Downgrade from Crohn's to IBS... is this possible?

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Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 9/6/2007 12:14 PM (GMT -7)   
Hey guys,
I know I have posted here before about my mystery GI illness, but it now looks like the diagnosis is IBS. I have been to several GI doctors all of which agree with the downgrade from Crohn's, which I was diagnosed with 7 years ago. The say the diagnosis was a mistake b/c we have not found any inflammation in my intestines despite 3 colonoscopies, multiple CT scans, capsule endoscopy, and multiple SBFT. My diagnosis was based off of the Prometheus test, which the doctors now say probably gave me a false positive. By the way, there is simply no way in hell that the Serology 7 IBD test is 92% accurate as stated. No way. I also had presumed GI bleeding, but it turned out to be chronic hemorrhoids. Also, IBS runs in my family, though I seem to have the worst case.
I can't tell you how happy this had made me, but I just want to be sure!! Thats where you guys come in. I seem to have alternating D/C, but most of the time between my stools look relatively normal. However, I have persistent moderate abdominal BURNING. Like my abdomen is extremely sensitive to touch kind of in the center. Its definitely not cramping, I rarely have that. Its just persistent burning. I have had it for the last 4 months... it disappeared for a week and a half, and then came right back!
Is this normal for IBS or Crohn's? If it went away I would be a much happier man, but if I really don't have Crohn's, I don't care how bad I feel! Thanks guys.

Mark

P.S. Does anyone with IBS have horrible reactions to oral antibiotics? Seems to have made things a lot worse for me!
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 9/6/2007 1:08 PM (GMT -7)   
Do your stools ever burn when you are passing them?

I'm not sure what you mean by "horrible reaction" to antibiotics, but they all certainly knock my intestinal tract for a loop. I have found that I need to take Culturelle daily while on the antibiotics and then eat yogurt everyday for three weeks in order to get things back to normal working order (that's "normal" for my guts).

Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 9/6/2007 5:19 PM (GMT -7)   

The thing about Crohn's disease is that generally there are very specific microscopic or macroscopic abnormalities that are seen upon inspection of the intestines (usually granulomas).  If these abnormalities are not present, it is difficult to diagnose someone with the disease.  Once you are diagnosed with Crohn's disease (or any chronic disease, for that matter), many patients have to fight to keep their insurance, etc. which is why doctors are hesitant to label the patient with that disease unless they are absolutely sure that it exists.  Also, the treatments for the disease can be occasionally more dangerous than the disease itself for some patients, so docs will use a lot of caution in treatment.

Some diseases are black-and-white; a couple of tests and you know for sure if it's present.  But GI disorders are very, very tricky.  I personally believe that many disorders can mimic the symptoms of Crohn's and they are not necessarily this vague, benign disorder of IBS.  There's a lot more still to be learned about the body. 

Have you ever had any upper GI studies, like an upper endoscopy, abdominal ultrasound, barium swallow, hydrogen breath test, CT scan?  When someone mentions burning pain in the umbilical area I always wonder about H. pylori infection.  90% of stomach ulcers are caused by this bacterium...


Co-moderator - IBS Forum


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 9/6/2007 6:09 PM (GMT -7)   
Keriamon, my stools do burn when I pass them... sometimes. Next time I am on an antibiotic, I am going to try the things you have.

Sarita, I am not sure if you were trying to tell me something with your message, but I do completely agree except Crohn's Disease is also itself a very vague disorder, probably an umbrella disorder for many conditions that cause inflammation in the intestines. But I suppose that IBS is even MORE vague.

I have had two endoscopies before. One showed nothing... the other showed non-erosive gastritis. No H.pylori.
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/8/2007 10:32 PM (GMT -7)   
If with any of your colonoscopies there has been any degree of inflammation anywhere in the GI tract that would indicated CD, even the slightest amount of inflammation can still cause D and even bleeding for a crohnie...maybe go see a few other docs for colonoscopies or even the pill cam.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 9/9/2007 11:27 AM (GMT -7)   
Yes, you can be downgraded. I was just a few months back and rightly so. I've been fighting the CD diagnosis since I got it. It just didn't add up - test wise, family wise, etc.

What we did find is that I'm extremely intolerant/sensitive to quite a few foods. I don't have celiac, but I've been 95% gluten, wheat and diary free since just about the end of June and all of my symptoms went away. My pain, my bloating, all the things that drove me to the GI in the first place. I do however, still have IBS-C, which is better, but still there. That doesn't change no matter what I do or don't eat.

CD is not an "umbrella" disease and it shouldn't be looked at like that. It's a serious, chronic, incurable disease that has severely impacted many peoples lives. Is it hard to get a proper diagnosis? Absolutely. Is it hard to treat? Most definitely. However, for those that have it, I'm guessing that cavalier (although I'm sure you don't mean it that way) statement would be infuriating nonetheless. In my opinion, IBS falls more under the "umbrella" diagnosis than anything else relating to the gut. Just my 2 cents.
Some days you're the bug, some days you're the windshield

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily

Post Edited (starrnr) : 9/9/2007 2:05:54 PM (GMT-6)


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 9/11/2007 12:22 AM (GMT -7)   
hmmm... I've still gotta think on this. The docs say there is nothing diagnostic, but I'm not sold either way!! Its totally driving me nuts!!

starrnr... how long did it take your symptoms to disappear while you were on the diet?

As for your comment on my "umbrella" statement, I certainly didn't mean to offend anyone, but I completely disagree with everything you said, and frankly, I find it a bit arrogant :) At least I used the word "probably". You made a blanket assertion without supporting it whatsoever.

But to be more specific, I personally BELIEVE that IBS is an "umbrella" functional disorder of the gastrointestinal tract whereas IBD is an "umbrella" inflammatory disorder of the gastrointestinal tract. My statements were no where near as cavalier as yours.

Anyway, I'd still love to know how long it took you to find symptom relief :) I tried a no gluten, no dairy diet for about 2 weeks but saw no symptom relief whatsoever.

Also, are you still taking Remicade or did that end with the rediagnosis? Did remicade help you?
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 9/11/2007 12:29 AM (GMT -7)   
Oh and PB4... I just don't get it. I think they did spot some focal neutrophilic "something" in my sigmoid colon during my last colonoscopy, but I know for a fact this is not diagnostic after doing my own research. Could be prep, or in that specific location, diverticulitis. I do have some diverticuli. However, it could also be the beginning stages of Crohn's Disease... but what the heck, I've had symptoms for 7 years!!!

Eitherway, I'm just counting myself lucky that if I do have Crohn's, its relatively minor and seemingly nondestructive. I just hope it doesn't get worse! I'm not really treating my condition with anything except probiotics!! I'm thinking about getting back on Colazal to see if it does anything.
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 9/11/2007 12:33 AM (GMT -7)   
Keep forgeting... I am not having any diarhea at all right now. No where close actually... my stools are practically diamonds. Very hard. I go about 6 times a day though. They are hard to get out... does that mean I'm constipated even when I'm going 6 times a day?

My major complaint is abdominal tenderness around my naval.
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. History of horrible Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking ABSOLUTELY NADA.... kind of worried about that actually :)


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 9/11/2007 8:34 AM (GMT -7)   
Yes, constipation can include frequent stools so long as the stools are hard.

That your stools burn when you pass them might indicate a bile problem. This might be from a bad gall bladder, but there's a new syndrome they've got labeled now (Habba Syndrome, I think it was that Des told me) where some people have D but have nothing at all wrong or very little wrong with their gall bladders. Yet bile is the culprit behind their D. Either they are producing too much or not reabsorbing it for some reason. Doctors just try people out on medicine like I'm on, Welchol, to see if it stops the D. If it does, then bile was their problem (Welchol only binds up bile in the intestinal tract). If your doctor doesn't have any other ideas, make him give you some and see what happens.

starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 9/11/2007 12:12 PM (GMT -7)   
Styx - while I'm not sure what was arrogant or cavalier about my comment(s), it's perfectly ok if you don't agree with anything I've said. I do however, get your frustration. Have you stepped over to the CD forum lately and posted any of your thoughts on what is going on with you? The members on that forum might be able to assist you as well as the wonderful people over here on the IBS forum.

Yes, I'm still on Remicade & MTX as I have RA & AS. The change to Remicade (from Enbrel) did absolutely nothing for the pain in my gut - zip nada. Nothing worked actually. I went on soft foods, I did the CD diet (all white stuff), I stopped eating like I normally did - anything to get relief. I finally mentioned to my GI a few months ago that I had major food issues and we went from there.

I started noticing some changes about 2 weeks into being GF/WF/DF (although I do eat yogurt a few times a week), although it took a good month to really notice that I was without the extra pain. It was hard (still is) to do this, but it has been so worth it for me. It's a matter of give and take, experimentation and wishful thinking. I've lost 20 pounds, I have no more extra bloating (unless I eat something I shouldn't), no extra pain in my gut (I still get constipated), I look clearer (skin, eyes, etc) and I feel really well for the first time in a very long time. This is just me though. I miss real bread, pasta, cheese, ice cream, etc, but if I really think about it -- those were the things that were making me the sickest. I have to really want something to suffer the consequences, but this is working for me. It is really hard to make this transition and it doesn't always seem to be the right answer to what ails a person. It was for me and I'm thrilled to finally have some answers to what ails me...

I hope you get the answers you seek...
Some days you're the bug, some days you're the windshield

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 9/11/2007 2:14 PM (GMT -7)   
<<probably an umbrella disorder for many conditions that cause inflammation in the intestines>>
 
Yes and no.  Crohn's is (supposedly) a very specific disorder: it is inflammation that causes damage down through multiple layers of the intestinal wall (even all the way through it).  It can cause permanent damage to the intestines.  (Although, it must be remembered that not every flare of Crohn's will cause very severe damage or deep inflammation--that's why it can be confused with UC.)   
 
However, there is also Ulcerative Colitis which can contain everything from very mild inflammation to inflammation that causes repairable damage to the topmost layer of the intestines.  If damage goes deeper than that, you have Crohn's. 
 
As best I remember, both disease are auto-immune and have very similar properties.  It's really just a matter of degree.  Also, Crohn's can affect other systems (kidneys being one), but I don't think UC is as bad about doing that. 
 
So Crohn's really isn't an umbrella diagnosis for intestinal inflammation--UC is.  Question is, without evidence of damage to your intestines, but bloodwork evidence of inflammation or auto-immune disorder, why did they say you have Crohn's instead of UC?  UC never or almost never causes permanent damage to your intestines the way Crohn's does, so it's a less severe diagnosis.  The symtoms of it, compared to Crohn's, are also usually less severe.  It is entirely possible that you are correct in suspecting that they were just slapping a label on you; Crohn's isn't an umbrella disease that covers all types of inflammation, but it looks like your doctors were (very wrongly) applying it that way. 
 
Also, food allergies and even non-allergy food intolerances can cause irritation (which almost certainly looks the same as inflammation) in the intestines.  However, it's my understanding that neither cause the sorts of results you got with your blood work (although Celiac's might, as it is also an auto-immune disorder which can cause visible intestinal irritation).  So you are also right that doctors can miss something more simple like that and lump it under an IBD. 
 
Have you tried cutting out certain food groups to see if this helps any?  A few lucky people have been able to narrow all of their problems down to an allergy or intolerance to gluten or dairy. 

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 9/12/2007 11:12 AM (GMT -7)   
Crohns and UC are both specific diagnosis that can be diagnosed through biopsies (although not always). They are both dangerous diseases. There are other types of colitis (ischemic/microscopic) that can be diagnosed individually as well.

As with all autoimmune diseases, they can be very difficult to diagnose (I have one that is still being diagnosed after almost 2 years).

Styx, I can totally relate to where you are coming from. I was diagnosed with UC and then later undiagnosed. I had the ulcerations (somewhat severe) and then strangely they were gone... never to have returned again as of today. I'm not on any maintenance medications for IBD so it can't be chauked up to remission. Just a strange phenomenon and now my docs are suspecting that my Lupus like illness may have played a role.

Sometimes medicine is not cut and dry, not the fault of anyone really. Its a very frustrating process to find out what is wrong with you... believe me I KNOW!!!


"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


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