Is this really Crohn's? Asymptomatic

[WAdesert]

I've been recently diagnosed with Crohn's disease but have NEVER had diarrhea, or constipation, or loss of appetite, or fever, or fistulas, or fever, or fatigue, or mouth sores, or low energy, or weight loss, or nausea. I have had epigastric cramping and vomiting, though very rarely - maybe once or twice a year.

I question if I have Crohn's but GI is convinced after ulceration and two strictures were found in the mid small bowel. He wants to start me on Humira and azathioprine. The second opinion GI said I have NSAID enteropathy and says I need a resection.

I don't know who to believe. Is anyone out there virtually asymptomatic? I don't mean while in remission - I mean always and forever.

 

[theOcean]

I've been recently diagnosed with Crohn's disease but have NEVER had diarrhea, or constipation, or loss of appetite, or fever, or fistulas, or fever, or fatigue, or mouth sores, or low energy, or weight loss, or nausea. I have had epigastric cramping and vomiting, though very rarely - maybe once or twice a year.



I question if I have Crohn's but GI is convinced after ulceration and two strictures were found in the mid small bowel. He wants to start me on Humira and azathioprine. The second opinion GI said I have NSAID enteropathy and says I need a resection.



I don't know who to believe. Is anyone out there virtually asymptomatic? I don't mean while in remission - I mean always and forever.

Some people absolutely are asymptomatic, yes. Crohn's is very individualistic, so it manifests differently for everyone and this is one of the known ways it affects certain people -- by being pretty much undetectable.

Humira or Azathioprine are great medications for keeping things controlled. I'm unfortunate enough to get almost every symptom of Crohn's and have a very severe case, and am on a combination treatment of Humira and 6mp and it successfully keeps me healthy.

 

[Clash]

If I had two GIs saying two different things I would go for a third opinion. Have you been using or overusing NSAIDs?

There are members who are asymptomatic, my son is and while not in remission but initially he was experiencing symptoms. Then came dx, treatment and surgery but after the start of treatment he no longer exhibited outward symptoms so imaging and tests told the true story.

I would choose a GI that specializes in CD at a known IBD clinic and get his opinion. If it is CD then those meds are a good choice but if it isn't then I would want to know I was making the right choices based on the best information available.

 

[Jewbs]

I've never had (uncontrollable) diarrhea, or most of the other symptoms associated with Crohn's in the 13 years that I've been diagnosed with it. My symptoms have been limited to a few ulcerations, bouts of acute pancreatitis, and most recently strictures.

 

[WAdesert]

If I had two GIs saying two different things I would go for a third opinion. Have you been using or overusing NSAIDs?

There are members who are asymptomatic, my son is and while not in remission but initially he was experiencing symptoms. Then came dx, treatment and surgery but after the start of treatment he no longer exhibited outward symptoms so imaging and tests told the true story.

I would choose a GI that specializes in CD at a known IBD clinic and get his opinion. If it is CD then those meds are a good choice but if it isn't then I would want to know I was making the right choices based on the best information available.

Thanks for the advice. Right after getting home from the diametrically opposite second opinion, I made an appointment with a 3rd GI. It's two months out - in February but that's as soon as I could get in. This guy is closer to home. He's not an IBD expert, whereas the other two are (both are 300 miles RT from home). I figured if the two experts were so different, I'd see what a non-expert has to say.

I have used NSAIDs though I don't think overused. That's one of the questions I wish a GI would answer - how much is overuse? I characterize my use as moderate. I've quit them all since this whole mess started in May with the iron deficient anemia diagnosis and occult blood in my stool.

Since I'm having no symptoms, and never have had except some random epigastric cramping, I'm not in a rush to start any medications or have surgery. It took them seven months to rule out cancer - which is what I was originally told when the first CT came back with swollen lymph nodes and a soft tissue mass in the mesentery. I can wait a few more months.

 

[WAdesert]

I've never had (uncontrollable) diarrhea, or most of the other symptoms associated with Crohn's in the 13 years that I've been diagnosed with it. My symptoms have been limited to a few ulcerations, bouts of acute pancreatitis, and most recently strictures.

Your story sounds the most like me - absent the diarrhea. What symptoms do you have with the pancreatitis? Most of what happens to me mirrors that condition but I've had multiple negative lipase & amylase tests so no one thinks it's that. Of course they aren't taking my blood close to the time I have the "attacks".

Do you take any medication or had any surgery?

 

[WAdesert]

Some people absolutely are asymptomatic, yes. Crohn's is very individualistic, so it manifests differently for everyone and this is one of the known ways it affects certain people -- by being pretty much undetectable.

Humira or Azathioprine are great medications for keeping things controlled. I'm unfortunate enough to get almost every symptom of Crohn's and have a very severe case, and am on a combination treatment of Humira and 6mp and it successfully keeps me healthy.

Sorry you have such a hard time with the disease. :stinks: I feel so blessed to be well even though they tell me I'm sick.

It helps to know there really are asymptomatic people out there besides me. It makes me somewhat believe the doctors a little better. I've been in denial because I don't feel ill. If I start Humira, the injection site reactions and burning described with the medication will be worse than anything I have day to day.

I've seen the images from the Pill Cam so I know there are ulcers in there. There are also some weird areas that even the doctor couldn't identify. The Pill Cam hung up for a while and when the DBE found two strictures, that made sense.

So I know my gut isn't normal but the location of my problems - right in the middle where it changes from the jejunum to the ileum isn't typical either. The DBE even suggests the first stricture is in the jejunum and the second, which he didn't go through is in the ileum.

I keep telling all these medical people that I know what I have. I suffer from O.D.D. I'm odd!

 

[Catherine]

We started treating daughter for low iron as 12 year old, there were no GI symptoms.

By 14 years it developed into iron deficiency anaemia. She would have periods to severe pain time once or twice a year.

At 16 the anemia had worsen, we tested for thalassemia both types. In a two month period she lost 14kgs and was in pain all of the time. They did a colonscopy looking for cancer, they dx Crohn's. She has never had bowel symptoms.

She is now 19.

 

[David]

You mention the CT scan but have you had a colonoscopy with biopsies?

 

[xmdmom]

If you stopped NSAIDS a while ago, I would think continued evidence of acute inflammation would point to Crohn's. When was the pill cam and CT in relation to stopping the NSAIDs? Have you had a sed rate or CRP?

 

[WAdesert]

I've taken maybe a half dozen Ibuprofen since May so essentially I stopped them in May. But all but one of the doctors tell me that my use wasn't enough to cause any bowel damage. It was usually 200mg, occasionally 400mg, and a few times 600mg daily in most of 2013. Prior to and since then usually 200mg every other day. I didn't stop the low dose aspirin until Nov 7.

The pill cam was on Sep 3. The "regular" CT was on May 21. The two CT enterography were on Sep 12 and Dec 3. SBFT Oct 3. Except for the pill cam, all the above didn't show inflammation. Two radiologists looked at the CT's. Only the third CT made any mention of bowel wall thickening (The strictures I presume). The 2nd CT even said no evidence of IBD or inflammation yet it was done right after I'd had the pill cam which even a layman can see is abnormal.

The CRP and sed rate are completely normal. The CRP was 4mg/L on Oct 10 and 5.7mg/L on Dec 10. It wasn't checked previously. The sed rate was 10mm/hr on Dec 10. It wasn't check previously.

The labs I had yesterday didn't include either the CRP or sed rate because the hematologist was interested in the IDA. All my iron levels are normal except the hematocrit which is slightly elevated at 46.5%. I do take 325mg ferrous sulfate (65mg elemental iron) twice a day. That resolved the anemia within two months of starting.

I did have a colonoscopy and EGD. All parts of the colon into the terminal ileum were normal so no biopsies taken. There was mild redness in the duodenum. Biopsies in the duodenum and stomach indicated mild gastritis, no inflammation.

The only marker that shows inflammation is the fecal calprotectin done Dec 12 which was 210.

Hence - the reason I don't what to do or who to believe.
I keep telling them I don't have IBD - I have ODD - I'm simply odd!

 

[xmdmom]

Do you know the normal limits for the fecal calprotectin?

Bowel thickening and stricture may not be the same. With stricture, images may show dilation before the stricture and then narrowing. Bowel thickening can be inflammation or fibrosis, I think.

This report about capsule endoscopic findings in NSAID users might be of interest http://www.sciencedirect.com/science/article/pii/S1542356504006032
Apparently small intestine ulceration is quite common with NSAID use.

 

[David]

Am I correct that your only symptoms have been very occasional cramping and vomiting once or twice a year?

Were they able to determine how severe the stricturing is? Obviously the pill cam got through ok so it's not severe.

Based upon everything you've described I personally would be wary of starting azathioprine or humira at this point. Just me though.

 

[WAdesert]

Yes, my only symptoms are as you describe. I started this discovery odyssey because in May of 2014 my routine blood work showed me severely iron deficient anemic. It had been completely normal exactly one year prior.

There were two strictures observed during the DBE. The report didn't say how big the first, but the second was reported at 5mm interior diameter. The capsule stopped for a while, but eventually moved on. The capsule is 11mm. The doctor stopped at the second stricture so there's no idea if there are more.

The normal value of calprotectin is 50 or less. Since the DBE showed strictures, the only thing that did, I know those are there. The thing is, like you observe, my scans don't show dilation or narrowing. So how will I ever know if anything is working.

I tried the link you sent, but it didn't work. But I have read several other articles on the national institute of health US national library of medicine site that described NSAID ulceration, some in people who'd only ever used low dose aspirin.

I'm definitely wary of starting the medications - more the pred that anything else. Well, that's not really true, but of the aza or pred, the steroid is more obviously going to have side effects. I don't think my insurance will approve the Humira as I've not "failed" at other treatments. In my situation, the Humira seems like over kill even if I have Crohn's.

 

[my little penguin]

Taking nsaid even low dose every other day can cause damage ....
Example
Ds was dx at age 7 with crohns
At age 10 he was dx with juvenile spondyloarthritis associated with Ibd in his hands .
To reduce the inflammation in his joints his Rheumo placed him on low dose mobic .
Gi stipulated no more than 3 doses within a week to keep his gut good.
Two weeks with a total of 4 doses - severe abdominal pain and bloody diarhea ( not his usual signs)-- it took 5 weeks to get back to baseline.

Being off NSAIDs means just that no nsaids at all.
If you were completely off NSAIDs for months prior to the scopes ... Crohns would be higher on the list.
Also why no biopsies of the lower Gi tract .
Ds lower scope at dx looked visually normal
Thankfully the Gi still took biopsies.
Multiple areas of chronic and acute inflammation were found as well as granulomas.

Fwiw Ds bloodwork is always within normal limits even if he is flaring .

Good luck

 

[WAdesert]

Taking nsaid even low dose every other day can cause damage ....


Being off NSAIDs means just that no nsaids at all.
If you were completely off NSAIDs for months prior to the scopes ... Crohns would be higher on the list.

Also why no biopsies of the lower Gi tract .
Ds lower scope at dx looked visually normal
Thankfully the Gi still took biopsies.
Multiple areas of chronic and acute inflammation were found as well as granulomas.

I have given away all my NSAIDs - not that I was tempted to take the Ibuprofen again once the pill cam showed inflammation in Sept. I kept taking the aspirin for another two months because I'd always been told "it wasn't enough to matter" as late as my GI appointment on Oct 10 - until my GP finally said to stop on Nov 7.

It's...well...not comforting that your son had such a severe reaction to the NSAIDs..but comforting to know I'm not crazy to think it could be that. The one GI doctor thinks it too. If I understand your comment correctly, once off the NSAIDs the inflammation starts to heal? Is that what you meant?

I've been wondering if the inflammation has to be treated with medication or surgery regardless of what caused it. In other words, does it matter why I have inflammation and strictures? I've not had another GI appointment since this contradictory diagnosis to ask that question. My next visit with a GI (actually back to the 1st of the 5 this year) isn't until February.

As for why no biopsies of the lower GI - probably because the colonoscopy was the first internal test done (one CT prior to it that pointed strongly towards cancer (since disproved) - not IBD) looking for the cause of the occult blood that was causing the anemia. IBD and inflammation was on no one's radar back then. No symptoms to make anyone think of that and since nothing showed up visually, no reason to take samples.

The biopsies done in the area of the two strictures in the small bowel did not show granulomas. I was told "they are there - they were just missed in the sample taken". Maybe...but how do I know?

Thanks for all the information and helpful questions that gives me more to think about.

 

[WAdesert]

They did a colonscopy looking for cancer, they dx Crohn's. She has never had bowel symptoms.

What was found in the colonoscopy that allowed them to dx Crohn's?

 

[Catherine]

What was found in the colonoscopy that allowed them to dx Crohn's?

Visually the colonscopy look like Crohn's at the end of the ileum. The pictures we saw showed lots of blood. She started treatment 10 days later when biopsies showed chronic inflammation. MRI also showed thickening of the small bowel.

 

[WAdesert]

This report about capsule endoscopic findings in NSAID users might be of interest http://www.sciencedirect.com/science/article/pii/S1542356504006032
Apparently small intestine ulceration is quite common with NSAID use.

I finally got into the article referenced by the link above.

WOW! This sounds so much more like me than Crohn's.

It then led me to a myriad of other articles specifically about low dose aspirin use and small bowel mucosal damage. Unfortunately, none of them said how to heal the erosions and ulcers. Many were studies on how to prevent the aspirin damage in the SB while still allowing aspirin use to continue.

This reading tonight has given me a better direction on what I want to do and what I want to say to the doctors. I even found some pill cam pictures in one of the studies and while they don't look exactly like the pictures of my pill cam study, they are somewhat similar.

I'm not so scared about doing nothing now. If I have Crohn's, that really isn't an option. But if it's NSAID damage, and especially the aspirin I've taken for 30+ years, maybe all I have to do is stop taking it - which I did about 2 months ago.

I can't thank everyone enough that has responded and helped me. I feel more at peace than I have in weeks.

 

[xmdmom]

I would want to know about the strictures. What risk do they pose for obstruction?

Diaphragm-like strictures are said to be pathognomonic for NSAID enteropathy; do you know if your first doctor saw something like that? http://www.jscimedcentral.com/Orthopedics/orthopedics-2-1011.pdf

You wrote "The biopsies done in the area of the two strictures in the small bowel did not show granulomas."

In terms of granulomas, many biopsies in Crohn's don't find granulomas.

I wonder if a specialized pathologist could review the biopsies and give an opinion.

 

[David]

There were two strictures observed during the DBE. The report didn't say how big the first, but the second was reported at 5mm interior diameter. The capsule stopped for a while, but eventually moved on. The capsule is 11mm. The doctor stopped at the second stricture so there's no idea if there are more.

Hmm, that's a pretty small diameter. Like xmdmom, my concern would be about the potential risk associated with these. The answer to that is well beyond my level of knowledge.

 

[WAdesert]

Hmm, that's a pretty small diameter. Like xmdmom, my concern would be about the potential risk associated with these. The answer to that is well beyond my level of knowledge.

Yeah, the second is very small. I've tried to find out the "normal" diameter of the small bowel, but had little luck. My only symptoms are indicative of obstruction, i.e. crampy pain that is relieved by vomiting. The cramps often come in waves - in time with the peristalsis I believe. One doctor even said, "You have all the symptoms of an obstruction, but nothing shows up on the scans."

I did ask one of the doctors how the 11mm pillcam got through the 5mm stricture. He said think of it like a rubber glove - it expands when something big is in it, then contracts back after it is removed, or in this case, passes through.

 

[WAdesert]

I would want to know about the strictures. What risk do they pose for obstruction?

Diaphragm-like strictures are said to be pathognomonic for NSAID enteropathy; do you know if your first doctor saw something like that? http://www.jscimedcentral.com/Orthopedics/orthopedics-2-1011.pdf

You wrote "The biopsies done in the area of the two strictures in the small bowel did not show granulomas."

In terms of granulomas, many biopsies in Crohn's don't find granulomas.

I wonder if a specialized pathologist could review the biopsies and give an opinion.

You ask such good questions. Thanks so much for the insight.

Of course the biggest issue the GI's bring up is the danger of complete obstruction. The one who thinks it's NSAID enteropaty and recommends surgery said the strictures won't be healed by medication. The one who says it's IBD and recommends meds didn't address that (and I didn't think to ask at the time). He's the one who gave the rubber glove analogy.

I wish I knew what kind of strictures the GI who did the DBE saw (not one of the two above). I didn't know enough back in October when that procedure was done to know there were different kinds of strictures. I saw the guy for maybe five minutes after I'd come out of general anesthesia when he gave me the information that I have constrictions and ulcers and he'd taken biopsies and tattooed the strictures so they could be found by the surgeon. Then in walks the surgeon he'd asked to come talk with me about cutting that section out immediately. The GI guy left.

After I was home I came up with all kinds of questions for the DBE GI guy, some very specific about the nature of the strictures. Not the form as I knew nothing about NSAID enteropathy at the time, but just were they elastic, rigid, swollen, etc. Why did he stop at the second stricture? I couldn't get an appointment to see him until Dec 9. That was one day before I was scheduled to see the IBD specialist so didn't make the appointment with the endoscopist. I figured it would be a waste of time because he wouldn't remember what he'd seen two months prior. I didn't, and still don't know if they store images of the exam.

Now that I know a lot more, I've thought about making an appointment with the GI who read the pillcam (not the same as any of the 3 above). I don't know how long they keep those images, nor do I know if any strictures were seen - he didn't mention it in his report. He did note that the camera hung up for a while but eventually moved on. Now we know why.

The GI appointment I have in February (with the 1st GI I saw-the one who did the colonoscopy & EGD) is to get a third opinion on diagnosis and how to treat the strictures and ulcers. Those hadn't been found when I saw this guy in June. I didn't see him after the procedures he did in July. He's not an IBD expert but maybe that's what I need - someone to look at the data without a preconceived notion of what it is.

I've often wondered whether one can get a second opinion on "tissue" removed, i.e. a different pathologist looking at it. I've never pursued it.

 

[my little penguin]

Ds has had multiple biopsy slides re read by a different patholoist at a different hospital plus three Gi second opinions.
Most save images of all tests in your medical file electronically- the radiology department can burn you a cd, pathology will send your slides to whatever hospital you request.
All pathology reports as well as scans mre scope reports blood work can be obtained at the medical records department -just fill out a form and they will make you a copy.
Some charge a fee unless it's for a second opinion.

Good luck

 

[CavsFan]

Any update on this forum?

 

[eleanor_rigby]

Any update on this forum?

He had cancer, not Crohn's.