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Crohn's Disease
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Posted 3/27/2017 3:36 AM (GMT 0)
A bit of background:

I started noticing a change in my bowel movements back in August last year. In September, blood tests showed slight anemia, even though I was taking all my vitamins and eating well. So an FOBT was ordered, which showed positive for blood. I got both a colonoscopy and endoscopy, with biopsies taken from the terminal ileum, cecum, ascending colon, transverse colon, descending colon, sigmoid and rectum. All came back normal and my GI did not see any active bleeding during the scopes. However, my hemoglobin was still low, but my GI said that sometimes bleeding can happen with IBS, which I called BS.

Fast forward to February, when I started feeling run down and was losing significant amounts of my hair. I started seeing a new GI, who discussed my symptoms with me and ordered another colonoscopy, as well as a Meckel scan, abdominal ultrasound, calprotectin, FOBT, and celiac disease panel. All came back normal, even calprotectin was <15.6. Bloodwork showed hemoglobin of 11.1, ferretin of 12, and interestingly, my blood clotting tests showed prolonged PTT (40.1 seconds) and PT (14.7 seconds), and INR of 1.2. My GI put me on vitamin K, but I don't think it's helping much considering I'm still feeling run down and I still have the feeling that I'm losing blood from somewhere.

My question is, what should I ask my GI? I have a follow-up with her on Tuesday, should I ask her if there is anything else being missed and should we run more tests? I'm not sure this is crohn's, as my calprotectin is low, but maybe there could be something else going on.
Posted 3/27/2017 9:41 AM (GMT 0)
You can have Crohn's in the small bowel, which isn't reached with a scope. You should consider having an MRI or CT scan (or both) done. But yes, you can have some bleeding with IBS. That's typically due to hemorrhoids or something similar from going so much.
Posted 3/27/2017 11:35 AM (GMT 0)
Well, your colon has been thoroughly investigated, so there's nothing going on there. You do have mild anaemia though - I'm presuming from that and your name you are a woman. Anaemia is a fairly common complaint in women. It can, but usually doesn't, indicate a GI disorder such as IBD or coeliac disease.

Like scifigal said, you should get an MRI or CT scan of the small bowel next. I'm not convinced it's Crohn's either, but for your peace of mind you should rule everything out. In the meantime you should consider taking an iron supplement - or better still having an iron infusion - for the anaemia.
Posted 3/27/2017 4:07 PM (GMT 0)
Thanks for the advice guys. I will definitely pursue the anemia thing. Just wondering, if I did have something in the small intestine, wouldn't the TI biopsy have shown that? I thought that biopsies show inflammation and other things, so I was under the impression that if it came back all normal then a small bowel study wouldn't be needed...I could be wrong though.
Posted 3/27/2017 4:29 PM (GMT 0)
TI biopsy will show inflammation in the TI, but not anywhere else. Crohn's is most likely to occur in the TI, but it can also occur higher up in the small bowel beyond the reach of a colonoscopy.

So yeah, I would definitely ask for a small bowel study next.
Posted 3/27/2017 6:20 PM (GMT 0)
Thanks. I have heard about the capsule endoscopy, do you think that I should ask for that or would an MRI or CT be better? I just want to make sure whichever I choose shows everything, whether there's something wrong or not.
Posted 3/27/2017 6:37 PM (GMT 0)
Erm, it depends on what you have. MRI/CT is better for detecting Crohn's in some ways, as it can show thickening of the bowel walls, creeping fat, enlarged lymph nodes and fistulas. It's not as good for seeing ulcers or the insides of the bowel wall as a pill cam is though.

Think on the whole you'd be better off with an MRI scan, but if you want to be as thorough as possible have a pill cam as well.
Posted 3/29/2017 12:58 PM (GMT 0)
Hi!

Thought I'd chime in. I myself have Crohn's in the small bowel only and it has been quite challenging to get a definitive diagnosis.

If you only have Crohn's in the small bowel and it does not involve the TI colonoscopies will be of no use to you. Also, my GI has informed me that calprotectin levels are less accurate when Crohn's is confined to the small bowel.

I had tons of tests done, but for me the capsule endoscopy has proven to be most relevant. I had it done two times. It showed ulcers throughout my small intestine and the second time it showed an increase in number. A biopsy was then ontained (succeeded after 4 attenpts) and it showed chronic inflammation. This together with my bloodwork led to my diagnosis.

I would like to emphasize however that I had a lot of signs in my blood that something was off. Every single bloodtest I took resulted in red numbers. WBC, CRP, ESR etc, everything was off and elevated. This was what convinced my GI that she had to keep looking, because IBS could not have caused it. She was very persistent and without her (and my own) perseverance I don't think I would ever have been diagnosed.

I think it might be worthwhile to have another bloodpanel done before you do further testing. Especially since it will show how you have developed over time (i.e. it can show chronic developments). For further testing I would definitely recommend the capsule endoscopy and go from there: if it does nog show any ulcers and/or other abnormalities I'd say your chances of having Crohn's are slim (which would be very good news if you ask me).

Best of luck to you!
Posted 4/13/2017 6:10 PM (GMT 0)
Thanks for all the replies. You guys have been a ton of help.

Just to update, I told my pcp about my concerns and she agreed that we should do a small bowel study. Just for my peace of mind, she ordered an abdominal and pelvic MRI, which came back normal, no abnormalities or tumors. I guess the next step is a capsule endoscopy. Also, I did get another blood test done, hemoglobin at 11.2, iron at 90, and ferretin at 15. Not ideal, but at least not low enough to make me really worried.
Posted 4/16/2017 8:56 AM (GMT 0)
I had a colonoscopy, abdominal ultrasound, fecal calprotectin test, and CT Enterography which were all normal before I had the capsule endoscopy, which showed suspected Crohn's Ileocolitis (as well as apthous ulcers in my jejunum). I had abnormal bloodwork (elevated CRP and ESR) as well as WBC in my stool throughout that time.

Now, that said, those previous tests were over the course of multiple years and my symptoms had worsened dramatically by the time I had the capsule endoscopy. But to answer the question of whether the capsule endoscopy will show anything all the other tests didn't, yes it definitely can.

Regarding whether you should do an MRE or CTE, your doc will most likely have a preference. Mine's preference was MRE due to wanting to limit radiation exposure (since I'm young). At the time there was no way I could have made it through 30-45 minutes in an MRI machine without needing to get out to use the restroom (or getting nauseous from laying down with my stomach full of contrast for that matter) so my doctor allowed me to do the CTE instead. Which turned out to be the correct decision for me as I had frequent diarrhea while in the imaging waiting area due to the contrast solution they make you drink beforehand. If you aren't having urgency/major frequency issues and can tolerate large amounts of sorbitol, I'd go with the MRE.
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