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1234133 tn?1325028242

No pain or anything, just food intolerant?

I'm puzzled. Crohns was diagnosed Feb09 from a photo of 5 pinprick sized ulcers at the terminal ileum, everything else including biopsies & barium were normal. I get no pain, no diarrhea. I'm not on medication.
I have to make sure I 'go' every day which can be a struggle sometimes & I need to eat foods with natural laxative properties. The symptoms are basically just not being able to eat properly like I used to a year ago. Loss of appetite & weight over that year has brought me back down to the 8 stone that I had been all my adult life (pre-illness) up to a few years back when the weight gain started.
Sometimes a few hours after a fair sized normal meal I can feel uncomfortable ('burning' sensation in stomach), nauseous & may need BM. That can cause tremors too. It usually comes on during the evening & at first a year ago it was v.bad causing me to wake up in the night with vomiting & fainting. That's gone off now I'm managing it. I chew on ginger to subdue it. Other times I'm fine & meals don't affect me.
Also, some nights I don't sleep for some reason - heart beat, flashy images. Sometimes that combines with the meal reaction.
Please would y'all let me know - does any of this sound familiar? I would be interested to hear back about your experiences. Seriously, in the context of Crohns as y'all know it, do you think it fits??  I've had blood tests done over the course of the year too & the inflammation marker has been normal there aswell. Am going back to the GP on Monday to request a 2nd opinion, don't want to waste their time but equally could do with being certain in case I do go on to medication at some point.
Many thanks.
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1234133 tn?1325028242
sunair thank you so much for this detailed and insightful response; I went back to the gp this week, the one who originally told me in Feb09 that he considered it to be chronic IBS. This time he figures it is *probably* is Crohns given the ulcerations even though the biopsies were clear (one of which he said proves it's not celiac). I agree with your lateral thinking about the presence of the ulcers. He said the same as you, that Crohns can occur anywhere between the head & abdomen. And that I'm a mild case, and an 'exception'. I guess you must be an exception, too, if you also don't get the D? But he admitted the non-pain thing was curious.

I think I need to get up to speed on the quadrants - I'm not too sure what's what. Sometimes I notice a bit of bloatiness, but I figure that would be normal being a thinny again, & female! But the 'burny' sensation when I lose my appetite is "upper" really, getting on for ribs. Lasts a day or two depending how much I ate to trigger it. Most of the time I eat fine, the 'typical' foods don't bother me. I can eat exactly the same thing another time & it does bother me. Totally random. Your appetite loss definitely differs in origin to mine.

There have been occasions over the past 20y (since appendectomy at 19) when I seemingly had food poisoning but looking back they've all been remarkably similar although spaced v.far apart. It's only Nov09-May10 there was a spate of incidents having put on 3st over 5 years. Now the weight is gone again thanks to the illness (wahey, hmm) the incidents aren't so aggressive but then again I'm reluctant to eat a lot these days.

My other half was prescribed a/b for h.pylori about 6y ago & gets similar symptoms to me now & then although he is overweight & loves junk food, so classic IBS we think.

Last night was another "non-sleeper" due to stress/work. After a couple of hours it began to make me feel jittery, nauseous, maybe due for a BM - thankfully I nodded off by 4am & got 3hrs. Not tired since though.

Thanks again, definitely food for thought.
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Avatar universal
Hello there. I'm new here, I've had pretty classic Crohn's for about 10 years. It started in terminal ilium, now it's in the cecum too, and another spot on the descending side. My case is mild, so I've not treated it with any medications at this time.

My very short answer would be: No, what you describe doesn't seem to fit the pattern of Crohn's disease. Doesn't fit it *well,* I should say. But it can be variable in its manifestations, so, your symptom descriptions are *not inconsistent* with Crohn's either. Crohn's could do what you describe, just usually doesn't.

If you were diagnosed with Crohn's, it's usually on the basis of the (gold standard) biopsy. You say your biopsy was negative, so I guess the Dr.s probably think your situation is *suggestive* of Crohn's? The terminal ileum is the most common spot for Crohn's to pop up. Without looking it up, I believe that in about 1/3 of all Crohn's patients, disease activity is confined to just the terminal ileum, another 1/3 has it there plus the cecum/ascending, and the last 1/3 has it in spots all throughout - from the ileum to the rectum. It can also appear in the stomach, even the mouth, but that is much much more rare.

You say you get "no pain, no diarrhea"... I think the most common symptoms described are pain and diarrhea, but a significant minority have C instead of D. (I've never had D). If Crohn's was limited to the terminal ileum it would not be that unusual to not have D, since nutrient absorption happens there, as opposed to involvement in the colon, where water absorption happens (and so usually causes D).

But the "no pain" part seems odd. My first flare up was in the terminal ileum, and it hurt like hell. For me, the lower right quadrant swells up, visibly, (from inflammation), and you would definitely call it a burning sensation. Mine lasts days, maybe a week or two. Other people describe a crampy situation, as the intestines keep contracting, over and over again. There's lots of variability.

You described a "burning in your stomach" - but which quadrant? If you're talking primarily about burning and nausea, actually in the stomach itself (upper left quadrant) after eating a meal, there are lots of things that would cause that, and Crohns would be way down the list in likelihood.

I can imagine some Crohn's people describing pain after eating, but more likely it's just MORE pain after eating, when they're already in a flare situation.

I can see *nausea* causing tremors, sweating, feeling faint, etc. It's a bad feeling, it does those things.

Ulcers in the small intestine can be Crohn's but they can also be other things. That's why they look at the biopsy to confirm. There should be changes in the types of cells, and erosion past the superficial mucosa level, etc. Instsead, ulcers could be post-reactive to a microbe - a mild food poisoning incident - could be small bowel bacterial overgrowth. Could be Celiac disease - it's usually more in the duodenum/jejunum, but it could be there AND the ileum, you just haven't looked elsewhere yet. If you eat wheat occasionally, go get a celiac blood panel thing done.

I am surprised they haven't wanted to do an upper GI endoscope thing. Stomach burning after eating is often just an h. pylori situation, and you need some antibiotics, maybe antacids.

I've also lost about 20 pounds over 5 years and am thin now (6'0'' and 150 lbs.). There's less appetite, and also less absorption from a scarred over ileum (I'm guessing). But they lack of appetite isn't usually (in my limited experience) from nausea caused by food in the stomach, as much as not wanting to put more food in a swollen abdomen. The pain and swelling of Crohn's is usually much further *down*, further along the GI tract.

I can think of 5-10 things that fit your symptoms better than Crohns. (But your description was somewhat vague). If the Dr's looked at biopsies of your ulcers and definitely saw Crohns though, that's probably what it is. Otherwise, I'd guess it wasn't. Which absolutely doesn't mean to ignore symptoms or Dr's who have actually seen you.

Cheers!
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1234133 tn?1325028242
Honestly, could do with knowing if anyone can relate to these symptoms.
How do meals affect you, is it all meals or just random like this?
and if they do occur, do your Crohns symptoms normally come on a few hours after eating, and usually later in the day? and then can linger for a couple of days?
thank you
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