Why does everyone confuse IBD with IBS?????

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hukleberrie
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Date Joined Jan 2008
Total Posts : 491
   Posted 4/3/2008 2:42 PM (GMT -7)   
Whenever I say I have IBD, everyone automatically switches IBS with IBD. Even doctors (EXCEPT my PCP & GI) but when I go to urgent care & tell them I have IBD, they say well, IBS can cause bloating, blah blah blah. When I correct them & tell them I have ibD, not ibS, they look at me like they are interchangeable, but when I look it up online, it is definitely NOT interchangeable, and I have heard that you can have both IBD & IBS. I am just surprised at how some doctors, and even the gyno I just saw, act like they are one & the same.

Maybe it just frustrates me more than other people...
Live for today, for tomorrow you might just get hit by a semi.


patientspiders
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   Posted 4/3/2008 3:07 PM (GMT -7)   
You are NOT alone in your frustration, huk. I guess one source of the confusion is the fact that WAY MORE people suffer from IBS, so it's much more common for doctors and nurses to come across that particular ailment. Like I said in another post today... docs and nurses don't like being confronted with ailments they know little about, and even the specialists are in the dark with us IBD-ers sometimes... imagine how the regular docs and nurses must feel! They're often clueless, but somehow they think we won't notice. Pah!

What actually annoys me more than that... while we're on the topic... are people who say "oh yeah, I know EXACTLY how you feel because I have IBS." I wouldn't say such a thing even if I were talking to another crohnie!

I have found that I have slightly better luck if I don't call it IBD when I go to the ER. I call it crohns, and only crohns. People seem less hesitant to admit ignorance when I give it a specific name like that, rather than just IBD (even though I know that IBD only includes 2 diseases or whatever). It seems to be easier for them to mentally categorize me.

You're right. IBS and IBD are far from interchangeable, and some people on here DO have both.

Maybe we should all carry a little "Crohns disease 101" pamphlet that we can give to people when they think they know what they're talking about!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 4/3/2008 3:13 PM (GMT -7)   
I am with patientspiders on this one. You should tell them you have Crohns Disease, not many people other than GI's really understand what IBD means, hence the confusion on IBD/IBS.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/3/2008 3:40 PM (GMT -7)   
Well, therein lies the problem. I haven't been diagnosed with crohn's yet. Just IBD. GI isn't sure which I have, UC or CD, even though everyone at the ER and my osteo & most others think it's CD. So I don't have a dx yet & can't really say crohn's.... So when I say IBD, then the IBS thing comes out of everyone's mouths!

And, YES, I had someone tell me today she knows about my pain because she has IBS!
Live for today, for tomorrow you might just get hit by a semi.


Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 4/3/2008 3:46 PM (GMT -7)   
Well, IBS can be pretty bad. If you check out the IBS board you'll find people who suffer miserably with IBS and who've had to go on disability, etc. I don't know if you know my story but my symptoms have been extremely severe and I haven't ever had a real diagnosis...so if this is IBS, dang straight it can mess with you big time! However, I do understand your pain - I'm like, "Dude...you have no idea..." but of course I never say that. People are just trying to find a way to connect with you and empathize, but usually just end up saying something that sounds lame - but I just chalk it up to naivete, and move on with my life :)
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. We can offer advice and suggestions, but ultimately it is the patient's responsibility to communicate information to his or her physician, and vice-versa. Take heart...it is possible!


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 4/3/2008 3:49 PM (GMT -7)   
If you have been diagnosed with IBD you have either Crohns or Ulcerative Collitis. IBD is just a abbreviation for inflammatory bowel disease. Maybe if you say you have a inflammatory bowel disease instead of using the term IBD, people will get it a little more. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/3/2008 3:56 PM (GMT -7)   
I agree. I know she is having her own troubles, and I would never downgrade her issues. I don't mean hers are worse than mine. I guess it's just because my mom was dxd with IBS years ago & basically she was just always irregular. So was I. I always thought IBS was a crock, but I know now that is not true. I never realized how important it is to have bowel movements. Actually, now, for me, it's important to have some kind of pattern. It's the irregularity of it that drives me crazy. 6 times today, then I might not go for 6 days, then I might have big D for days..... I can't get a grip on my guts!!
Live for today, for tomorrow you might just get hit by a semi.


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 4/3/2008 4:32 PM (GMT -7)   
I always refer to my disease as Crohn's and only when I get the confused look do I say it's an "Inflammatory Bowel Disease" I never ever never call it only IBD because it's too confusing to the plebs. On the other hand, I also have IBS- which I only call IBS so I don't tend to have that issue. I would suggest spelling it out (even for reg docs and nurses because I find they don't know it a lot) just to avoid complications.
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
Just started taking Humira and feeling crazy good.


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/3/2008 5:07 PM (GMT -7)   
The other thing that drives me MAD is that when I tell people that I have Crohn's and can't handle fibre or dairy products, they suddenly offer me a cheese omelette or something and say, "I hope this is ok, seeing as you have celiac and can't cope with gluten". Huh??!!!

It happens at least once a month, and even with close friends. *bashes head against keyboard*

And yeah, the IBS confusion -- so frustrating.

I.
Co-Moderator Crohn's Forum.


pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 4/3/2008 5:24 PM (GMT -7)   
This is tough because so many out there are not aware of either IBS, IBD and even celiacs...I myself never had a clue of any of them until I got sick with crohns and then a few yrs ago my GI added IBS on there too, I hadn't even heard of celiacs until they told me they were checking me for that when they were checking for CD as well (the usual tests, as they knew I had CD but wanted to confirm).

Thing is with IBS and IBD the only real differences is IBS means no inflammation or bleeding from the bowels or the extraintestinal manifestations like what you get with IBD but the frequency, urgency issues are very much the same as IBD, same with the feeling of incomplete evacuation.

Don't be to hard on people, they don't know any better, you can't know everything about everything and if they don't live it then they're likely not gonna be as aware.

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


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/4/2008 3:00 AM (GMT -7)   
well, it's mostly the doctors that bug me. THEY should know. Is CD that uncommon? I understand that regular people don't know what IBD is & I understand how people could get it mixed up with IBS, but doctors should know. I shouldn't have to correct a doctor that I have IBD not IBS.

IVY~Everyone tries to push raw fruits & veggies on me (I am on the low fiber, low residue diet) & I when I tell them I can't eat them, they think I am crazy. "This is healthy food, food you should be eating!!" I know exactly what you mean!!
Live for today, for tomorrow you might just get hit by a semi.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/4/2008 3:06 AM (GMT -7)   
Me, I rather suspect it has something to do with the efficacy of various support and lobby groups in promoting patients' interests. I think there would be an awful lot less confusion if our CCAs, CCFAs, etc had more funds / made more of an effort to raise public awareness. The celiac lobby has done a very good job here - I see posters and pamphlets quite often.

I.
Co-Moderator Crohn's Forum.


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 4/4/2008 9:45 AM (GMT -7)   
My GI asks me how my colitis is all the time. When I correct him he says "oh I use colitis as a general term for inflamation" it applies to UC as well as crohns. I know technically he is correct but the first few times he said it it bugged me.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/4/2008 10:11 AM (GMT -7)   
Actually, I would rather they called it colitis than IBS. Maybe that's what I should call it until I have confirmation of Crohn's. Or maybe I should just tell them I have Crohn's, I don't know. I do have colitis & inflammation so maybe that's what I should call it.

I just get annoyed when doctors call it IBS because I DO have inflammation that shows up on tests & biopsies, so I don't understand why they would use interchange IBS & IBD....
Live for today, for tomorrow you might just get hit by a semi.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/4/2008 10:50 AM (GMT -7)   
FitzyK23 said...
My GI asks me how my colitis is all the time. When I correct him he says "oh I use colitis as a general term for inflamation" it applies to UC as well as crohns. I know technically he is correct but the first few times he said it it bugged me.

Actually it's only colitis if it's affecting your colon...I learned this during one colonoscopy when the doc came and spoke to me and said my colitis was still flaring and I looked at him confused and said "you mean my crohns" and he said yes, but when it's in your colon it's referred to as colitis, crohns-colitis specifically.
 
:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 4/4/2008 10:55 AM (GMT -7)   
I think we just need to start using the blanket term - "garden hose." No one mistakes that for anything but what it is :-) At least it gets the picture across to my friends!
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/4/2008 10:59 AM (GMT -7)   

Let me toss this out so you can have some more info.......my husband was origianally dx with regional enteritis.  redface

People don't always understand the disease processes if they do not have the disease and some have combinations as already pointed out.

Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Matthew
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Date Joined Oct 2004
Total Posts : 3932
   Posted 4/4/2008 5:39 PM (GMT -7)   
Well, that beats the old term for CD in the bad ol' days: Terminal Illeitis. Yikes! Start making the funeral arrangements.
I understand your irratation ( & I mean that in multiple ways! LOL) on the mistakes about our DD moniker. I get the IBS for IBD even from doctors ( actually, esp. from docs!). GROWWWL. Colitis *IS* accurate in my case sine my illness primarily effects my colon. However, there is symptomatic evidence of small bowel disease yet unseen.
I just say, IBS doesn't cause this red underwear & TP, see, want to look? That should do it..

Matthew
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