Re: [SPAM] Chron's Flare....need suggestions

[Guest guest]

i have found that most of us with crohn's disease have problems digesting grainy meats - beef, pork, etc., etc. my doctor told me way back in 1991, when i was first diagnosed, to eat chicken, turkey and fish - also, very little dairy foods. he also to stick to a low residue diet - little or nothing that clings to the intestine!! i have found throughout the 17 years with this disease that this is still very good advice to follow - especially those of us who also have strictures in the ileum. for myself, this is where most of my pain comes from.

marshiris@...

crohn's disease - 17 years

LDN CREAM - 16 MOS.

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[Guest guest]

SORRY - i forgot to mention that no fiber while in flare - to be added very gradually, after flare is over!! fiber makes for formed, solid stools, and these are very hard to pass thru the strictures, and can cause excruciating pain, and maybe even leave scar tissue!! sometimes, we have to go to the ER, the pain can be so harsh, we're frightened about what can be going on!! once this bulk is eliminated/passed, the pain subsides too!!

marshiris@...

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[Guest guest]

Hi ,

If you would like to email me privately, I could give you my daughter's email or phone.

She also is in Washington State and she has been through exactly what your daughter is - especially the anger and resistance to self-help measures. LDN worked wonders for her.

Crystal has a list of prescribing docs - my daughter's is prescribed by her doc here in Samoa - it's faxed to Skip's pharmacy and they FedEx it to her. Even when she is here we get it the same way.

She also was on Pentasa and it did nothing for her, the Prednisone just made her feel like an energizer bunny, but not in a good way.

We put her on Absorb Plus and plain broths to help calm her flare while we were waiting for the LDN - it was the LDN which brought her out of the flare and into remission. As she became more pain free, she began to be able to tell what foods affected her and started being good about her diet.

The biggest culprits are usually gluten - such as in wheat and corn, high fructose corn syrup, and sugars. Homemade chicken broths with very soft carrots are very healing, as is plain gelatin flavored with a little juice. SCD can seem overwhelming, but I usually don't even bother making muffins and breads - I just do without or make crepes. I simply eat whole foods prepared simply. She also found out that ground beef, and possibly beef in general, is a problem.

I feel for your daughter and urge you to try to get her on LDN ASAP.

Regards,

-- [sPAM] [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

[Guest guest]

Hi marshiris,

I totally agree with you :-)... Ingrid

From: "marshiris@..." <marshiris@...>low dose naltrexone Sent: Friday, October 31, 2008 12:13:46 AMSubject: Re: [sPAM] [low dose naltrexone] Chron's Flare....need suggestions

i have found that most of us with crohn's disease have problems digesting grainy meats - beef, pork, etc., etc. my doctor told me way back in 1991, when i was first diagnosed, to eat chicken, turkey and fish - also, very little dairy foods. he also to stick to a low residue diet - little or nothing that clings to the intestine!! i have found throughout the 17 years with this disease that this is still very good advice to follow - especially those of us who also have strictures in the ileum. for myself, this is where most of my pain comes from.

marshiris@...

crohn's disease - 17 years

LDN CREAM - 16 MOS.

Plan your next getaway with AOL Travel. Check out Today's Hot 5 Travel Deals!

[Guest guest]

Hello Everyone,

I just wanted to give thanks to those who responded to my email. I will pass all this information to my daughter, and hope she will give LDN a try and that we can find a doctor to prescribe. Thanks for the great information. I will keep you posted.

[sPAM] [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

[Guest guest]

,

sometimes it's hard to find a doctor, if her won't prescribe, please ask Crystal in here for a list on doctors around your daughters area!

(Or ask her to ask at her Pharmacy if other patients are getting LDN from doctors near by)... Good luck, tell your daughter that LDN is REALLY worth a try!Ingrid

From: Stelzriede <blondies@...>low dose naltrexone Sent: Friday, October 31, 2008 1:35:04 AMSubject: Re: [sPAM] [low dose naltrexone] Chron's Flare....need suggestions

Hello Everyone,

I just wanted to give thanks to those who responded to my email. I will pass all this information to my daughter, and hope she will give LDN a try and that we can find a doctor to prescribe. Thanks for the great information. I will keep you posted.

[sPAM] [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