09-11-2018, 09:58 PM   #1
JLD14
 
Join Date: Sep 2018
Diagnosis Trouble

I have had a very long year of being diagnosed, undiagnosed, and painful symptoms. Here is an overview (I hope I can get some help here):
I have had bloating, cramping, 15-pound weight loss, and constant diarrhea (5-6 BM per day), joint pain (3 times a week or more) for almost a year now. I had a colonoscopy and was told that the biopsies were positive for ileitis. My doctor diagnosed me with Crohn's at this point. After budesonide did not provide me with any relief for a couple months, my doctor sent the biopsies to a larger hospital, where they came back negative for ileitis. After this, I got a SBFT (inconclusive) and a CT scan which came back normal. All my blood tests and stool samples came back normal. My doctor then reversed my diagnosis and told me I have IBS. I have, however, tried many different diets (gluten-free, lactose-free, low FODMAP, etc) and none have helped at all. I am taking an anti-spasmodic which has helped some with pain but not with the number of bowel movements I have. I am getting a capsule endoscopy next week as a final measure to rule out Crohn's.
My most recent investigation, however, has been with my stools. For as long as I can remember now, a lot of my stools are loose and have what looks like coffee grounds in them. I drink a cup or two of coffee each day, so I thought maybe that was where these black speckles were coming from. Because of this I have never felt that this is relevant information to tell my doctor. After finally googling "coffee grounds in poop" earlier tonight, I realized that this can indicate blood in stool. I do not normally eat food with seeds in it, so I don't think this would be the cause of the black specks.
I guess I am asking the members of this forum if this new discovery should cause any urgency? I will inform my doctor of this at my next appointment, but should I notify her of this sooner? I thought that blood in stool would always be found in a stool sample, so I did not think this could be a possibility.
Any thoughts?

Thank you,
Frustrated
09-13-2018, 03:59 PM   #2
KarlB
 
Join Date: Aug 2018
Location: United Kingdom

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Unfortunately if you have black specks that look like coffee grounds that would be a cause for concern.
If it has been like that for a long time and you aren't feeling faint and dizzy then you could probably wait until your appointment to tell your doctor.
Black specks looking like coffee grounds would suggest bleeding from further up in the GI tract, anywhere above the upper half of the ileum, including your stomach, duodenum, jejunum and even oesophagus.
Did you have a gastroscopy (camera down the throat)?
Did you have a blood test for coeliac?
Does anything seem to help your symptoms?
Hopefully the capsule pill should give you some more information.
09-14-2018, 10:02 PM   #3
JLD14
 
Join Date: Sep 2018
Unfortunately if you have black specks that look like coffee grounds that would be a cause for concern.
If it has been like that for a long time and you aren't feeling faint and dizzy then you could probably wait until your appointment to tell your doctor.
Black specks looking like coffee grounds would suggest bleeding from further up in the GI tract, anywhere above the upper half of the ileum, including your stomach, duodenum, jejunum and even oesophagus.
Did you have a gastroscopy (camera down the throat)?
Did you have a blood test for coeliac?
Does anything seem to help your symptoms?
Hopefully the capsule pill should give you some more information.
I have not had any scope for the upper half--only a colonoscopy. I have been tested for celiac and it was negative. I haven't really found anything that helps my symptoms. I have tried every IBS diet and haven't found relief. Some days I can eat whatever I want and feel fine and other days I may not even eat and feel horrible. I am currently taking an antispasmodic since I was diagnosed with IBS and I think it is helping a little bit with bloating.

Thank you for the suggestions. It is always helpful to know which questions I should be asking my doctor.
09-16-2018, 01:53 PM   #4
Jabee
Senior Member
 
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Join Date: Oct 2016
Location: Massachusetts

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Did your GI explain the difference between the biopsy interpretations? A second opinion isnít always a good (or correct) opinion. I would be interested to know what the second pathologist found or didnít find. And if you have inflammation higher up in your small intestine Entocort probably wouldnít help much anyway. I have also had one of my CTs read incorrectly when the radiologist failed to recognize a partial blockage. Hopefully the capsule endoscopy will be helpful.
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