Re: Need help with few questions

[Guest guest]

Hi Dene’, Welcome to the group. Not knowing what foods

your daughter can tolerate, here are a few high-carb suggestions for gaining

weight that worked for me (I got down to 87 pounds – if I turned sideways

you could hardly see me lol!): yogurt made with half & half & /or cream

(no additives), hard cheeses, butternut squash, de-starched white navy beans

(probably want to avoid if in a flare as it is considered an advanced food),

nut butters (especially pecan as it is high in fat), coconut oil, butter on

everything. That’s all I can remember. I’m sure others will chime

in.

Have you looked into Low Dose Naltrexone? www.LowDoseNaltrexone.org is the

website. There are clinical trials taking place at Penn State University for

LDN & Crohn’s. I have Crohn’s and have been on LDN cream at 3

mg. for 3 1/2 months now. This is the best I have ever felt. I highly recommend

it. Since LDN is an immune modulator and Remicade is an immune suppressant, Remicade

is contraindicated for LDN. In other words, your daughter would have to stop

the Remicade before starting LDN.

From what I understand from reading this list is the area around

the anus is the last area to heal. At least that’s my understanding (don’t

quote me on that!). Others who have had to deal with those manifestations will

perhaps chime in as I don’t have that experience.

Carol

CD 21 yrs SCD 5 yrs B12 shots & LDN cream

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of nikelubb

I am new to this group, but would like to ask

some advice from you.

My daughter has Crohn's Colitis and has had it for about 7 years. She has tried

every medicine out there from Asacol and Immuran(it gave her pancreatitis and

she was in the hospital for 10 days and put on a feeding tube)and now to

Remicade. We started the SCD about 7 1/2 months ago when she was put in the

hospital for an abscess surgery. She seems to be feeling better on this SCD,

but is still having alot of bleeding and inflammation around the rectum area,

therefore uncomfortable pain. Any suggestions on what to do for that?

Also we just went in to see her doctor and she had lost 3 more pounds -

she is down to 95 pounds (which scares my husband and I beacuse she has already

lost 30 this past 2 years when she has been so sick)

Any ideas on how to gain back weight?

I have read about so many people healing on this SCD that I just know it can

work for my daughter too, but we are pretty discouraged right now. Any help or

advice anyone can offer would be great -

thanks for letting me pour my heart out to you - it is so hard to watch her

suffer with this disease. I am thankful for groups like this that are willing

to help us out,

Dene'

[Guest guest]

Hi Dene’, Welcome to the group. Not knowing what foods

your daughter can tolerate, here are a few high-carb suggestions for gaining

weight that worked for me (I got down to 87 pounds – if I turned sideways

you could hardly see me lol!): yogurt made with half & half & /or cream

(no additives), hard cheeses, butternut squash, de-starched white navy beans

(probably want to avoid if in a flare as it is considered an advanced food),

nut butters (especially pecan as it is high in fat), coconut oil, butter on

everything. That’s all I can remember. I’m sure others will chime

in.

Have you looked into Low Dose Naltrexone? www.LowDoseNaltrexone.org is the

website. There are clinical trials taking place at Penn State University for

LDN & Crohn’s. I have Crohn’s and have been on LDN cream at 3

mg. for 3 1/2 months now. This is the best I have ever felt. I highly recommend

it. Since LDN is an immune modulator and Remicade is an immune suppressant, Remicade

is contraindicated for LDN. In other words, your daughter would have to stop

the Remicade before starting LDN.

From what I understand from reading this list is the area around

the anus is the last area to heal. At least that’s my understanding (don’t

quote me on that!). Others who have had to deal with those manifestations will

perhaps chime in as I don’t have that experience.

Carol

CD 21 yrs SCD 5 yrs B12 shots & LDN cream

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of nikelubb

I am new to this group, but would like to ask

some advice from you.

My daughter has Crohn's Colitis and has had it for about 7 years. She has tried

every medicine out there from Asacol and Immuran(it gave her pancreatitis and

she was in the hospital for 10 days and put on a feeding tube)and now to

Remicade. We started the SCD about 7 1/2 months ago when she was put in the

hospital for an abscess surgery. She seems to be feeling better on this SCD,

but is still having alot of bleeding and inflammation around the rectum area,

therefore uncomfortable pain. Any suggestions on what to do for that?

Also we just went in to see her doctor and she had lost 3 more pounds -

she is down to 95 pounds (which scares my husband and I beacuse she has already

lost 30 this past 2 years when she has been so sick)

Any ideas on how to gain back weight?

I have read about so many people healing on this SCD that I just know it can

work for my daughter too, but we are pretty discouraged right now. Any help or

advice anyone can offer would be great -

thanks for letting me pour my heart out to you - it is so hard to watch her

suffer with this disease. I am thankful for groups like this that are willing

to help us out,

Dene'

[Guest guest]

Hi Dene’, Welcome to the group. Not knowing what foods

your daughter can tolerate, here are a few high-carb suggestions for gaining

weight that worked for me (I got down to 87 pounds – if I turned sideways

you could hardly see me lol!): yogurt made with half & half & /or cream

(no additives), hard cheeses, butternut squash, de-starched white navy beans

(probably want to avoid if in a flare as it is considered an advanced food),

nut butters (especially pecan as it is high in fat), coconut oil, butter on

everything. That’s all I can remember. I’m sure others will chime

in.

Have you looked into Low Dose Naltrexone? www.LowDoseNaltrexone.org is the

website. There are clinical trials taking place at Penn State University for

LDN & Crohn’s. I have Crohn’s and have been on LDN cream at 3

mg. for 3 1/2 months now. This is the best I have ever felt. I highly recommend

it. Since LDN is an immune modulator and Remicade is an immune suppressant, Remicade

is contraindicated for LDN. In other words, your daughter would have to stop

the Remicade before starting LDN.

From what I understand from reading this list is the area around

the anus is the last area to heal. At least that’s my understanding (don’t

quote me on that!). Others who have had to deal with those manifestations will

perhaps chime in as I don’t have that experience.

Carol

CD 21 yrs SCD 5 yrs B12 shots & LDN cream

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of nikelubb

I am new to this group, but would like to ask

some advice from you.

My daughter has Crohn's Colitis and has had it for about 7 years. She has tried

every medicine out there from Asacol and Immuran(it gave her pancreatitis and

she was in the hospital for 10 days and put on a feeding tube)and now to

Remicade. We started the SCD about 7 1/2 months ago when she was put in the

hospital for an abscess surgery. She seems to be feeling better on this SCD,

but is still having alot of bleeding and inflammation around the rectum area,

therefore uncomfortable pain. Any suggestions on what to do for that?

Also we just went in to see her doctor and she had lost 3 more pounds -

she is down to 95 pounds (which scares my husband and I beacuse she has already

lost 30 this past 2 years when she has been so sick)

Any ideas on how to gain back weight?

I have read about so many people healing on this SCD that I just know it can

work for my daughter too, but we are pretty discouraged right now. Any help or

advice anyone can offer would be great -

thanks for letting me pour my heart out to you - it is so hard to watch her

suffer with this disease. I am thankful for groups like this that are willing

to help us out,

Dene'

[Guest guest]

>

She seems to be feeling better on this SCD, but is still having alot of

bleeding and inflammation around the rectum area, therefore

uncomfortable pain. Any suggestions on what to do for that?

Hi Dene' -

I have been on SCD for more than 2 years and after getting IV

antibiotics earlier this year, have been struggling with occasional

bleeding that appears to be located very, very near the rectum, although

my stools are still perfect. The only thing that seems to get it to stop

is Canasa suppositories. Have you tried those or Rowasa enemas? They get

the anti-inflammatory medicine right to where it's needed.

Also, for extra calories - cheese on everything, butter on everything,

and ice cream made from whole cream. Yum! :-) Prime rib?

Kathy

UC since 12/05

SCD since 7/07

sulfasalazine 1000 mg/day

Canasa suppositories occasionally