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,

Some people have posted a slow weight loss, some has said that they needed to

eat more, because their body thought it was starving and slowed down metabolism

causing a slower weight loss.

I'm just a pre-op so I don't know more than what I read... maybe someone else

will chime in here and let you know about their experiences.. okay

Trudy

new member

Hi everyone,

My name is from NC. My surgery was 10/09/00. I

was wondering if anyone has had " slow " weight loss.

I'm at the 3 week mark and have lost 12 lbs. So far

no complications and no dumping. Having to force

myself to eat , but off diabetes meds and hypertension

meds, so I guess I can't complain about the 12 lb

loss. Just wanted to say hello.

__________________________________________________

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  • 2 years later...

i DO NOT HAVE THE BREATHING PROBLEMS. I HAVE ALOT OF PAIN IN THE JOINTS, NOSE. i was diagnoses about three months ago. i get alot of information from this group ASK anything i do ? there is no dumb questions,are you on anything else besides pred? how much pred are you on now.

SHERRIE

-- New member

Dear Sheree and Sharon, I am new to this group. I have been diagnosed with Rpolychondritis the past month and am trying to find out more information. I am sorry to hear of the problems you both are having with being diagnosed and treated . I seem to have a good team of doctors. They all comminicate well and don't hesitate to call one another. Of course they have not treated this disease before and I think they feel I am an interesting case. I did not know this also affected the roof of your mouth. So far I have just had it affveact my ear. But also I really have shortness of breath. Do either of you have that. How long have you had this, and you mentioned the pain, does it affect the joints or bones. Being on Pred. does take away any pain right now for me.Keep in touch and I hope both of you are better 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

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Sorry, I don't know your name. I also have shortness of breathe. They do not know what causes mine. My heart and lungs are okay. My oxygen level does get low. Looking forward to getting to know you.

So far I have just had it affveact my

ear. But also I really have shortness of breath. Do either of you have

that. How long have you had this, and you mentioned the pain, does it

affect the joints or bones. Being on Pred. does take away any pain

right now for me.

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  • 11 months later...

welcome Dawn. Hope you enjoy this group and participate often.

Lori Owen - Denton, Texas

SRVG 7/16/01

Dr. Ritter/Dr. Bryce

479/356/hoping for close to 200

On Thu, 27 Nov 2003 01:36:37 -0000 " dawnnralf "

writes:

> Hi gang,

>

> I'm new to this list, but have heard of you guys from many friends

> I've met through the WLS process.

>

> My name is Dawn,

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Welcome Ellen. Glad you joined us.

Lori Owen - Denton, Texas

SRVG 7/16/01

Dr. Ritter/Dr. Bryce

479/356/hoping for close to 200

On Sat, 29 Nov 2003 18:16:28 -0500 " Ellen " writes:

> Hi, I'm Ellen... 6 yrs post op. 10/23/97. I lost 115 pounds

> and put back on about 10. I really would like to get back on the

> ball again and lose those extra pounds plus more. I even thought

> about having my pouch redone.

>

> Ellen

> 10/23/97

> 300/185 /195

>

>

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In a message dated 11/29/2003 6:55:07 PM Eastern Standard Time,

Elly@... writes:

I even thought about having my pouch redone.

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

Why do you think you need your pouch redone? There is a ton of wisdom and

knowledge here, but we need details on what is going on with you.

Fay Bayuk

**300/168

10/23/01

Dr.

Open RNY 150 cm

Click for My Profile

http://obesityhelp.com/morbidobesity/profile.phtml?N=Bayuk951061008

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Hi Ellen, I'm inferring from your post that you didn't get down to your

goal weight, but I think that you have done an amazing job being 6 years out and

managing to keep your weight loss pretty much in a holding pattern. 10 lbs

over 6 years isn't an enormous regain by any stretch of the waistline, so you

should feel pretty good about yourself that you have being doing a good job!

Hell I'm up 7lbs just in the past two weeks! LMAO! (laughing on the outside

crying on the inside, trust me!) What did you mean by having your pouch

redone?

Lucille

In a message dated 11/30/2003 9:04:23 AM Eastern Standard Time,

Graduate-OSSG writes:

>

>

> Hi, I'm Ellen... 6 yrs post op. 10/23/97. I lost 115 pounds and put

> back on about 10. I really would like to get back on the ball again and lose

> those extra pounds plus more. I even thought about having my pouch redone.

>

> Ellen

>

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  • 1 month later...

Welcome to the group Martha. Hope to see you posting more.

Lori Owen - Denton, Texas

SRVG 7/16/01

Dr. Ritter/Dr. Bryce

479/356/hoping for close to 200

> In a message dated 1/12/2004 3:57:49 PM Eastern Standard Time,

> nursefera2@... writes:

>

>

> > Hello. My name is Martha Silverspring. >

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Welcome Cheri. So you're from Denton Huh? Would love to get together

sometime. I live over by UNT.

Lori Owen - Denton, Texas

SRVG 7/16/01

Dr. Ritter/Dr. Bryce

479/356/hoping for close to 200

On Mon, 12 Jan 2004 20:46:55 -0000 " aafaith "

writes:

> Hello,

>

> My name is Cheri and I had my RNY surgery in June 2000.

> Cheri in Denton, TX

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Welcome to the group Martha! I am in hog heaven with the wealth of

information this group puts out. I am impressed and hope you will be

too!!!!!!!!

Fwd: New member

Meant for the list......

*********************************

In a message dated 1/12/2004 3:57:49 PM Eastern Standard Time,

nursefera2@... writes:

> Hello. My name is Martha Silverspring. I am 51 years old this February. I

> had open-incision RNY at Kaiser South San Francisco on 9/30/2002. At 148#,

I'm

> pretty much at my estimated goal weight and still losing a bit-- will

> probably end up at 140. When I started I was 276. My top weight was 285. I

have had

> very few problems, despite a few bouts with 'chickenitis' and transient

> obstructions. I'm an RN x 20 years (mostly oncology). I do home IV nursing

> part-time, and technical writing full time for a medical equipment

company. I'm

> interested in this group because I'd like to know/hear from more seasoned

> post-ops.

>

> Thanks.

>

> Martha

>

>

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  • 2 weeks later...

In a message dated 1/23/2004 5:38:45 PM Eastern Standard Time,

dragonflylm@... writes:

I have only lost 57 pounds and am always interested in hearing what other

>> people have gone through and offering support where I can

>>

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

Do you know why you are a slow loser. Maybe you can share more info.

Fay Bayuk

**300/171

10/23/01

Dr.

Open RNY 150 cm

Click for My Profile

http://obesityhelp.com/morbidobesity/profile.phtml?N=Bayuk951061008

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  • 2 weeks later...

Hello Jack,

Welcome to the list. I love your son's name, as you

will soon see why - my husband, , is from

Ireland as well. He was born in England but grew up

in Cork. His entire family is in Ireland, but they

visit us now and again, here in sunny California.

We have twins wcf - Mick and Alli. They're 4 now.

They were diagnosed at 3 months. I hope Padraig is

well and full of energy. The treatments and enzymes

today can make such a difference.

If you have any questions, this is the group to ask.

They are all well informed and so helpful. I have

learned alot from this list, though I have little time

to post myself.

Best of luck to you, your wife, Padraig and wee one.

C

Mommy to Mick and Alli, 4 yo twins wcf

--- padraigjackpaul wrote:

> Hi everyone, I have just found this site. We have

> three kids " one

> with CF " . His name is Padraig'he was diagnosed @2

> when my wife was 3

> months pregnant,Its been pretty difficult. He is

> pretty " !good " now.

> I am from Ireland and would to chat to parents in a

> similar situation

>

>

>

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Hello, and welcome! We look forward to getting to know you! n

Rojas, wcf, mom of 3 adults, the youngest of whom has cf, also. . .

new member

Hi everyone, I have just found this site. We have three kids " one

with CF " . His name is Padraig'he was diagnosed @2 when my wife was 3

months pregnant,Its been pretty difficult. He is pretty " !good " now.

I am from Ireland and would to chat to parents in a similar situation

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

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Welcome! I am sorry to hear that your little one has CF, but this is a great

list for info and help (as well as some humor)

mom of 5 with CF and one on the way!

new member

Hi everyone, I have just found this site. We have three kids " one

with CF " . His name is Padraig'he was diagnosed @2 when my wife was 3

months pregnant,Its been pretty difficult. He is pretty " !good " now.

I am from Ireland and would to chat to parents in a similar situation

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

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Welcome to our CF family. Sorry to hear about Padraig' diagnosis. This

is a great place to learn all about CF and how it can be so different from

person to person. Glad he is doing ok now. It is very hard to deal with

this disease sometimes.

Let us know if you have any questions.

Tina W., mother of , 18yo wcf

Re: new member

Welcome! I am sorry to hear that your little one has CF, but this is a

great list for info and help (as well as some humor)

mom of 5 with CF and one on the way!

new member

Hi everyone, I have just found this site. We have three kids " one

with CF " . His name is Padraig'he was diagnosed @2 when my wife was 3

months pregnant,Its been pretty difficult. He is pretty " !good " now.

I am from Ireland and would to chat to parents in a similar situation

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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

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Re: new member

Welcome to the list Padraig's dad! What is your name, is it Padraig too? This

is a great list, I don't know if we have any other Irish families but we might.

I'm and I have 2 " kids " , my son is Nick, he is 21 without cf, and my

daughter is , she is 20 and has cf. Hope to hear more from you.

love,

from Orange Co CA close to Disneyland!

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Welcome to our list; this a warm, comfortable, informative, compassionate, and

even on occasion hilarious list, said,

she, a modest member, n Rojas

new member

Hi everyone, I have just found this site. We have three kids " one

with CF " . His name is Padraig'he was diagnosed @2 when my wife was 3

months pregnant,Its been pretty difficult. He is pretty " !good " now.

I am from Ireland and would to chat to parents in a similar situation

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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

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  • 4 weeks later...

Welcome to our group. It was not our wish that you join us this way, but we're

glad that you have found a place where people understand exactly what you're

going through.

You are still in the grieving process. It's ok, let yourself grieve. When you

hit the angry stage, be angry at this cursed disease that comes where it isn't

wanted.

One day you will wake up and notice that the sun is still shining, and birds are

singing. The world does go on and so should you and your family.

Letting yourself go through the grief of having a loved one affected by such a

disease, of not getting the life you thought you'd have, etc. is the only

healthy way to get through this. Talk to us and we will talk back and

eventually you will see that life still, indeed, is good.

much love,

Dawn mom of 4, 8 and under, the youngest wcf

New member

Hello! I am new to the group. I have two children my son will be 3

in two weeks, w/o CF and my daughter who is 5 months w/ CF. I am

having a hard time knowing what to do with all the emotions that this

diagnosis brings and would like some advise from those who have been

through it. Our daughter was diagnosed at 1 week of age and has been

on Creon since 3 weeks. She is very healthy for which we are very

thankful, but I feel like I am waiting for the ball to drop and just

woudl like to know what to expect. Any advise on how to focus on the

positive instead of the negative aspects of this disease would also be

appreciated.

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

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

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Hi, welcome to the group. I think you will find a lot of support here

and gradually your view will change from " the cup being half empty " to

" the cup being half full " . My daughter is 15months wCF and I too have a

son who is 3 without CF. My daughter is doing very well; she takes her

enzymes and vitamins but has had no lung issues yet. She has had one

very minor cold which never went to her lungs. I too have felt like I

was waiting for the ball to drop and everything to get bad. I was

scared to death for her to get that first cold. Once she got it and we

got through it (with the help of this group) I realized it was not as

bad as I had imagined it would be. I think it just takes time, you are

still grieving. You are in the right place; the people on this list are

very supportive and helpful. The hardest part about this disease (in my

opinion) is the unknown...every child, in spite of their mutations, goes

through it differently. You just need to take it day by day. Enjoy the

times that are good and know that you will have the strength to get

through the times that are bad. Also, stay hopeful! They are learning

so much and things are only going to get better in the way of treatment.

Mom to Ellie 15mo wCF and Jack 3 1/2yrs noCF

New member

Hello! I am new to the group. I have two children my son will be 3

in two weeks, w/o CF and my daughter who is 5 months w/ CF. I am

having a hard time knowing what to do with all the emotions that this

diagnosis brings and would like some advise from those who have been

through it. Our daughter was diagnosed at 1 week of age and has been

on Creon since 3 weeks. She is very healthy for which we are very

thankful, but I feel like I am waiting for the ball to drop and just

woudl like to know what to expect. Any advise on how to focus on the

positive instead of the negative aspects of this disease would also be

appreciated.

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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

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In a message dated 2/28/2004 7:17:13 PM Central Standard Time,

irisbuf@... writes:

Hello! I am new to the group. I have two children my son will be 3

in two weeks, w/o CF and my daughter who is 5 months w/ CF. I am

having a hard time knowing what to do with all the emotions that this

diagnosis brings and would like some advise from those who have been

through it. Our daughter was diagnosed at 1 week of age and has been

on Creon since 3 weeks. She is very healthy for which we are very

thankful, but I feel like I am waiting for the ball to drop and just

woudl like to know what to expect. Any advise on how to focus on the

positive instead of the negative aspects of this disease would also be

appreciated.

HI!! I am a mom of three girls and two of them have CF. I know how you feel I

was there almost 6 years ago. My oldest was not diagnosed until she was 6

years old. I still feel like I am waiting for that ball to drop I don't think

you

ever get rid of that feel. But you have to realize there are a lot of new

drugs out there that they didn't have years ago. So people are living a lot

longer. You have to the right place for support. We are all here for you!! Deb A

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Guest guest

Hi there and welcome to the list.

You will find many folks here who have many of your same experiences. BUT

all have different forms of how they deal with each thing...You will be able

to do " your thing " and feel comfortable with it. Take each day at a time as

you would with or with out CF. ..YES............We did go thru this two . My

daughter had ERIN wCF, then, 2 yrs & 3-1/2 years later had 2 more daughters.

WITHOUT CF. ErIN had treatments & the younger sisters just grew up

accepting Mr machine, etc. My daugther & soninlaw , treated all alike &

cherished each day they had. ------------She is a sophomore in college today

& doing well.

No one ever knows when one will have a ball drop on them......That isn't

your doing, anymore then the CF........LOVE THEM....ENJOY THEM.........They

are so much fun & love. I have 5 children & 5 wonderful in-law

children.....Then the prizes of 10 grandchildren............EACH is a star

in our precious family.

Best wishes, LOVE & HUGS,

GrandmomBEV

New member

Hello! I am new to the group. I have two children my son will be 3

in two weeks, w/o CF and my daughter who is 5 months w/ CF. I am

having a hard time knowing what to do with all the emotions that this

diagnosis brings and would like some advise from those who have been

through it. Our daughter was diagnosed at 1 week of age and has been

on Creon since 3 weeks. She is very healthy for which we are very

thankful, but I feel like I am waiting for the ball to drop and just

woudl like to know what to expect. Any advise on how to focus on the

positive instead of the negative aspects of this disease would also be

appreciated.

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

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Guest guest

Hi ,

Yes, stinky poops are common with CF kids, but

the fact that he's big is a good sign - although

some cfers are pancreatic sufficient, meaning

they seem to metabolize fats and proteins okay.

Usually the color of the poop is actually lighter

than normal, not darker (at least in my son's case

it was - kind of a wierd greyish-yellow color).

Someone else may have experienced darker though, I

don't know. Poops are also often runny, large and

occur almost immediately after eating - or there can

be blockages.

Mucous and/or grease are also common in cf stools

when enzymes are not given. Perhaps your son can have

a blood test to check for all known mutations

to start with?

Other than the RSV episode, has he had alot of colds,

sinus infections, coughing episodes? If not, there is

a good chance he doesn't have cf.

Best of luck to you. I don't know anything about JS,

but I imagine you have enough on your plate already,

and I hope you don't also have to deal with CF.

All my best wishes,

C

Mommy to Mick and Alli, 4 yo twins wcf

--- Tulumalo wrote:

> Hi. My name is , and I have a 5 month old

> child that has a

> totally different syndrome - Joubert Syndrome (JS).

> He had to have

> an abdominal ultrasound to rule out some things with

> that syndrome,

> and it turned out that we may be looking at a dual

> diagnosis of some

> sort. The GI mentioned Cystic Fibrosis as a

> possibility. I'm a

> member of a yahoo group for Joubert Sydrome - my 5

> year old also has

> JS, and I know that these groups of parents are the

> best resource

> out there. So, I am turning to this group to ask

> some

> questions...maybe you can shed some light on what we

> are seeing.

>

> Basically, the head of his pancreas is small for

> age, and his spleen

> was large for age. (He also had RSV, so this may

> account for the

> spleen) He is a breast fed baby...yet his bowel

> movements are quite

> stinky (the only time in his life they shouldn't

> be!) and they

> aren't yellow and mustardy, they are a little

> mucousy and a little

> dark. He has gas a lot, which is also quite

> stinky...again, not

> really normal for a breast fed baby. He also seems

> to nurse a

> little more frequently than he should at this

> point...every 2 1/2 -

> 3 hours instead of every 4 hours.

>

> That's it...that's what prompted this doctor to say

> that CF is a

> possibility. We are going to have the ultrasound

> redone to see if

> the pancreas is still small, and if it is she said a

> sweat test and

> a few other tests. He is off the charts...weighing

> 22 pounds at

> only 5 months. Nothing strange came back in the

> bloodwork we've had

> done so far. He doesn't seem to be in any pain

> (anymore...he used

> to have bad pain with his gas, but then again MANY

> babies do!).

>

> I guess my question is this...did any of you find

> out your child had

> CF this way? Does this sound like CF to you? Do

> you think it might

> be something different, or nothing really? My

> experience has been

> that parents know more than doctors! :)

>

> I appreciate your help! Thank you for reading, and

> sorry so long!

>

> Tulumalo

>

>

>

>

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