Getting Started

[Guest guest]

Welcome . Go to the clos,net site and there's a lost of items to do. I used

it as a check sheet. The first thing to do is to do your on-line information.

Then you'll get a letter from Dr. R which you use to get your insurance

approval. Then you can either get an appt. with your doc at home right away, or

if you're only going to be able to have surgeyr if insurance pays, then you

might want to wait until you get approval then make your appt. In the meantime,

start gathering your contacts by writing to post-ops either on the clos.net site

or by personally emailing folks that you see posting here and are post-ops. I'm

always happy to be a contact when asked. My address is florence@...

Best wishes. It's an exciting and nervewracking journey from the time you find

out about the availability of the surgery until your day comes! Enjoy the ride

and stay with us. We'll help you along the way.

Flo in land

> ** Original Subject: RE: Getting started

> ** >

> ** Original Date: Mon, 16 Oct 2000 15:09:11 -0600

> ** Original Message follows...

>

> Hi everyone...I have been monitoring your board for about a month

> now....I thought I would wait a few months and then consider having

> the surgery...BUT.....I went to the doctor and found out I now have

> type 2 diabeties.....I have felt horrible emotionaly and of course

> giving up all suger is a pain in the butt.......I had a discussion

> with my husband and decided it is time to get started on getting

> excepted for surgery....I am alittle confused about getting

> started...do you have to complete the packet and send in before

> contacting the dr office....or do you contact them then do the

> packet......help...

>

> Looking forward to posting my first post-op message

>

> Greensboro, NC

> Only an hour from Dr. R.... :-)

>

>

>

[Guest guest]

I am getting started on SCD and have tried and failed a couple times now. I am

having trouble with slowly introducing new foods while changing up the menu.

From what I have been reading your not suppose to eat the same thing everyday,

but now I don't know what I am reacting too. Although I think my latest flare

is from too many peanut butter brownies.

To tell a little bit about myself I was diagnosed with crohn's in Aug 2009, much

to my surprise because I wasn't really sick, no weight loss, occasional D, and

no pain or blood. Since being diagnosed I believe I have had two, two month

remissions and a few mild flares. The stress of finding out made me pretty sick

for awhile.

I have already tried Aprisio- didn't reach inflamed area, Asocal - allergic,

Entocourt - never again and now my doc wants to put me on 6mp, which I don't

think I am sick enough to be on. Even with this flare I am not that bad.

Anyways, I was wondering if opting for the prednisone, which I hear works

wonders especially the first time, to get into remission and eat all SCD foods

and use the foods to stay in remission.

Does anyone know if this would work? If the prednisone would make it so I could

skip the trial and error of SCD?

[Guest guest]

I just wanted to chime in to tell you about my experience with prednisone. I

went on it pre-SCD and it definitely helped. However once I got on it I wasn't

able to get off for ELEVEN YEARS! You're only supposed to be on it for a couple

months. I was fine at the lowest dose but every time the docs tried to ween me

off I'd just flare up again. After I finally got a combo of SCD and Lialda (I

have UC so I'm not sure how effective Lialda would be for you) I got off

prednisone. It will mask any reactions you're having to food. So you'll feel

fine but as soon as you go off it you'll feel the effects of anything you're

body isn't ready for. So you'd flare and have to go right back on it.

The drug saved my life. There's no doubt in my mind. But it is not something I

would ever opt to go on unless I really, really had to. The side effects are

horrible! It's not just the physical side effects (weight gain, moon face,

extra hair growth in areas you really don't want it) but everything else

(insomnia, night sweats, extreme depression, voracious appetite, headaches

caused by the pressure from moon face, loss of taste, memory problems). These

aren't uncommon symptoms. Most of the people I know who have been on it have

suffered most of these symptoms as well. If it's something that you really need

to take because nothing else is working and your doctor thinks it's the way to

go then go for it and I'm sure it will help. But, speaking as someone who's

been on and off of it, in varying doses for over a decade let me just warn you

that if you don't need to go on it, don't do it. The side effects aren't worth

it. I'm not anti-medication. I'm not anti-predisone. I just know what it's

like to be on that drug. Trust me!

Stacey

>

> I am getting started on SCD and have tried and failed a couple times now. I am

having trouble with slowly introducing new foods while changing up the menu.

From what I have been reading your not suppose to eat the same thing everyday,

but now I don't know what I am reacting too. Although I think my latest flare

is from too many peanut butter brownies.

>

> To tell a little bit about myself I was diagnosed with crohn's in Aug 2009,

much to my surprise because I wasn't really sick, no weight loss, occasional D,

and no pain or blood. Since being diagnosed I believe I have had two, two month

remissions and a few mild flares. The stress of finding out made me pretty sick

for awhile.

>

> I have already tried Aprisio- didn't reach inflamed area, Asocal - allergic,

Entocourt - never again and now my doc wants to put me on 6mp, which I don't

think I am sick enough to be on. Even with this flare I am not that bad.

>

> Anyways, I was wondering if opting for the prednisone, which I hear works

wonders especially the first time, to get into remission and eat all SCD foods

and use the foods to stay in remission.

>

> Does anyone know if this would work? If the prednisone would make it so I

could skip the trial and error of SCD?

>

[Guest guest]

Hi Loretta (?)-

How wonderful that you have found and committed to SCD so early on in your

diagnosis! My experience is very similar to Stacey's- I have been fighting to

get off prednisone for almost 18 years now... ugh. The same thing happens to me

that happened to Stacey every time I try to wean off. If you actually have a

*choice* I would turn the other way and run! But you'll have to figure out what

the best option is to get your flare under control. I was on 6-mp for a long

time too and the potential side effects of that can be very scary. Everyone in

this group has had different experiences, so I'm sure you can get some great

advice from other people too

-Joanna

SCD 9/2009, Crohn's 1992, 30mg Prednisone

> >

> > I am getting started on SCD and have tried and failed a couple times now. I

am having trouble with slowly introducing new foods while changing up the menu.

From what I have been reading your not suppose to eat the same thing everyday,

but now I don't know what I am reacting too. Although I think my latest flare

is from too many peanut butter brownies.

> >

> > To tell a little bit about myself I was diagnosed with crohn's in Aug 2009,

much to my surprise because I wasn't really sick, no weight loss, occasional D,

and no pain or blood. Since being diagnosed I believe I have had two, two month

remissions and a few mild flares. The stress of finding out made me pretty sick

for awhile.

> >

> > I have already tried Aprisio- didn't reach inflamed area, Asocal -

allergic, Entocourt - never again and now my doc wants to put me on 6mp, which I

don't think I am sick enough to be on. Even with this flare I am not that bad.

> >

> > Anyways, I was wondering if opting for the prednisone, which I hear works

wonders especially the first time, to get into remission and eat all SCD foods

and use the foods to stay in remission.

> >

> > Does anyone know if this would work? If the prednisone would make it so I

could skip the trial and error of SCD?

> >

>