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Crohn's Disease Forum » General IBD Discussion » Does your Crohns move around?


03-20-2015, 04:39 PM   #1
buttER
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Does your Crohns move around?

I have recently been diagnosed with IBD, indeterminate but suspected Crohns. The last colonoscopy showed ulceration of the lower half of the large intestine.

I have had periods (months at a time) of illness since I was a child. Sometimes I had terrible nausea and general abdominal discomfort for months (teachers at school or uni would ask if I was feeling OK because I must have looked so terrible), sometimes indigestion, as I teenager I had alot of mouth ulcers (on the skin on the inside of the mouth, or under the tongue), and sometimes I had months of diarrhea. It was always with weight loss and fatigue. As far as I know only the last time I had fever too.

I was never sent to a GI, only to a psychologist!

Looking back I am wondering if I have had Crohns affecting different parts of the intestinal tract? Is that possible? I would appreciate any opinions or experience. Maybe your Crohns is always in the same place?

And also, I never had any small bowel tests, but the colonoscopy went up to the terminal ileum that was fine. Can it be Crohns if there is no inflammation of the ileum?

Thanks
03-20-2015, 07:03 PM   #2
Layla
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I was diagnosed with UC 20 years ago and the disease was definitely in the colon then. Last year I had a small bowel resection and had a colonoscopy a few months before which showed no sign of disease in the colon at all, no scarring, nothing.
So yes, in my case it moves around.
03-20-2015, 09:13 PM   #3
24601
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You can definitely have Crohn's without having any disease in the terminal ileum. It is, I believe, simply the most common place to see signs of the disease.

As to it moving around, it can certainly affect more parts of the digestive tract than it has previously. When people talk about the disease 'moving' around I think they are most often referring to the situation where they've had trouble getting inflammation under control and developed complications, had those parts of the bowel removed and then the disease 'pops up' in another part of the GI tract. Anecdotally at least it doesn't seem very common to hear of people who say, for example, that they had inflammation in their colon and they got that under control only to find it's started in their small bowel but there may be people out there who experience that.

I think for you, or any of us pre-diagnosis, that it's really hard to say where the disease was and what it was doing without the imaging. In fact I think it is hard for you now since you don't have imaging of the entire bowel (we've talked about that elsewhere I know and I definitely think you should get small bowel imaging done just to check).

I think it is very understandable that we try to surmise a lot from the symptoms that we get but the reality is that the gut only has so many ways of acting up and there isn't nearly as strong correlation between a symptom or the location of a pain and a manifestation of Crohn's or a location or severity of inflammation as we would like there to be. I say that we would like that because I truly think it would be convenient and it's not like we can be having imaging all the time so we all are treating this disease while blindfolded to an extent and it's frustrating. We want those symptoms to tell us more than they do. As we say in my family, I really should have been made with a see-through panel so that we could check what was going on in there - it would be so much easier!

I do think though that it sounds like you did have Crohn's disease long before you were diagnosed, we just can't know that for sure and can't know how it was affecting you (extent of inflammation, location etc), but I do think that without an effective treatment that it's pretty rare for any parts of your bowel that are affected to get entirely better on their own but again I could be wrong.

For me the disease has stayed in the same locations since diagnosis - limited to the jejunum and ileum, with a normal healthy colon and no signs of disease seen with an upper endoscopy.

I do think it is sensible to do a survey of the whole gut at diagnosis and periodically as required. Because when you diagnose Crohn's, I don't think the doctors should be making any assumptions about the parts of the GI tract that it ISN'T affecting and it sounds like that's what your doctors are doing if they haven't ever done small bowel imaging.
03-20-2015, 09:26 PM   #4
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From what I've always understood, Crohn's can affect you anywhere between mouth to anus, it just more commonly shows up in the small intestine.
03-21-2015, 04:56 PM   #5
buttER
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You can definitely have Crohn's without having any disease in the terminal ileum. It is, I believe, simply the most common place to see signs of the disease.

As to it moving around, it can certainly affect more parts of the digestive tract than it has previously. When people talk about the disease 'moving' around I think they are most often referring to the situation where they've had trouble getting inflammation under control and developed complications, had those parts of the bowel removed and then the disease 'pops up' in another part of the GI tract. Anecdotally at least it doesn't seem very common to hear of people who say, for example, that they had inflammation in their colon and they got that under control only to find it's started in their small bowel but there may be people out there who experience that.

I think for you, or any of us pre-diagnosis, that it's really hard to say where the disease was and what it was doing without the imaging. In fact I think it is hard for you now since you don't have imaging of the entire bowel (we've talked about that elsewhere I know and I definitely think you should get small bowel imaging done just to check).

I think it is very understandable that we try to surmise a lot from the symptoms that we get but the reality is that the gut only has so many ways of acting up and there isn't nearly as strong correlation between a symptom or the location of a pain and a manifestation of Crohn's or a location or severity of inflammation as we would like there to be. I say that we would like that because I truly think it would be convenient and it's not like we can be having imaging all the time so we all are treating this disease while blindfolded to an extent and it's frustrating. We want those symptoms to tell us more than they do. As we say in my family, I really should have been made with a see-through panel so that we could check what was going on in there - it would be so much easier!

I do think though that it sounds like you did have Crohn's disease long before you were diagnosed, we just can't know that for sure and can't know how it was affecting you (extent of inflammation, location etc), but I do think that without an effective treatment that it's pretty rare for any parts of your bowel that are affected to get entirely better on their own but again I could be wrong.

For me the disease has stayed in the same locations since diagnosis - limited to the jejunum and ileum, with a normal healthy colon and no signs of disease seen with an upper endoscopy.

I do think it is sensible to do a survey of the whole gut at diagnosis and periodically as required. Because when you diagnose Crohn's, I don't think the doctors should be making any assumptions about the parts of the GI tract that it ISN'T affecting and it sounds like that's what your doctors are doing if they haven't ever done small bowel imaging.
24601 Yes thank you for all your replies in this and other posts. I still have so many questions.
I will ask the GI at the next meeting what he thinks about having some small bowel imaging. I wonder if it makes sense seeing as I don't feel like I have many symptoms except in the sigmoid area at the moment.

I love the idea of being see-through to help see what is going on! The snapshots we do get don't always seem to show the whole picture (judging from other peoples anecdotes too). Let's face it though, all those modern medicine machines really are amazing. But at the end of the day, no matter what the picture, it depends on the doctors experience, judgement, and flexibility more....I hope I have a good one.
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