Biopsy Results!

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RoseAnnette
Regular Member


Date Joined Mar 2010
Total Posts : 69
   Posted 4/6/2010 6:15 PM (GMT -6)   
Hello everyone.. I entered this specfic forum because I want to know how you were diagnosed with Crohn's Disease? Let me tell you a little about my symptoms.. I have been suffering fr 9 months with Anemia (Off and on), Dizziness, Diarrhea with mucus and blood, mild cramping, bone/muscle aches, enlarged liver, and cysts on my kidneys and ovaries.. They just did a Colonoscopy on Friday and the results came back today all clear! But I feel HORRIBLE.. The majority of my pain is on the right side of my abdomen and back. Do they determine Crohn's through an Upper GI? And also, what is a Barium Enema?? Are these symptoms anything that you have experienced with Crohn's?? I see my Dr. on the 15th of this month to talk about the next step (Which will probably be the Upper GI). Any input would be helpful for me at this point being that I am still really sick :o(  

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 5953
   Posted 4/6/2010 7:02 PM (GMT -6)   
Crohn's can be diagnosed by a colonoscopy or an upper GI test; it depends on the location of the disease. If it's in the large colon or first few inches of the terminal ileum, it will be diagnosed by colonoscopy; if it's in the small bowel but further up than the first few inches of the TI it will be diagnosed with an upper GI test, most likely a barium follow-through.

A barium enema is like a barium follow-through of the small bowel, only in the large bowel - and you get given an enema instead of swallowing a drink. It does the same thing as a colonoscopy (visualises the large bowel). Not sure if it shows anything that a colonoscopy can't, since I can't think of any other reason why you would have both a colonoscopy and a barium enema.

Your symptoms don't sound that unlike Crohn's, unfortunately. But still, only further tests will be able to tell. Good luck... :-/

PV
Veteran Member


Date Joined May 2006
Total Posts : 1158
   Posted 4/6/2010 7:21 PM (GMT -6)   
I agree. I think the next test is probably an upper GI investigation. There are some blood tests to see if you are prone to crohn's, but I think they are pretty unreliable. They can check you for markers of inflammation - SED, ESR, CRP - so see if there is a lot of inflammation in your body. These markers are typically high (not always) when you have an active crohn's flare up.

I think normally when crohn's affects your liver, it shows up as inflammation and blockage of the bile ducts rather than an enlarged liver (I could be wrong here). Also, I've read that Crohn's patients are more prone to kidney stones, but I have not read of crohn's causing cysts on kidneys. Of course, your doctor would know best.

I hope you get the tests out the way and some answers soon.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


RoseAnnette
Regular Member


Date Joined Mar 2010
Total Posts : 69
   Posted 4/6/2010 7:24 PM (GMT -6)   
I just have this horrible feeling that it is Crohn's.. Now I have to wait a full 2 weeks before I see my GI again to schedule the Upper GI.. What about the bone pain? Do I ask my Primary to refer me to a Rheumatologist?
RoseAnnette
 
**Keep Moving Forward**
 
~Awaiting biopsy and bloodwork results.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1158
   Posted 4/6/2010 7:34 PM (GMT -6)   
I don't think there's any harm seeing a rheumatologist. Rheumatologist are usually also internal medicine doctors who have a bigger picture than gastroenterologists. So, if this turns out not to be crohn's, already being on the books of a rheumatologist would be a good thing I think.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 4/6/2010 9:35 PM (GMT -6)   
Just to clarify for you all...an Upper GI looks at your stomach, while a Small Bowel Series looks at your small intestines. If you have Crohn's in your small bowel, it could show on a SBS. You would have to have involvement in your actual stomach for it to show in an upper GI. Also, a barium enema shows only your colon, which is the same as what is shown in a colonsocopy. If you've had a colonoscopy and your doctor was able to see your entire colon, it wouldn't make much sense to do a barium enema (at least in my opinion) Maybe your GI will do an Upper GI and SBS to see if anything is going on in either your stomach or small intestines. Also, MRI is being used more now for crohn's. Since you haven't had any diagnosis, your doctor might also/or order a CT of your abdomen.
(please don't think I'm being condescending or anything, I just want you to understand what each of the tests is)

Also, I wanted to let you know...you can have normal tests and have crohn's. I know I have crohn's. It's been proven by pathology after surgery. I have had tests come back "normal" though. No test is 100%, which is why diagnosing crohn's can be so difficult. Unfortunately, there are people who it has taken some time to determine exactly what's going on with them.

I think going to a rheumatologist would be a good idea. You could have more than one thing going on causing your symptoms, and sometimes "clues" from rheumatologist combined with tests your GI has already done can put together to figure things out. You'd have to check with your insurance and see if you need a referral or if you can just make an appointment on your own with a rheumatologist.

I hope you figure things out. I know it can be frustrating to go to the doctor and tell them and feel like something is wrong, and be told that they don't know what's causing it.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


RoseAnnette
Regular Member


Date Joined Mar 2010
Total Posts : 69
   Posted 4/7/2010 7:07 AM (GMT -6)   
Thank you all for your input and support.. I seem to be getting worse in symptoms :( Last night I was up at 3am having to run to the bathroom with diarrhea, didnt get to sleep until like 430am. Now because of all the cramping and diarrhea I feel tired and drained. Yesterday my knee and hip achiness was out of control. I just wish I knew what I had so I can be on some kind of medication, until then I am just gonna contuinue to get sick :o/ I will update everyone on what the Dr. suggests on the 15th.. Bless you all!
RoseAnnette
 
**Keep Moving Forward**
 
~Awaiting biopsy and bloodwork results.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 4/7/2010 8:21 AM (GMT -6)   
I would ask for a pill cam test. With the scopes sometimes they do not reach the areas in the small intestines that Crohns can sometimes lurk in. With the pill cam you swallow a pill camera and it takes pictures all the way thru your system. Most folks have better luck with this test in getting a diagnosis. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/7/2010 10:26 AM (GMT -6)   
By all means, see a Rheumatologist. But, I'd be darned if I would wait two weeks to see the gastro and then who knows how long before an upper GI w/small bowel follow thru is scheduled!

Your family doctor can script that UGI/SMFT, you don't need to wait for the gastro. That can put you a couple of weeks ahead of the game getting a Dx and treatment for your symptoms.

Let the gastro order the Pill Camera for the small intestine if the UGI/SBFT doesn't satisfy his Dx'ing criteria.

In 2008 my Mayo Clinic gastro told me that the MRI isn't as reliable as the CT enterography yet except in the rectum. You rectum's already been seen by the colonoscopy. Mayo is working on improving the MRI results for the rest of the intestines in order to reduce the need for the massive radiation doses of CT scans. Heaven knows we get enough radiation exposure thru the years when we have Crohn's disease!!!

Have they discussed gall bladder possibilities with you? I totally agree w/others that a Barium Enema is a ridiculous repetition given the colonoscopy. There are some definite advantages to a colonoscopy rather than the BE, biopsies being an important one, but the scope is also money in the gastro's pocket instead of the radiologist's. I suspect many crohnies go thru more than one colonoscopy that really isn't necessary.
My computer says I need to upgrade my brain to be compatible with its new software.


RoseAnnette
Regular Member


Date Joined Mar 2010
Total Posts : 69
   Posted 4/7/2010 11:03 AM (GMT -6)   
OMG CrohnieToo-- The quote at the bottom of your reply is classic :) Love it! My family Dr. is an A**.. If it wasnt for me pushing to see a GI then I would have never seen one. Can I ask him to set up an Upper GI appointment? I thought the GI would have done it after seeing all results clear from the Colonoscopy. I havent even got my bloodwork back yet. I feel like it's unfair that I have to wait to be seen in order for any other tests to be scheduled and in the mean time I have to continue to get sick because I am not on any meds due to my stupid health insurance not covering any of them. I am looking into getting straight Medicaid instead of this Share of Cost nonsense..
RoseAnnette
 
**Keep Moving Forward**
 
~Awaiting biopsy and bloodwork results.


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 4/7/2010 12:30 PM (GMT -6)   
My final diagnosis was made with Prometheus IBD Serology 7 blood test. It even told my GI which marker I was positive for so we know that I have fibrosing rather than fistulizing Crohn's. My main problems are in the small intestine, so my colonoscopy was fine. The small bowel follow through indicated some narrowing in my small intestines, but that alone wasn't enough to formally diagnose me.

Good luck getting whatever it is diagnosed and under control.

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 4/7/2010 12:49 PM (GMT -6)   
My symptoms are exactly the same as yours, other than I don't have an enlarged liver- even down to the cysts on my kidneys and ovaries!
I'm seeing a doctor at the Cleveland Clinic who is re-evaluating my diagnosis...with everything that has gone on with my "Crohn's disease", he doesn't think that it's Crohn's anymore. Especially because my colonoscopy and subsequent tests have come back clean.
I'll keep you updated on what this doc finds out. :)
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.


RoseAnnette
Regular Member


Date Joined Mar 2010
Total Posts : 69
   Posted 4/7/2010 12:53 PM (GMT -6)   
Imissicecream-- Wow our symptoms do sound alike.. Please keep my posted on what the new diagnosis is :) Good luck!
RoseAnnette
 
**Keep Moving Forward**
 
~Awaiting biopsy and bloodwork results.

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