much as you can.

>

> I was able to have milk while I was still in the hospital. I think

it was

> the day after surgery.

>

> Candi

>

> Questions

>

> I had my surgery on 11/18/03. I went today and got the tube out

and I feel

> much better! I have lost 11 pds from my preop visit on 11/13 to

today! You

> would

> think with as little as I am taking in it would be more but I am

cool with

> it.

> Here are my questions! I know EVERYONE and EVERY situation is

different

> but

> it just helps to ask others experiences!

>

> Right now and until this coming saturday I am on full liquid

diet! Taking

> in

> 80 grams of protein a day.

>

> 1.) How much weight did you loose the first week? Where you on

liquids or

> just soft foods?

>

> 2.) Did you have trouble with diarreah? Im thinking its from

being on

> liquids..Maybe the protein??

>

> 3.) Starting this morning I have a terrible rumbly in my tummy.

Kind of

> like

> gas but I don't ever pass it. Sounds like thunder in my belly and

pretty

> loud!

> Anyone experience this? If so how long did it last?

>

> 4.) Did you have trouble when people at real foods around you

when you

> couldnt have them?

>

> 5.) The first week or 2 how much should we be walking? I have

been in

> pretty

> much pain till today with the tube so I have gotten in 1/4 mile

the last 2

> days. Hopefully tomorow I can get more!

>

> 6.) I am calling the dr tomorrow but just curious. At what stage

can I try

> milk? just to give me something different to drink....

>

> THANKS IN ADVANCE!!

> Crystal

> 11/18/03

> 365/348/175(some weight lost preop)

> -17 pds Gone FOREVER!!!

> Dr Bellanger

> Vista Surgical Center

> http://CrystalsWLSJourney.homestead.com/index.html

>

November 25, 2003

Lori B., Boy can I relate to the sugar addict. It's always been my

downfall. I am only into this 1 week so far, but am not hungry. Sweets

don't sound good, but others do (it's in the head)!!!!

Joan C, California

LAP RNY 11/18/03

Dr. Higa, Fresno, CA

282/275/264/???

Questions

>

> I had my surgery on 11/18/03. I went today and got the tube out

and I feel

> much better! I have lost 11 pds from my preop visit on 11/13 to

today! You

> would

> think with as little as I am taking in it would be more but I am

cool with

> it.

> Here are my questions! I know EVERYONE and EVERY situation is

different

> but

> it just helps to ask others experiences!

>

> Right now and until this coming saturday I am on full liquid

diet! Taking

> in

> 80 grams of protein a day.

>

> 1.) How much weight did you loose the first week? Where you on

liquids or

> just soft foods?

>

> 2.) Did you have trouble with diarreah? Im thinking its from

being on

> liquids..Maybe the protein??

>

> 3.) Starting this morning I have a terrible rumbly in my tummy.

Kind of

> like

> gas but I don't ever pass it. Sounds like thunder in my belly and

pretty

> loud!

> Anyone experience this? If so how long did it last?

>

> 4.) Did you have trouble when people at real foods around you

when you

> couldnt have them?

>

> 5.) The first week or 2 how much should we be walking? I have

been in

> pretty

> much pain till today with the tube so I have gotten in 1/4 mile

the last 2

> days. Hopefully tomorow I can get more!

>

> 6.) I am calling the dr tomorrow but just curious. At what stage

can I try

> milk? just to give me something different to drink....

>

> THANKS IN ADVANCE!!

> Crystal

> 11/18/03

> 365/348/175(some weight lost preop)

> -17 pds Gone FOREVER!!!

> Dr Bellanger

> Vista Surgical Center

> http://CrystalsWLSJourney.homestead.com/index.html

>

November 25, 2003

It does get better as time goes by. Right after surgery nothing tasted good

to me. Nothing tasted " right " either. Now there is still not alot that

really appeals to me but some things are tasting better. Seems like every

week it gets a bit better.

Candi

Re: Re: Questions

i am so glad that i am not the only one that tastes buds have changed sine

the wls. i do not have a taste for much of anything that i used to i had

my

surgery on 10-28-03 and i am slowly working my way to more solid foods but

nothing

appeals to me or at time it will taste good today and tomorrow it wont.

and i

know that i am not getting in the protien that i should. i hope that this

passes soon because i really do not want to get sick and end up back in

the

hospital.

nora

post-op

10-28-03

292/263/160

November 26, 2003

Dear Crystal,

My answers, like Lori's, are between the slashes...

> Right now and until this coming saturday I am on full liquid diet! Taking

in

> 80 grams of protein a day.

>

> 1.) How much weight did you loose the first week? Where you on liquids or

> just soft foods?

/////// clear liquids only for the first two weeks, I only lost one lb. the

first week (gained from fluids during hospital stay) but lost 32 more on my

second visit to have my staples removed. /////////

> 2.) Did you have trouble with diarreah? Im thinking its from being on

> liquids..Maybe the protein??

//////// big-time diarrhea, liquids in, liquids out... ////////

> 4.) Did you have trouble when people at real foods around you when you

> couldnt have them?

////////// not at all. In fact, early on, I lost interest in food and was

lucky to get my protein in through shakes /////////

> 5.) The first week or 2 how much should we be walking? I have been in

pretty

> much pain till today with the tube so I have gotten in 1/4 mile the last 2

> days. Hopefully tomorow I can get more!

////// As much as you can tolerate. I'm an amputee and was not allowed to

'walk' for almost the first 3 months -- didn't effect my weight loss at all

though. Now I'm all over the place. In fact, my husband complains about

how little I'm home... ///////

live each day like it's your last... love like you've never

been hurt...

Deb in Hazlet, NJ

" Debbie Dancer "

distal rny

September 3, 2002

386/221/165

BMI 60/32.6/24

-165

-92.5 "

Angel to Bill, Debbie, Ilene, Roy, and Ro

June 6, 2004

Hi everyone! Hope everyone is healing comfortably. I'm looking at the end of

July for my lower jaw advancement. I've seen the oral surgeon already but we are

waiting for 2 spaces to finish closing before we set a surgery date. I'm

starting to see my orthodontist every 2 weeks now to change the chain and

lacings on my bottom teeth to move the teeth faster. I'm really looking forward

to seeing the end result of this surgery. But the road I have to travel to get

there is making me a little nervous, I must say. What can I do to prepare for

the surgery? What questions should I ask the surgeon? He did tell me that I'll

have elastic bands in stead of being wired unless theres a problem. He also said

I'd be off from work a week. After some of the stories I've read that sure

doesn't sound like much time. I'm going to stay with my mom for a couple days

after I get out of the hospital, which I understand is an overnight. I wouldn't

have any help at home but will I be okay enough in a couple days to take care of

myself? Any advice would be appreciated! Thanks and happy healing to all! I hope

everything goes great! Mitzi

June 7, 2004

Mitzi,

I'm 4 1/2 weeks after lower advancement. A week might be a little

short on time off from work, most surgeons seem to recommend 10-14

days. Alot depends on what your job is (physical or lots of talking

usually need more) and your general health before the surgery. Try to

take as much time as you can afford to, you can always go back early,

but its usually difficult to request more time off if you need it.

Your first couple days back consider going half day until you get your

energy back.

I was alone after 3 days ( and getting 2 kids ready for school in the

am) and I was ok. I would recommend having someone call you on a

regular schedule during the day, just to make sure you are okay. I

did get really depressed on about day 6, pretty much spent the day

crying, would have been nice to have someone there, but I knew this

was a normal response to the meds and knew it would pass.

Hope this helps

Hannah

> Hi everyone! Hope everyone is healing comfortably. I'm looking at

the end of July for my lower jaw advancement. problem. He also said

I'd be off from work a week. After some of the stories I've read that

sure doesn't sound like much time. I'm going to stay with my mom for a

couple days after I get out of the hospital, which I understand is an

overnight. I wouldn't have any help at home but will I be okay enough

in a couple days to take care of myself? Any advice would be

appreciated! Thanks and happy healing to all! I hope everything goes

great! Mitzi

>

June 7, 2004

Thanks for the advice Hannah! As the surgery is looming closer I'm starting to

be a little more nervous. Probably because I'm a nurse and I have a little

knowledge about surgery and after effects. I'm glad you told me that you have

kids to care for. I have a 3 year old and a 7 year old. They are going to stay

with my cousin and her kids for a few days. As far as work goes I think I may

take a couple weeks off. That seems a little more reasonable to me. I hope your

journey on the road to recovery continues to go well. Thanks again!! Mitzi

Re: questions