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Peptide 1.5 cal formula diet not working so far.

M

Mikey989

Location
Upstate New York
Recently (three days ago) I started a formula diet of peptide 1.5 cal to reach remission. I'm so anxious because lately I've only felt worse since starting it. I have constant stomach pain and nausea. I took this as a alternative to prednisone because all of prednisone's nasty side effects . What do I do I'm kind of at a loss. I'm in a lot of pain please help is prednisone that bad because I'm leaning towards it now.
 
Clash

Clash

I think it can actually take longer than that for the formula to really start working. It would be a good idea to let the GI know you are feeling worse symptoms and describe them. It could take a week or so for things to even start turning around. It really depends on disease activity level and so on. I k ow early on studies showed that it was a more efficacious in pediatric patients but there may be other studies that have contradicted that. Hope you feel better soon.
 
M

Mikey989

Location
Upstate New York
Clash-
Thanks for the reply. Should I just try prednisone I know people have said it's possible to not have that bad of side effects due to different people reacting differently.
 
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Clash

Clash

I'm not certain what side effects you are trying to avoid but yes not everyone gets all the sides effects. My son got moon face, acne, and gained weight. Butthe worst to him was the jittery restless feeling that kept him up.

It still may take time for the steroid, maybe a week maybe shorter. It just varies from patient to patient. Pred had no effect on my son's disease,we were trying to use it to tide over til we could get to a ped GI and start remicade. The GI said it seemed he got all the side effects with none of the benefit. I would discuss it with your GI, it works quickly for most.
 
my little penguin

my little penguin

Moderator
Staff member
EEN or pred just help introduce remission you would still need maintenance meds which tend to be started at the same time so that they can take over when your off EEN or pred
My kiddo has done both
EEN first to avoid pred -8 weeks of peptamen jr no food
And 3.5 months of pred later
Both take time
Much prefer the EEN
Just be patient
The GI tract takes a long time to heal itself
 
SupportiveMom

SupportiveMom

When my teen started on prednisone her GP quickly wrote a script for medicated acne medicine. She uses benzocline I believe. It doesn't stop all the acne but it significantly reduces it. A friend of hers (17) started growing a beard to hide the moon face a bit. With the facial hair you can sculpt it a bit to elongate the face a bit. Anyways beards are back in style and are very 'hipster' so that the line he uses. Spin it in the most positive way you can.

Sometimes no matter what you do you can't skip prednisone so try to make the most of it.
 
M

Mikey989

Location
Upstate New York
They said for maintenance i'll try methotrexate and if that doesn't work Ill do remicade but they said that I won't start that till like the last couple of weeks of my formula.
 
Optimistic

Optimistic

Mikey - my 14 year old son felt very weak the first two weeks on formula and we almost gave up. I'm sending support that you can try it another few weeks. After two weeks he started to adjust, have energy, and feel much better.
 
2

24601

Location
London, UK
How are you doing with it now? I agree with Optimistic that it can take some time for your body to adjust to the formula. If you have nausea, try drinking it over a longer period of time - if possible, though if you're sipping all day as some do you may be at the limit of low rate of intake. As your body gets used to the formula you can usually increase the rate of intake without experiencing nausea or diarrhea. I believe diarrhea can be a common side effect when you start - oh the irony!!!

Good luck with it. I think it is a really great decision to try this treatment. Moon face and acne definitely hit my self-esteem hard as a 17 year old diagnosed with Crohn's so I can relate strongly to wanting to avoid those side effects and tell you that even though this may be hard, I think it's worth it! And that's speaking as someone who has done both.

Hopefully you will start to feel the benefit soon in terms of a reduction of symptoms and when your doctor next does blood tests or fecal calprotectin you should see the improvement in those numbers and that provides great motivation!
 
M

Mikey989

Location
Upstate New York
Thanks and so far I'm definitely getting diarrhea, I'm only having 4 a day with no food working up to 7 a day eventually and I'm starting to tolerate it the first two days were the worst
 
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