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As someone new to this subject, can someone tell me the different choices in

surgery and why or why not to them?

Or is it really up to the Doc? Do we have choices? Open/Laproscopic, etc.

Thanks in advance.

Ed Kemper & Delores

edkemper@...

> hi, i'm new to the group and wanted to introduce myself. i'm from

> maryland and am scheduled for open RNY on july 19, 2004. i've been

> researching for over a year now and feel i'm making the right choice

> for me. i'll probably lurk mostly until after surgery and then i'm

> sure i'll have tons of questions. congrats to all who have had the

> surgery and been succesful. see you on the loosing side.

> gale in maryland

> open rny 7/19/04

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Guest guest

In some cases you have options. But with some doctors they make the decision.

Because of where I carry my weight my surgeon is doing what is called hand

assisted lap. I will have a 4 inch incision that is just big enough for him to

put his hand in and then have the tools to work with too. But it is usually up

to the surgeon.

Re: new to the group

As someone new to this subject, can someone tell me the different choices in

surgery and why or why not to them?

Or is it really up to the Doc? Do we have choices? Open/Laproscopic, etc.

Thanks in advance.

Ed Kemper & Delores

edkemper@...

> hi, i'm new to the group and wanted to introduce myself. i'm from

> maryland and am scheduled for open RNY on july 19, 2004. i've been

> researching for over a year now and feel i'm making the right choice

> for me. i'll probably lurk mostly until after surgery and then i'm

> sure i'll have tons of questions. congrats to all who have had the

> surgery and been succesful. see you on the loosing side.

> gale in maryland

> open rny 7/19/04

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Guest guest

my surgeon only does open rny. i'm sure all surgeons are different.

> In some cases you have options. But with some doctors they make

the decision. Because of where I carry my weight my surgeon is doing

what is called hand assisted lap. I will have a 4 inch incision that

is just big enough for him to put his hand in and then have the tools

to work with too. But it is usually up to the surgeon.

>

>

> Re: new to the group

>

>

> As someone new to this subject, can someone tell me the different

choices in

> surgery and why or why not to them?

>

> Or is it really up to the Doc? Do we have choices?

Open/Laproscopic, etc.

>

> Thanks in advance.

>

> Ed Kemper & Delores

> edkemper@l...

>

> > hi, i'm new to the group and wanted to introduce myself. i'm from

> > maryland and am scheduled for open RNY on july 19, 2004. i've been

> > researching for over a year now and feel i'm making the right

choice

> > for me. i'll probably lurk mostly until after surgery and then i'm

> > sure i'll have tons of questions. congrats to all who have had the

> > surgery and been succesful. see you on the loosing side.

> > gale in maryland

> > open rny 7/19/04

>

>

>

>

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  • 1 year later...

Hi , and welcome to the group!

There is a tips document in the files section of the group's webpage,

try here:

http://f4.grp.yahoofs.com/v1/AH7jQxpz6y57rWdcElUBjUSPaXzlTWEkeiKWmgaLH0dIPI6bVwK\

T05td3nAK_2MSTZoR2PTSG8lbycFK4el9-4K800bkHw/Bracing%20file%2C%20FAB%20%28DBB%29/\

fab_tips_10_05_05%5B1%5D.pdf

This document is invaluable for helpful hints with the shoes. We wish

you all the best with them, the next few days will be the toughest so

if you have problems with the shoes please drop us a note and we can

help you through it!!! That's what we're here for.

>

> Hi to everyone! I'm new here and looking for people going through or

> having went through our situation. My son is 7 wks old (unilateral

> club foot) now and just got his DB bar/shoes on Tuesday. We are

> excited that the casting is finally over, but knew there would be some

> frustration to deal with because he cannot move his feet

> independantly. Just looking for any ideas, helpful hints for dealig

> with this bar on his feet. I read somewhere to try using no-skid

> socks so the foot doesn't move around in the shoe. I'm trying to

> teach him to move them both together so he will get more comfortable

> with it. I imagine his foot is tender right now from the casting?

> I've never had one.

>

> Thank you in advance for your help!

>

> in New Jersey

>

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Welcome to the group and congratulations on your new baby! :)

Sounds like you'er on the right track, helping him learn to live with the FAB,

move his feet, etc. Attitude does play a large roll in their adjustment

(parent's attitude). Some claim no-slip socks help - and in some cases they do

so it's worth a try. If you don't notice a difference though I wouldn't waste my

money on them. He might need thicker socks, or thinner socks. Kind of a

guessing game at first.

I used to tie little toys to Everett's bar. When he laid on his back and lifted

his legs, the toys would dangle down in front of him where he could play with

them, using his hands, taking his mind off his feet, and soon teaching him to

move his feet in the FAB to lift up his toys to reach. Little rattles and

bells too might encourage him to move and by moving, learn to adapt and maybe

even " like " the FAB a little more.

The FAB also helps form a Tri-Pod to balance a baby in sitting up positions a

little earlier than normal in some cases. Try propping him up against pillows

so he doesn't fall backwards, but this is a good way to otherwise engage his

mind away from the FAB and on to more positive ideas than fussing over the FAB.

Provided the shoes fit well and are not causing him pain, it'll just take a few

days or so for him to realize this is his new " normal " - but it will become

normal to him.

Good Luck!

ee

-----

Hi to everyone! I'm new here and looking for people going through or

having went through our situation. My son is 7 wks old (unilateral

club foot) now and just got his DB bar/shoes on Tuesday. We are

excited that the casting is finally over, but knew there would be some

frustration to deal with because he cannot move his feet

independantly. Just looking for any ideas, helpful hints for dealig

with this bar on his feet. I read somewhere to try using no-skid

socks so the foot doesn't move around in the shoe. I'm trying to

teach him to move them both together so he will get more comfortable

with it. I imagine his foot is tender right now from the casting?

I've never had one.

Thank you in advance for your help!

in New Jersey

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Welcome to the group and congratulations on your new baby! :)

Sounds like you'er on the right track, helping him learn to live with the FAB,

move his feet, etc. Attitude does play a large roll in their adjustment

(parent's attitude). Some claim no-slip socks help - and in some cases they do

so it's worth a try. If you don't notice a difference though I wouldn't waste my

money on them. He might need thicker socks, or thinner socks. Kind of a

guessing game at first.

I used to tie little toys to Everett's bar. When he laid on his back and lifted

his legs, the toys would dangle down in front of him where he could play with

them, using his hands, taking his mind off his feet, and soon teaching him to

move his feet in the FAB to lift up his toys to reach. Little rattles and

bells too might encourage him to move and by moving, learn to adapt and maybe

even " like " the FAB a little more.

The FAB also helps form a Tri-Pod to balance a baby in sitting up positions a

little earlier than normal in some cases. Try propping him up against pillows

so he doesn't fall backwards, but this is a good way to otherwise engage his

mind away from the FAB and on to more positive ideas than fussing over the FAB.

Provided the shoes fit well and are not causing him pain, it'll just take a few

days or so for him to realize this is his new " normal " - but it will become

normal to him.

Good Luck!

ee

-----

Hi to everyone! I'm new here and looking for people going through or

having went through our situation. My son is 7 wks old (unilateral

club foot) now and just got his DB bar/shoes on Tuesday. We are

excited that the casting is finally over, but knew there would be some

frustration to deal with because he cannot move his feet

independantly. Just looking for any ideas, helpful hints for dealig

with this bar on his feet. I read somewhere to try using no-skid

socks so the foot doesn't move around in the shoe. I'm trying to

teach him to move them both together so he will get more comfortable

with it. I imagine his foot is tender right now from the casting?

I've never had one.

Thank you in advance for your help!

in New Jersey

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  • 3 years later...

HI

My son was recently diagnosed with Crohn's. He did not have to be on the IV

steroid but has had to take the oral a few different times since March. We are

tapering him off of them right now (down to 5mg/day) he was started on 6MP back

in August when he was finally diagnosed and we still are not at a level that is

controlling the diarrhea. the process of getting then to a therapeutic level is

VERY slow. So even having been on the Prednisone for weeks now, he stiil has

symptoms. Our GI said that a person can actually stop responding to the

steroid-in term of it being as fast-acting as it was in the beginning.

I am starting my son on the diet in a week and very much look forward to getting

him off the meds (down the road) and seeing him get his strength and energy

back.

You can Google any of these meds or go to " WebMD " and put in the med you want

information on and it will have it there.

Good luck with your son. I know how frustrating this can be and we often do not

get a complete and thorough answer from the docs. This is why we do our own

research. :)

Good health to your son and husband,

Sherry

>

> Hi,

> I joined the group sometime last month, but I haven't posted yet. My six year

old son was diagnosed with ulcerative colitis two months ago, and my husband

also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has

had good results on SCD, and hasn't been on any medication for the last two

years. I am very commited to keeping my son on the diet, but I have some

questions about other treatments the doctors are recommending.

>

> In the hospital, my son responded well to iv steroids- he stopped bleeding and

stopped having diarrhea. He came home on oral steroids (prednisolone) and after

a week, they started tapering him down. His symptoms came back, and now he is on

a pretty high dose (any higher, and they said he would have to switch to iv

steroids). So, they want to add 6MP or azathioprine before they try to taper him

off the steroids again. His doctors don't seem very open to discussing their

rational or presenting options- I guess they used to everyone just trusting that

they know best.

>

> I'm exhausted and fearful, and would appreciate any personal experiences

people have had, or any advice on where to research these medicines.

>

> Thanks,

> Calypso

>

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Calypso,Is your son on the diet now? Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse.The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage

isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. Has the doctor discussed Asacol (orally or suppository)? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. All of these drugs can be of good use under the right circumstances.

Sometimes the gut is so inflammed that almost all food will be

rejected -- even good healing food--so these medications are good at

'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address.Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosenaltrexone.org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. Amelia.Husband UC 9 years, SCD 19 monthsLDN 3mg

To: BTVC-SCD Sent: Thu, February 4, 2010 4:15:41 AMSubject: new to the group

Hi,

I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending.

In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best.

I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines.

Thanks,

Calypso

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  • 1 month later...
Guest guest

Hey Gang -

So I have UC and started the diet about a week ago - I am doing pretty well -

stomach pain way less, little to no gas, had two bms yesterday and one was

halfway formed!!!!!

I did notice way more diarrhea in the beginning - like 8 to 10 times a day at my

worst!!! Which I read often happnes at the beginning. One thing that worries me

a little is the color - it is darker than normal and kinda green.

What a way to introduce myself to the group!! - a question on diarrhea color!!!

But just wondered if that was something others had found happens?

Also does anyone know of any support groups in the Austin, Texas area? I know

having one would help -

Thanks! -

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