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Diagnosed 9 years ago...

Hi my name is Daniel,

I was diagnosed with Crohn's at the age of 13. I spent 9 months of local doctors telling me I had "bad gas" and I needed to eat right and all my problems would go away... I was eventually hospitalized (Flowers Hospital Dothan, AL) and the doctors their knew there was something seriously wrong but they didn't know what to do... So I was transfered to USA Womens and Childrens Hospital (Mobile, AL) Where Dr. Griems (not sure on spelling) diagnosed me with crohn's disease.. That doc was a pediatric gastrointerlogist..

I got put on prednsione gained some weight... I went from deathly skinny to just skinny... I didn't really have any more major problems until I was 17... Since then I have batteling my crohn's and something else that's obscure called conversion disorder..

Crohn's you know about... Conversion disorder is case specfic... Imagine if you stand up in a chair to quickly and get really lightheaded and dizzy... Now imagine feeling like that all the time.. The more you try to concentrate on something physicaly or mentally it becomes worse... It took them 3 years and about 7 doctors to diagnose me with that... I have found it is a good thing though that I have the conversion disorder... It is my bodies way of telling me I'm under to much stress so I need to slow down or it will slow me down... Due to the crohn's and my past 2 surgieres from the crohn's I have a huge pain tolerance... So if I were in school I could literially work myself to death because I would not be eating right and I would be under constant stress which would cause the crohn's to flare up...

This I just stole from my blog on myspace... I hate retyping junk again and again...

http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendID=91404811


How I have been...


I was just released from the Hospital on Wednesday August the 30th... I have been in the hospital for almost a month.. I went in for one week... They thought they had fixed me.... Silly them I was back in the hospital 2 days later for another week... Again thought I was fixed... Two days later I went back to the hospital for 2 weeks...

Am I going to have to go back to the hospital again? I don't know...

My main problem is the medicine used to treat Crohn's disease is a very High Dosage of a corticosteriod... It reduces inflmation and supress the bodies immune system.. It works great for acute inflamtion like with the crohn's.. The bad part is it wreaks havoc on my body both mentally and physicaly...

The amount of corticosteriods(IV infused) I have been on has been enough to drive a normal person into a nervous breakdown in 1 day... I was on it for 30...
I'm still on a VERY high dose.... Btw this stuff directly affects cortisone... You know that stress hormone... Right now my body is going through about 6-8 times the amount of physcial and mental stress a normal person goes through every day...

I am taking medication to keep me sane, from getting cancer from this medcine, to keep my bones from falling apart, and to keep me somewhat heealthy... Also to make sure the acid scaring in my throat and stomach and intestines heals up...

Previously I had surgery earlier this year... They did a foot long cut along my belly vertically... Just like the old C sections... They removed 6 inches of my small intestine then...

In 2003 I had another surgery same foot long cut... They actually just reopened the old scar for the surgery in march 06... Thye removed another 6 inches of my small intestine, my appendix, and fixed two fistulas connecting my bladder to my small intestines...

As far as school goes I have given up on it for now.. from 2002-2004.. I tried school... I think I attempted about 6 semesters.... I manged to complete a whole whoaping 6 hours out of 80+ attempted due to medical reasons...

In Summer 2004 I started working for GNC as a sales associate... I'm still working their now... I'm not working atm... I plan on working again soon...

I know tons about Vitimens, Herbs and minerals now though... Also about sports products and a lot of other crap...

I'm taking teh best care of myself right now and I'm taking the maximum amount of supplements/prescrpiton stuff to make me healthy without over doing it...


I don't really know how I feel... Right now I'm in some pain because I had 1 piece of fudge...

I have to figure out what foods I can tolerate and in what amounts...

Mainly I'm tired... I want to be off of all these steriods and just feel normal... But that won't be for another 5 months or so... If you come off the steriods too fast the crohn's acts up, or my body acts up, or if you come off of it way to fast then you go into adernal gland failure... Yes my adernal gland part that makes cortisone is not working... It won't start working again until I hit about 10 mg of prednisone a day... Right now I'm at 60mg (30 every 12 hours) a day... I stay on this dosage for 2 weeks before I step down to 55 mg... That's just 5 mg lower every two weeks... So it's gonna be a slow hard struggle...

And that is what I have been up to and how I have been....
As far as me replying all the time to these posts it gives me something to do and helps to make me feel useful... As I stated above I have been in the hospital this past month plus I had surgery back in March of this year... So I really haven't worked that much in the past 6 months... I just want to feel like I am of some use to somebody.... I'm tired of my family worrying about me and trying to take care of me... I want to able to take of myself and others..

If I could just help one person to feel better then I would be happy...


Well that's most of my story... As I told your admin you can either believe it and accept me with open arms or burn me at the stake for being a hertic...

Okays bye bye
 
Also I'm not out to make money off of you guys... The only way I would make money would be if you drove to Mobile, AL went to the mall their on a day I would actually be working and bought stuff from me then (GNC Store 282, Region 7, Divison 2?, District 2) The phone number their is (251) 471-1579... But again I wouldn't be there because I'm still recovering from the hospital and my ongoing battle with prednisone.. The commesion I would get would whole whoaping 3% off of the subtotal of my GNC product sells... All third party products (stuff that doesn't say GNC on it) have a flat PM amount (promotional money) or they have no PM and give you no money for selling the item. Yes coupons effect the subtotal and I always make sure I get people the max discount they can get even if that means I make less money... It also means people are much more likely to come back and trust me because I give them very honest advice and good deals..

Sorry if I sound hostile I'm just hungery and my first days dosage of prednsione is kicking in....

Ok cya guys later,

Daniel
 
K

Kate

Guest
welcome to the site i hope things improve for you

All the Best
kate
 
X

xrayzerase

Guest
wow.
i'm new here (today)so..no intro yet..
but-anyway-i'm andrea..and-i just wanted to say that reading what you wrote here already helped me. i was just diagnosed last week (but have had symptoms for like forever..(many years--i am 43 now)..just..didn't know-i have mild crohn's-but-it is scary-especially at first...just knowing what it is-and that there is no cure yet..for any stage of this terrible thing)
but-hearing how you fight this thing and share it with others is really great-
good luck tapering down on the prednisone....
andrea
 

mikeyarmo

Co-Founder
Welcome to the forum Daniel,

First thank you so much for already sharing so much personal information and tips.

I never knew there was a such thing as a pediatric gastroenterologist...

You definately must be strong to battle Crohn's and Conversion disorder. I am very happy you decided to join us, as I think you are someone we can learn a lot from.
 
V

Valentina

Guest
hi Daniel, welcome to the site. its a very helpful and informative place for all of us.. and youve allready contributed a ton!
 

Cara Fusinato

Sarcastic Forum Comedian
Greetings -- publicly as well -- sounds like you have been through the wringer for a long time and especially recently. We all have our story, don't we? Hang in there and your info. really IS useful. Like you, I have a supplement story. I couldn't care less if anyone called me to order some and try some, or to buy some from someone local or whatever. I just want to see suffering people feel better. Keep posting! And I'll be posting right along with you!
 
D

devildee(donna2005)LOL

Guest
Hi Daniel

:welcome: to the forum im sure you will find it a great site ((hugs))
 

Kev

Senior Member
Hey there... Welcome to the forum... Mind if I just call you GNC? aka Good Natured Crohnie.. Thanks for the offer, but think I'll pass on driving to Mobile... Besides, it's usually Americans who come to Canada for cheap drugs.. Anyway, I really appreciate the offer of your expertise... Navigating the do's & don't of IBD requires as much info as possible. I haven't been delving too deeply into the pos. effects of vitamins and supplements. I was put on a brand name multi-vitamin & a calcium supplement, but they didn't do me any noticeable good. Turns out that I am sensitive to lactose... Both of these were loaded with it.. Searched for quite a while BEFORE a very helpful pharmacist helped me find a generic multi vitamin w/o lactose... There was another brand name, but it contained ginko baloba (sp?) and he recommended that anyone who wasn't healthy should avoid taking GB.. So it turned out the cheaper, generic brand was better for me (in particular) than the more expensive brand name... Who would have thunk it? See what I mean?
 
Aloha Daniel and welcome to the forum. I'm new also, so we'll so we'll just fumble around together while we get acquainted with everyone, okay?

anita
 
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