Uncertain test results, but high CRP & Granuloma found

[avit2]

Hi everyone,

I'm one of the lucky few (insert sarcasm) who is in the process of a potential Crohns diagnosis. Its' been a very confusing journey so far and I'm hoping for some counsel. I have never had any suspicious symptoms of Crohn's in my life and actually tended to swing the opposite of what most Crohn's patients experience (never had issues with diarrhea- actually had bigger issues being "regular" aka frequently constipated).

What started this entire process was reoccuring stomach pain that happened every time after I ate. It had been on-going for about 2 weeks when I decided to seek medical help. They suspected I had appendicitis but CT scans showed everything was normal other than having a "backed up colon." They sent me home, and roughly 3 days later the stomach pain returned along with a 100-101 degree fever. The fever persisted for about a week and my CRP and ESR levels were then checked by my primary. CRP was 68 and ESR was 28, so they sent me to a GI.

The GI put me on omeprazole, and within 48 hours it controlled my symptoms. No more stomach pain, yay! Because my CRP was so high the GI decided to order a upper endoscopy & a colonoscopy.

The colonoscopy showed 3-4 apthoid ulcers and mild inflammation, all in my small intestine. Biopsies were taken and it came back that I had "one, single focal non-caseating granuloma" and prominent peyer's patches, all in my small intestine. There was also "patchy inactive gastritis" found in my stomach, and "mild active ileitis" found in my small intestine.

Going back to my GI, he informed me that he was 95% sure this was Crohns, but these findings were not obvious enough to end diagnosis there. He ordered a MRI of my stomach which I completed this week, and it came back as a sub-optimal study (aka radiologist wasnt happy with the images) and that there was no sign of disease but *possible* wall thickening of the small intestine.

I'm still waiting for calprotecin results but at this point I'm about to lose my GD mind. It's odd to me that I would have Crohns since I'm very much asymptomatic, but I can't seem to rectify what other reasons would cause me to have these potential indicators.

Basically, is it worth it to treat this as Crohns or should I just assume it's not and call it a day? Any advice is appreciated! I'm BEYOND frustrated at this point for being in the grey still after all these awful diagnostic procedures.

 

[Scipio]

Basically, is it worth it to treat this as Crohns or should I just assume it's not and call it a day? Any advice is appreciated! I'm BEYOND frustrated at this point for being in the grey still after all these awful diagnostic procedures.

Welcome. The granuloma by itself is highly suggestive of Crohn's. In fact some sources consider the diagnosis of Crohn's open and shut if granulomas are present.

While the lack of diarrhea may make your disease more bearable, it does not rule out Crohn's. There are many exceptions in both directions, but as a general trend Crohn's that involves the colon tends to produce diarrhea, while Crohn's that is confined to small intestine tends to generate more constipation than diarrhea. I fall into that category myself. I have ileal Crohn's, and over the years I've had no diarrhea to speak of. But I have had numerous bouts of constipation, especially when the Crohn's was acting up.

So I wouldn't presume to make a diagnosis here. That's for your GI to decide. But IMO your signs, symptoms, and test results certainly do not rule out Crohn's. I'd keep pushing for a diagnosis one way or the other. With a firm diagnosis at least you know which way to proceed with the treatment. And there are many treatment options. But being stuck in the middle with no clear path forward is very difficult.

Good luck and keep us informed.

 

[avit2]

Thank you so much for the quick and thoughtful response! I’ve read similar things about the granuloma being the sure-fire diagnosis for Crohns, so I find it interesting that there is still this uncertainty. And it’s interesting to hear that you have had a similar presentation of the disease. I’m hopeful my calprotecin comes back as more conclusive than these past two tests and I can finally move forward. Will definitely share once I know!

Welcome. The granuloma by itself is highly suggestive of Crohn's. In fact some sources consider the diagnosis of Crohn's open and shut if granulomas are present.

While the lack of diarrhea may make your disease more bearable, it does not rule out Crohn's. There are many exceptions in both directions, but as a general trend Crohn's that involves the colon tends to produce diarrhea, while Crohn's that is confined to small intestine tends to generate more constipation than diarrhea. I fall into that category myself. I have ileal Crohn's, and over the years I've had no diarrhea to speak of. But I have had numerous bouts of constipation, especially when the Crohn's was acting up.

So I wouldn't presume to make a diagnosis here. That's for your GI to decide. But IMO your signs, symptoms, and test results certainly do not rule out Crohn's. I'd keep pushing for a diagnosis one way or the other. With a firm diagnosis at least you know which way to proceed with the treatment. And there are many treatment options. But being stuck in the middle with no clear path forward is very difficult.

Good luck and keep us informed.

 

[Jabee]

I agree with Scipio. I also have small bowel crohn’s and suffer from constipation. Your high sed rate and CRP, the granuloma, and possible wall thickening are all extremely indicative of crohn’s. During my very first flare my only symptom was unexplained severe anemia. An endoscopy found ulcers and a stricture in my duodenum. I had had no pain at all. Definitely push for a diagnosis; better to know for certain and make sure no further damage is being done to your small intestine.

 

[my little penguin]

Disease in the small bowel can lend itself towards constipation
Which does occur with Crohns
Ds was dx at age 7
Definitely constipation which is much worse when flaring
Also non caseating granulomas in his TI

That was 8 years ago
Meds have kept his intestine healthy since
Although after 8 years
Occasionally he has diarrhea just to confuse the GI
His GI does explain Ds to all new fellows so they may learn a “different presentation “ of Crohns

Minimizing inflammation reduces damage risk including surgery as well as cancer risk
Inflamed cells give you a much higher colon cancer risk

Hope they have answers
Definitely get a second opinion
So you can feel better about what your dealing with
Most good GI welcome second opinions
Ours did
Did I mention Ds had constipation and no one expected Crohns as a dx.

Good luck

 

[avit2]

Hi again-

First and foremost: thank you for each of your responses. It's encouraging to feel like there is a solid community that is so eager and willing to help and share. All of the replies have substantially helped me put my disease in perspective.

I got the official diagnosis yesterday. Oddly enough my calprotecin was low, but they did confirm the slight wall thickening in my terminal ileum (where all the other "action" was.. granulomas ulcers etc). I'm extremely hopeful that where my disease is localized will allow me the "advantage" of not suffering the beloved D. I know there may be no way to answer this but how often does Crohns change in its presentation? Am I delusional to think I will remain D free since it hasn't presented that way yet?

In terms of medication, I am trying to avoid biologics unless absolutely necessary. My doctor started me on Lliada yesterday and is willing to avoid Remicade so long as my CRP levels go down in a month. Have any of you had success without biologics or am I risking the chance of my disease progressing by not taking them?

Also, any advice on homeopathic approaches are appreciated. I'm not a 100% crunchy granola anti-pharmaceutical person but I do believe in blending in natural, alternative methods. I'm currently taking curcumin, zinc, magensium, calcium w. vitamin D, and B12. My doctor is supportive of medical marijuana as well, but it's pretty expensive where I live (NYS) so I'm still weighing that as an option.

Again, your advice and counsel is sincerely appreciated

 

[Scipio]

Have any of you had success without biologics or am I risking the chance of my disease progressing by not taking them?

The short answer is maybe yes. Lialda is one of the mildest and weakest IBD drugs available. Some studies show that mesalamine is no better than placebo with Crohn’s. It’s more of a UC drug. So in your case I’d be concerned that the disease might be inadequately controlled and end up progressing to a more severe form of the disease.

There are two main strategies for treat Crohn’s - the old “Bottom Up” and the newer “Top Down” strategies. With bottom up you treat the symptoms. You start with the milder (and often cheaper) drugs first and move up to the stronger (and more expensive) drugs such as biologics only after the milder drugs fail and symptoms return or increase. The top down strategy is to hit the disease with the powerful biologic drugs early with the hope of preventing cumulative damage to bowel and the attendant build-up of scar tissue and risk of serious complications such as stricture or fistula.

Currently, top down is the preferred strategy for moderate to severe disease, and the bottom up is still recommended for very mild disease. Your doc is treating you with the bottom up strategy

When I started out with Crohn’s my disease was very mild. Except for one bout of anemia all I ever had was occasional mild right side abdominal pain. No diarrhea. The Crohn’s was first detected as an incidental finding while looking for something else. My GI started me on occasional short courses of Entocort. Which worked fine for a few years but eventually my disease progressed to moderate expressed as an extra-intestinal manifestation of Crohn’s as severe pericarditis that landed me in the hospital getting heart surgery to remove the inflamed pericardium. So after that the GI put me on Stelara, and I’ve been in good shape since then.

So did my disease progress to something more serious because I spent years treating it bottom up? Probably. Would starting out top down have prevented the damage and the eventual surgery? Maybe. Hard to say for sure.

As for the “natural” or “alternative” therapies, in general I tend to be skeptical of unproven treatments. I’m all for them if they help control the disease or if they make you feel better. I don’t begrudge anyone relief from their Crohn’s, however they obtained it. But I’m for them only when used in addition to, not in place of, conventional medicines. It’s a very risky strategy to embrace unproven treatments in the hope of abandoning proven ones.

So welcome to the Crohn’s club. I wish I didn’t have to say that. I know that diagnosis is certainly not good news. But at least with a diagnosis in hand you now have a path forward. The good news is there are many therapies available these days and more coming all the time. By being engaged with your GI and knowledgeable about your disease there is every hope that you can find the right combination of therapy, diet, and healthy lifestyle that will get you into remission and keep you there for many years to come.

 

[avit2]

Hi- wanted to update this one year later. So, turns out I’ve ended up being a bit of an anomaly. After a year of observation and test results reflecting no active disease (aside from the initial CRP result and granuloma) my home GI believes I have mild crohns. At the start of this journey, he wanted to treat it with immunosuppressants (the newer “top down” approach). He initially put me on 4 pills per day of mesalamine- which he confidently told me would make no difference but was worth testing out in the interim- while they awaited my TB tests and re-checked my bloodwork to see how my CRP was doing. After a month my CRP was completely normal. One would assume the mesalamine was possibly doing nothing and my body just naturally adjusted. This curious reaction to the Mesalamine led me to get a second opinion from a highly regarded doctor at Brigham and Women’s Crohns and Colitis Center. After a thorough review of my scope, MRI, and bloodwork, this Dr felt that it was a mild enough case that we should observe how I do with no medication (assuming I remained symptom free), do a scope in a year and go from there. So, they pulled me from the mesalamine last October and I’ve been essentially symptom free since my initial disease “activation” (absent of some skin manifestations that I speculate *could* be related). I got my 1 year scope results back recently and everything is in tip top shape. No elevated CRP, no ulcers- nothing. Only thing that came back is that same granuloma, except now it’s “poorly formed” aka fizzing out. Although crohns is always touch and go, I truly believe the doc at Brigham was a lifesaver in assessing the severity of my disease and saving me from taking heavy duty medicine when it may not be necessary. He believes I’m a mild case that may stay mild with no interventions. I guess there’s a new term amongst doctors known as “cheap crohns” where some very mild patients may manage their disease with little to no medication. I actually called into the GI session of Doctors radio on sirius (hosted by Dr.Ira Breite of NYU) and he shared that “cheap crohns” is something they do occasionally find, and it is entirely possible to be a mild case that stays mild with no intervention. Definitely not trying to say that medication isn’t necessary for most, but I wanted to share this experience as it showed me there are still some differing opinions when it comes to very mild crohns. So, here’s to hopefully not jinxing myself, and staying mild for a long time to come.

 

[Jabee]

That’s terrific! I am currently in the same situation. Although I have had several flares for which I needed to be hospitalized and being on entocort for five years (which caused osteoporosis) my current GI pulled me off the entocort and we are monitoring my disease activity with scopes and MREs. Although I did have a nasty mouth ulcer that was undoubtedly crohn’s related my current problem is the severe gastroparesis I have developed. I’m having trouble keeping my weight at a healthy level because I have no appetite. We’re hoping a new medication (motegrity) will do the trick.

I hope we both stay “cheap” and do not venture into the “expensive” side of crohn’s!

 

[Lady Organic]

Bravo! Thank you for sharing and keep up the good health!

 

[Scipio]

The "cheap Crohn's" is very good news! Long may it continue to be mild. However, no matter how mild it is I suggest to remain vigilant for any worsening.

I had cheap Crohn's too for over 5 years. Actually, I had it for a long time before that, but it continued for 5 more years after I was finally diagnosed with Crohn's. I thought the disease was going to continue to be very mild for the rest of my life. But eventually the "cheap Crohn's" turned on me and became very expensive - attacking the pericardium membrane around my heart. My gut got worse too at the same time. I ended up have open chest surgery to remove the inflamed pericardium. I am now on Stelara and enjoying a remission of 2 years and counting.

So stay vigilant!

 

[Kaviravani]

Hi- wanted to update this one year later. So, turns out I’ve ended up being a bit of an anomaly. After a year of observation and test results reflecting no active disease (aside from the initial CRP result and granuloma) my home GI believes I have mild crohns. At the start of this journey, he wanted to treat it with immunosuppressants (the newer “top down” approach). He initially put me on 4 pills per day of mesalamine- which he confidently told me would make no difference but was worth testing out in the interim- while they awaited my TB tests and re-checked my bloodwork to see how my CRP was doing. After a month my CRP was completely normal. One would assume the mesalamine was possibly doing nothing and my body just naturally adjusted. This curious reaction to the Mesalamine led me to get a second opinion from a highly regarded doctor at Brigham and Women’s Crohns and Colitis Center. After a thorough review of my scope, MRI, and bloodwork, this Dr felt that it was a mild enough case that we should observe how I do with no medication (assuming I remained symptom free), do a scope in a year and go from there. So, they pulled me from the mesalamine last October and I’ve been essentially symptom free since my initial disease “activation” (absent of some skin manifestations that I speculate *could* be related). I got my 1 year scope results back recently and everything is in tip top shape. No elevated CRP, no ulcers- nothing. Only thing that came back is that same granuloma, except now it’s “poorly formed” aka fizzing out. Although crohns is always touch and go, I truly believe the doc at Brigham was a lifesaver in assessing the severity of my disease and saving me from taking heavy duty medicine when it may not be necessary. He believes I’m a mild case that may stay mild with no interventions. I guess there’s a new term amongst doctors known as “cheap crohns” where some very mild patients may manage their disease with little to no medication. I actually called into the GI session of Doctors radio on sirius (hosted by Dr.Ira Breite of NYU) and he shared that “cheap crohns” is something they do occasionally find, and it is entirely possible to be a mild case that stays mild with no intervention. Definitely not trying to say that medication isn’t necessary for most, but I wanted to share this experience as it showed me there are still some differing opinions when it comes to very mild crohns. So, here’s to hopefully not jinxing myself, and staying mild for a long time to come.
[/QUOTE

The "cheap Crohn's" is very good news! Long may it continue to be mild. However, no matter how mild it is I suggest to remain vigilant for any worsening.

I had cheap Crohn's too for over 5 years. Actually, I had it for a long time before that, but it continued for 5 more years after I was finally diagnosed with Crohn's. I thought the disease was going to continue to be very mild for the rest of my life. But eventually the "cheap Crohn's" turned on me and became very expensive - attacking the pericardium membrane around my heart. My gut got worse too at the same time. I ended up have open chest surgery to remove the inflamed pericardium. I am now on Stelara and enjoying a remission of 2 years and counting.

So stay vigilant!

hi,

I am also diagnosed with mild crohns. I dont have any diarrhea either. I have ulcers in small intestine confirmed by capsule endoscopy. The colonoscopy showed normal terminal ileum and colon. But biopsy shows chronic active ileitis without granuloma. Currently, I am on budesonide. I just wanted to see how you are doing so far without medication.