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Could this be Crohn’s Disease?

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Posted 7/19/2023 9:10 PM (GMT 0)
Hey Folks,

I’m
New to this forum, and glad to see people here helping each other out. I am struggling to receive a solid diagnosis so I thought I would post my symptoms timeline, plus a recent colonoscopy result here in order to compare notes.

First of all, I am 38, and I have never had noticeable or repeating GI issues until the summer of 2021 after a year of constant and very high stress and anxiety.

In 7/2021 I started experiencing intermittent diarrhea that would come and go, and became noticeably more gassy and not able to properly digest food.

8/2021 pretty severe watery diarrhea 1-2x a day for a week, then loose or mushy stool following that. Calprotectin of 175

9-11/2021 Clear colonoscopy, MRE, and upper endoscopy. In 10/2021 Calprotectin was at 400. Also very low stool elastase, and low ferritin.

2/2022 iron infusion which resolved low ferritin.

By April of 2022 my symptoms had become better and better, and by May of 2021 I was eating and drinking whatever I liked (minus spicy food) up until this past May.

5/2023 treated a sinus infection with one week of amoxicillin. Diarrhea returned at the end of that week, along with severe fatigue, nigh sweats, and nausea at times.

6/2023 Calprotectin at 220, stool elastase slight low. Symptoms slowly improving over time from watery diarrhea 2-3x a day, loose stool or sometimes solid 1-2x a day. Colonoscopy on 6/29 which found a 2mm ulcer in terminal ileum which was biopsied and came back negative for inflammation. Colon and rectum looked healthy and normal, although a random biopsy of the left colon showed “mild focal active colitis”. Results are below, please note a benign polyp was removed.

FINAL PATHOLOGIC DIAGNOSIS

A. ILEUM, BIOPSY: NO SIGNIFICANT PATHOLOGIC ABNORMALITY.

B. RIGHT COLON, "RANDOM," BIOPSY: MILD FOCAL ACTIVE COLITIS.

C. DESCENDING COLON, POLYP, BIOPSY: HYPERPLASTIC POLYP.

D. LEFT COLON, "RANDOM," BIOPSY: HYPERPLASTIC POLYP.

E. RECTUM, BIOPSY: NO SIGNIFICANT PATHOLOGIC ABNORMALITY.


B. The H&E histologic sections show focal cryptitis, focal crypt
abscess formation, and a patchy increase of chronic inflammation in
the lamina propria. No granuloma, dysplasia, or malignancy is
identified. The focal active colitis pattern of intestinal injury
is characterized by focal neutrophilic crypt injury without
features of ch
ronicity. Focal active colitis does not constitute a
discrete disease. However, this pattern of injury can be seen in
the context of several clinical conditions, which include acute
self-limited colitis, inflammatory bowel disease, medication injury
(including from NSAIDs), ischemic colitis, irritable bowel
syndrome, bowel preparation artifact, and antibiotic-associated
colitis. The changes of focal active colitis are sometimes an
incidental finding at the time of endoscopy and are not invariably
associated with clinical symptoms such as diarrhea.”

I’m wondering what folks here make of this. I have another MRE coming up in August. For the time being I have the option of taking budesonide to treat my symptoms, although my doctor think Crohn’s disease is a stretch diagnosis.

Thanks all for your input.
Posted 7/19/2023 10:45 PM (GMT 0)
The only thing that I would say is, it certainly doesn't seem like Crohn's. Possibly Colitis, but even that doesn't seem definitive based on your current diagnostics. It does seem like you're dealing with some type of inflammation though. You mentioned the use of NSAID's. Did you use or perhaps abuse anti-inflammatory drugs of any kind at one time? This can cause ulcerating along the digestive tract.

Other than that, I think you need to get your GI's overview and treatment plan going forward. I'm sure some others will chime in with advice. Good luck and hope you're feeling better soon.
Posted 7/19/2023 10:56 PM (GMT 0)
@73Monte

Hey there! The pathology report mentioned NSAID’s as a possible reason for “focal active colitis” but I do not use NSAIDs.

I have a follow up with my GI in a couple weeks, and the MRE in early August might give me more answers. I think I am generally concerned that the disease is going to be overlooked. I recently spoke with someone who has had Crohn’s since she was a child, and during her most recent colonoscopy and MRE during a flare, they could not find inflammation. It was only after doing a double balloon enteroscopy that they found inflammation further up in the terminal ileum. I’m concerned that my tests will continue to come back negative despite inflammation hiding somewhere. I guess only time will tell.
Posted 7/20/2023 12:48 AM (GMT 0)
Have you had the stool tests for infectious agents?

Have you had blood test for CRP? Was it elevated?

Did they do any further investigation for the low stool elastase? (Blood tests specific to pancreas, maybe even an MRI of the pancreas, something called an MRCP - magneto resonance cholangio pancreatography).

The mild inflammation in the colon could indicate mild Crohn's disease there, but it's not enough evidence by itself to say for sure that that's what you have.

Diarrhea after amoxicillin is pretty common, but the other signs and symptoms do indicate something is going on.

The upcoming MRE will be telling. The MRE is very good at finding small bowel issues, but it can *sometimes* miss really mild small bowel disease. That's when a capsule endoscopy might come into play. It can find things (small, shallow ulcers on the inside wall of the small bowel) that might get missed in an MRE.

So go with the MRE, and then depending on the results, maybe a capsule endoscopy is appropriate.
Posted 7/20/2023 12:55 AM (GMT 0)
Oh, another question: Any family history of IBD or any other immune mediatated inflammatory diseases (rheumatoid arthritis, uveitis, lupus, psoriasis, etc)?
Posted 7/20/2023 3:21 PM (GMT 0)
@Beave

I have stool tests for many many other possible causes, such as C diff, giardia, vibrio, h pylori and many more. I have had most of them tested for 2-3 times and all have come back normal.

I was told the MRE I had in 2022 was able to see my pancreas and it looked normal. They will be able to see my pancreas in this upcoming MRE as well. My GI has checked my fat absorption levels through a stool test. Normally with a low stool elastase there are also issues with absorbing fats, but my fat absorption is always normal. I will follow up with him about a specific MRI for my pancreas if the MRE doesn’t reveal anything. I have read that Crohn’s can often times be associated with EPI.

I have not had a CRP test. It seems that my GI prefers Calprotectin tests since we suspect the inflammation is coming from my GI tract. What exactly does the CRP test do?

As far as family history, the only person I know of is my Dad who had one bout of Colitis about 40 years ago in his mid 30s that lasted a month or two, and never had a reoccurrence. I am positive for the HLAB27 gene which means I have an increased risk for ankylosing spondylitis. At times I have joint pain in my left hip but other than that I haven’t experienced what I would consider inflammation due to an autoimmune disease (other than very mild psoriasis on my scalp at times). I have been checked in about getting tested for lupus regardless though.

Thanks for all your input and questions!
Posted 7/20/2023 4:32 PM (GMT 0)
My gi does not do the CRP test, it checks for inflammation in the body. A person can have a high number as a result of inflammation in a different area of the body. He uses the calprotectin since it is gut specific, I would not worry about the CRP. I have a lot of arthritis & my number would come back quite high.
Posted 7/21/2023 12:54 AM (GMT 0)
CRP is a non-specific indicator of inflammation, so its usefulness is limited. It can't tell you where the inflammation if if it comes back elevated. But fecal calprotectin has some limitations too - it's better at tracking inflammation in the colon and not as good at picking up inflammation in the small bowel. So often both are measured and interpreted together.

As for the MR and the pancreas, yes, the MRE can see the pancreas, but the MRCP focuses in on the pancreas, liver, gall bladder, and the ducting that connects them to the small bowel. It can sometimes pick up small things not seen in the MRE.

For your scopes (upper and lower), do you know how far they got into the small bowel (the terminal ileum for the colonoscopy and the duodenum for the upper scope)? You mentioned the push enterescopy findings for somebody you know. That happened with me. Upper scopes weren't finding much, but I finally got them to do a push enteroscopy. Just a couple inches past where they would always stop, they found a bunch of small ulcers in my duodenum. And just a few inches from where the colonoscopy stopped in the TI, the capsule endoscopy showed ulcers. So, yes, that kind of thing can certainly happen.

Let us know how the MRE goes and what the findings are. Then go from there.
Posted 7/21/2023 2:14 PM (GMT 0)
@beave

When I had my scopes, the colonoscopy was able to view the TI, and the upper endoscopy was able to look into the duodenum, neither went further than where they usually stop.

I’m wondering, when your scopes missed the inflammation, were you already diagnosed with Crohn’s at that point? And, did you have an MRE that missed the inflammation near the duodenum, and just past the TI?

I’m wondering if I should push for a capsule endoscopy if my MRE comes back normal. My GI so far has been pretty hesitant to give me a capsule endoscopy due to a low risk of it getting stuck. In his mind it seems to be a last resort method. My GI also mentioned that SIBO is known to elevate Calprotectin and lower stool elastase levels. It seems like if the MRE is clear and no inflammation is found, he will want to treat me for SIBO. Another option is trialing the budesonide, and if that helps with my symptoms than we could assume I have Crohn’s.

I’ll let folks know on this thread how the MRE pans out. Thank you!!
Posted 7/22/2023 1:53 AM (GMT 0)
When you say the colonoscopy was able to view the TI, that probably means just the first couple of inches. Same with the duodenum for the upper GI. That's what they always did with me and said it was clear. It was the capsule endoscopy that saw the ulcers in the TI just a little upstream from where they would stop in a normal scope. And it was the 'push enteroscopy' that went a few more inches into my duodenum that saw the ulcers there - the regular upper endoscopy stopped just a little too soon.

As for your question about was I diagnosed already, it's a simple question but hard to answer. It took a LONG time for me to get diagnosed (decades, literally), and even when I was diagnosed (the capsule endoscopy results kind of sealed the diagnosis), I still had IBD specialists questioning the diagnosis, doing their own scopes, finding little or nothing, and then REALLY questioning the diagnosis. This went on and on for years. The questions finally stopped when the push enteroscopy found the ulcers & inflammation in the duodenum (it was the 5th or 6th upper scope I had had, but the first to go beyond where they go in the standard procedure, and lo and behold, they found something).

As for the capsule getting stuck for you, there is a concern for people with potential stricturing. But the MRE should be able to find any strictures (they can miss them but it's rare to miss them). So a person with an MRE that doesn't find a stricture is at very low risk of capsule getting caught.
Posted 7/22/2023 2:40 AM (GMT 0)
Yea I think they were only able to see the first few inches of the TI during the colonoscopy and the duodenum during the upper endoscopy.

That is strange that even after finding ulcers in the TI after your capsule endoscopy GI specialists would still question a diagnosis, why was that?

During all those years did you ever have a MRE? If so did they come back clear, or did they see inflammation?
Posted 7/22/2023 3:24 AM (GMT 0)
Ulcers in the TI are a big clue, but by themselves aren't enough to say for sure that it's Crohn's.disease. Medications can cause it (though I wasn't taking any of the meds known to cause it). Infections can cause it (though I wasn't testing positive for any known infections). Blood flow problems (ischemia) can cause it.

To really say it's Crohn's, they'd want biopsies of the inflamed/ulcerated area. Plus they want "chronicity," meaning it's not just something transient that goes away and never comes back. I had plenty of "chronicity," but it was in different states over several years and doctors would always want to see it for themselves before believing it.

First tests I had were several upper scopes. A couple were clear. Mild inflammation seen a couple of times. Doctor accused me of drinking too much, and when I told him I don't drink he accused me of lying and said he couldn't help me.

A few years later, new GI, CT enterography which showed mild thickening in several bowel loops but well out of reach of where a scope could get.

Then capsule endoscopy - ulcers in TI just out of reach of colonoscopy. Then colonoscopy, then about five MREs and several more colonoscopies, sometimes showing a little, sometimes showing nothing, then the upper push enteroscopy.
Posted 7/22/2023 3:30 AM (GMT 0)
Hey thanks for sharing your experience.
I guess I’m specifically interested in your experience with the MRE’s since that is what I have coming up. You said you had several MRE’s and sometimes they showed something and sometimes they didn’t. Could you elaborate on that? Did the MRE’s show the mild wall thickening that your previous CT-E had found? Or did the MRE’s sometimes come back totally clear, even when you knew there was inflammation/ wall thickening there?
Is the CT enterography better at finding inflammation than an MRE?
Posted 7/22/2023 4:03 AM (GMT 0)
MR enterography an CT enterography are roughly equivalent in their ability to find problems. The most important things between the two are cost, time, and radiation exposure. CT is a little quicker and a little cheaper (though still costly). The radiation exposure is an issue, so they don't want to do too many of them, especially for younger people (because the theoretical increased risk of cancer would show itself decades later). If you're young, they do MR. If you're 60 or older, the risk of cancer 40 years down the road doesn't matter so much, so they'd probably suggest CT instead of MR.

My first one was CT enterography because that's what was available at the time. It was fairly new itself, but MR enterography availability was still a couple years away even at big hospitals.

So my first was CT and it found mild thickening in loops of jejunum and ileum but nothing in terminal ileum, and several enlarged lymph nodes in the region.

Second was MR and it didn't see the mild thickening in loops but did see mild inflammation in terminal ileum.
(Edit to add this: It's probably not that the CT enterography missed the mild inflammation in my TI, or that this MRE missed the mild thickening in loops of my jejunum and ileum, but rather that that inflammation was coming and going and not leaving behind any fibrosis/scarring that would get picked up on a scan.)

Next MR didn't see anything, if I remember right

Next MR might have seen slight inflammation of TI

Next MR didn't see anything.

Post Edited (beave) : 7/21/2023 8:09:37 PM (GMT-8)

Posted 7/22/2023 4:05 AM (GMT 0)
It's worth noting that my situation is rather unusual in how it comes and goes in several different places along my GI tract. My disease is considered fairly mild but widespread along my GI tract (have seen involvement at one time or another in stomach, duodenum, jejunum, ileum, terminal ileum, ascending colon, transverse colon, and descending colon, though none of these areas have been hit especially hard).

Crohn's usually hits a couple of areas (like terminal ileum and one or two segments of the colon), and hits those areas hard and repeatedly, leading to fibrosis over time (scarring) and possible fistula or stricture formation. Mine, on the other hand, is mild, but it keeps moving around and popping up in different places and going away, only to pop up in other places, from my stomach all the way to the end of the colon.

Post Edited (beave) : 7/21/2023 8:11:43 PM (GMT-8)

Posted 7/22/2023 4:20 AM (GMT 0)
Thank you that all makes sense. That is unusual that it “bounces” around for you. I guess in a way that’s a blessing that it is not doing permanent damage by hitting one area repeatedly.

Just out of curiosity, are you on a maintenance med? Or do you only take meds when needed?
Posted 7/22/2023 4:36 AM (GMT 0)
Yeah, my case is weird and unusual, and it made it really tricky to diagnose.

You're right that it's a blessing though that it has stayed mild and hasn't really damaged any one area.

For the first 20 years with no official diagnosis, I was on no meds. Then when diagnosed I tried imuran and then 6mp but I couldn't tolerate either. I did get really sick in 2006 and ended up on IV steroids and then a course of prednisone for a couple of months. I also took a couple of courses of Entocort around 2009 and maybe 2012.

The thing is, even once diagnosed, all the docs would ask about is bowel habits, blood, diarrhea, etc, while I kept complaining of nausea and nigh time stomach aches. They'd do scopes or MREs, not see much, and blow me off. Two years ago was when I "pushed" for the push enteroscopy and they found the duodenal ulcers. No wonder I'd had more upper GI symptoms than lower GI symptoms all along. So I asked to try something new like Entyvio or Stelara. Stelara got approved on the basis that having disease activity in the duodenum is a known risk factor for serious disease (even though my 30+ years of having this say mine isn't severe).
Posted 7/22/2023 5:03 AM (GMT 0)
One other suggestion: Ask your doctor about getting the IBD blood test done by Prometheus Labs (and see whether your insurance will cover it). Some GIs like to use it, while others don't. It tests for a few genes known to be associated with increased risk of IBD; and also a couple of specific inflammatory markers; and also a few specific antibodies known to be associated with Crohn's or Ulcerative colitis.

By itself, it's not considered reliable enough to make a diagnosis, but if it comes back positive for predicting you have Crohn's, then that plus your high fecal calpro plus the findings of your colonoscopy would be enough to make it very likely a correct diagnosis.

You'd still need the MRE to get a better handle on extent and possible location of any inflammation and to decide on any treatment if appropriate, so its value is limited. But it's another piece of evidence one way or the other.

Post Edited (beave) : 7/21/2023 9:12:16 PM (GMT-8)

Posted 7/22/2023 5:05 AM (GMT 0)
https://prometheuslabs.com/disease-tests/ibd-sgi-diagnostic/
Posted 8/4/2023 7:00 AM (GMT 0)
It doesn't sound like IBD to me and your symptoms sound incredibly mild. Have they mentioned IBS or what do your doctors think is going on? A lot of people get diarrhea from antibiotics.
Posted 8/5/2023 1:47 AM (GMT 0)
I had my MRE a few days ago, and results came back normal. My Calprotectin is now at 81, down from 220, and GI symptoms are steadily improving. I was approved for a capsule endoscopy, but decided to hold off on that test for a time when my Calprotectin is higher, in order to possibly better ensure detecting active inflammation. I’d hate to go through all the prep and testing only to have it come back inconclusive due to Calprotectin being low, and inflammation possibly healing.

For now it’s waiting to see how it all unfolds.
Posted 8/5/2023 4:01 AM (GMT 0)
Thanks for letting us know that the MRE came back clear. That's good - but also a bit frustrating I'm sure.

How are your symptoms lately?

For what it's worth, I was feeling fine when I had the capsule endoscopy and it found ulcers in the ileum. On the other hand, I've had MREs come back clear when I wasn't feeling so well. It can be weird some times.
Posted 8/5/2023 4:07 AM (GMT 0)
My symptoms are slowly improving. Day by day. I’m now having more solid normal bowel movements as time goes on, as opposed to loose stool or diarrhea. This also matched up with my Calprotectin dropping from 220 to 81.

I was on the fence about holding off on the capsule endoscopy because I know people can feel okay, but still have active inflammation present. But the change in symptoms improving, and lower Calprotectin made me and my doctor think to hold off until things worsen again.
Posted 8/5/2023 4:14 AM (GMT 0)
Yeah, I think that's a reasonable approach. Hopefully you continue to improve and this never becomes an issue again. But if it does, you'll have a pretty good idea what testing to do.

Did you ask about the Prometheus blood test? I still think that would be worth doing in this case. It might require a little back and forth to get your insurance to cover it, but it's a lot cheaper than continuing to do MREs or capsule endoscopies. And while it's not 100% accurate, it's a good piece of evidence in situations like this where the diagnosis is unclear.
Posted 8/5/2023 4:18 AM (GMT 0)
I haven’t actually, I’m in California and I have Kaiser, where everything is done “in-house” so to speak. It likely wouldn’t get approved. I thankfully have great health insurance though, so the MRE’s and colonoscopy have not broken the bank.

And yes the next time this flares up (which could be weeks, could be another year), I’ll now be approved to for the capsule endoscopy.

Thanks for sharing all of your information and talking with me. This forum is a wonderful resource.
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