Crohn's Disease Forum » Tests for IBD » Had colonosocopy yday..not sure what to think now!!!

05-10-2014, 03:27 AM   #1
Join Date: Apr 2014
Location: Wales, United Kingdom
Had colonosocopy yday..not sure what to think now!!!

Hi, as the title says I had my colonosocopy yday. Something that I never ever want to have again, I found it almost unbearable and felt like it was coming out through my stomach!!
Anyway, the reason for me having it done was, back in March I was in hospital for 12 days as I was experiencing stomach pain, bloating and nausea (all the same symptoms had last year but they couldn't find out what was wrong). Blood tests showed crp at 139 and ultrasound showed fluid around appendix. They then preformed keyhole surgery to put a camera in my stomach to look at the appendix. Appendix was fine, but it showed thickening of the bowel wall and inflammation (terminal ileum). I then had a Ct scan with contrast which showed the same.
They diagnosed me with probable Crohns Disease, but stressed they couldn't give confirmation until they had biopsy samples. Hence the colonosocopy.....
The results from yday??? Large bowel completely disease free, after many attempts managed to get glimpses into the terminal ileum and could see NO inflammation. Didn't manage to get any photos or biopsies of the terminal ileum.
I now have to wait for appointment with my GI.

What does this all mean?? Do I not have crohns? What else could have caused the thickening of the bowel wall that they saw in surgery and mri??

I felt utterly deflated yday. I cried when they said they couldn't see anything and told them I felt like it was a complete waste of time going through all of it.

Sorry for the long post....

Forgot to say they put me on a 5 week course of prednisolone when they discharged me from hospital in march
05-10-2014, 04:17 AM   #2
Cross-stitch gal
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Join Date: Dec 2011
Location: Vancouver, Washington

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Yay to no inflammation and disease free!!! But, sorry to hear about it too for the need of more tests and frustration. I totally understand not wanting things to be wrong, yet at the same time hoping that something will be found to finally be able to get things taken care of. I have been there. Sending hugs your way in the hopes that you'll finally be able to start feeling better.
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday

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05-10-2014, 06:23 AM   #3
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They only found a little problem at my terminal illieum (some day I will learn to spell it) that they didn't think was enough for the blood loss I most have had (no blood ever seen, but critically anemic). So they did a PillCam to see into the small intestine - that apparently is where my issues are. I would ask about that possibility if you feel these results are not conclusive.

BTW - the only discomfort with a PillCam is just the normal colonoscopy prep to clear the bowels. You just swallow the VERY LARGE pill-shaped camera, walk around all day wearing a receiver in a wide, low hanging belt-like device, and come back hours later to return the belt. You do NOT have to retrieve the camera. The only thing my doctor had NOT warned me was to wear sweatpants as the receiver has to fit under your pants and so you need something loose to cover it.

Here is hoping that you truly are disease free and something temporary caused the symptoms... but if it were me, I would ask for the Pillcam just for peace of mind.
Diagnosis: Crohns of terminal ileum, GAVE ("watermelon stomach")
Current medication:
daily: Pentasa (500mg, 4x/day), probiotics, calcium, vit D, sublingual B12

as needed to control anemia: iron infusions (using Venafer since I had allergic reaction to Injectafer)
05-10-2014, 06:37 AM   #4
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Don't get too discouraged as Crohn's disease can manifest itself only in the small bowel as is the case for me! A colonoscopy doesn't really show much of the small bowel and the upper endoscopy doesn't really show the small bowel either. So the pill cam or MRE of the small bowel or CT enterography may be better choices for diagnosing your CD! Hang in there! It only took 16 years for my diagnosis and the right GI doc!!! Lol but be persistent and keep pushing for answers!!!
05-10-2014, 07:27 AM   #5
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Join Date: Dec 2010
Location: Western Isles, United Kingdom

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How frustrating for you :-( It can so stressful going through the tests, which are all pretty horrible and for many of us it took a while to get a confirmed diagnosis. It can be really difficult to see properly into the TI. Perhaps the Pred has knocked the inflammation on the head. Have you felt better since you were on it?
Hopefully you don't have too wait too long to see the GI and see what the next steps are. Hang in there.
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
05-10-2014, 11:36 AM   #6
Join Date: Apr 2014
Location: Wales, United Kingdom
Thankyou all for your replies.
05-10-2014, 11:54 PM   #7
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Join Date: Jul 2010
Location: Kaysville, Utah

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Hang in there. A diagnosis will come.
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
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Crohn's Disease Forum » Tests for IBD » Had colonosocopy yday..not sure what to think now!!!
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