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Crohn's Disease Forum » Your Story » I want to help


10-15-2012, 06:36 PM   #1
Sarahkk
 
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Join Date: Oct 2012
Location: New Jersey
I want to help

Hey so I literally just made an account. I WANT TO HELP!!
A little background on me:

~ I am 16 years old
~ I was diagnosed with Crohn's disease right around my 7th birthday
~ I have gone through almost every treatment and medication there is including Pentasa, Methotrexate (pill and injection), prednisone, Remicade, and more (sorry if I misspelled any of them)
~ I have never needed surgery (so far)
~ I was in the hospital for a blood transfusion at the age of 9 from severe blood loss and anemia
~ I discovered the book "Breaking the Vicious Cycle" and got more interested in diet and nutrition. Since then I've found my own specific diet that has helped me
~ Going on a diet put me into and kept me in remission for 6 years until I recently flared up again from a bad stomach virus, but am completely on my diet again and feeling great


Because of my experiences from Crohn's and my whole journey ever since I was little, I understand how hard it can be on those who suffer from the condition and how hard it can be on their families. I just try to stay cheerful and happy through everything, never taking a single day I have for granted. I have found a passion for music, singing, playing instruments, and writing songs. It is just something that helps my relax which is actually a VERY crucial part in coping with this disease. I have had terrible flares just from stress alone. So I just want to help everyone and anyone I can who either is suffering from Crohn's, or has a friend/family member with it. Ask me questions and I will try to help as much as I can
10-15-2012, 11:02 PM   #2
David
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Hi Sarah and welcome!

Thanks for your offer to help, that's really amazing of you. As you'll see around the community, MANY questions need answered and people need to be heard. So offers like yours are always graciously accepted. And of course, we're always here for YOU should you need us

I'd love to hear about your specific diet some time

See you around!
10-16-2012, 12:51 PM   #3
Sarahkk
 
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Location: New Jersey
My specific diet (as much as I can think of right now):
- avoid all cow's milk products other that aged cheese (i.e. sharp cheddar)
> instead I drink Almond Milk and eat Plain Goat's Milk Yogurt (sweetened with honey and fruit)
- avoid grains (i.e. wheat, rice, etc)
> instead I use almond flour
- avoid artificial sweeteners and sugar
> instead I sweeten with honey
- avoid starches (i.e. pasta, potatoes, etc)
- avoid any other hard-to-digest foods
- when eating red meat, I eat it more rare so it's easier to digest
- eat foods high in iron
10-17-2012, 09:53 PM   #4
jmckinley
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Join Date: May 2012
Location: Alabama
This sounds very similar to the diet we were doing. I think our problem was that we started it in the middle of a flare. I think if we moved back into it while he is doing well, it will help keep him there. I wonder, being a teen, how do you keep from getting bored with foods? There are many vegetables Ryan doesn't like, so it makes a diet very limiting. How do you deal with eating out with friends?

Ryan also plays music and considers it his stress reliever. You are right, stress can trigger the worst of symptoms very quickly! I will let him read your post!
10-18-2012, 12:35 AM   #5
tots
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Location: Austin, Texas

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Very cool that at your age you handle this disease with such grace!!

I have had this disease along time and with this recent flare I am in- I need to find the diet
I need to be on.

Thank you for sharing-

Lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
10-18-2012, 03:05 PM   #6
Sarahkk
 
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To jmckinley (sorry I only know you're username),
How is Ryan doing? I started the diet when I was in the hospital getting a blood transfusion so it was pretty bad when I started as well. Ryan is having issues gaining weight on the diet? I just had weight issues in general, but if he does have meats (rare red meat, chicken, fish, etc) and vegetables and stuff it shouldn't be too hard to keep weight. I was also taking tons of vitamins as well. What foods is Ryan eating now? With all of the options they have now for alternatives, there's actually quite a bit of variety of foods that you can be which fit the diet, so it's not too bad. And I don't eat out a lot but when I do I usually bring my own food with me, or get like a hamburger and take it off the bun. I remember it being difficult at first when I was younger, but when I realized how much better I felt on the diet, it was enough to motivate me to stay on the diet, and to eat foods I didn't like. I hope I've helped a bit and I send my support to you, your son, and your family
10-18-2012, 03:09 PM   #7
Sarahkk
 
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To Lauren,
I'm glad I could be of help and sorry about the relapse! hope you are able to use some of my info above! Get well soon!
10-21-2012, 12:43 AM   #8
tots
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Location: Austin, Texas

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Sarahkk-

Thank you, very hopeful right now that the Prednisone that I just added and upping my Remicade willl get me where I need to be!

lauren
10-21-2012, 09:51 AM   #9
Jam300
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Jmckinley,

I was incredibly picky with foods when I was young, didn't like any vegetables (bar potatoes) or fruit so essentially just lived meat and spuds in their various forms, not the healthiest diet there is.

I'd recommend experimenting with your son and getting him involved in the proccess of cooking itself, that certainly helped me want to try more things as cooking potatoes quickly became really boring for me. Try blended soups and not really explaining the extra veg you've thrown in and see if he likes it. Also try less commonplace vegetables in subtle forms (you can stir Spinach or Kale into other greens and it doesn't really notice). I'm sure naturally he'll grow more adventurous with age, I certainly did!
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Crohn's diagnosis in 2005, aged 14.
Ignored until late 2012.
Currently undergoing re-assessment.
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