Recently diagnosed and starting an elemental diet

[Dogluv]

Hi! My story starts in march 2011. My symptoms started with loss of appetite, diarrhea, and fatigue. I went to my doctor who referred me to a surgeon who examined me and said he was almost positive it was crohns. After that I was referred to a GI who I saw 2 weeks later. It was terrifying! I had never even heard of the disease before, and because it's an autoimmune disease I was scared I wouldn't be able to lead a normal life! When I met with the GI he told me he also thought I had crohns, but the only way to know for sure was to get a colonoscopy. So 3 weeks later I went in for my colonoscopy. I was told by everyone I talked to that I would be fine and back to myself in no time. After I woke up I was told by my doctor that it had taken me an unusually long time to wake up, but I seemed fine so he gave me my diagnosis and left. It turned out I have moderate to severe crohns, with 50 to 80 ulcers on my gut lining. After he had left and I was about to leave I started to get uncontrollably shaky, which was not a good sign, so I was taken to another room for x-rays and blood tests. After that I was told I had to stay the night which I had not planned on. I was told I still had an excessive amount of air in my stomach which was not normal. So long story short I was in the hospital for a week with no food, an ng tube, countless x- rays, and a ct scan. Luckily my parents were with me the whole time and I received lots of support from my siblings, family, and friends. When all the air was gone I got to go home ( finally)!!! So the next step was treatment. I had 1 dose of remicade while in the hospital, but the decision was made without a lot of thought. It turned out the side effects were to much for me, so I talked to my doctor about safer treatments and my parents want me to try the elemental diet. I will start it in About a week so any advice would be great! I know it will be hard with everyone around me eating, and being a teen I know it will be hard for my friends to understand.

 

[Grumbletum]

Hello
And glad you have found your way to the forum. You poor thing! What a traumatic introduction to Crohn's. I've never been on the Elemental diet but lots of people here have and someone will be along soon with good advice from experience. That sounds like an awful lot of inflammation so the diet will give your bowels a much needed rest.
Hope you are feeling a lot better soon.
Helen x

 

[Misty-Eyed]

Hi Dogluv.

I know alllll about the elemental diet. Been on it about 3 or 4 times over the years. The only time I loved being on it was when I was a student because it meant I didn't have to buy any food for 6 weeks!

Yes it's hard, but hopefully if it makes you feel better, it'll be worth it. How long will you be on it for? Good luck!

 

[Dogluv]

Thank you Helen and Michelle! It's great to to be able to communicate with people who have been through the same sort of thing!
Michelle, I Will be on it for a month then if I see results I will have in an ng tube at night so I can get it while I sleep, and I will be able to eat in the daytime.

 

[Misty-Eyed]

Oh that's not too long then. I miss my ng tube at times! Like when I have to drink prep lol.

If you ever need advice or want to talk about it, feel free to send me a message

 

[xJillx]

Hi Dogluv and welcome! You know, I had a similar experience with my first colonoscopy and trapped air. I woke in such pain, and it persisted for days. I had a CT scan, and all looked fine, so my GI assumed it was just trapped air. It went away after a week or so, but it was very painful.

I sure hope the elemental diet helps get your Crohn's under control and you start to feel better soon.

 

[Dogluv]

Thanks Michelle! Your right the prep is disgusting! If I have a question I will definaly contact you! Your great!
And Jill Thanks! This is the first time I've heard of anyone else having the same experience with trapped air, even my doctor hadn't seen it before!