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So now they say I don't have CD????

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Crohn's Disease
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Posted 6/6/2009 2:02 AM (GMT 0)

Ok, so here is my story.

 

I was diagnosed in Feb with CD after a year of back and abdominal issues.  CT showed inflammation in TI, and then colonoscopy a week later also showed inflammation and lesions in both large and small bowl.  All lab work was negative for CD.  So Doc said although not 100% he was pretty sure it was CD and treated it as such.  After 3 months and no improvement he sent me to a crohns specialist at UNC in Chapel Hill, NC. 

 

At my first appointment we talked for almost an hour, and after the talk and reviewing all my history he told me I may not have CD.  He thought I had NSAID induced IBD (I had been taking strong IBprophen off and on for back pain).  So he repeated colonoscopy and camera endoscopy.

 

Well I got the results back today and all clear....no signs of active disease.  He said again that because of the lack of evidence now and in the past, he is pretty sure I don't have CD.  I asked if maybe the meds I was on put me in "remission".  He said although possible it’s not likely.  The kicker...although overall I am feeling better, I'm still having some issues (abdominal pain, nausea, irregular bowl movements, and my biggest complaint back and joint pain). 

 

So I don't know what to think.....the sheet he gave me says I have NSAIDs induced IBS and prescribed me Imodium AD and bentyl and said within time it should go away completely.  He also referred me to a rheumatologist for possible AS.

I have mixed emotions about the whole thing......no offense to anyone but I feel great that he says I don't have CD but at the same time I have felt like crap for along time, I still have "CD" type issues, and I have not taken any NSAIDs since January!

 

Anybody else had anything like this happen?

Posted 6/6/2009 2:59 AM (GMT 0)

Hi

Well i suppose its great news you dont have CD,

But my with myself a newbie of CD my doctor said that first that i had Ulcerative Colitis but once my Colonosocopy came back the results showed a CD active cell that confirmed my Diesese, so i presume we all have a active CD cell that verifys active crohns. ?

Posted 6/6/2009 3:14 AM (GMT 0)
Well, that's potentially wonderful news! I would be very hopeful if my doctor told me this. I would be cautious however and at least seek a second opinion in case your doctor's orders for treatment might not help keep you well on the off chance things aren't as he/she says.

I hope 100% that you don't have Crohn's...that would be so wonderful. I would still be on the safe side and double check so that nothing harmful happens to you in the future.
Posted 6/6/2009 5:10 AM (GMT 0)
Given your long history of back issues and usage of NSAIDs, it is possible that what caused all the intestinal issues. Referring you to a rheumy is a good idea to evaluate the possibility of AS as the cause of the back issues. Many with AS also have gut issues and not just from NSAID usage. I hope you can get into see the rheumy in a timely manner to sort all of this out. In the meantime, start a log and chart your daily gut symptoms - number of BMs and type, abdominal pain levels [make a scale], and nausea. Should the gut issues need evaluation again, you will have something concrete to show.

My back and peripheral joint issues from the AS are far greater problems for me than the CD.
Posted 6/6/2009 3:45 PM (GMT 0)
Ides,   Question for you.  How was your AS diagnosed?  I asked about AS several months ago and my PC doctor took some x-rays and ordered a blood test and said although my spine shows some straightening and joint damage he didn't think it was AS.  I really didn't think he was qualified to say that but didn't press the issue.   My back pain has been present since March of 2008 and progressed in recent months to not only my lower back but also my middle back and lower neck....especially in the morning!  I do have a herniated disk but everyone says my pain is not associated with the disk.  I feel like I could live with the abdominal issues but the back problems are killing me!!  The only time it has felt better in the last year was when I was on prednisone, pain was gone within 4 days and returned within a week of being off.   Hopefully the rheumatologist will help!!  
Posted 6/6/2009 8:31 PM (GMT 0)
txmark - After I shut down my computer last night, I realized that I should have asked you something else and told you my story a bit more.

Between the time of your first colonoscopy and the second performed by the UNC specialist, were you off ALL NSAIDs? If you were, then the theory that you had NSAID induced ulcerations does carry some weight. Originally, they suspected I possibly had NSAID induced ulcerations because of my heavy Aleve and Motrin usage for my joint pains. I went off all NSAIDs for six months and they repeated the colonoscopy. I had new "erosions" and scarring from the old ones. Further testing at this point confirmed the CD diagnosis.

Sacroiliitis, inflammation of the sacroileal joint, is a hallmark sign of AS. Sacroiliitis damage takes years to be evident on xray. MRI is typically done to look for SI inflammation and damage if the xray is negative and the patient has lower back pain. Also, have you had a test for HLA B27?

I was diagnosed with spondyloarthropathy. It is one of the spondylitis diseases associated with Crohn's. Then an acute flare of lower back pain located primarily over the "dimple" above the buttock, with pain radiating into and down the buttock to the back of the thigh, got me another MRI. This one showed inflammation of the SI joint. They already knew I was HLA B27+ and so changed the diagnosis to AS. AS and spondyloarthropathy are essentially treated the same.

Do you have any other joint problems - knee, shoulder, heel, ankle? Women typically have different onset sites than men. I have been plagued with joint problems for years - plantar fascitiis, Achilles problems, right knee, and right elbow plus both shoulders. In 2002 I began having serious finger issues. Currently three different finger joints have fused on their own. I have repeated enthesitis flares in multiple joints. I was doing fairly well while on Remicade but things are worsening again since I had to stop it and then Humira.

I hope the rheumatologist they send you to is familiar with AS and looks closely to see if that is the problem. Push them for an MRI of your lower back.
Posted 6/7/2009 4:03 PM (GMT 0)

IDES – I have been off all NSAIDs since my first colonoscopy in Feb and my most recent one in May.  In fact the last time I think I took any NSAIDs was in January.

 

I also had an MRI of my back in late Dec/early Jan….that is when the herniated disk was discovered.  Not sure if the checked my sacroiliac joints or not at that time.  Sometime after that in March I think they looked at X-rays of the SI and I was checked for HLA B27 and both results were negative.

 

My back pain is very similar to what you describe…….lower back that sometime radiates into the buttocks.  After I came off the last round of prednisone, the pain has spread to my middle back and lower neck both close to the spine but the majority of the pain is lower back.  It seems to be very stiff and it is worse in the morning and late evening before bed and feels better once I get up and start moving around.  Warm showers help and I always seem to feel good right after I swim. 

 

My knees have also started to bother me, left knee more than right.  I had my left knee reconstructed in 2004 (ACL, meniscus repair).  It has never been the same since the surgery but really hasn’t bothered me until the last few months.  In the evening my hands also sometimes hurt and my ribs when I breath in really deep.

 

I really hope they get to the bottom of it…I just want to feel better and be able to act my age (31).

 

Thanks again!

Posted 6/8/2009 12:14 AM (GMT 0)

I think a lot of us have gone through the rollercoaster of not really sure what is going on. Seems to be a hard thing to diagnosis. Which is why so many of us have been given the good old IBS label, only to have that change later on.

Now NSAIDS made me almost bleed to death. I wasn't diagnosed with Crohn's yet, and was taking them for daily headaches (just regular old aspirin). However I had problems for YEARS and YEARS before my NSAID use. Including a rectal fistula, to go along with all the other fun stuff.

I think my last GI was never sure of what I had, wanted to believe it was caused by NSAIDS. Even though I've flared more then once since going completely off of them (haven't touched one since Feb. 2006).

Anyway I hope you can get some answers. Sometimes only time will tell.

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