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PostPosted: Fri Aug 19, 2011 1:58 pm 
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I posted a post on face book about me being in pain and not knowing what to do....

13 years ago I was Diagnosed with Crohn's Disease, by a doctor who is kind and an expert. However I had to start going to an adult Doctor when I hit 18 years old and he gave some names to me and we picked one.....the new doctor was a poympus scientific goof.....he said there's no indication I've ever had Crohn's....it's all very complicating.....so he said me being fat was the only problem I had....however for some reason, maybe a hope that this new doctor would listen.....he never did until I told him on a follow up appointment. He said he couldn't see anything, however I told him they biopsy showed colitis...he had a stunned look on his face...I think I might have seen the words Lawsuit flying around him, since he dissed me a lot and my mom....I probably could have sued, but that's not a fight I want...


Now I recent went back to that hospital, the doctor who I had seen who was the jerk doctor....they said he moved to Las Vegas. So my joke about that is...well now he's playing some other types of craps :P

I thought this new doctor would work with me....they did a test and then said go to pain management, and said I don't need to know what it is to go to Pain Management (disturbing thought how many people have been told that). They said my first crohn's procedure was in 2004....and that was very incorrect....but apparently all this time...dating back to when I started seeing the new adult doctor.....they didn't have the paper of my original diagnosis....the reason it wasn't there...in their computers....is because when it happend at the childrens hospital....they didn't depend on computers for filing in 1998 as much as they have done the past 10 years....so that's the reason everyone at the adult hospital didn't think I had any type of colitis, because the paper wasn't in the computer system.....I feel like sometimes if a computer said in instructions to jump off a cliff, they might.

That recently has taught me that if you trust in computers and technology alone....it fails....so now my family practice doctor took me off the last remaining colitis pill I had....and it's been almost 4 weeks without it....and I'm dropping weight (note that I'm not exercising at all yet I dropped 10 pounds in a week...which is not good, even on a fat guy who hasn't exercised at all, and now my pants are very loose on me...my weight is going down....I'm going to get weighed....but my health has been declining since I've gone off my one pill....and now we are going to try to get to the bottom of whatever is causing my constant belly pain, and it hurts to eat....and it burns to drink (not beer because I dont do that crap).....please keep me in your prayers or thoughts.....it hurts and i'm moody and i'm scared....the ER has no answers....we're going to get in contact with my Gi Doctor who I first had at a childrens hospital.....to see if he can get me in to someone that he knows.....we have to act fast...because i'm losing strenght...and I fear if this keeps going....I might not be around anywhere....except a place in the sky.

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Last edited by disneyboy20022 on Sat Jun 09, 2012 6:44 am, edited 1 time in total.

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PostPosted: Fri Aug 19, 2011 2:53 pm 
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I'm sorry you're hurting. You'll be in my thoughts and I'll keep hoping someday soon you'll have the best treatment to ease the stomach pains.

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PostPosted: Fri Aug 19, 2011 3:22 pm 
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Oooh! I wish you the best of luck! :(

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PostPosted: Fri Aug 19, 2011 4:20 pm 
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Disneyboy, I cannot believe what you are going through right now.

I will certainly keep you in my thoughts. I wish you the best of luck.

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PostPosted: Fri Aug 19, 2011 4:29 pm 
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God speed, friend. You are a part of this family and you are in all our hearts.

-Skyler

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PostPosted: Fri Aug 19, 2011 6:50 pm 
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That's awful! I hope everything turns out for the best--but I hope you'll keep giving updates so we'll know you're getting help. :(

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PostPosted: Fri Aug 19, 2011 7:24 pm 
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Disney's Divinity wrote:
That's awful! I hope everything turns out for the best--but I hope you'll keep giving updates so we'll know you're getting help. :(


I'll give updates when I find out more of getting help

thanks guys and gals, friends

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PostPosted: Fri Aug 19, 2011 8:24 pm 
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:( It all sounds terrible. I hope you get better soon. Good luck.

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PostPosted: Fri Aug 19, 2011 8:49 pm 
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Michael, are you following a prescribed diet? I have a good friend with colitis and he is on a very strict diet. If not, that might be part of the problem.

We have our teen group at church in a prayer chain for you. It started out at 19 and now I have just been told that it is in excess of 25. We are with you all the way in this.

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PostPosted: Fri Aug 19, 2011 9:11 pm 
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JiminyCrick91 wrote:
God speed, friend. You are a part of this family and you are in all our hearts.
I don't think I could say an better than Skyler has. I will keep you in my thoughts, Michael.

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PostPosted: Fri Aug 19, 2011 11:17 pm 
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Another victim of the system..........so sad. :(

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PostPosted: Sat Aug 20, 2011 12:32 am 
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That's awful :cry: I wish you well.


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PostPosted: Sun Aug 21, 2011 10:26 am 
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Hang in there, Michael! We're all rooting for you!

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PostPosted: Sun Aug 21, 2011 6:09 pm 
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Good thoughts coming your way!


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PostPosted: Mon Aug 22, 2011 8:20 am 
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You will be in my thoughts and prayers. Hang in there! :)

If you are 100 % sure you need the Colitis pill and you can't get a prescription for one, have you considered trying to get them online? I've read articles about how there are several overseas online pharmacies who ship to the US and don't ask for prescriptions, and customs generally lets imports in unless the drugs are banned in the US or are "controlled substances". In fact, lots of seniors do this to save on the cost of meds.

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PostPosted: Mon Aug 22, 2011 9:41 am 
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I really, really, really, hope that things get better soon and turn out okay! I really hope you get out if this terrible pain! I'll pray for you!

But I don't get why the doctors...who realize you actually do have chron's, your records just got lost...aren't still giving you the pill. I don't see why, because you know being off the pill is what started your health to decline...you don't just tell them, and ask for the pill again!

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PostPosted: Mon Aug 22, 2011 10:33 am 
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Wow, I'm so sorry this is happening... I'll be thinking of you!

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PostPosted: Mon Aug 22, 2011 11:15 am 
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Disney Duster wrote:
I really, really, really, hope that things get better soon and turn out okay! I really hope you get out if this terrible pain! I'll pray for you!

But I don't get why the doctors...who realize you actually do have chron's, your records just got lost...aren't still giving you the pill. I don't see why, because you know being off the pill is what started your health to decline...you don't just tell them, and ask for the pill again!


Well, the reason at this moment we aren't going on with the pill is, to truly find out what's causing this stuff....I want to find out what it is....and it has to get worse first in order to get better, I mean a 400 pound guy doesn't fit in the image book of Crohn's...(google it) and we're starting over and going to address this ASAP. We're sorta hitting reset on an electrical item...that's what we're doing. although the Pain Hurts like heck, today I'm going to see the Nurse Practicioner, who will hopefully give me better pain relief than a Liteaderm patch (which really doesn't work on a 400 pound guy) and that's the other thing, I'm losing weight rapidly...my pants that were tight on me a two weeks ago, are almost falling down.....it could be another hernia...idk...I'm puting my faith in Jesus....what happened at barnes in the past regarding them not having the paper is not worth going over now. I'm in a new town as of two years ago and....we're gonna figure this out. Barnes is now a 3 hour drive....so we probably won't go back seeing as they are stuck on the idea I don't have anything and I'm Just fat. My Fiancee can tell I've lost weight....a lot of weight in 4 weeks time, almost unhealty wise...i'll get weighed today at the doctor. I gtg get ready. I'll try to post an update later....

Thanks folks

Michael

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PostPosted: Mon Aug 22, 2011 11:30 am 
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According to a close ffiend that I have who does have Crohn's, he said that he has been on a Doctor's Prescribed Diet since day one. Crohn's affects the intestines and colon, and thus you need to eat foods that don't irritate them.

If you are that much overweight, then losing the weight can be the best thing for you. A 24-year-old who weighs over 400 pounds is not a laughing matter, and for your own health and well-being you should be a diet that kicks that weight off in a healthy way. This is coming from someone who almost six years ago weighed 457 pounds and was told to lose weight "or die" by my doctor. Today I weigh just over 250, and am on a pretty strict-but-flexible diet and am losing weight in a controlled manner. It takes a lot of will-power and family support to lose the weight, and I am lucky to have a family that supports me in every way when it comes to my weight.

Michael, I have our Teen Group at Church in a prayer chain for your health, and we have 27 kids who meet every day after school and pray for those on our prayer list, and you are number three on the list. Please listen to what your doctor's tell you, and follow any diet that is given to you for this disease.

Crohn's is not a disease you can just live with, you need to do everything the doctor's tell you to do, and I am sure one of those is to lose weight. I am not an exercise person, and do very little in the way of exercise, but I have lost 200 pounds, so you can do it, I have always told you that I am there for your support, and am available to you 24 hours a day, all you have to do is have a support group, and someone who does care for you, and we, here in Kansas, do support you and love you.

Please take care of yourself and your health. We need to have your input here at UD unaffected by this pain and discomfort you are going through at the present time.

Our prayers are with you, and get well soon.

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PostPosted: Mon Aug 22, 2011 4:03 pm 
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Here's my sarcasm when someone ask me if I wanna lose weight or if i've ever thought of it...I'll say this in my head or outloud

Nah...I'll get to 700 then i'll talk :|

Yes losing weight is important....I was at one time 360 pounds around the time I was on the tonight show w/ jay leno. My weight when I first came to matton was 480, today it was 411. And I've lost 20 pounds in the last month with no explanation...I wasn't trying anything differ than I do now. and on sunday was the day I ate the most I had in a week...one day all I had was half a pork burger....i'm having trouble swallowing....so I had the Cat scan and it showed no problems.....so the next step would be an MRI since it can see though fat tissue better, also a Barrium Sulfate Swallow (it looks like chalk and cement.....which would probably taste better than the barrium....and in the past I was reluctant to it....(having asperger syndrome can make me stubborn) But i'm in so much pain I'll have it drunk down in under 5 minutes....


And it's not just my weight and size.....I litterally can't go outside on a hot day or any day that's about 70 degress....I have some sorta heat allergy....I break out I turn polka dots and hives, even to warm things in my house....if I'm holding a burger or a hot food or something...I begin to get hives and pass out....I was on Prednezone for a long time which didn't help my weight issues but we took me off of that since it's not good for long periods of time...hence the weight but i've never been able to get it off

Also....I have some sorta absorbing thing in me.....or lack of....My Calcium and Vitamin D levels are low low....which makes no since because I eat plenty of dairy (also I've heard with crohn's dairy in some people isn't good...it's based on a case to case basis. ) Also my body is aborbing Iron for some reason even though I've been on iron pills for about 6 months....so it's not just crohn's...and I may not even have specifically Crohns, that has come into question...although it's clear I have irriatable bouwl.....and something in the coltis wrong....somone said that I had mircoscoptic colitis...idk...

My foods that make me get cramps and belly aches is corn, corn flour, corn meal, corn startch, and popcorn, or a lot of veggies that I like (broccoli with cheese).....and chocloate on occasion makes me had to head to the throne...


And it's hard to exercise or go run outside since I break out in hives and my body starts going into fight or flight mode.....I've passed out a few times in the past year....I can't go fishing with my dad because of the Heat and what it does to me, I can't go swimming, or ride a bike. which then me depressed as all get out....So really....I'm walking medical mystery....also when my white counts in blood tests that they did 10 years ago, the levels of white blood cells were like 16,000 which is a lot and you would think make me feel like death hung over. and over the years....we took me off some pills over the years, some of my belly pills...and since then my white blood cells have declined to about 7,000, which is still high, but when I had the higher white blood cell count around 10 years ago seeing a arthritis doctor at a shriners hospital, I felt healthy and fine....now....present day....I feel like crap....there's something odd....or rather mysterious going on, and it's not an easy fix or an easy solve.....I know to some people it might appear I'm making too big of deal out of this, but I know how I feel....and Yes I do want to lose weight....and even exercising on a treadmill or exercise bike I get hot and then i get clammy and sweaty and almost pass out...it's gotten worse since I've gone off that pill asacol 4 weeks ago. But in a way....we needed it to get worse so we can find out the problem rather than put me back on the asacol and see how I do.....and today the cat scan showed nothing they could tell...so that's why a Barrium Swallow might happen and possibly an MRi since it can see through fat better than cat scans....maybe I should go on that show Mystery Diagnosis.....and also at the doctor and my family and I have decided let's start fresh...forget teh diagnosis of "crohn's" and start over going through things......which I think that will find what is going on.....Also my pain is in my upper left side, it always has been when a flare up of the colitis goes on...and usually it's suppose act up on my lower right side.....and now it just hurts constantly....I have a high pain tolerance...so sometimes I distract the pain without even realizing it...like when I tell jokes or my voice gets loud, I'm in pain....

Also, it's expensive to buy foods that are diet or lower sugar, or carnation instant breakfast, which is frustrating...and the people making the diet food are driving the price up compared to the regualar food that's not diet that's made by the same brand but it's less expensive for some reason which is frustrating....and money is very tight, as with a majority of americans right now....

And the doctor doesn't know what to do....they are perplexed....some of the things they said doesnt' work and then we try something else....it works for a while....and then it starts over again....and it's depressing

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