Crohn's Disease Forum » General IBD Discussion » Confused. Any suggestions?

07-08-2017, 10:24 AM   #1
Join Date: Jul 2017
Location: Shepherdsville, Kentucky
Confused. Any suggestions?

I will try to keep this short.
I've had on and off tummy troubles forever. Alternating between D and C. Always chalked it up to an inconsistent diet and it was only mildly bothersome. I've also had joint pain since I can remember. No one ever took me seriously, just wrote me off as a pill seeker because I said I was in pain.
In 2013 I started having really bad belly pain and blood in my stool. A trip to the ER got me diagnosed with an ulcer. Still having bouts of C and D (sometimes with streaks of blood). A few months later I started having gallbladder issues. Turns out my gallbladder was non-functioning. Obviously they removed my gallbladder. Then the tummy troubles really turned up. I have 4-6 watery, mucousy bm's every day and heartburn from hell. A few months after that surgery I was passing blood again. Not just a random BM with blood like I'd had in the past. Several in a row with blood in the toilet and on the paper. I treated myself to another ER visit. Stool sample showed blood. CT show colitis and colon wall thickening of infectious or inflammatory nature. GI admitted me for colonoscopy and endoscopy. He was convinced he would find Crohn's. He found nothing. Not even a trace of where the bleeding was coming from. There was a section he couldn't reach with the two scopes. He assumed it may have came from there. He diagnosed me with GERD. Told me the constant D was from my gallbladder removal. Skip forward a few years. Still have the random bloody BM. Still have D, almost always with mucous. The joint pain is spiraling out of control and had added severe back pain to the mix. I have glaucoma and arrhythmia. I'm seeing a rhuemie who had diagnosed me with spondyloarthritis. She believes there is a strong possibility I have some sort of IBD as well. I am not sure what to think. I had another bloody BM yesterday but this time I am having stomach pain on my right side, even a spot that it sore to the touch. I am really bloated and have no appetite. I see my GI next month. I'm just confused and feel out of control. Wouldn't he have seen it the first time if it were there?
07-08-2017, 11:48 AM   #2
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Join Date: Oct 2013
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Maybe it was down in the area he couldn't see. I am tagging Maya 142.
07-08-2017, 12:31 PM   #3
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If you only had an endoscopy and colonoscopy and no other imaging after the CT scan in the hospital then there is an awful lot (@20 feet) that has not been imaged directly. You need a capsule endoscopy, MRE, or CTE. Even an upper GI series with small bowel follow through would give some idea of what's happening in your jejunum and ileum. A colonoscopy can usually reach the terminal ileum, but if the inflammation (and you have some, as per your CT scan, is confined to your small intestine it won't show up on upper or lower scopes. Mine is located in the small intestine, so it is visible only by CTE or capsule endoscopy. In addition, you have spondylitis as well as eye problems. I would talk to your GI about more imaging. If he won't order any, the. It might be a good idea to see another GI. I know switching doctors is a difficult thing to do, even when necessary, but I would hate for you to continue to suffer. If you get much worse, please consider going to the ER again.
07-08-2017, 12:46 PM   #4
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So an endoscopy can only see the top part of your small bowel and a colonoscopy can only see the very last part. You would need an MRE or pill cam to see most of it, which is likely where the bleeding is coming from. I would push for those tests and/or get a second opinion. It is standard to do them in addition to scopes when there is a possibility of IBD.

Spondyloarthritis is associated with IBD and it is very possible you have both.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18

Crohn's Disease Forum » General IBD Discussion » Confused. Any suggestions?
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