How long did it take for your DX?

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conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/3/2008 3:08 AM (GMT -7)   
Hi Guys,
 
whilst my doctors are pretty sure that it is chrons that I have, how long did it take for your DX to occur?
 
I am asking because I went and had my Scope done last year for ther first time, they did a flex sig and theDoctor who had preformed it suggested that there was inflamation in the gut but did not do anything with it. It clear up, and as you will know has come back with a bang this year. Now, what my worry is because these past few days have been really good pain wise for me, and my GI appoitment is not until 13 November, could my chrons have cleared up for this period.
 
If so, would they still be able to find it this time aorund our will I have to wait for another flare to occur?
 
I could not be bothered having to go through it all again, if they find nothing this time around, I am walking away from them. They have had me waiting 13 weeks for this appointment which is bad enough, but when you go to the A&E four times with it and nothing happenes, you kind think awh to hell with it.
 
Di all you guys get a DX first time around or did it take a few turns for use to get it?
 
 
Thanks
 
 
Conor

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/3/2008 3:59 AM (GMT -7)   
Hi Conor I had fistula's and abcess so it wasn't too hard to get a DX. Some people here have taken awile to get one. Hang in there. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Roxette
Regular Member


Date Joined Aug 2008
Total Posts : 63
   Posted 11/3/2008 4:03 AM (GMT -7)   
Took years for me to get a diagnosis. My old gp was an ejit.
I eventually switched doctors and my new gp requested a colonoscopy.
I had the colonoscopy and a biopsy and diagnosis was made the same day with confirmation of same a few weeks later.

conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/3/2008 4:14 AM (GMT -7)   
Amazing how different people take different times. I guess if you stop your flare, you would have to wait until the next one comes along to get a DX, right? Moreover, if not flaring, would evidence of chrons still be there regardless?

athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 11/3/2008 4:41 AM (GMT -7)   

It took almost 7 years for me to get a diagnosis, everybody was telling me it was all in my head, until I landed in the hospital with a partial obstruction.  Then they finally believed me, and the biopsy of the colonoscopy showed Crohns.

Christina


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/3/2008 4:54 AM (GMT -7)   
My second trip into the ER they diagnosed CD. Then a year later when my GI moved to Canada and I saw another GI, he said it wasn't CD, but that the original tests said "indicative of CD". I know it's CD. My PCP is treating my CD and doing a good job of managing symptoms until I find another GI doctor. Have an appointment sometime this month... forgot when!

This is a tough disease. It tends to hide for testing and locations and symptoms can differ.

Good luck!

auntkay
Veteran Member


Date Joined Apr 2004
Total Posts : 1199
   Posted 11/3/2008 4:55 AM (GMT -7)   
It took several years for me too.I was dx when a new gi did a colonoscopy and biopsys.

Kay

conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/3/2008 4:57 AM (GMT -7)   
Thanks for the info guys. What I find strange is the original GI seen inflammation and did not biopsy it. I could have know this time last year if he had of taken the time to dig a little more.

Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 11/3/2008 7:33 AM (GMT -7)   
I had pain for like three months lost a 100 pounds, face turned a gray colour then they decided to give me a scope after about 10 trips to the hospital and found a abscess the size of a orange. Gee i guess it wasn't in my head like they thought LOL!! Finally they told my i had crohn's i had a bad experience back then. I got rid of my old family doctor and found a new one.
I didn't have a good experience when i got diagnosed. shakehead
Crohns for 13 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/3/2008 7:45 AM (GMT -7)   
a couple years
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/3/2008 8:31 AM (GMT -7)   
I guess I am one of the lucky ones, I was diagnosed 3 weeks after the symptoms showing up.

Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 11/3/2008 10:53 AM (GMT -7)   
about nine months passed between my first ER visit until diagnosis (after a scope, CTE, and Prometheus test). In the intervening months I had one more ER visit, saw several doctors, and had a lot of other tests.

In my case even when I feel better my sed rate and C-reactive protein are above normal. Also the Prometheus test gave very high antibody titers and that does not change.

I don't think inflammation can come and go too quickly. Even if things look good outwardly, I the biopsies would show something.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis

Currently trying...

Enteral Nutrition, Flax Oil, VSL#3, Folic Acid, Vitamin E


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 11/3/2008 1:10 PM (GMT -7)   

It was twenty years from the first time I got sick until I was finally diagnosed.  I wasn't constantly sick for those twenty years, but I did get quite sick a few times and was always told it was just a virus or was psychological.


conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/3/2008 2:49 PM (GMT -7)   
WOW! Sounds like it has taken a while for you all. My doctor at first thought that it was IBS that I have. But the amount of bleeding and pain quickly changed his mind. I cannot understand how there could be inflammation there but no pain at time?
 
I have googled to see if it was always there but came up with nothing.
 
I wouldn't have thought that it could come and go when you onside that you are dealing wih a disease and not an minor infection.

malb
Regular Member


Date Joined Oct 2008
Total Posts : 33
   Posted 11/3/2008 5:08 PM (GMT -7)   
It took about 2.5 years and three GI changes to finally get a diagnosis. By that time I was down to 90 lbs and had developed a fistula and abscesses all over the place. I was quite a mess for a while there. That was 14 years ago.

bmkcek
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/3/2008 5:52 PM (GMT -7)   
Took them about 4 years to diagnose me

stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 11/3/2008 6:04 PM (GMT -7)   
Well, when I first started getting symptoms I went to a local health clinic and complained about severe stomach aches, the doctor only did a urinary analysis and it didn't came back with anything wrong so she couldn't tell me what was wrong. I with stood the stomache painss for atleast three months before I went to my dads family doctor, He did a whole physical on me and decided that I needed to go see a gastro doc becuase he found that my stool contained blood. A month after I had a colonscopy done, and a barium x-ray on the same day and was diagnosed. Now I'm due to go in for my first surgery and I am scared as heck, but all in all it took about 8 months of pain before I was diagnosed.

TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 11/3/2008 7:01 PM (GMT -7)   
I was diagnosed pretty quickly once I saw the GI, but I also saw a rheumatologist who disagreed (prior to the colonoscopy results) with the GI's prediction that it was Crohn's... the rheumatologist thought it was lupus. The scope results confirmed the GI's diagnosis. However, I had seen at least two other doctors earlier that year who missed it when I had what turned out to be my first major flare-up... one was an ER doctor who sent me home with medication for a stomach virus, the other was a doctor I saw at a follow-up after the trip to the ER who thought it was most likely a virus and didn't want to waste time doing a scope or other testing because he was sure that it would turn up nothing... how wrong he was. I could have been diagnosed roughly six months sooner had the first two doctors pursued it and listened to me when I described my symptoms.
Dx Crohn's Disease 1996
Have taken Prednisone, Pentasa, Rowasa, and Asacol
Currently on Asacol 2400 mg daily to manage remission
 
 


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 11/3/2008 11:05 PM (GMT -7)   
It took nearly a year for me. I was in and out of the emergency room numerous times with ileus. It was obvious enough that there was some problem with my intestines, but nobody could figure it out. Actually, they didn't have the answer until they finally decided to do an exploratory surgery. As soon as the surgeon cut me open and had a look, he knew what it was. The surgery was necessary anyway - the doc removed about one foot of damaged intestine at the terminal ileum and I had about 9 years of relief after that.
Crohn's since 1988
3 resections


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/3/2008 11:33 PM (GMT -7)   
I was DX instantly once I saw the GI my GP sent me to, but I was a pretty easy case, my disease started with perianal crohn's skin tags (which were previously misDX as hemmies) but once my disease quickly moved internally (which was the point when I saw a GI for the first time) then along with the perianal skin tags and the internal flaring (ileum, colon and rectom and anal tags) I was a clear cut case of crohn's.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


letlive27
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/4/2008 3:15 AM (GMT -7)   
I am 55 years if age and first noticed signs in 2001. Original DX was UC, after getting three or four hospital stays the last one couldn't get a handle to stop the bleeding. I started getting a fever with chills and lost around 50 lbs, so in Sept. 2002 I went for the cure and went for a total colectomy with a j/pouch after a few units of blood. The pathology study of my colon indicated I had in fact Crohn's disease. The inflammation jumped to different spots, I had a fistula, and a skin tag. The surgeon was very unhappy he put a j-pouch in me (MY FAULT), but after having to endure the ostomy bag for six months I'm glad I have one. I had to endure IV treatments with iron for four years until my doctor finally sent me to a doctor that had the pill EGD, which found two bleeding ulcers in my small intestines. The Carafate and Nexium fixed the problem.
I have had butt pain it seems ever since I had the reversal in Feb. 2003. After a few years of suffering I finally put in for accommodation, which was granted, but after six months was taken away. I finally took an early retirement last year. I had adhesion surgery in 2005. My last hopital stay for a blockage last July I was told by two doctors I had a fistula and I also had small kidney stone. I was told by my primary, who also said I had a fistulaand to quit taking Calcium supplements she recommended on account of the osteopenia I have that is worsening. My gastropentrologist said I had a fistula. I finally went back to the surgeon that performed the colectomy and he said I had a fissure, which I think I have had reoccuring all along. I am now am trying to go back to taking small doses of Immodium four times a day, using flushable wet wipes, watching my diet like a hawk, and not falling back to things I like: tortilla chips, regular coffee, chocolate, anything with a rough texture like: Tricuits, Wheat thins, raw fruit and vegetables, never eat peanuts unless ground to a flour and nuts too.

I just started on Remicade in July 2008
I take: Xanax PRN
Percocet PRN
Carafate (twice a day maint. dose)
Librax (replaced Digex)
Nexium
Alinia (antibiotic)
Rifaximin (antibiotic)
Entocort

conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/4/2008 10:41 AM (GMT -7)   
Hi Guys,
 
thank you all so much for yuour replies. I am just fearful that it will have cleared up by the time I go to the on th 13/11 and then I will have to do it all again. But then again, going by what you guys went through, I see how hard it is for a DX to come your way.

TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 11/4/2008 6:08 PM (GMT -7)   
Hey Conor... don't worry too much... when you have Crohn's, it usually has a way of turning up somewhere! I'd say they'll find it if it's there to be found (not that I want anyone to have this disease, mind you). In the meantime, take care of yourself and try not to worry... they'll figure out the diagnosis soon enough.

Betsy
Dx Crohn's Disease 1996
Have taken Prednisone, Pentasa, Rowasa, and Asacol
Currently on Asacol 2400 mg daily to manage remission
 
 

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