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Discussion Starter · #1 ·
I am wondering how some medical people can mis-diagnose people,let me explain...When jim was in hospital, quite often id pop outside for a ciggy, one day in particular a lady sat down near me and we stared talking (i can talk to anyone no matter where they originate from)anyway the topic came onto illness's, she told me that she had been wrongly diagnosed with ibs, it was infact chrons disease she had (she was lead to believe that for 2 yrs she had ibs)It was very clear that this lady was still infact very bitter, i told her i met a lovely couple in the summer who also had, had been told the very same, it does make me begin to wonder how many others have been mis-diagnosed! It makes me very angry to think that these "so called professionals" (i refer to some & not all)could infact be mis-diagnosing a lot of us who think we have ibs, when infact it could be something else...Sorry if this post has been a long one, but i feel its a valid point im trying to make..
 

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Don't quote me on this but I think I recall reading somewhere that in early stages of chrone's and colitis that if it is not active at the time of the colonoscopy and biopsies that it can be missed as it hasn't been going on long enough to have left any scarring. I too worry about whether I in fact have IBS as so many of my symptoms don't match IBS at all and I dont' seem to have a lot of things that most IBS'ers do. When I had my colonoscopy I wasn't terribly ill at the time so is it possible they missed something? I think it's a pretty valid question though. I know someone who thought she had IBS for years and years only to find out 10 years on that she's had coeliac disease! It's frightening.
 

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Celiac can be very hard to pick up on as the symptoms are much more vague a lot of the time. Fortunately once you know diet alone will correct it.Crohn's and Colitis can be mild and some people have periods of remission. So timing of the colonoscopy can be important in diagnosis. Sometimes IBSers have other diseases. Do the problems you have that are not IBS match the red flags for IBD (pain that wakes you up from a sound sleep. Bloody diarrhea, Inexplicable weight loss--you eat like a sumo wrestler and still lose weight, not you don't eat and lose weight) Or are they symptoms of other things like upper GI issues like nausea?K.
 

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I have a range of symptoms. For me, a lot of my worst attacks come at night time, terrible watery diarreah, sweating, cramping pains, feeling like I'll pass out while on the loo, I also get strange hard lumps on each side of my tummy, it feels like my intestines have swollen near the hipbone, sometimes I get these pain attacks (mostly about once a month but they have come more often at times) where despite having eaten not long before I feel empty in the tummy (not sure how to describe it) then I get a cramp under the ribs that runs all the way around the back. This makes me feel nauseaus then after about an hour of this cramp my tummy starts to act up and I often get a bout of D or running to the loo numerous times. It lasts about 4 or 5 hours, I get anemic roughly every 3 months and we have no idea why (my GP and I that is) and the last 2 years I dropped 15kg for no reason. I wasn't eating less or anything but the D was really acting up on a daily basis. I went from almost 70kg at 5ft 11 to 58kg. I am now back to 64kg thanks to my anti dep. That's about it really that I can think of. Oh plus I don't react to most of the so called "trigger" foods. I am okay with whole wheat, dairy, coffee (just not too much of it but I can drink decaf like it's going out of fashion). There are others but it's getting late here and my brains not functioning.Oh I ache all over, worse when I have an attack (been checked for fibro), I do have reflux though.
 

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Have they done biopsies for microscopic colitis. http://digestive.niddk.nih.gov/ddiseases/p...agenouscolitis/They tend to do the watery diarrhea at night thing more than IBS does.Trigger foods for IBS are not really very diagnostic. Some IBSers do not react to them at all and often people with IBD find the same foods bother them (like things that in large enough quantities can cause diarrhea in a normal person can be a problem for people who have diarrhea most of the time no matter what caused the diarrhea).K.
 

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Discussion Starter · #7 ·
thanks kathleen and screamer, i worry about the fact that perhaps i have something else (ok i know insanity runs in the family)
but honestly i do fret at times and think do i really have ibs? or is it something else? cant help thinking this way, but peeps have been mis-diagnosed
 

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Kathleen I'm not sure. I'll double check with my doctor next time I go to see him. I know they took biopsies to check for chrone's and colitis. Would this be the same thing?
 

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As far as I know the taking of the biopsies is the same. I don't know if they have to look at them differently to see the microscopic colitis. These things look different than crohns or colitis on the slides from what I understand. I don't know if they always look for it or if you might need to use a different stain or something like that to see it properly.K.
 

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I was lead to believe there was a certain part that needed to be biopsied to detect microscopic colitis... If they didn't biopsy this spot, it would be missed.I forget what part this is, though.So yes, this post is pointless and needless! SORRY!
 

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I'm would think the biopsies for colitis would cover the same area as microscopic colitis. I'm not sure.One study found that biopsis with a sigmoidoscopy were just as effective as whole colon ones. I suspect the classic IBD biopsies would be in the right locations.I'm more wondering if the same staining technique picks up both, and that I do not know, and I don't know how often they check for microscopic colitis as it is not considered to be all that common.K.
 

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I remember that when I had an upper endoscopy one of the reasons (I read this in my chart, no one ever told me) was to rule out microscopic colitis. I know that they took biopsies too. I also had a colonoscopy but my chart didnt state the reason for that.
 

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I have seen the same gastro doc for 25 years and he is regarded as the best in my area but, I had ibs for 24 years and in the past 6 months i've been ibd (crohns) then not crohns, and back to Ibs, I think. This dude has given me every test there is, and a few of these tests 3 times over 25 years. I understand if they don't know what I have. My problem is giving me steroids for crohns because I might have crohns, so lets try this. Or lets try lotronex because I might have this disease. My question is what new stomach problems am I getting from a doc giving me drugs just to see if it works? I finally gave up on my doc last week and made an appt to see a gastro specialist at Temple University in Philly. They have more modern equipment and better doctors so I hope something gets solved. Very Frustrating!Brett
 

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my yoga teacher was also wrongly diagnosed with IBS & had chron's. I just found out my older brother has to "go" all the time. He says he thinks it's from all the caffeine he drinks. I know a whole lot of men who blame it on the food, and a whole lot of women who develop this huge anxiety complex wondering what the heck is wrong with them. Maybe just more women in general are worriers. I don't know.
 

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Hi Brett and welcome. How very frustrating for you! You can't just take steroids and stuff "in case" you have chrone's! You need to know what is wrong with you first! Good luck with the new doctor. I hope they finally give you an answer.Marilyn, my DH suffers from quite a lot of frequent loo visits. Whenever I ask him though he'll say "oh, too much dairy, or chilli/salad/coffee etc" and blames it on the food too. He doesn't however seem to suffer from the incredible pain as I do. But maybe you have a point. I recall reading somewhere it's possible they only think that IBS is more common in women cause we worry and get our bums to the doctor where as men just deal with it.
 

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I think so more and more. My friend Jim takes metamucil and is "cured". he thought it was the food's fault. However, one day he said he had a confession to make. He was working on a huge project at work and the stress got to him & the metamucil failed him. He had major D & couldn't leave work until it calmed down. This would just throw me for about a week at least. He took it as one rare occurrence where the metamucil failed & just started fresh the next day.
 

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Wow, I wish I could do that. One single D attack has me paranoid and stuck at home for weeks! My DH is the same though, if a gastro bug's going around (and he works at a hospital so brings them all home to us) he just says "oh well, I get D for a day or 2, no biggie". Me I'm spraying the house with anti bac spray, cleaning the loo after anyone has been in there and pretty much walk around with a gas mask on. It just strikes fear into my heart!
 
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