Chron's Flare....need suggestions

October 29, 2008

Hello,

I have been reading a lot of the posts for the last 3-4 weeks, and I'm amazed that LDN is used for so many different diseases. Four weeks ago I inquired on information of LDN as my 25 yr old daughter was diagnosed with Crohn's and the Dr was wanting her to go on Imuran, and also started her on Entocort after colonoscopy. She was told she had a moderate to severe case. I of course did lots of research and told my daughter about LDN, diet, and advised her to get a second opinion. She went to a new GI Dr at around 6 weeks into diagnosis and was still on the Entocort. At this time she felt she was at 70% better, still with some days having loose BM's 3-4 times/day, but no pain, gas, or bloating. She talked with the Dr about LDN and he was a little more open to it, but not ready to write her an RX. He decided to put her on Prednisone thinking the Entocort has not put her into remission, and included a new drug Pentasa. At least this guy was a little more open to other drugs, not like the last who just wanted her to go on Imuran and if that didn't work it was going to be other biologic drugs that are very expensive, need monitoring by blood work, and side effects.

The latest is my daughter is back to square one. She has watery, mucous D and has noticed blood. She is on Prednisone 40 mg as she was suppose to taper down ever week, but when she got bad this last weekend the Dr had her go back up from the 30 to 40mg. She has pain, bloating, and is fatigued. I live in CA, and she is in Washington State. She works full time, has a 4 yr old son, and is married. I did the best I could sending her a lot of information on diet, life style, and medications. The problem is I can only do so much, as she needs to be on board. I think the diagnosis is just too overwhelming and she wants a quick fix to feel better. She has changed some things in her diet such as eliminating milk, caffeine, and chocolate. The SCD diet was too much for her to even think about. She was doing better on the Entocort alone, than on the prednisone and Pentasa.

I'm frustrated for her and don't know where to have her start. She needs to get the D under control. The Dr is calling her tomorrow, and don't know if she should just go back on the Entocort while we work on getting the LDN. Now my daughter just thinks she should of stayed with the first DR and gone on the Imuran. I did have her call a compounding pharmacy to see if they mixed LDN, and it is available at this pharmacy. Problem is she did not know any Dr's in GI who prescribe it for Crohn's. This Pharmacist is just learning about it, and mainly only knows about it being used for pain. She told my daughter that you need to be in remission first, and it would take 4-5 months for the LDN to work.

Questions:

Would a liquid diet help her now, and what kind?

If she went back on the Entocort, could she start the LDN with it?

Where is the best place to start with diet so it wouldn't completely overwhelm her?

How do we find a Dr who would prescribe LDN in Washington?

What is monthly costs for LDN?

I so appreciate any input, and I'm thankful that I found this site. Problem is I can only pass on this info to my daughter, and she will have to do her part.....frustrating. I truly hope LDN can be something to help her as I'm afraid she is heading towards needing surgery.

Thanks,

Concerned Mom

October 29, 2008

On Wed, Oct 29, 2008 at 12:58 PM, Stelzriede <blondies@...> wrote:

Hello,

<snip>

Questions:

Would a liquid diet help her now, and what kind?Usually this would be an 'elemental' formula that would be perscribed by the doctor. She could do a modified liquid diet (the sort you do when prepping for a scope) on her own for a few days to see if things calm down (clear liquids and jello)...

If she went back on the Entocort, could she start the LDN with it?Entocort is just enterically coated prednisone - many people do better on it than straight pred. for a variety of reasons, my son did HORRIBLE on pred. but great on Entocort.

Where is the best place to start with diet so it wouldn't completely overwhelm her? Give her some space to figure that out on her own, she sounds pretty willing for what she's done already - there is not one clear diet for Crohn's patients beyond SCD, encourage her to keep a food diary to see if she can pinpoint any correlation between symptoms and consumption.

How do we find a Dr who would prescribe LDN in Washington?I would start by calling the compounding pharmacies in your area and ask if any compound the LDN in transdermal cream format, then ask if they would share with you the names of some physicians they know that prescribe that drug?

What is monthly costs for LDN?I think that depends a lot on format and the pharmacy but we pay $28.88 for a 30 day supply of the cream (before insurance reimbursement).

I so appreciate any input, and I'm thankful that I found this site. Problem is I can only pass on this info to my daughter, and she will have to do her part.....frustrating. I truly hope LDN can be something to help her as I'm afraid she is heading towards needing surgery.

My understanding is the other drugs will need to be used to get her into remission but the LDN will keep her there. For my boys who have mild Crohn's we used Pentasa then added on Entocort then started the LDN before the end of the 3 month Entocort round and finished the ramp up to full dose LDN to coincide with the end of the Entocort. My boys continue to take Pentasa. They are now doing great!

HTH, near LAX

October 29, 2008

Hello, and welcome to this forum,

so nice of you helping your daughter! :-)

I have Crohns, considered as moderate to severe, depending on if I get obstructions and cramps due to a narrowing in my small intestines. I started using LDN a year ago. The pain was gone the first morning after I started using LDN, always woke up by having pain, always remember that morning, woke up some hours later and...no pain!!! The bloating, the diarrhea, the cramps in my feet, legs, fingers and arms, all the obstructions that I had every month for years, all are gone. OK, my diarrhea was not severe, as your daughters. Has she tried loperamid comp?

Avoid sugar, yeast, dairy, soy and gluten.

Dr. Jaqueline McCandless, which often uses this forum, has developed a protocol where anyone with diarrhea and/or IBD diseases will be tested for yeast and clostridium, two problemmakers often active for us having Crohns and other IBD. If you want, I can send you dr.McCandless protocol.

I have collected questions and answers due to Crohns disease in this forum. You will find a lot of useful information in this document, it's exciting to read and you and your daughter will learn a lot from other having this disease, they have so much to learn other. Just tell me if you want a copy.

Ingrid

From: Stelzriede <blondies@...>low dose naltrexone Sent: Wednesday, October 29, 2008 8:58:34 PMSubject: [low dose naltrexone] Chron's Flare....need suggestions

Hello,

I have been reading a lot of the posts for the last 3-4 weeks, and I'm amazed that LDN is used for so many different diseases. Four weeks ago I inquired on information of LDN as my 25 yr old daughter was diagnosed with Crohn's and the Dr was wanting her to go on Imuran, and also started her on Entocort after colonoscopy. She was told she had a moderate to severe case. I of course did lots of research and told my daughter about LDN, diet, and advised her to get a second opinion. She went to a new GI Dr at around 6 weeks into diagnosis and was still on the Entocort. At this time she felt she was at 70% better, still with some days having loose BM's 3-4 times/day, but no pain, gas, or bloating. She talked with the Dr about LDN and he was a little more open to it, but not ready to write her an RX. He decided to put her on Prednisone thinking the Entocort has not put her into remission, and included a new drug Pentasa. At

least this guy was a little more open to other drugs, not like the last who just wanted her to go on Imuran and if that didn't work it was going to be other biologic drugs that are very expensive, need monitoring by blood work, and side effects.

The latest is my daughter is back to square one. She has watery, mucous D and has noticed blood. She is on Prednisone 40 mg as she was suppose to taper down ever week, but when she got bad this last weekend the Dr had her go back up from the 30 to 40mg. She has pain, bloating, and is fatigued. I live in CA, and she is in Washington State. She works full time, has a 4 yr old son, and is married. I did the best I could sending her a lot of information on diet, life style, and medications. The problem is I can only do so much, as she needs to be on board. I think the diagnosis is just too overwhelming and she wants a quick fix to feel better. She has changed some things in her diet such as eliminating milk, caffeine, and chocolate. The SCD diet was too much for her to even think about. She was doing better on the Entocort alone, than on the prednisone and Pentasa.

I'm frustrated for her and don't know where to have her start. She needs to get the D under control. The Dr is calling her tomorrow, and don't know if she should just go back on the Entocort while we work on getting the LDN. Now my daughter just thinks she should of stayed with the first DR and gone on the Imuran. I did have her call a compounding pharmacy to see if they mixed LDN, and it is available at this pharmacy. Problem is she did not know any Dr's in GI who prescribe it for Crohn's. This Pharmacist is just learning about it, and mainly only knows about it being used for pain. She told my daughter that you need to be in remission first, and it would take 4-5 months for the LDN to work.

Questions:

Would a liquid diet help her now, and what kind?

If she went back on the Entocort, could she start the LDN with it?

Where is the best place to start with diet so it wouldn't completely overwhelm her?

How do we find a Dr who would prescribe LDN in Washington?

What is monthly costs for LDN?

I so appreciate any input, and I'm thankful that I found this site. Problem is I can only pass on this info to my daughter, and she will have to do her part.....frustrating. I truly hope LDN can be something to help her as I'm afraid she is heading towards needing surgery.

Thanks,

Concerned Mom

October 30, 2008

Ingrid, Could you send me the protocol that you are speaking of . I have the bad D and would like to try it. Thank you Becky

October 30, 2008

Hi Ingrid,

Can you also send me a copy of the protocol and document that you

accmulated? Thanks.

October 30, 2008

Hi Ingrid,

I would love a copy of past questions and answers on Crohn's. Thanks so much for responding to my question. Hopefully I will have some input to add to this forum as my daughter goes through the trials and errors. I have mentioned the LDN several times and forwarded infromation, but I think she is skeptical to ask her Dr. Hopefully she will give this a try.

[low dose naltrexone] Chron's Flare....need suggestions

Hello,

I have been reading a lot of the posts for the last 3-4 weeks, and I'm amazed that LDN is used for so many different diseases. Four weeks ago I inquired on information of LDN as my 25 yr old daughter was diagnosed with Crohn's and the Dr was wanting her to go on Imuran, and also started her on Entocort after colonoscopy. She was told she had a moderate to severe case. I of course did lots of research and told my daughter about LDN, diet, and advised her to get a second opinion. She went to a new GI Dr at around 6 weeks into diagnosis and was still on the Entocort. At this time she felt she was at 70% better, still with some days having loose BM's 3-4 times/day, but no pain, gas, or bloating. She talked with the Dr about LDN and he was a little more open to it, but not ready to write her an RX. He decided to put her on Prednisone thinking the Entocort has not put her into remission, and included a new drug Pentasa. At least this guy was a little more open to other drugs, not like the last who just wanted her to go on Imuran and if that didn't work it was going to be other biologic drugs that are very expensive, need monitoring by blood work, and side effects.

The latest is my daughter is back to square one. She has watery, mucous D and has noticed blood. She is on Prednisone 40 mg as she was suppose to taper down ever week, but when she got bad this last weekend the Dr had her go back up from the 30 to 40mg. She has pain, bloating, and is fatigued. I live in CA, and she is in Washington State. She works full time, has a 4 yr old son, and is married. I did the best I could sending her a lot of information on diet, life style, and medications. The problem is I can only do so much, as she needs to be on board. I think the diagnosis is just too overwhelming and she wants a quick fix to feel better. She has changed some things in her diet such as eliminating milk, caffeine, and chocolate. The SCD diet was too much for her to even think about. She was doing better on the Entocort alone, than on the prednisone and Pentasa.

I'm frustrated for her and don't know where to have her start. She needs to get the D under control. The Dr is calling her tomorrow, and don't know if she should just go back on the Entocort while we work on getting the LDN. Now my daughter just thinks she should of stayed with the first DR and gone on the Imuran. I did have her call a compounding pharmacy to see if they mixed LDN, and it is available at this pharmacy. Problem is she did not know any Dr's in GI who prescribe it for Crohn's. This Pharmacist is just learning about it, and mainly only knows about it being used for pain. She told my daughter that you need to be in remission first, and it would take 4-5 months for the LDN to work.

Questions:

Would a liquid diet help her now, and what kind?

If she went back on the Entocort, could she start the LDN with it?

Where is the best place to start with diet so it wouldn't completely overwhelm her?

How do we find a Dr who would prescribe LDN in Washington?

What is monthly costs for LDN?

I so appreciate any input, and I'm thankful that I found this site. Problem is I can only pass on this info to my daughter, and she will have to do her part.....frustrating. I truly hope LDN can be something to help her as I'm afraid she is heading towards needing surgery.

Thanks,

Concerned Mom

October 31, 2008

IS THERE A CHATROOM ANYTHING LIKE THIS ONE FOR CROHN'S? THERE IS A CROHN'S DISEASE SUPPORT GROUP HERE IN ATLANTA BUT THEY HAVE NO INFORMATION ABOUT ANYTHING OVER THE INTERNET.

From: Stelzriede <blondies@...>low dose naltrexone Sent: Thursday, October 30, 2008 6:05:55 PMSubject: Re: [low dose naltrexone] Chron's Flare....need suggestions

Hi Ingrid,

I would love a copy of past questions and answers on Crohn's. Thanks so much for responding to my question. Hopefully I will have some input to add to this forum as my daughter goes through the trials and errors. I have mentioned the LDN several times and forwarded infromation, but I think she is skeptical to ask her Dr. Hopefully she will give this a try.

[low dose naltrexone] Chron's Flare....need suggestions

Hello,

I have been reading a lot of the posts for the last 3-4 weeks, and I'm amazed that LDN is used for so many different diseases. Four weeks ago I inquired on information of LDN as my 25 yr old daughter was diagnosed with Crohn's and the Dr was wanting her to go on Imuran, and also started her on Entocort after colonoscopy. She was told she had a moderate to severe case. I of course did lots of research and told my daughter about LDN, diet, and advised her to get a second opinion. She went to a new GI Dr at around 6 weeks into diagnosis and was still on the Entocort. At this time she felt she was at 70% better, still with some days having loose BM's 3-4 times/day, but no pain, gas, or bloating. She talked with the Dr about LDN and he was a little more open to it, but not ready to write her an RX. He decided to put her on Prednisone thinking the Entocort has not put her into remission, and included a new drug Pentasa. At

least this guy was a little more open to other drugs, not like the last who just wanted her to go on Imuran and if that didn't work it was going to be other biologic drugs that are very expensive, need monitoring by blood work, and side effects.

The latest is my daughter is back to square one. She has watery, mucous D and has noticed blood. She is on Prednisone 40 mg as she was suppose to taper down ever week, but when she got bad this last weekend the Dr had her go back up from the 30 to 40mg. She has pain, bloating, and is fatigued. I live in CA, and she is in Washington State. She works full time, has a 4 yr old son, and is married. I did the best I could sending her a lot of information on diet, life style, and medications. The problem is I can only do so much, as she needs to be on board. I think the diagnosis is just too overwhelming and she wants a quick fix to feel better. She has changed some things in her diet such as eliminating milk, caffeine, and chocolate. The SCD diet was too much for her to even think about. She was doing better on the Entocort alone, than on the prednisone and Pentasa.

I'm frustrated for her and don't know where to have her start. She needs to get the D under control. The Dr is calling her tomorrow, and don't know if she should just go back on the Entocort while we work on getting the LDN. Now my daughter just thinks she should of stayed with the first DR and gone on the Imuran. I did have her call a compounding pharmacy to see if they mixed LDN, and it is available at this pharmacy. Problem is she did not know any Dr's in GI who prescribe it for Crohn's. This Pharmacist is just learning about it, and mainly only knows about it being used for pain. She told my daughter that you need to be in remission first, and it would take 4-5 months for the LDN to work.

Questions:

Would a liquid diet help her now, and what kind?

If she went back on the Entocort, could she start the LDN with it?

Where is the best place to start with diet so it wouldn't completely overwhelm her?

How do we find a Dr who would prescribe LDN in Washington?

What is monthly costs for LDN?

I so appreciate any input, and I'm thankful that I found this site. Problem is I can only pass on this info to my daughter, and she will have to do her part.....frustratin g. I truly hope LDN can be something to help her as I'm afraid she is heading towards needing surgery.

Thanks,

Concerned Mom

October 31, 2008

Ingrid, could you send me the files by McCandless? Thanksyou! Judy

spinedoc55@...

>

> Hello, and welcome to this forum,

> so nice of you helping your daughter! :-)

> I have Crohns, considered as moderate to severe, depending on if I

get obstructions and cramps due to a narrowing in my small intestines.

I started using LDN a year ago. The pain was gone the first morning

after I started using LDN, always woke up by having pain, always

remember that morning, woke up some hours later and...no pain!!! The

bloating, the diarrhea, the cramps in my feet, legs, fingers and arms,

all the obstructions that I had every month for years, all are

gone. OK, my diarrhea was not severe, as your daughters. Has she tried

loperamid comp?

> Avoid sugar, yeast, dairy, soy and gluten.

>

> Dr. Jaqueline McCandless, which often uses this forum, has developed

a protocol where anyone with diarrhea and/or IBD diseases will be

tested for yeast and clostridium, two problemmakers often active for

us having Crohns and other IBD. If you want, I can send you

dr.McCandless protocol.

>

> I have collected questions and answers due to Crohns disease in this

forum. You will find a lot of useful information in this document,

it's exciting to read and you and your daughter will learn a lot from

other having this disease, they have so much to learn other. Just tell

me if you want a copy.

> Ingrid

>

> ________________________________

> From: Stelzriede <blondies@...>

> low dose naltrexone

> Sent: Wednesday, October 29, 2008 8:58:34 PM

> Subject: [low dose naltrexone] Chron's Flare....need suggestions

>

> Hello,

>

> I have been reading a lot of the posts for the last 3-4 weeks, and

I'm amazed that LDN is used for so many different diseases. Four weeks

ago I inquired on information of LDN as my 25 yr old daughter was

diagnosed with Crohn's and the Dr was wanting her to go on Imuran, and

also started her on Entocort after colonoscopy. She was told she had a

moderate to severe case. I of course did lots of research and told my

daughter about LDN, diet, and advised her to get a second opinion. She

went to a new GI Dr at around 6 weeks into diagnosis and was still on

the Entocort. At this time she felt she was at 70% better, still with

some days having loose BM's 3-4 times/day, but no pain, gas, or

bloating. She talked with the Dr about LDN and he was a little more

open to it, but not ready to write her an RX. He decided to put her on

Prednisone thinking the Entocort has not put her into remission, and

included a new drug Pentasa. At least this guy was a little more

> open to other drugs, not like the last who just wanted her to go on

Imuran and if that didn't work it was going to be other biologic drugs

that are very expensive, need monitoring by blood work, and side effects.

>

> The latest is my daughter is back to square one. She has watery,

mucous D and has noticed blood. She is on Prednisone 40 mg as she was

suppose to taper down ever week, but when she got bad this last

weekend the Dr had her go back up from the 30 to 40mg. She has pain,

bloating, and is fatigued. I live in CA, and she is in Washington

State. She works full time, has a 4 yr old son, and is married. I did

the best I could sending her a lot of information on diet, life style,

and medications. The problem is I can only do so much, as she needs to

be on board. I think the diagnosis is just too overwhelming and she

wants a quick fix to feel better. She has changed some things in her

diet such as eliminating milk, caffeine, and chocolate. The SCD diet

was too much for her to even think about. She was doing better on the

Entocort alone, than on the prednisone and Pentasa.

>

> I'm frustrated for her and don't know where to have her start. She

needs to get the D under control. The Dr is calling her tomorrow, and

don't know if she should just go back on the Entocort while we work on

getting the LDN. Now my daughter just thinks she should of stayed with

the first DR and gone on the Imuran. I did have her call a compounding

pharmacy to see if they mixed LDN, and it is available at this

pharmacy. Problem is she did not know any Dr's in GI who prescribe it

for Crohn's. This Pharmacist is just learning about it, and mainly

only knows about it being used for pain. She told my daughter that you

need to be in remission first, and it would take 4-5 months for the

LDN to work.

>

> Questions:

>

> Would a liquid diet help her now, and what kind?

>

> If she went back on the Entocort, could she start the LDN with it?

>

> Where is the best place to start with diet so it wouldn't completely

overwhelm her?

>

> How do we find a Dr who would prescribe LDN in Washington?

>

> What is monthly costs for LDN?

>

> I so appreciate any input, and I'm thankful that I found this site.

Problem is I can only pass on this info to my daughter, and she will

have to do her part......frustrating. I truly hope LDN can be

something to help her as I'm afraid she is heading towards needing

surgery.

>

> Thanks,

>

> Concerned Mom

>

November 1, 2008

search?query=crohn%27s

Maarit

>

> IS THERE A CHATROOM ANYTHING LIKE THIS ONE FOR CROHN'S? THERE IS A

CROHN'S DISEASE SUPPORT GROUP HERE IN ATLANTA BUT THEY HAVE NO

INFORMATION ABOUT ANYTHING OVER THE INTERNET.

>

> ________________________________

> From: Stelzriede <blondies@...>

> low dose naltrexone

> Sent: Thursday, October 30, 2008 6:05:55 PM

> Subject: Re: [low dose naltrexone] Chron's Flare....need suggestions

>

> Hi Ingrid,

>

> I would love a copy of past questions and answers on Crohn's. Thanks

so much for responding to my question. Hopefully I will have some

input to add to this forum as my daughter goes through the trials and

errors. I have mentioned the LDN several times and forwarded

infromation, but I think she is skeptical to ask her Dr. Hopefully she

will give this a try.

>

> [low dose naltrexone] Chron's Flare....need suggestions

>

> Hello,

>

> I have been reading a lot of the posts for the last 3-4 weeks, and

I'm amazed that LDN is used for so many different diseases.. Four

weeks ago I inquired on information of LDN as my 25 yr old daughter

was diagnosed with Crohn's and the Dr was wanting her to go on Imuran,

and also started her on Entocort after colonoscopy. She was told she

had a moderate to severe case. I of course did lots of research and

told my daughter about LDN, diet, and advised her to get a second

opinion. She went to a new GI Dr at around 6 weeks into diagnosis and

was still on the Entocort. At this time she felt she was at 70%

better, still with some days having loose BM's 3-4 times/day, but no

pain, gas, or bloating. She talked with the Dr about LDN and he was a

little more open to it, but not ready to write her an RX. He decided

to put her on Prednisone thinking the Entocort has not put her into

remission, and included a new drug Pentasa. At least this guy was a

little more