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Crohn's Disease Forum » Your Story » Passed off like a football


04-11-2014, 02:32 PM   #1
StevenJ
 
Join Date: Apr 2014
Location: hertford, North Carolina
Passed off like a football

I was diagnosed with interception(I know it is not spelled correctly) when I was born. That was my first surgery. Then I had surgery at 7yrs old for pollops. When I was 12 yrs old, I had a blockage and almost died. I had 3ft. of my intestines removed at that time. I have always suffered with stomach pain and rectal bleeding. In 2001 I was sent to a Dr. in Richmond, VA I had endescopic surgery to remove adhesions and suffered a blockage from that and almost died. The stomach pain still continued. In 2003 I was diagnosised with Crohn's. After bouncing back and forth between meds and eating percocets like rolaids my Dr put me on Remicade. This medicine liked to kill me. I had some kind of reaction to it and I couldn't move any of my joints. After that I was put on Nexium, and a and a slew of other meds. My Crohn's went into remission for 4 years, but I continued to have pain and bleeding. You know the normal. I moved and got a job with Satan herself. My stomach pain became worse. My family Dr. Sent me to see a gastroenterologist. I of course had to go through all the normal test. Before I could get in with the Dr. I probally made at least 5-6 ER visits. The pain more than I could handel. I was put in the hospital back and forth. I had to take many test they went up, down. I had to drink that crap again and again. The techs would get mad at me because I couldn't keep that crap down. I live with being nauseated 24/7. Then they want you to drink that mess. Finally, my gastroenterologist who has diagnosed me with everything from a hernia, crohn's, IBS. When told I had IBS, I was informed the pain was my fault. If I could get rid of the stress in my life, then I would not be in pain anymore. No pain meds for IBS. This is all my fault remember. When he could not pin point exactly what's causing my pain, he sent me to a surgeon. This man looked at me like I was an alien. He even adked me why are you here. He called my gastroenterologist and he wanted me to come back to him before he sent me to DUKE UNIVERSITY, I fianally said no! Just send me striaght to DUKE. That was 2 wks ago guess I will have to call for that appiontment. Been to the ER once since then. So much in pain right now I want to cry like a baby. But I have to work my wife is disable. So now I have to wait in pain until I can get an appointment at Duke which is about 4-5 hrs. away. I have missed so much time from work that I am in danger of loosing my job. They don't see my illness. So this is my story. Drs have just passed my back and forth like a football.
04-11-2014, 03:18 PM   #2
Ali29
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Join Date: Mar 2014
Location: Texas

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Hi Steven J,

The American's With Disabilities Act covers people with Crohn's. Look up ada.gov for information that may be helpful with your job situation - there is also a phone number you can call for further information.

So sorry to hear how you've been treated. Hopefully your next visit with the Doc will provide you be informative and provide the treatment you need.
__________________
Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
04-11-2014, 03:43 PM   #3
Trysha
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Join Date: Aug 2009

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Hello Steven J
Welcome to the forum.
So sorry to hear of the awful things that have happened to you by uncaring and ignorant doctors.
Among your other problems you may have IBS which is something I have that came with the crohn's, fortunately I have more enlightened and caring docs looking after me.
It is very painful but some can be helped with anti spasmodics.
Crohn's cannot be helped with antispasmodics.
It is a very good move that you are making to Duke, it is a good place and I am very hopeful for you to fare better in their hands.
In the meantime perhaps your personal physician might be aggreeable to letting you try an antispasmodic like dicetel or buscopan that sort of thing., which is something that helped me in the past but it did not work for the crohn's stuff.
The nausea I have found that ginger helps.
A few slices of fresh ginger with a spoon of honey and a slice of lemon mixed into boiling water, cool and drink it. I also tried gravol before this but found the ginger better.
Might be worth a try.
I do hope that your appointment at Duke is imminent the sooner the better
Do keep in touch and let us know how you get make out.

Feel better soon
Hugs and best wishes
Trysha
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