Do I really have Crohn's?

[prettyflowers]

Do I really have Crohn’s?

I am skeptical of a recent Crohn’s diagnosis. I’m basing my skepticism on lack of symptoms and from my pathology report from upper endoscopy.

My only symptom has been off/on diarrhea in the last year. No pain, no bleeding to naked eye. Clear colonoscopy.

I have had elevated calprotectin.
I have had an upper endoscopy reveal ACUTE ulcers/erosions in jejunum (please read the underlined report findings below).

Here is how this started and the tests I have had:

-I am 50 years old and suddenly developed diarrhea out of the blue a year ago. This went on daily for approx 6 weeks. Before this, I had always had normal BM’s (which is typically 1-2 times/day formed stool for me) and have never had any intestinal issues ever.

-Finally got into see general practitioner. Labs = Calprotectin 296; Lactoferrin = positive; occult blood stool = positive; negative for parasites/infections

-Note that diarrhea subsided on its on own around 6 weeks and normal formed BM’s returned

-General practitioner referred me to local gastro based on high calpro. Local gastro doctor performed colonoscopy. Official results = All observed locations appeared normal, including the terminal ileum and entire colon. Performed random biopsy using biopsy forceps. Random biopsies were completed throughout the colon to evaluate for microscopic colitis. One 2 mm polyp in the proximal ascending colon; performed complete removal by cold forceps biopsy One 4 mm polyp in the sigmoid colon Small, internal (grade 2) hemorrhoids. Biopsies of the polyps and colon were negative or normal. This is great and means there is no inflammation, infection or other pathologic change. Please follow up in clinic as planned.

-Been absent of diarrhea for 6-7 weeks (occasional loose stool over that time period, maybe 2-3 times?)

-3 month follow-up to Local Gastro Dr as planned - calprotectin = 92 (still absent of diarrhea, one softer stool 1-2 times a week but mostly always formed stool 1-2x/day); Local Gastro Dr suggests camera pill to be sure I don’t have an IBD base on the previous elevated calprotectin and previous diarrhea. Official findings from camera pill: Multiple areas of small punctate ulcerations in the jejunum. -Normal ileum. -Unprepped colon. -Normal small bowel transit. Findings suspicious for mild mid small bowel Crohn's disease. No overt stricture. - Consider treatment, especially if diarrhea is ongoing.

-Diarrhea returned about a week after camera pill and Calprotectin=817

-The Local Gastro Dr gave diagnosis of possible mild crohn’s in the jejunum only; prescribed 8 week taper off Entocort (budesonide)

-Diarrhea subsided 3 weeks into take the Entocort

-I decide to seek 2nd opinion with a Gastro Specialist at larger hospital; 2nd Opinion Gastro Specialist at larger hospital is not 100% positive of Crohn’s since diarrhea subsided at one point without steriod/medical intervention and isn’t sure Entocort would have made much of a difference when I was prescribed it since my ulcers are in jejunum; decides to do an upper endoscopy. Results of Final Pathologic Upper Endoscopy: Small intestine, jejunum, biopsy: - Nonspecific acute duodenitis and enteritis with erosion - Negative for granulomas or viral cytopathic changes As the senior physician, I attest that I: (i) examined the relevant preparation(s) for the specimen(s); and (ii) rendered or confirmed the diagnosis(es). Note: The findings are nonspecific and can be seen in medication induced injury (e.g. NSAIDs), infections, peptic injury, among others. Microscopic Description: The biopsy shows multiple fragments of small intestine mucosa some with Bruner's glands, consistent with duodenal mucosa. A mild to moderate acute inflammatory infiltrate is seen with associated reactive changes and focal erosion. No granulomas, viral cytopathic changes or definite chronic architectural changes are seen.

-This 2nd opinion Gastro Specialist at larger hospital decides to refer me to an IBD Specialist at same hospital because the pathology findings of my upper endoscopy indicate acute and NOT chronic.
-5 months later I get into the IBD Specialist that the 2nd opinion Gastro Specialist refers me to and he diagnoses me with Crohn’s right on the spot based off the upper endoscopy (results a above) that was taken 5 months earlier. He is recommending biologic (insurance pending approval).

Again, here is why I am skeptical. I have no pain or bleeding. Occasional loose or soft stool. It’s my understanding that the location of my ulcers/erosions are ISOLATED to jejunum (maybe some in duodenum too?) and that this is an uncommon location/portrayal of Crohn’s. Plus, my ulcers/erosions indicate ACUTE, not chronic.

Two of the doctors had asked me about taking NSAIDS. I did take ibuprofen periodically off and on for short periods (a week or two here and there at 200 mg, and then 800 mg if I would have a migraine once or twice a month). (I no longer take ibuprofen now that I’ve learned it’s not good for the intestines). Couldn’t this have caused my issue? The doctors seem to think it would have cleared in a few months without medication if that was the cause and not have shown up on my upper endoscopy. (I had last taken ibuprofen 3 months before upper endoscopy).


What would you do? What are your thoughts? I would love them. Thank you in advance so, so much!

 

[my little penguin]

You can have crohns just in the upper intestine or mouth or anywhere from the mouth to the anus
Lack of symptoms on the outside don’t mean the inside is “ok” given your multiple tests findings more than once inflammation

you have seen three Gi docs including an ibd specialist who all agree you have crohns

if they didn’t think it was crohns they would not give you the dx

my child has a weird crohns presentation (constipation ,rectal prolapse etc..)
But has been dx with crohns -got two second opinions maybe three at this point
At one time they changed it to working dx of crohns (meaning it was probably crohns but they were still searching for clues )
Another colonoscopy showed inflammation again so back to crohns official dx

crohns can wax and wane on its own
My kiddo has had it for 12 years now
And been on biologics for 11 years
He has mild crohns
but moderate juvenile arthritis

you can get a fourth opinion and another colonoscopy /MRE /pill cam before starting meds

 

[Scipio]

Have you been tested for celiac disease? The upper GI location of the lesions tells in favor of either NSAID exposure or celiac, but you had been off the NSAIDs for a good long while (should have healed), and the highly-elevated calprotectin is not consistent with celiac. Plus, the pathologist would have almost certainly recognized celiac lesions if they were seen. Moreover, jejunal Crohn's is unusual but not unheard of.

Overall, it sounds to my non-physician ears like probably Crohn's disease with a somewhat unusual presentation. Plus, random strangers on the internet (we) are probably not going to be able to assess the situation more accurately than your GI specialists who are on the spot and looking at the totality of the disease picture.

So I'd say follow your GI's advice and treatment plan and see if that works. Keep an open mind for other possibilities as you proceed, but you are paying your GIs for their special expertise. Might as well give it a shot first before trying other less-likely diagnoses and therapies.

 

[prettyflowers]

Have you been tested for celiac disease? The upper GI location of the lesions tells in favor of either NSAID exposure or celiac, but you had been off the NSAIDs for a good long while (should have healed), and the highly-elevated calprotectin is not consistent with celiac. Plus, the pathologist would have almost certainly recognized celiac lesions if they were seen. Moreover, jejunal Crohn's is unusual but not unheard of.

Overall, it sounds to my non-physician ears like probably Crohn's disease with a somewhat unusual presentation. Plus, random strangers on the internet (we) are probably not going to be able to assess the situation more accurately than your GI specialists who are on the spot and looking at the totality of the disease picture.

So I'd say follow your GI's advice and treatment plan and see if that works. Keep an open mind for other possibilities as you proceed, but you are paying your GIs for their special expertise. Might as well give it a shot first before trying other less-likely diagnoses and therapies.

Hello. Thank you for replying. I was tested for celiac disease. However, I had been eating a low carb/keto diet (to try and shed some unwanted pounds) when it was suggested I get tested.

Because of this, my doctor asked me to start eating two pieces of white bread/day for the next ten days (that was when I was coming in next for blood work). I happily introduced more carbs than the two pieces of white bread/day he suggested but sometimes I wonder if ten days was enough time to test properly. That aside, I don't seem to notice a difference in loose stool on days I eat carbs vs. not which leads me to believe that celiac disease is doubtful for me.

My TTG IgA test results are below, which I believe is the celiac test and I suppose means I don't have any issues with gluten.

• < 0.1 Units/mL
  Reference Range:0.0 Units/mL - 6.9 Units/mL

I will take your advice and and follow my GI's advice. I am planning to ask him if I could have one more test (pill cam) to support the diagnosis to make me feel better before being prescribed a biologic. If a pill cam were to still show I had ulcers/erosions, I would be convinced of the diagnosis (it's been 7 months since I had my one and only pill cam). If he won't agree, maybe he will consider checking my calprotectin levels again. If it still shows that I have inflammation, that would probably be enough for me to feel more comfortable being prescribed a biologic.

I hope I don't seem non-compliant. I just want to be sure I truly have the disease first.

Thank you again for you non-physician input. I'm truly appreciative.

 

[prettyflowers]

You can have crohns just in the upper intestine or mouth or anywhere from the mouth to the anus
Lack of symptoms on the outside don’t mean the inside is “ok” given your multiple tests findings more than once inflammation

you have seen three Gi docs including an ibd specialist who all agree you have crohns

if they didn’t think it was crohns they would not give you the dx

my child has a weird crohns presentation (constipation ,rectal prolapse etc..)
But has been dx with crohns -got two second opinions maybe three at this point
At one time they changed it to working dx of crohns (meaning it was probably crohns but they were still searching for clues )
Another colonoscopy showed inflammation again so back to crohns official dx

crohns can wax and wane on its own
My kiddo has had it for 12 years now
And been on biologics for 11 years
He has mild crohns
but moderate juvenile arthritis

you can get a fourth opinion and another colonoscopy /MRE /pill cam before starting meds

Thank you so much for replying. I really appreciate your input. I've never been on a forum/message board so it was a big step for me to get on here and reveal my medical issue to the public (even though it's anonymous, lol).

I guess I was thinking that since the pathology report indicated that my ulcers/erosions are acute (vs. chronic) and it also said they my ulcers/erosions could be caused from medication induced injury(NSAIDS), infections, peptic injury, among others, that this might have meant that I did not have Crohn's. I was hoping there might be someone who was similar to my situation and might say whether or not they ended up having Crohn's too (or not!) based on similar findings.

I will follow the recommendation of biologics if I know for certain I have Crohn's because it's my understanding it is a progressive disease. I just want to know that I know. The doctor is suggesting we try Skyrizi. They are in the process of checking with my insurance. I think I will ask if I can try another pill cam first before starting a biologic. If he doesn't agree to this, maybe I'll even ask for another calprotectin test. If it were to be elevated, I think that would be enough for me.

May I ask if your son's biopsies ever indicated whether he had ulcers or erosions and if so did they indicate if they were acute or chronic? Also, thank you for pointing out that Crohn's can wax and wane ON ITS OWN. I have been wondering that and could not find an answer anywhere. I knew it could wax and wane but I didn't understand if that meant people were having flares while taking medications or if it meant that this could happen UNMEDICATED too. This is helpful for me and I suppose could be supporting evidence on why I have occasional loose stool vs continual. I was thinking that if it were truly Crohn's it wouldn't go away without meds.