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Crohn's Disease
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Posted 6/11/2008 5:55 PM (GMT 0)

I am so darn frustrated that I could "drive myself over a cliff".   Iposted a few days ago about some of this, but I just need some help here, it's driving me crazy.  I saw my "new" GI last Monday, (old one retired assigned new guy), and he tells me he's not sure I have Crohn's disease.  He did a Colonoscopy in April and it was, in his words" beautiful, Nothing" biopsies normal as well.  That's good. right?  Would call that remission, would you? Help me here, if they saw IBD and then they don't you no loner have the disease?  I thought you just called it Remission.  ??????

My problem is NOT my GI symptoms right now, it's lower back pain, hip pain, and fatigue  for over a year.  So he ordered an xray to

 R/O Sacrioltis (sp).  That xray was normal.  He says we need to get an MRA (what is that?) and do some blood work.  He said I had some bloodwork about a year ago that showed VERY High Glucagon levels and Gastrin levels (anyone ever had that happen) and it needs to be retested and that may be my problem, NOT Crohns disease.  However, i have had eye infections, mouth ulces, nose ulcers,leg sores (can't spell the correct name), major vitamin/ mineral def. a Colonoscopy in 9/05 that showed IBD, 9 hospitalizations in last 2 years, and I have been getting Remicaide for 1 1/2 years, Entocort, blah blah.....  I have two aunts with Crohn's one died 15 years ago at age 44 with Biliary Tree/ pancreus Cances, the other Aunt just diagnoised wht the same!

All these drugs, and for what??  My family doc (whom I love) told me once, it can take years to get a DEFINATE DX but the GI says you either have it or you don't, and there are only two forms of IBD, Crohn's and UC.  My retired doc gave me a dx of IBD unclassified but said he was convinced it is Crohn's because of all my symptoms, he once said "if it walks like a duck, talks like a duck, it must be a duck". Anyone have IBD that is unclassifiably as to Chron's or UC? I ask for a Rhum. Consult and he said "I really didn't need one at this point".  HELLO, i'm paying for it not him, what do I have to lose?

Thanks for all you do here, all of you, you have no idea how much this site helps me!

Posted 6/11/2008 6:11 PM (GMT 0)
probably an MRI- magnetic res imaging, it will show more detail
I think you might need to see a different gi
and I think a rhum is a good idea
Good luck!
Posted 6/11/2008 6:32 PM (GMT 0)
I agree with Navy get a new GI and definetly see a Rheumy. I believe that Remicade has healed your intestines and obviously you are probably now in remission. I hate how GI's put so much credence in colonoscopies when folks like me have alot of small intestine inflammation that the scope can't reach.

Have you ever been tested for Celiac Disease? I wonder if thats what the new GI is trying to say you may have? I am not a doctor, but I think your first GI was write. Especially given your strong family history and all your symptoms. (((BIG HUGS)))
Posted 6/11/2008 6:37 PM (GMT 0)
Thanks to you MMMNAVY and Nanners.
Yes, I tested neg for Celiac. Is it normal to be UNDIAGNOISED?
Posted 6/11/2008 7:35 PM (GMT 0)

irish63 said...
Thanks to you MMMNAVY and Nanners.
Yes, I tested neg for Celiac. Is it normal to be UNDIAGNOISED?

Yes!  That is what I am learning!!  I was told from current GI and 2nd opinion GI that I may never

know if I 100% have CD.  But I'm treated as having it.  It's crazy!!

Posted 6/11/2008 9:35 PM (GMT 0)
LBJ way it is that they will "never know" is it because they don't see it?
What were your docs reason's why? Did you have biopsies that showed inflammation, or did they see it during a colonoscopy, eray, MRI???
Posted 6/11/2008 10:02 PM (GMT 0)
Many of the symptoms you describe are also associated with spondyloarthropathy [SpA] and ankylosing spondylitis [AS]. SpA occurs in about 20% of people with Crohn's. AS has a GI component very similar to Crohn's. about 3% of people with Crohn's also develop AS. With the symptoms you describe you really need to see a rheumatologist to get a proper evaluation. Also, if insurance allows, go ahead and get that MRI. Sacroiliitis does not show up on a xray until the inflammation begins to cause fusion of the joint.
Posted 6/11/2008 11:49 PM (GMT 0)
Thanks so much everyone. I made an app with Rheumatologist but unfortunately the first available is OCTOBER 24th. That SUCKS!!!!!
Posted 6/12/2008 1:02 AM (GMT 0)
There is such a thing as indeterminate colitis, when they're not sure if the inflammation in your colon (specifically) is caused by either CD or UC...if there's disease activity in the small colon, it's pretty much meaning that it's crohns, as CD can affect the entire GI tract from mouth to anus, seperately or more than one area at a time.

Have you ever had an SBFT or any other upper GI tract tests done?

Just because ones internal IBD goes into remission it does not mean the extraintestinal manifestations will, chances are, once you have osteo or arthritis then it's likely there to stay, remission of IBD or not.

:)
Posted 6/12/2008 3:12 AM (GMT 0)
Been away from the forum for several months, sorry.

My current GI, who is also the President of our local chapter for CCFA and apparently rather current on the research / treatment, told our support group a few months ago that they are now beginning to believe the Crohn's and UC are one in the same and simply opposite ends of the spectrum. He also stated that it's possible to be originally diagnosed with UC and later with C but not the other way around (if I remember correctly). This obviously doesn't help with all your other symptom questions but hopefully does for your undiagnosis question.

If you haven't already, you might consider looking into EFT, Emotional Freeedom Technique, as it has very wide spread applications, it's free, self administered and has no side effects.

You can find out more info at: www.emofree.com or www.tapping.com or www.tryitoneverything.com

I've personally done a few sessions and while I can't say it specifically eliminated a certain symptom, aside from the pain I was experiencing from dental work, I can honestly say that I thought it was worth the time and helped in an overall/general sense that I feel has improved my health.

Hope you find the same relief.
Posted 6/12/2008 3:19 PM (GMT 0)
MRA is Magnetic Resonance Angiography, used to detect problems with large blood vessels (such as vasculitis, aneurisms, etc.)
MRI is Magnetic Resonance Imaging, used to detect a wide variety of joint and soft tissue problems, including arthritis.

If you are taking crohn's medications and you get scoped and the doctor says "everything looks fine" and then UN-diagnoses you with IBD, then ask why you need to take the drugs to be healthy. Doesn't make sense to be un-diagnosed while taking those meds. Now if you went off the meds and stayed healthy, then maybe *a very big qualified maybe* you can get un-diagnosed. IMHO, this guy wants to see evidence of current activity before agreeing with your previous diagnosis, which is crazy given that the evidence of your diagnosis (i.e., previous biopsies, bloodwork, etc.) should be in your medical record.

Also, if a GI doc says no when you ask to see a Rheumatologist, then ask your regular/primary care doctor to refer you. If you are in pain, you have a right to get your pain treated, and joint pain is what Rheumatologists specialize in.

Take care,
Posted 6/12/2008 4:34 PM (GMT 0)

irish63 said...
LBJ way it is that they will "never know" is it because they don't see it?
What were your docs reason's why? Did you have biopsies that showed inflammation, or did they see it during a colonoscopy, eray, MRI???

My very first flare I had 8 years ago showed CD, my GI doc at the time said I had CD and he put me in the hospital.  I started treatment, got better, and all was fine.  I have had flares since then, but nothing like that one, until a month ago when I went into a flare and have been dealing with it.  Its bad like the very first one 8 years ago.   All other flares, when I had a scope, my GI doctor didn't see anything, and my biopsies all come back no active disease.  I also had the IBs blood test just done and that came back negative as no CD.   But my second opionion doctor I just saw last week told me that all of this doesn't mean that I don't have CD.    He said that I may never find out if I truely have it.    It's so crazy!! 

I go for a colonoscopy next Wedneday (YAAH) and I am really hoping my GI see's something this time (which I'm almost positive he will because I'm that sick) and can tell me something from this.  If there is nothing there I'm really going to be upset!!    Then my guess is maybe its in the small bowel or small instistine or something.  I don't know. 

Right now I'm on pred.  and I'm dropping weight (down 10lbs in the past 3 weeks) plus I can't eat.  And when I do eat I'm in the bathroom within 1/2 hour.  :-(   

On top of all this, my joints are flared up beyond belief.  The pred is reliefing some of the pain, but today I had to start decreasing it by 5mg and I just scared to start coming down now when I'm still not well. 

Posted 6/12/2008 9:09 PM (GMT 0)

THANK YOU, ALL OF YOU!  I finally got a Rheumy app but I cannot get in until Oct.  which completely sucks, but I can call to check about cancellations periodically.  That, I will do!!  Here's a bit of an update if you can calll it that...

I called my GI office, and asked them to have him clarify some things for me. 1) Why the MRA 2)did he indeed undiagnois me?  SO the nurse calls me back and says the MRA is to "better see the changes seen on the MRI". 2)The undiagnosis she doesn't know about, that is something I'll need to speak to him about during a scheduled app.  Ok schedule me! However,he would like to wait till bloodwork comes back and MRA results.  OK when can I have bloodwork done, (it's been almost 2 weeks since app)nurse says "we need to make sure there is no special instruction before getting it drawn so I'll let you know".  I'm sorry I think that is INSANE!!!  I have made an app with my WONDERFUL family doc, and hopefully he can help me understand more, and also get me into a Rheum. faster.  In the meantime, I cannot find anywhere any evidence that you can be UNDIAGNOISED< only in REMISSION, just as you all have said.  I have a copy of the Pathology report that clearly states I have: chronic inflaamtory bowel disease.  This report was confirmed by 2 seperate pathologist and YES my new GI has a copy, however he said he HAD NOT read my complete chart.  I have seen this guy 2 times, 3 if you count COlonoscopy. do you not find that UNACCEPTABLE, I do!!

Someone ask about meds, he said to keep everything the same until we "know more".  I will find another GI before I quit taking my meds, I have finaaly got this GI thing under control!!!

What do you think....

Posted 6/12/2008 9:48 PM (GMT 0)
I wish I could help!! I'm still trying to learn all this too so I'm not much help!!!
I'm just praying to find out more next week on me!! lol
Posted 6/12/2008 10:00 PM (GMT 0)
i would want to know how you did it,,how you got into remission,,was it the meds on yur post which brought remission, apparently you found a good combination for treatment you mite provide insight as to what you felt actually worked well.
it makes sense to find the source/cause of the pain (if its crohns related inflammation for instance): MRA/MRI as been mentioned, and bloodwork for rechecking Glucagon levels and Gastrin levels is important because of previous hi levels and other implications,, diff time i know but it mite require fasting, before it is drawn. sorry i dont know the answer.
Posted 6/13/2008 4:09 AM (GMT 0)
Irish, lets not do the lemming dive over the cliff just yet. I would have a problem with a GI that unDx's me just because My scope looks better. Your on Remicade so it should look beter if its working. Surely he has read the doctor before him's notes and test results. The back pain is also a telling thing. I have AS as well and that does not really show in an X ray. The MRI should show more. I would give this new GI a little more rope, he will either find something with the MRI, or hang himself. Keep us up to date OK???
Posted 6/14/2008 12:53 AM (GMT 0)
OK Sniper, I'll hold off a bit longer before diving over, but only a bit!!
Medchrt1: I think the meds are really working for me, one thing I know has helped TREMENDOUSLY is using the enemas I can't remember the name but it is like Asacol but enema form. Also, having a good PCP that will see me anytime and is not afraid to call my GI if he feels something needs to be addressed. (MY PCP is local and my GI is about an hour away, I live in a small town.)
LBJ: Thanks again! I'm so glad you're getting some answers, maybe mine will come soon!!
I'll keep you all informed.... Thanks again for all your thoughts and prayers
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