Crohn's Disease Forum » Support Forum » Vent Away » F*#@%~g FED UP!!

02-23-2012, 07:08 PM   #1
Peanuttt's Avatar
Join Date: Feb 2012
Location: New Jersey
F*#@%~g FED UP!!

I was in the ER yesterday for terrible abdominal pain & my GI specialist called to see how I was doing, which is nice BUT... Even after telling him all my symptpms and I have an "unofficial diagnosis" of Crohn's Disease he said he cant start me on any of the meda for IBD because he physically cant find anything on the colonoscopies.

WTF?!?! If its in the early stages wouldn't it make sense to treat it so it wont progress rapidly?! I mean, COME ON!!! So im supposed to be in excruciating pain every day, and sick as a dog instead??

Seriously... What are we waiting for? For my colon to fall apart before I finally get a medicine to get this under control?! This is frickin ridiculous, not to memtion STRESSFUL... Which ive been told by him to stay calm bc it will make it worse!! How the hell am I supposed to keep calm when my IBD is completely out of control & I miss work a LOT bc of this, let alone I am only 24 years old & have no quality of life & have had to put off my dream pf attending law school since this all started!!

I mean really... Do my intestines have to rot before I can get treatment to control this?! IT MAKES NO SENSE and im so fed up!!!
"What doesn't kill you makes you stronger."

Asacol EC 800mg 3x/day
Celexa 40mg/day
Nucynta ER 200mg 2x/day
Klonopin 1mg (as needed)
Schiff Probiotic Gummies
Vitamin B100 Complex
Tylenol #3 (as needed)
02-23-2012, 07:28 PM   #2
Slim Johnson
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Join Date: Oct 2011
Location: Salt Lake City, Utah
Your GI should order a small bowel series to determine if you have any issues in your small bowel. A colonoscopy won't usually show any indication of CD, however it will show UC..

The reason the GI won't give you meds is likely due to the malpractice issues that come from drug prescriptions without a hard diagnosis. Lame really, however they don't want to get sued.

If your GI doesn't want to work with you on getting a diagnosis, you may want to find a new Doctor. Which can be a PITA... I have already had three GI's, and am currently looking for a 4th...
Don't assume my posts are about you. But if you are affected, that must mean you are guilty of something.
02-24-2012, 12:55 PM   #3
Peanuttt's Avatar
Join Date: Feb 2012
Location: New Jersey
Thanks for the advice Slim... Ive had 2 colonoscopies, a barium follow through, a videocapsule endoscopy, several bloodtests, and the IBD serology panel which keeps coming back "severely elevated consistant with CD."

Maybe it is time to either push for an endoscopy w/ biopsies... Or a new GI. The hurdles we have to jump over get aggravating sometimes...
02-24-2012, 03:32 PM   #4
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Join Date: May 2010
Location: Madison, Wisconsin

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Peanuttt, I'm sorry to hear you are doing so poorly and seem to be hitting brick walls. It sounds like you've had a lot of tests but I don't see anything like CT scan or MRI in your list. Have you had imaging tests like those? I also wanted to mention double balloon endoscopy. It's like a regular endoscopy but can see and take bipsies from the entire small intestine. It's a little more invasive than a regular endoscopy, I believe you need to be under anesthesia for it as opposed to sedation, but it could be worth it. Just an idea to consider anyway.

You say your GI can't put you on any meds - is he at least going to look you over and/or do more testing while you're in this flare-up? Is there any sort of a plan in place to get you a diagnosis and/or get you some relief? If not, you might want to start looking around for a second opinion as Slim suggested. Not all doctors are created equal (and some doctors are willing to put undiagnosed "probably Crohn's" patients on meds - my doctor has put me on prednisone, Entocort, and now Asacol even though I am also undiagnosed). Good luck, hang in there, and I hope you can either get out of this flare soon or get a diagnosis soon or have some sort of resolution to this!
02-24-2012, 03:55 PM   #5
xX_LittleMissValentine_Xx's Avatar
Join Date: May 2009
Location: Reading, United Kingdom

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I agree with the others that you should have a few more tests done. Have blood tests shown up inflammation? A biopsy may show inflammation which is deeper into the intestine which they cant see.
Good Luck with everything! I hope you start to feel better soon x
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02-24-2012, 05:52 PM   #6
Peanuttt's Avatar
Join Date: Feb 2012
Location: New Jersey
Thank you for the well wishes! Yes I have had 3 ct scans in the past 5 months it always comes back w/ inflammation & thickening in the sigmoid colon... The blood tests show high inflammationarkers also. I really feel like I keep running into a brick wall like you described!! Lol... Its hard to go about normal activities when your symptoms are so out of control (as i'm sure we ALL can identify)!

Hope everyone is well & thank u for any ideas/advice/support!!

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