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New Here!

Hello everyone!

I wasn't sure if you were supposed to introduce yourself first here or not, so admin can delete if this isn't the place.

Just thought I'd join since I don't know too many people in my situation, but I know there are definitely more.

I'm 21 tears old and I've had Crohn's since I was about 6-officially diagnosed at 17. I'm not sure exactly how the environment is here toward basically leaving physicians out of treatment, but I'll share anyway. I've been on Prednisone, Amytriptiline, Remicade, you name it. All either doing absolutely nothing for me, or making things worse.

A friend told me about how his dad did a lot of juicing and cut out GM food to cure his stage 4 colon cancer, and suggested I try. I started feeling the effects immediately. I can't even digest a piece of iceberg lettuce, but juice is MUCH easier to digest since there is only soluble fiber, and the rest proteins and phytonutrients. I am currently flaring but only because I was stupid and took my health for granted because I felt well again. I'm getting back into juicing, and will hopefully have the discipline to stay on a mostly plant based diet again. I don't want to get into it with anyone's physician (I myself will hopefully be a P.A.) but I definitely recommend at least supplementing your treatment this way. If anyone would like to learn more about what helps me, or have advice for what helps you, let me know!
Thanks!
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Hi and welcome. Please do feel free to share information here on the Forum, and that you are able achieve remission again.
 
Hi AustinH! Welcome!

I was diagnosed at 17 too (and had symptoms from age 6) but that was in 1996 - I'm now 36.

Where is your Crohn's located? And what type of disease do you have?

Are you currently treating yourself without input from a GI?

Have you ever tried exclusive enteral nutrition? I'm wondering if that might be an option for you to get back into remission

Best of luck
 
Hi AustinH! Welcome!

I was diagnosed at 17 too (and had symptoms from age 6) but that was in 1996 - I'm now 36.

Where is your Crohn's located? And what type of disease do you have?

Are you currently treating yourself without input from a GI?

Have you ever tried exclusive enteral nutrition? I'm wondering if that might be an option for you to get back into remission

Best of luck
Thank you!

My Crohn's is located in the lower large intestine. It has been severe for many years, and the doc was close to recommendin surgery at one point.

I haven't seen a GI for about two years, other than to get a scope done. My general practitioner has said to keep juicing, and so has my urologist. (I also have problems with kidney stones-which I've heard many people with autoimmune problems do.) He said that even though greens may be causing more calcium to build up in my renal system, that I should continue juicing, since that has been the only treatment that works. You might wonder why I would take their advice, but my actual GI doc at the U of Iowa told me to eat junk food and the GI at Mayo said that it could be my brain tricking my digestive system into thinking there is a problem. Both fine hospitals, but I couldn't put my life in the hands of someone who says things like that.

I'm not sure if it would qualify, but as far as enteral nutrition goes, I have had points where I could only drink Ensure, and recently I've done vegetable juice fasting--which is a tremendous help. Are you currently in remission?
 
Ensure is one of the formulas used for EEN. Any complete nutrition drink should give most people the same results - EEN gets 70-80% of people into remission so is similarly as effective as prednisone but without the side effects. And it's actually been shown to be better for mucosal healing. The traditional approach is to only have a liquid diet for at least 6-8 weeks (some people do 12) but there are newer studies showing you can have 10% of calories from an unrestricted diet and get similarly good results.

There's a new small study that had participants get 50% of their calories from the formula and 50% from a list of restricted foods and they saw similar rates of remission. Here's the study if you're interested http://mobile.journals.lww.com/ibdjo...icle=00007#P34 and the foods listed here http://mobile.journals.lww.com/ibdjo...00007.TT4.jpeg

It may be that the vegetable juice fasting has a similar effect - I have heard that any liquid diet is beneficial. But I would worry about nutritional deficits if you did that for too long - with complete nutrition drinks it's not a problem being on liquids for weeks or months.

So normally are you just supplementing your diet with juices? Or are you only having juices? What would your normal daily intake look like?

I do not like the sound of what the GI at Mayo had to say...although I may be taking that out of context. Was he suggesting your disease was psychosomatic? Or that all (or a proportion) of us with Crohn's triggered the disease ourselves with our brains?!? Seems like a strange thing for him to say to you when there are so many other more likely sounding causes!

Do you have a GI who does scopes for you? When was your last one? And how was your colon looking?

I'm genuinely happy for you if you've found the treatment that works for you...I just want to make sure you're getting proper monitoring and would love to hear that you've achieved or are on your way to mucosal healing!

I am currently in remission - biochemical and I'll say endoscopic remission but since my disease is in the jejunum and ileum we actually use MRE to check disease activity. That's all clear right now as was my recent PET scan.
 
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