So do I have Crohn’s?

[balancesheet]

It all started in 11-2021 with a trip to the ER for epigastric abdominal pain (no diarrhea or vomit) – CT showed mild fluid and gaseous distention while distal mall bowel shows mild mural thickening and enhancement particularly at the level of the terminal ileum, findings that are suggestive of enteritis. Treated with Tylenol, felt better and was released. Didn’t really think too much of it and moved on (weight: 73kg to 70kg).

Visited the ER the 2nd time (6-2022) for epigastric abdominal pain and vomit. Treated with Tylenol, felt better and was released. Still didn’t think too much of it and moved on (weight: 70kg to 67kg).

Colonoscopy and endoscopy in 6-2022, both showed normal results, even at terminal ileum.

Visited the ER again (7-2022) for epigastric abdominal pain and fever. Another CT was done but didn’t even show anything related to my stomach. Treated with Tylenol and antibiotic, felt better and was released but this time pain didn’t really go away (on and off) and my weight went from 67kg to 63kg in 2 weeks.

Have done blood tests multiple times – latest one (8-2022) showed high WBC, low Ferritin and low Iron % Saturation. Others are normal (Iron, RBC, Hemoglobin, Platelet, Creatinine, EGFR, Protein, Vitamin B12, etc. all normal).

Did a MRI Enterography (8-2022) which showed short segment wall thickening of a loop of jejunum in the right upper quadrant spanning approximately 3cm with mild diffusion restriction concerning for infections/inflammatory enteritis.

Next step Dr. wants to do a dummy capsule endoscopy to make sure the real capsule won’t get stuck and start me on prednisone 10mg twice a day. I googled and some are suggesting small bowel enteroscopy which apparently is time consuming and not many places do it.

I am really confused at this point and am thinking to get a second opinion at Mount Sinai but the appointment time is like 2 months.

Does anyone here can provide any insights or pointers from experience? Any thoughts are appreciated. Thanks.

 

[balancesheet]

Forgot to add I also did a stool test (8-2022) and my Calprotectin was abnormal at 137 mg/kg.

 

[Scipio]

FCP of 137 is definitely high but not shockingly high. Have they tested CRP? If so what is it?

Capsule camera endoscopy is how my Crohn's was finally diagnosed. Hopefully it will clear things up for you - one way or the other.

 

[Pangolin]

This is definitely all consistent with Crohn's.

 

[balancesheet]

FCP of 137 is definitely high but not shockingly high. Have they tested CRP? If so what is it?

Capsule camera endoscopy is how my Crohn's was finally diagnosed. Hopefully it will clear things up for you - one way or the other.

Thanks for your reply. I only did it once (10-2021) and it was normal. This is one of the tests my GI Dr. is planning to repeat.

 

[balancesheet]

This is definitely all consistent with Crohn's.

Thanks for you reply - my family Dr. said he is 98% certain this is Crohn's but wanted to have my GI Dr. to confirm.

 

[Stressedmom]

As suggested, your calprotectin is elevated, but not considered that high for Crohn's. However, when Crohn's is just in small intestine, sometimes calprotectin does not accurately reflect the level of inflammation. Capsule endoscopy should give more answers. I'm impressed they do a dummy pill. My son is getting one and they have stopped doing dummy pills for kids where we go for some reason.

So the endoscopy was all normal? No sign of even reflux? Reflux related erosion of the esophagus can cause epigastric pain.

If you don't have more answers with pillcam maybe then get a second opinion. otherwise, if there is inflmmation and they think it's Crohn's, you can treat even non-specific inflammation with Crohn's meds so hopefully you will get relief with meds and then you can get other expert opinions on whether it's Crohn's and you need meds lifelong or if it's transient inflammation or inflammation caused by something else.

 

[balancesheet]

As suggested, your calprotectin is elevated, but not considered that high for Crohn's. However, when Crohn's is just in small intestine, sometimes calprotectin does not accurately reflect the level of inflammation. Capsule endoscopy should give more answers. I'm impressed they do a dummy pill. My son is getting one and they have stopped doing dummy pills for kids where we go for some reason.

So the endoscopy was all normal? No sign of even reflux? Reflux related erosion of the esophagus can cause epigastric pain.

If you don't have more answers with pillcam maybe then get a second opinion. otherwise, if there is inflmmation and they think it's Crohn's, you can treat even non-specific inflammation with Crohn's meds so hopefully you will get relief with meds and then you can get other expert opinions on whether it's Crohn's and you need meds lifelong or if it's transient inflammation or inflammation caused by something else.

Thanks for your reply! I was not able to do pillcam because X-Ray showed blockage with the dummy pill. Next step would be to do an enteroscopy. I actually started Prednisone because I was having symptoms.

BTW, dummy pill was not covered by my insurance and it was $75.

 

[balancesheet]

FCP of 137 is definitely high but not shockingly high. Have they tested CRP? If so what is it?

Capsule camera endoscopy is how my Crohn's was finally diagnosed. Hopefully it will clear things up for you - one way or the other.

Just got my latest blood test results back: ferritin is still low (14) but both CRP (0.4) and ESR (2) were normal.

Inflammatory Bowel Disease Differentiation panel all Negative.

 

[my little penguin]

Inflammatory Bowel Disease Differentiation panel
Is not useful in dx Crohn’s disease
Scopes /imaging /biopsy are the good standard for a reason

 

[balancesheet]

Inflammatory Bowel Disease Differentiation panel
Is not useful in dx Crohn’s disease
Scopes /imaging /biopsy are the good standard for a reason

Understood - next step would be the enteroscopy. Thanks for your reply!

 

[Kannassee]

That's a difficult question sometimes to answer.

Well, Magnetic Resonance Enterography is supposed to be good for detecting IBD.....well as good as the guy who will read it I assume.

Mine was completely normal....it did not detect Crohns or UC, did not detect stricture in distal ileum, said normal anatomy, (they took away my sigmoid colon 2 years ago and left a 2" rectal stump before later doing the anastomosys there, so go figure).

Calprotectin at 137 is not very high, but I have a flare now and it is around 200, but since I am on prednisone the results are not very definitive.

If you get an endoscopy they may look after the ileocecal valve and look into your distal ileum.

I remember reading something once about a single balloon or double balloon endoscopy once that will let them examine the complete small bowel, maybe you can find out more about that.

Even now I am not completely sure if I have UC or Crohns....lots of conflicting info although I have been diagnosed with Crohns.

The pathology report said everywhere UC. .....but UC in distal ileum? My new GI Dr said it looks like Crohns and its consistent with Crohns with ulcers, apthaes in distal ileum around stricture last year.

My Inflammatory Bowel Disease Differentiation blood panel was more positive for mild Crohns but I later found out here in the forum that the results are not definitive.

Before him for almost 30 years it was always it looks like Crohns but it also looks like UC but at the same time it may be...... etc etc etc. Or not, what you have is SIBO. or no what you have is IBS. I knew it was not that one because prednisone brought instant relief.

My new Dr said mucosal surfaces in colon looked normal, but report said everywhere colitis....probably under the microscope its different.

Usually both respond to Steroids.....Crohns does not responds very well to mesalamine of budesonide, but you never know. Sometimes it does it seems.

I got for my Tenesmus/proctitis flare mesalamine supps Canasa.....I was making fun of them, by the way, instant relief, much better than the hydrocortisone supps.

I think it would really be critical to know for SURE if they were going to take away the whole colon of a UC patient with the idea to cure him!!! and create a pouch, that would be curative for a UC patient. If he indeed would have been misdiagnosed with UC, and had Crohns, he may get inflammation in the pouch. That would be a disaster.

So many things are together here.....inmune system, types of bacteria, food, stress etc etc etc.

 

[balancesheet]

That's a difficult question sometimes to answer.

Well, Magnetic Resonance Enterography is supposed to be good for detecting IBD.....well as good as the guy who will read it I assume.

Mine was completely normal....it did not detect Crohns or UC, did not detect stricture in distal ileum, said normal anatomy, (they took away my sigmoid colon 2 years ago and left a 2" rectal stump before later doing the anastomosys there, so go figure).

Calprotectin at 137 is not very high, but I have a flare now and it is around 200, but since I am on prednisone the results are not very definitive.

If you get an endoscopy they may look after the ileocecal valve and look into your distal ileum.

I remember reading something once about a single balloon or double balloon endoscopy once that will let them examine the complete small bowel, maybe you can find out more about that.

Even now I am not completely sure if I have UC or Crohns....lots of conflicting info although I have been diagnosed with Crohns.

The pathology report said everywhere UC. .....but UC in distal ileum? My new GI Dr said it looks like Crohns and its consistent with Crohns with ulcers, apthaes in distal ileum around stricture last year.

My Inflammatory Bowel Disease Differentiation blood panel was more positive for mild Crohns but I later found out here in the forum that the results are not definitive.

Before him for almost 30 years it was always it looks like Crohns but it also looks like UC but at the same time it may be...... etc etc etc. Or not, what you have is SIBO. or no what you have is IBS. I knew it was not that one because prednisone brought instant relief.

My new Dr said mucosal surfaces in colon looked normal, but report said everywhere colitis....probably under the microscope its different.

Usually both respond to Steroids.....Crohns does not responds very well to mesalamine of budesonide, but you never know. Sometimes it does it seems.

I got for my Tenesmus/proctitis flare mesalamine supps Canasa.....I was making fun of them, by the way, instant relief, much better than the hydrocortisone supps.

I think it would really be critical to know for SURE if they were going to take away the whole colon of a UC patient with the idea to cure him!!! and create a pouch, that would be curative for a UC patient. If he indeed would have been misdiagnosed with UC, and had Crohns, he may get inflammation in the pouch. That would be a disaster.

So many things are together here.....inmune system, types of bacteria, food, stress etc etc etc.

Thank you so much for sharing your experience!! This is super helpful. I have to say I am feeling great with just a few days on Prednison (40mg daily).

 

[Kannassee]

Maybe its an stricture?….pain, vomiting?
And the fake capsule could not get thru….