Re: Have to get colon fully removed in next few weeks

[Guest guest]

Hi Mark,

I haven't had my whole colon removed (I still have a few inches) so I cannot

advise on your situation. But I just wanted to say that I think you are very

brave and I hope this surgery is a 100% success. It sounds like doing SCD is a

great way to keep what you will have left healthy. The great thing about the

diet is that it is so healthy that it can't hurt you to do it- you have nothing

to lose!

-Joanna

SCD 9/2009, Crohn's 1992, 22.5mg Prednisone

=

> My hope is that when i recover and gain my weight back i want to restart SCD

and stick to it for life so my chrons does not return in my small bowel ever.

>

> I'd like to know what people think or have they had this happen to them as i

could do with some advise, Thanks Mark

>

[Guest guest]

Heya Mark,

I am so sorry you are so sick and going through such a challenging time. My

heart goes out to you! It's not easy.

I have been through some of my own health challenges and last year I had to get

about 2 feet removed of colon and intestine.

I've been hospitalized a couple of times and although challenging I was able to

stay %100 SCD the entire time. I would deeply encourage you to do so. But at

the end of the day you need to make the choices best suited for you!

Good luck and in the best of health!

Jodi

>

> Hi,

> I was with my gastroenterologist yesterday and its decided i need surgery. Ive

been very unwell for over a year now and my weight has dropped rapidly in the

past couple of months im only 6 and half stone. Ive tried scd and LDN for a

month now but time is against me and im too sick right now to give the SCD

anymore time and hope things get better, My situation is that no drugs have

worked for me in 2 years and ive been on prednisilone way too long and right now

there not even working to stop my diorreha and weight loss. Its too dangerous to

get such a big operation when my weights low as the risks of complications are

higher and i dont want that. My whole colon and rectum are where my disease is

so they will be fully removed and il be on a stoma bag for life as it cant be re

attached. Its hard to accept but i have no choice or i will risk as my

gastroenterologist said possible death if i dont get it done. i will continue

scd as much as i can but after the operation il be in hospital recovering for a

few weeks id say and it will be impossible to eat scd while in there.

>

> My hope is that when i recover and gain my weight back i want to restart SCD

and stick to it for life so my chrons does not return in my small bowel ever.

>

> I'd like to know what people think or have they had this happen to them as i

could do with some advise, Thanks Mark

>

[Guest guest]

Hi Mark,

I don't have any advice for you, but I just wanted to say that I'm really sorry

you have to go through this. I think it's great that you are planning on

sticking with SCD after your surgery. I hope all goes well and you are feeling

better soon.

Take care,

Amber

>

> Hi,

> I was with my gastroenterologist yesterday and its decided i need surgery. Ive

been very unwell for over a year now and my weight has dropped rapidly in the

past couple of months im only 6 and half stone. Ive tried scd and LDN for a

month now but time is against me and im too sick right now to give the SCD

anymore time and hope things get better, My situation is that no drugs have

worked for me in 2 years and ive been on prednisilone way too long and right now

there not even working to stop my diorreha and weight loss. Its too dangerous to

get such a big operation when my weights low as the risks of complications are

higher and i dont want that. My whole colon and rectum are where my disease is

so they will be fully removed and il be on a stoma bag for life as it cant be re

attached. Its hard to accept but i have no choice or i will risk as my

gastroenterologist said possible death if i dont get it done. i will continue

scd as much as i can but after the operation il be in hospital recovering for a

few weeks id say and it will be impossible to eat scd while in there.

>

> My hope is that when i recover and gain my weight back i want to restart SCD

and stick to it for life so my chrons does not return in my small bowel ever.

>

> I'd like to know what people think or have they had this happen to them as i

could do with some advise, Thanks Mark

>

[Guest guest]

I'm sorry to hear your news also.  Sounds like the past couple or more years have been really hard for you.  I hope you have a speedy recovery. 

 

I met someone when I was first dx'd who had the same operation you are having.  He is doing very well and now advocates to other folks with crohn's disease.  He talked a mile a minute, had great advice on everything.  Really nice, nice man.  He's doing great physically now. 

 

I hope this surgery helps get your life back and you feel 100% healthy again.

 

Btw, I noticed you mentioned you started LDN a month ago.  I started 3/11 and was just miserable until I found the right doseage, went through whatever die-off, etc.  Are you going to stop that before the surgery?  It may interfere with the pain medicine.

 

Debbie 41 houston cd dx'd 3.02

 

Hey Mark,I'm also really sorry to hear your news. And that you have to go through this right now. Please stay in touch and let us know how you are doing. Also, I agree with Jodi, if there is any way you can prepare some SCD food for while

you are in the hospital, that might help your recovery time from healing after your surgery. Although I'm not really sure how it works in the case of removing the colon - what the schedule is for resumption of eating - I guess they take it pretty slowly, given

the givens. Hope you do as well as possible,Regards,Mara > Hi Mark,> > I don't have any advice for you, but I just wanted to say that I'm really sorry you have to go through this. I think it's great that you are planning on sticking with SCD after your surgery. I hope all goes well and you are feeling better soon.

> > Take care,> > Amber> > >>

>> Hi,>> I was with my gastroenterologist yesterday and its decided i need surgery. Ive been very unwell for over a year now and my weight has dropped rapidly in the past couple of months im only 6 and half stone. Ive tried scd and LDN for a month now but time is against me and im too sick right now to give the SCD anymore time and hope things get better, My situation is that no drugs have worked for me in 2 years and ive been on prednisilone way too long and right now there not even working to stop my diorreha and weight loss. Its too dangerous to get such a big operation when my weights low as the risks of complications are higher and i dont want that. My whole colon and rectum are where my disease is so they will be fully removed and il be on a stoma bag for life as it cant be re attached. Its hard to accept but i have no choice or i will risk as my gastroenterologist said possible death if i dont get it done. i will continue scd as much as i can but after the operation il be in h! > ospital recovering for a few weeks id say and it will be impossible to eat scd while in there. >> >> My hope is that when i recover and gain my weight back i want to restart SCD and stick to it for life so my chrons does not return in my small bowel ever.

>> >> I'd like to know what people think or have they had this happen to them as i could do with some advise, Thanks Mark>> > > > > > ------------------------------------

> >

[Guest guest]

i'm so sorry to hear - I know scd has saved many from surgery and wish it had

for you - i agree with getting soup, pureed stuff ready for hospital stay to

make recovery as quick as possible - praying for you

eileen

> > >>

> > >> Hi,

> > >> I was with my gastroenterologist yesterday and its decided i need

> > surgery. Ive been very unwell for over a year now and my weight has dropped

> > rapidly in the past couple of months im only 6 and half stone. Ive tried scd

> > and LDN for a month now but time is against me and im too sick right now to

> > give the SCD anymore time and hope things get better, My situation is that

> > no drugs have worked for me in 2 years and ive been on prednisilone way too

> > long and right now there not even working to stop my diorreha and weight

> > loss. Its too dangerous to get such a big operation when my weights low as

> > the risks of complications are higher and i dont want that. My whole colon

> > and rectum are where my disease is so they will be fully removed and il be

> > on a stoma bag for life as it cant be re attached. Its hard to accept but i

> > have no choice or i will risk as my gastroenterologist said possible death

> > if i dont get it done. i will continue scd as much as i can but after the

> > operation il be in h!

> >

> > > ospital recovering for a few weeks id say and it will be impossible to

> > eat scd while in there.

> > >>

> > >> My hope is that when i recover and gain my weight back i want to restart

> > SCD and stick to it for life so my chrons does not return in my small bowel

> > ever.

> > >>

> > >> I'd like to know what people think or have they had this happen to them

> > as i could do with some advise, Thanks Mark

> > >>

> > >

> > >

> > >

> > >

> > > ------------------------------------

> > >

> > >

[Guest guest]

I was going to continue ldn. why what will it to do to interfere with pain medicine i thought there was no side effects with ldn?

mark

To: BTVC-SCD Sent: Sun, May 23, 2010 5:41:45 PMSubject: Re: Re: Have to get colon fully removed in next few weeks

I'm sorry to hear your news also. Sounds like the past couple or more years have been really hard for you. I hope you have a speedy recovery.

I met someone when I was first dx'd who had the same operation you are having. He is doing very well and now advocates to other folks with crohn's disease. He talked a mile a minute, had great advice on everything. Really nice, nice man. He's doing great physically now.

I hope this surgery helps get your life back and you feel 100% healthy again.

Btw, I noticed you mentioned you started LDN a month ago. I started 3/11 and was just miserable until I found the right doseage, went through whatever die-off, etc. Are you going to stop that before the surgery? It may interfere with the pain medicine.

Debbie 41 houston cd dx'd 3.02

On Sun, May 23, 2010 at 8:53 AM, Mara Schiffren <alcibiades (AT) rcn (DOT) com> wrote:

Hey Mark,I'm also really sorry to hear your news. And that you have to go through this right now. Please stay in touch and let us know how you are doing. Also, I agree with Jodi, if there is any way you can prepare some SCD food for while you are in the hospital, that might help your recovery time from healing after your surgery. Although I'm not really sure how it works in the case of removing the colon - what the schedule is for resumption of eating - I guess they take it pretty slowly, giventhe givens. Hope you do as well as possible,Regards,Mara > Hi Mark,> > I don't have any advice for you, but I just wanted to say that I'm really sorry you have to go through this. I think it's great that you are planning on sticking with SCD after your surgery. I hope all goes well and you are feeling better soon.> > Take care,> > Amber> > >> >> Hi,>> I was with my gastroenterologist yesterday and its decided i need surgery. Ive been very unwell for over a year now and my weight has dropped rapidly in the past couple of months im only 6 and half stone. Ive tried scd and LDN for a month now but time is against me and im too sick right now to give

the SCD anymore time and hope things get better, My situation is that no drugs have worked for me in 2 years and ive been on prednisilone way too long and right now there not even working to stop my diorreha and weight loss. Its too dangerous to get such a big operation when my weights low as the risks of complications are higher and i dont want that. My whole colon and rectum are where my disease is so they will be fully removed and il be on a stoma bag for life as it cant be re attached. Its hard to accept but i have no choice or i will risk as my gastroenterologist said possible death if i dont get it done. i will continue scd as much as i can but after the operation il be in h! > ospital recovering for a few weeks id say and it will be impossible to eat scd while in there. >> >> My hope is that when i recover and gain my weight back i want to restart SCD and stick to it for life so my chrons does not return in my small bowel ever.>> >> I'd like to know what people think or have they had this happen to them as i could do with some advise, Thanks Mark>> > > > > > ------------ --------- --------- ------> >

[Guest guest]

On Sun, 23 May 2010 15:27:52 -0400, mark lambert

wrote:

> I was going to continue ldn. why what will it to do to interfere with

> pain medicine i thought there was no side effects with ldn?

>

> mark

>

LDN makes some pain medications -- anything with opiates -- inffective

because LDN blocks your opioid receptors for a while after you take it. So

you would want to stop taking LDN for a while before any major surgery so

that it has a chance to be eliminated from your body. How long that takes

depends on the dose and on various personal factors. For me, it seems to

linger, so if it were me I think I'd quit nearly a week ahead. Dome people

don't need that long.

n

_______________________________

>

> To: BTVC-SCD

> Sent: Sun, May 23, 2010 5:41:45 PM

> Subject: Re: Re: Have to get colon fully removed in next few

> weeks

>

> I'm sorry to hear your news also. Sounds like the past couple or more

> years have been really hard for you. I hope you have a speedy recovery.

> I met someone when I was first dx'd who had the same operation you are

> having. He is doing very well and now advocates to other folks with

> crohn's disease. He talked a mile a minute, had great advice on

> everything. Really nice, nice man. He's doing great physically now.

> I hope this surgery helps get your life back and you feel 100% healthy

> again.

>

> Btw, I noticed you mentioned you started LDN a month ago. I started

> 3/11 and was just miserable until I found the right doseage, went

> through whatever die-off, etc. Are you going to stop that before the

> surgery? It may interfere with the pain medicine.

>

> Debbie 41 houston cd dx'd 3.02

>

>

> On Sun, May 23, 2010 at 8:53 AM, Mara Schiffren <alcibiades (AT) rcn (DOT) com>

> wrote:

>

>

>> Hey Mark,

>>

>> I'm also really sorry to hear your news. And that you have to go

>> through this right now.

>>

>> Please stay in touch and let us know how you are doing.

>>

>> Also, I agree with Jodi, if there is any way you can prepare some SCD

>> food for while

>> you are in the hospital, that might help your recovery time from

>> healing after your

>> surgery. Although I'm not really sure how it works in the case of

>> removing the colon -

>> what the schedule is for resumption of eating - I guess they take it

>> pretty slowly, given

>> the givens.

>>

>> Hope you do as well as possible,

>>

>> Regards,

>>

>> Mara

>>

>>

>>

>>

>>> Hi Mark,

>>>

>>> I don't have any advice for you, but I just wanted to say that I'm

>>> really sorry you have to go through this. I think it's great that you

>>> are planning on sticking with SCD after your surgery. I hope all goes

>>> well and you are feeling better soon.

>>>

>>> Take care,

>>>

>>> Amber

>>>

>>>

>>>>

>>>> Hi,

>>>> I was with my gastroenterologist yesterday and its decided i need

>>>> surgery. Ive been very unwell for over a year now and my weight has

>>>> dropped rapidly in the past couple of months im only 6 and half

>>>> stone. Ive tried scd and LDN for a month now but time is against me

>>>> and im too sick right now to give the SCD anymore time and hope

>>>> things get better, My situation is that no drugs have worked for me

>>>> in 2 years and ive been on prednisilone way too long and right now

>>>> there not even working to stop my diorreha and weight loss. Its too

>>>> dangerous to get such a big operation when my weights low as the

>>>> risks of complications are higher and i dont want that. My whole

>>>> colon and rectum are where my disease is so they will be fully

>>>> removed and il be on a stoma bag for life as it cant be re attached.

>>>> Its hard to accept but i have no choice or i will risk as my

>>>> gastroenterologist said possible death if i dont get it done. i will

>>>> continue scd as much as i can but after

> the operation il be in h!

>>

>>> ospital recovering for a few weeks id say and it will be impossible to

>>> eat scd while in there.

>>>>

>>>> My hope is that when i recover and gain my weight back i want to

>>>> restart SCD and stick to it for life so my chrons does not return in

>>>> my small bowel ever.

>>>>

>>>> I'd like to know what people think or have they had this happen to

>>>> them as i could do with some advise, Thanks Mark

>>>>

>>>

>>>

>>>

>>>

>>> ------------ --------- --------- ------

>>>

>>>

[Guest guest]

You can continue it - just not during the days before your surgery and rightafter, while you are on pain meds - as it can easily block the opiates in your pain medicine from being effective - not the kind of thing you want to have happen during surgery. ;-< ! This isn't a side effect - this is the sort of thingit was patented to do at a much higher dose - block out the high you get from opiates, in order to render them unenjoyable - so you can more easilyquit your addiction. MaraI was going to continue ldn. why what will it to do to interfere with pain medicine i thought there was no side effects with ldn?markTo: BTVC-SCD Sent: Sun, May 23, 2010 5:41:45 PMSubject: Re: Re: Have to get colon fully removed in next few weeksI'm sorry to hear your news also. Sounds like the past couple or more years have been really hard for you. I hope you have a speedy recovery. I met someone when I was first dx'd who had the same operation you are having. He is doing very well and now advocates to other folks with crohn's disease. He talked a mile a minute, had great advice on everything. Really nice, nice man. He's doing great physically now. I hope this surgery helps get your life back and you feel 100% healthy again. Btw, I noticed you mentioned you started LDN a month ago. I started 3/11 and was just miserable until I found the right doseage, went through whatever die-off, etc. Are you going to stop that before the surgery? It may interfere with the pain medicine. Debbie 41 houston cd dx'd 3.02On Sun, May 23, 2010 at 8:53 AM, Mara Schiffren <alcibiades (AT) rcn (DOT) com> wrote: Hey Mark,I'm also really sorry to hear your news. And that you have to go through this right now. Please stay in touch and let us know how you are doing. Also, I agree with Jodi, if there is any way you can prepare some SCD food for while you are in the hospital, that might help your recovery time from healing after your surgery. Although I'm not really sure how it works in the case of removing the colon - what the schedule is for resumption of eating - I guess they take it pretty slowly, giventhe givens. Hope you do as well as possible,Regards,Mara> Hi Mark,> > I don't have any advice for you, but I just wanted to say that I'm really sorry you have to go through this. I think it's great that you are planning on sticking with SCD after your surgery. I hope all goes well and you are feeling better soon.> > Take care,> > Amber> > >> >> Hi,>> I was with my gastroenterologist yesterday and its decided i need surgery. Ive been very unwell for over a year now and my weight has dropped rapidly in the past couple of months im only 6 and half stone. Ive tried scd and LDN for a month now but time is against me and im too sick right now to give the SCD anymore time and hope things get better, My situation is that no drugs have worked for me in 2 years and ive been on prednisilone way too long and right now there not even working to stop my diorreha and weight loss. Its too dangerous to get such a big operation when my weights low as the risks of complications are higher and i dont want that. My whole colon and rectum are where my disease is so they will be fully removed and il be on a stoma bag for life as it cant be re attached. Its hard to accept but i have no choice or i will risk as my gastroenterologist said possible death if i dont get it done. i will continue scd as much as i can but after the operation il be in h!> ospital recovering for a few weeks id say and it will be impossible to eat scd while in there. >> >> My hope is that when i recover and gain my weight back i want to restart SCD and stick to it for life so my chrons does not return in my small bowel ever.>> >> I'd like to know what people think or have they had this happen to them as i could do with some advise, Thanks Mark>> > > > > > ------------ --------- --------- ------> >

[Guest guest]

If you join the LDN group, crystal will send you a list of doctors who prescribe LDN - therewill probably be one near your area.http://health.groups.yahoo.com/group/lowdosenaltrexone/MaraOn May 23, 2010, at 3:38 PM, Regan wrote:How do you guys get prescriptions for LDN? My Dr. seemed pretty against giving me a script for it since he doesn't know much about its effects on Crohn's.........

[Guest guest]

i remember my doc listing that as a downside if you are in pain, pain meds won't

work if on ldn

eileen

> >>>

> >>> Hi,

> >>> I was with my gastroenterologist yesterday and its decided i need surgery.

Ive been very unwell for over a year now and my weight has dropped rapidly in

the past couple of months im only 6 and half stone. Ive tried scd and LDN for a

month now but time is against me and im too sick right now to give the SCD

anymore time and hope things get better, My situation is that no drugs have

worked for me in 2 years and ive been on prednisilone way too long and right now

there not even working to stop my diorreha and weight loss. Its too dangerous to

get such a big operation when my weights low as the risks of complications are

higher and i dont want that. My whole colon and rectum are where my disease is

so they will be fully removed and il be on a stoma bag for life as it cant be re

attached. Its hard to accept but i have no choice or i will risk as my

gastroenterologist said possible death if i dont get it done. i will continue

scd as much as i can but after

> the operation il be in h!

> >

> >> ospital recovering for a few weeks id say and it will be impossible to eat

scd while in there.

> >>>

> >>> My hope is that when i recover and gain my weight back i want to restart

SCD and stick to it for life so my chrons does not return in my small bowel

ever.

> >>>

> >>> I'd like to know what people think or have they had this happen to them as

i could do with some advise, Thanks Mark

> >>>

> >>

> >>

> >>

> >>

> >> ------------ --------- --------- ------

> >>

> >>

[Guest guest]

Thanks Mara. Here's the thing -- I don't want to leave my current Dr. He's very good and supportive of SCD -- he just doesn't buy into some of the alternative meds/supplements.

Do you think I could still get this script and keep him?

[Guest guest]

You could print out the Penn State trial and show it to him. And there might be more at the LDN database - not sure about thatone way or the other. Work with him a little bit more on it - if he still doesn't budge,you can go elsewhere for that script - but, if you want to keephim, you are under no obligation to tell him about it. But if itgives you good results - report back to him then. And see ifhe changes his mind. MaraThanks Mara. Here's the thing -- I don't want to leave my current Dr. He's very good and supportive of SCD -- he just doesn't buy into some of the alternative meds/supplements.Do you think I could still get this script and keep him?

[Guest guest]

Mark,

I am so sorry you must have such extensive surgery. Sometimes,

though, that is the answer. Decades ago my uncle had endless

troubles until he had this and he got along very well after that and

as far as I know had no limits on his activities.

I hope you are feeling much much better very soon.

[Guest guest]

Mark,

I'm genuinely sorry to hear that you need to have this permanently

life-changing surgery. I've been there, two years ago, for cancer surgery

-- had a complete hysterectomy, removal of ovaries and Fallopian tubes,

as well as removal of lymph nodes for tests to see if the cancer had

spread. I was scared witless because one of the first places cancer

spreads from the uterus is to the colon, and they'd told me that if it

had spread, they'd be taking my colon, too.

Please stay with SCD up to your surgery. The nutrition will help. I also

recommend a good multivitamin, as well as as much Vitamin C as you can

tolerate. It makes a major difference in how you heal.

You CAN stay on SCD while you are in the hospital. If you are not equal

to the amount of cooking necessary for this, find someone who is willing

to cook food, put it up for you, and bring it to the hospital for you.

You might ask your doctor what your food regimen will be after the

surgery. It may well start with clear liquids, progress to thick liquids,

then to soft foods, and finally to whatever your new normal foods will

be.

If that's the case, I can help you formulate SCD-legal menus for this

time, and you can have your foods made up in advance. I also recommend

having someone prepare food for you for at least six weeks after your

hospital stay, because you are not going to feel like cooking while you

recover.

I also strongly recommend that you prepare your home -- make sure you do

not have to climb stairs to reach your home, your bedroom, or your

bathroom. Make sure you have rails to hold onto getting on and off the

toilet, in and out of bed, and in and out of the shower.

My surgery was on a Monday; I did very well, and they released me on

Friday. It hadn't occured to me that I would need help getting out of

bed, so I'd only set up a superpole in the bathroom. We got home, and I

discovered I needed a pole and trapeze for the bed, and had to order them

second day air. Darned shipping cost almost as much as the pole! But when

we had that in place, I was able to get myself in and out of bed,

especially at night.

Before the pole came in, my poor husband lost a lot of sleep -- his

normal sleep cycle is about three hours. My bladder was on a two hour

cycle. " Harry. I have to go pee. " " Mmm. " " Harry.

I have to go pee. " " Mmm. " " Harry, if I don't go pee

NOW, you're going to be getting up and changing the bed. I have to go

NOW! "

Once the pole came in, I was able to get in and out of bed on my own,

which made for a big improvement in my outlook. <wry grin> Ask

Jodi: she also made the mistake of not having a set-up for getting in and

out of bed, and on and off a couch or chair after her gut

surgery.

I do wish to heaven that it was possible for you to give SCD a chance,

but if you can't, you can't. Please know that my thoughts are with

you.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

Hi Mark,

I'm so sorry to hear that you've been going through such a rough time. There is

not much I can add to what everyone else has already mentioned except I agree

with Marilyn that you should get your home set up before your surgery. A few

things you may want to also consider is getting a 12 inch wedge pillow to sleep

on so that you don't have to sleep flat and also some support bars for the

shower / bathtub (some of the suction ones are pretty good).

And remember to keep your spirits up! It'll help with the post surgery healing.

Smile and laugh. Watch comedy shows. Get some of your favorite books to read.

Take care,

Raj

>

> Hi,

> I was with my gastroenterologist yesterday and its decided i need surgery. Ive

been very unwell for over a year now and my weight has dropped rapidly in the

past couple of months im only 6 and half stone. Ive tried scd and LDN for a

month now but time is against me and im too sick right now to give the SCD

anymore time and hope things get better, My situation is that no drugs have

worked for me in 2 years and ive been on prednisilone way too long and right now

there not even working to stop my diorreha and weight loss. Its too dangerous to

get such a big operation when my weights low as the risks of complications are

higher and i dont want that. My whole colon and rectum are where my disease is

so they will be fully removed and il be on a stoma bag for life as it cant be re

attached. Its hard to accept but i have no choice or i will risk as my

gastroenterologist said possible death if i dont get it done. i will continue

scd as much as i can but after the operation il be in hospital recovering for a

few weeks id say and it will be impossible to eat scd while in there.

>

> My hope is that when i recover and gain my weight back i want to restart SCD

and stick to it for life so my chrons does not return in my small bowel ever.

>

> I'd like to know what people think or have they had this happen to them as i

could do with some advise, Thanks Mark

>

[Guest guest]

i remember my doc listing that as a downside if you are in pain, pain

meds won't work if on ldn

eileen

This is true but it's only opiates that interfere with LDN, because

they both compete for the same receptors. It doesn't usually affect

people unless they have surgery, in which case, as said before, you

do need to ditch the LDN for a few days to a week before surgery and

then pick it back up afterwards when you are no longer on

opiates. Of course if you are on opiates you would have to do

something else for pain and wean off them before beginning LDN.

[Guest guest]

,

I myself was in this situation and pain management was difficult.

But the pain meds eventually worked I just needed a higher dosage.

I just wish more docs understood LDN.

I was in this situation twice with ER stuff and once with ileocolic surgery.

The ER situations were challenging but I got through it due to me explaining to

my hubby that explained to the ER docs how LDN works.

With the surgery I should of stopped 3 weeks before hand (for me) I think for

the pain meds to kick in well. I think it kind of accumulated in my system.

But I am sensitive.

I am back on LDN and feel great! I would of been in a terrible full fledged

flare due to this water bacteria I caught. LDN has truly helped me fight it.

My first try on LDN I had to work through active Lyme disease co-infections- so

I had some pretty wonky symptoms as a result (which made me treat the Lyme

stuff) and made my thyroid go all wacky.

Now, I am on LDN again- staying on 3.5mg daily and I have none of those symptoms

including my hypothyroid only getting stronger which is lovely.. I adore LDN.

I think there is a little too much noise about LDN and pain management idea.

Having been through some pretty awful scenarios myself.

Jodi

>

> i remember my doc listing that as a downside if you are in pain, pain

> meds won't work if on ldn

> eileen

>

>

> This is true but it's only opiates that interfere with LDN, because

> they both compete for the same receptors. It doesn't usually affect

> people unless they have surgery, in which case, as said before, you

> do need to ditch the LDN for a few days to a week before surgery and

> then pick it back up afterwards when you are no longer on

> opiates. Of course if you are on opiates you would have to do

> something else for pain and wean off them before beginning LDN.

>

>

>

[Guest guest]

People should know this in case they are in an ER situation or some other type of surgery.  Anticipatory of needing pain meds.  LDN is nice--but I'd want the pain meds if needed and not everyone knows it may interfere.  Not everyone has a hubby to explain to an ER doctor about exactly why you are taking LDN.  First thing I get is 'that's a drug for alcoholics'.  Luckily my GP had worked with it before but not with crohn's disease so she was curious.  After I gave her some print-outs, she was ok with it or seemed to be.

 

Best thing for me is the lack of lucid dreaming.  I have had maybe two since starting LDN March 11.  I used to have the most lucid, vivid/good/horrible dreams nightly, sometimes more than one.  I'd wake up and go back to sleep.  It's really weird that it has solved that problem from the first night.  Now if I wake up, it's because of the cat--!

 

Debbie 41 cd

I think there is a little too much noise about LDN and pain management idea. Having been through some pretty awful scenarios myself.Jodi

>> i remember my doc listing that as a downside if you are in pain, pain

> meds won't work if on ldn> eileen> > > This is true but it's only opiates that interfere with LDN, because > they both compete for the same receptors. It doesn't usually affect

> people unless they have surgery, in which case, as said before, you > do need to ditch the LDN for a few days to a week before surgery and > then pick it back up afterwards when you are no longer on

> opiates. Of course if you are on opiates you would have to do > something else for pain and wean off them before beginning LDN.> > >

[Guest guest]

Ohh Debbie,

I am not disputing anything you say. Seriously getting 4 shots of toradol and

the effects it had on my bowel is not fun!

I just don't think it's a good enough reason to not put people of immune

compromised -that continue to suffer- on LDN.

I have been in an ER situation on LDN where my husband wasn't there and it was

difficult to say the least with a bowel obstruction none the less and the idiots

kept making me drink contrast even though I kept puking it up.

Jodi

> > >

> > > i remember my doc listing that as a downside if you are in pain, pain

> > > meds won't work if on ldn

> > > eileen

> > >

> > >

> > > This is true but it's only opiates that interfere with LDN, because

> > > they both compete for the same receptors. It doesn't usually affect

> > > people unless they have surgery, in which case, as said before, you

> > > do need to ditch the LDN for a few days to a week before surgery and

> > > then pick it back up afterwards when you are no longer on

> > > opiates. Of course if you are on opiates you would have to do

> > > something else for pain and wean off them before beginning LDN.

> > >

> > >

> > >

> >

> >

> >

>

[Guest guest]

At 11:36 AM 5/24/2010, you wrote:

A few things you may want to

also consider is getting a 12 inch wedge pillow to sleep on so that you

don't have to sleep flat and also some support bars for the shower /

bathtub (some of the suction ones are pretty good).

Raj,

I'm glad you mentioned that wedge pillow! I bought one just before I went

to the hospital, and it proved incredibly valuable!

The suction grab bars are OK... and may work for people who are less than

normal weight. I'm not, and I'd had experience with them letting go just

as I needed them.

http://tinyurl.com/2462t9k

should be a list of the Superpole items at the place I bought them from.

I got the Superpole with trapeze for next to my bed, and the Superpole

with superbar for next to the toilet and the shower. (I have a counter on

the other side of the toilet, so could use that to help me up.

Something else which is incredibly valuable is a small pillow to clasp

over your stomach when in the car. Put it between you and the seatbelt,

over your incision. (My incision was 24 " long....) Getting home from

the hospital was possibly the hardest car trip I've ever taken, because

New Orleans streets are very bouncy, and every jounce really, really

hurt.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

I think we are in agreement.  I must have sounded wrong in the last post.  I totally agree with you.  It's just that a lot of people aren't aware it may interfere with pain medicine.

 

I'm with you on the 'tossing of the drinks' when it comes to barium, preps and other weird things they make us drink or inject us with.  I don't think anything helps except maybe some phenergan before you start (and who ever gets that choice unless you're home before starting a prep?).

 

A lot of people seem to benefit from LDN and sometimes in the most unexpected ways.  I take it, just can't go over 2.25mg and I usually stay at 1.5mg. 

 

Debbie 41 cd

[Guest guest]

I myself was in this situation and pain management was difficult.

But the pain meds eventually worked I just needed a higher dosage.

I just wish more docs understood LDN.

Jodi

Yes, it would be wonderful if the docs understood LDN. That's very

interesting that you managed to counteract the LDN with more pain

meds. Maybe a certain amount was needed to cancel out the LDN and

then over that was helpful. I have heard of something that is not

really, or not exactly, or not so much opiate that can be used but I

forget what it was. But a nurse friend of mine told me once about a

patient in the hospital with horrendous pain, who was allergic to

morphine, and there was some other med they could use and he did

fine. Obviously the more knowledgeable about it we are, the better.

Just in case.

That's great that you are back on it and doing so well. I'm upping

mine this week, will do 3.0 tonight. It has helped with several things so far.

[Guest guest]

I saw that one of the LDN pharmacies (Skip's, I think) recommends stopping LDN

for a week before needing pain meds. There was a lady who stopped hers for less

then that, and her colonoscopy was a very miserable experience.

Holly

Crohn's

SCD 12/01/08

>

> LDN makes some pain medications -- anything with opiates -- inffective

> because LDN blocks your opioid receptors for a while after you take it. So

> you would want to stop taking LDN for a while before any major surgery so

> that it has a chance to be eliminated from your body. How long that takes

> depends on the dose and on various personal factors. For me, it seems to

> linger, so if it were me I think I'd quit nearly a week ahead. Dome people

> don't need that long.

>

> n

>

[Guest guest]

You could always make your own, that's what I do. I bought 50 mg pills from

alldaychemist.com in India, and mixed them with distilled water to make it " low

dose " . I haven't told my GI yet though, and don't think that I probably will.

Especially with negative articles like this floating around:

http://www.sciencebasedmedicine.org/?p=4997 . However, this abstract is what

keeps me hopeful that LDN will work out:

http://download.abstractcentral.com/DDW2010/myddw/646.html

Holly

Crohn's

SCD 12/01/08

>

> Thanks Mara.  Here's the thing -- I don't want to leave my current Dr.  He's

very good and supportive of SCD -- he just doesn't buy into some of the

alternative meds/supplements.

>

> Do you think I could still get this script and keep him?

>

>

[Guest guest]

I looked at the " negative " article and the premise is that, with only

preliminary studies, proponents of LDN should not advertise it as a treatment

for a multitude of conditions. However, preliminary studies indicate that is

could be helpful with IBD.

In the medical/scientific sense- the best conclusion is that we need more

studies to clarify this. Unfortunately, naltrexone is a cheap drug and there is

no profit to be made from these studies so there is not likely to be funding for

them. I believe there is a study at Penn State (?)in progress.

Those of us that are doing LDN are not waiting for further studies and are

deciding current evidence is enough.

The fallacy in this article is to write off LDN because of those who may be

stretching its claims beyond current research.

PJ

> >

> > Thanks Mara.  Here's the thing -- I don't want to leave my current Dr.  He's

very good and supportive of SCD -- he just doesn't buy into some of the

alternative meds/supplements.

> >

> > Do you think I could still get this script and keep him?

> >

> >

>