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I don't believe I have Crohn's

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Crohn's Disease
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Posted 12/15/2008 2:00 AM (GMT 0)
I am a 50 year old moderately obese but very active man. This year while undergoing my first colonoscopy, the doctors found 3 ulcerated places in my lower small intestine. He called it my illium (sp?). I went in for two blood tests that came back negative. They then gave me a GI series and that came back negative. My next test was the capsule camera that you swallow and that only showed the 3 ulcerated places that we knew about. Still, the doctor has diagnosed me with Crohn's Disease. I hope it is not just a state of denial but I cannot believe that I have Crohn's Disease.

First, I have no symptons. No diarrhea, No weight loss, No blood, No irregularity and two days after my diagnosis I rode a bicycle 105 miles with no issues. It's just hard for me to believe that I have Crohn's. They have placed me on a medication called Asocol 400MG to treat the ulcers. The only tests that they have told me were abnormal was the 3 ulcers they showed me and a blood test that showed slightly high liver enzymes. I have had that condition for years.

 

Has someone else had a similar experience or should I get additional testing by another doctor?

Posted 12/15/2008 2:05 AM (GMT 0)
Have you asked the doctor if its just because of the three ulcerated places that they've diagnosed you with Crohn's? 'Cause... that doesn't sound right... I mean... I think there are other ways you can get ulcers besides Crohn's....
Posted 12/15/2008 2:08 AM (GMT 0)
That's what I am thinking. I am Diabetic and I have been on aspirin for over 5 years as preventative medicine. Even the doctor originally thought it might be medicine related. Like I said, it may just be denial because I fear such a cruel disease as Crohn's. I go in for my initial consultation on December 29th. If someone can help me list the right questions for the doctor I would appreciate it.
Posted 12/15/2008 2:09 AM (GMT 0)
Well. Most GIs will first use tests to make sure that they eliminate everything else first. But Crohns is pretty much visible during colonoscopies. At least that's what I've read. Also, its not a death sentence. You probably have had this for a long time (if indeed you do), and either way, the Asacol will only aid your ulcers to heal. Also, ileum. I have higher liver enzymes also. If you're absolutely just not believing your current GI, find a new one at a different hospital to be positive. Just know that it means another colonoscopy and/or other fun fun tests.

There are low and moderate and high Crohns symptoms. With any luck, if you do have it, then its just a low level of disease in your ileum. It usually works like this: we go along and then start feeling a little sick. visit doc and no idea. blah blah until a few months and tons of weight loss and much vomiting or whatever else later; you learn you have Crohns. So if nothing else, if indeed you do have the disease, then you're lucky the way you learned of it.
Posted 12/15/2008 3:20 AM (GMT 0)
I wonder if they found polyps in your colon as well because I don't get why he'd give you asacol to treat the small intestines when it's used for the colon...infact I'm surprised he put you on anything considering you don't have any CD symptoms.

Maybe you don't have any symptoms because you're right at the beginning stages of the disease, hard to say but I sure hope it stays well for you.

:)
Posted 12/15/2008 3:21 AM (GMT 0)
A second opinion is always good :). If I were you, I would get a 2nd opinion. If you do have Crohn's, then it is very good to catch it @ the beginning!!! Good Luck and keep us all posted! Brittany
Posted 12/15/2008 4:13 AM (GMT 0)
The prep you use for a colonoscopy can cause ulcers as well. I hope it is not crohns but if it is you caught it early! Yay!
Posted 12/15/2008 5:07 PM (GMT 0)
He told me that there are 5 layers in the small intestine and that mine is only in the innermost layer so there appears to be no chronic damage as of yet if we can heal the ulcers. I think he was basing part of his decision on the elevated liver enzymes. I don't know, but right now I am pretty bummed out by the diagnosis. Pehaps I can get more information from him on the 29th. Until then I actively solicit questions to ask him from you guys who have been through all the battles I may be facing.

Thanks!!!!
Posted 12/15/2008 5:27 PM (GMT 0)
Ask him if he took biopsies and what they showed. If they indicated granulomas, that would be a strong pointer in the direction of Crohns. If not, it does not rule it out but would open the door to a less serious cause for the ulcerations. Also keep in mind that the terminal ileum (the last few inches of the small intestine where it connects to the cecum/colon) is the most common location for Crohns. And if you were free of ulcerations for the remainder ofthe small bowel, that would make it a bit less likely that it was caused by aspirin, which would have been more likely to ause spotty irritation throughout.

Posted 12/15/2008 7:04 PM (GMT 0)
I thought the NSAID's in aspirin could cause issues of bleeding anywhere in the GI tract and not necessarily ulcers?

With crohn's the many layers of the intestinal lining can be affected, so that is strong enough evidence of it bieng CD right there...I'd still like to know what they found in your colon in order to give you an RX for Asacol though, you must have inflammation going on in your colon as well.

:)
Posted 12/15/2008 9:40 PM (GMT 0)

Ulcers in the small intestine, by themselves, are not enough to definitively diagnose Crohn's disease. 

There are other possible causes of ulcerations, the most common of which is aspirin/NSAID use.  Since you mentioned using aspirin regularly for the last few years, I would say the diagnosis of Crohn's is VERY premature and that the aspirin use is the most likely cause of the ulcerations.

The elevated liver enzymes are not specific to Crohn's, either.  That could arise from all sorts of things.

In all, yes, it's possible you have Crohn's disease, but it's far from certain.

Do you know which blood tests were run?  Did they check ESR (sed rate) and/or CRP?  Did they do the Prometheus Labs IBD Serology 7 test?  That one would be the next thing to do if they haven't already done it.

As for Asacol use, it's considered a fairly mild med and probably won't hurt you if it turns out you don't have Crohn's.  It works in the terminal ileum and the colon, so that would cover your area of ulcers.

Posted 12/15/2008 11:31 PM (GMT 0)
They found no polyps or anything going on in my colon. They ran a couple of blood test to look for Crohn's that were "unremarkable" in the doctor's own words. The only abnormalities are the 3 ulcers and the high liver enzymes.
Posted 12/15/2008 11:45 PM (GMT 0)
Hi At least they have found the ulcers and you can get them treated. Perhaps it is a mild case and you will be able to keep it in check. lol gail
Posted 12/16/2008 12:50 AM (GMT 0)
Just fyi I use Asacol myself and my Crohns is/was in the TI area. So its not always just used for colon issues.
Posted 12/16/2008 12:50 PM (GMT 0)
For now......I think I'll just cover it with prayer. Thanks for the good information. When I know more, I will re-post.
Posted 12/16/2008 10:24 PM (GMT 0)

The more I think about this case, the more I think the ulcers are caused by your aspirin use.

There are a couple things you could do to get to the bottom of this, so to speak. ;-)

One, have your doctor order the Prometheus Labs IBD Serology 7 test.  This is a specialized blood test that looks at levels of antibodies in your blood and predicts with pretty good accuracy whether or not you have Crohn's.  If it comes back negative, I would say that the ulcers are from aspirin use.  If it comes back positive, you probably have Crohn's.

The other thing you could do is stop aspirin and all NSAID use for a few months, then repeat the colonoscopy and/or the capsule endoscopy, to see whether the ulcers have healed on their own.

Again, as has been said before:  Ulcers alone are NOT enough to conclusively diagnose Crohn's disease.  In fact, most cases of ulcers in the intestines come from aspirin/NSAID use, not from Crohn's. 

To be diagnosed with Crohn's, docs would need to see the ulcers PLUS one or more of the following: granulomas in the biopsies; thickened walls of the intestine shown in the GI series; enlarged lymph nodes in the mesentery; perianal disease; fistulas, strictures; symptoms such as fatigue, nausea, diarrhea, abdominal pain that wax and wain over long periods of time; positive blood tests; etc.

Posted 12/17/2008 2:57 AM (GMT 0)

I sure hope you don't have Crohn's!

Mine took a few tests to get it diagnosed.  When I had my colonscopy done, I had a couple of ulcers in my TI and inflammation in my cecum and ascending colon.  My biopsies did not come back positive for granulomas but they did show cryptitis (which, as I have been told, is linked to Crohn's).  My pill cam is what got me the official diagnosis and it showed all kinds of changes throughout my small bowel.

My blood work has always been normal.  However, I had other symptoms of Crohn's--eye inflammation, diarrhea, fatigue, night sweats, mouth sores, abdominal pain, bleeding, etc. 

Beave had a great suggestion--to stop asprin and NSAIDS for a while and then getting retested. 

Best of luck to you and I hope you don't have it!  If you do though, it is good to catch it early.  Mine was caught and diagnosed pretty early and I have been able to get started on medication that is really helping me now! 

Posted 1/11/2009 1:58 PM (GMT 0)
BUMP!

I am finally going to the Doctor this week as my other appointment got cancelled. Still no symptoms, no anything. Does anyone else have any advice as far as questions to ask the Doctor? Thanks in advance!  confused

Posted 1/11/2009 3:57 PM (GMT 0)
Hello Sandy,

I'm hoping you stay symptom-free whatever the diagnosis! Crohn's manifests itself differently in people, and I wonder how many people have the disease but have so few symptons that they never know that anything is wrong. How many people have occasional bouts of D or ambdominal cramping and chalk it up to a cold, poor eating, stress, etc.? We will never know. Whatever you have, it it good your doctor caught it and can treat it now before it gets worse. Let us know what your doctor says!
Posted 1/11/2009 5:59 PM (GMT 0)
Okay...not to change the subject but delve deeper. I don't know what the heck they did to me to figure on a Crohn's diagnosis. I never met the GI. I told the surgeon when I was recovering from the surgery that he was wrong and to recheck the results. Seems to me that they give a Crohn's Dx prematurely in a few cases of people we've seen around who end up having something or else wrong. I used tons of aspirin before. I was told to avoid Tylenol so I took aspirin when I had a headache/aches/pains/etc. BUT I've heard that Crohns looks like a cobblestone path where the disease tends to manifest. Any thoughts?

Besides that, I think avoiding OTC pain medication for a few months and redoing the colonoscopy would fall second to having the blood work done mentioned above Sandy. Sure does seem like a crap shoot (ahhhhhh...the pun of it all!!!)
Posted 1/11/2009 8:35 PM (GMT 0)

Nanners said...
Just fyi I use Asacol myself and my Crohns is/was in the TI area. So its not always just used for colon issues.

That doesn't make any sense, asacol only releases the colon, it has no benefit in the TI or any higher (small intestine) at least from everything I've ever been told by GI's.  Asacol tablets have a special acrylic-based resin coating which delays release of mesalamine until the tablets reach the terminal ileum and colon. Once released in the colon, mesalamine is minimally absorbed and plasma levels are similar to those found following rectal administration of mesalamine. Approximately 20% of the administered dose released in the colon is absorbed, with about 80% being excreted in the feces.  It jus starts to release in the TI but the amount wouldn't be very effective if at all in the TI.

:)

Posted 1/11/2009 10:21 PM (GMT 0)
Huh, that is so weird...guess it really doens't matter so long as people are finding relief...I am severely allergic to Asacol myself but thankfully I do okay with the natural route at least.

:)
Posted 1/11/2009 10:21 PM (GMT 0)
Geez, When I was given Asacol, I was told that 80% release near TI and remaining 20% split between colon and feces, do they just tell us what they think we want to hear??? All my issues were at the TI, and none in my colon.
Posted 1/19/2009 8:07 PM (GMT 0)
Well...... It's official...... I do have Crohn's Disease. sad

It appears to be in the very early stages or is a very mild case as I currently have no symptoms. I would appreciate any advice of where to go from here as I am having trouble searching this forum.

Thanx!!

Posted 1/19/2009 9:40 PM (GMT 0)
Hi Sandy,

Sorry to hear the news! To start, you can find good information on the Crohn's and Colitis Foundation's website -- http://www.ccfa.org/
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