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If my UC flares virtually never have rectal involvement, does that mean it's likely Crohn's not UC?

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Ulcerative Colitis
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Posted 5/23/2012 3:07 AM (GMT 0)
My UC for the past few years always starts flaring mid abdomen, and I get the impression that it's "home" is the ascending and transverse colon. Granted, colonoscopies have always shown a sort of uniform, mild inflammation throughout the colon i e pancolitis, but the pain of flares tends to always begin and end deeo up in the abdomen. CT and endoscopy of the small bowel and colonoscopy have shown no crohn's of the small gut, though I am going to ask for a pillcam soon since that was some years ago.

Here I always see recommendations to fight flares with rectal meds, but in my case it seems a waste of time because that is always the last, almost final place that my UC pain seems to bother me, not including the acidy effect of multiple D on the butt. Anyway, I am wondering if anyone else here on this forum has UC like this or if this sounds more like Crohn's... Its not an academic question for me because I am certainly starting to give serious thiught to jpouch surgery to end this nonsense.
Posted 5/23/2012 3:11 AM (GMT 0)
My mom's UC was similar to yours, very rarely affected her rectum, bothered her colon more often. Getting an upper GI series is probably still a good idea but your experiance doesn't necessarily mean it can't be UC.
Posted 5/23/2012 3:26 AM (GMT 0)
are you talking just the pain you get? or actual visual inspection/biopsies that show no inflammation in the rectum?

q
Posted 5/23/2012 3:29 AM (GMT 0)
Scopes have shown pancolitis all the way to rectum... But the flares sure as heck start and end, and hurt by far the most (typically with no rectal soreness at all) , deeper up the abdomen, well away from the rectum.
Posted 5/23/2012 12:55 PM (GMT 0)

i have a similair situation.  I have had inflammation throughout my colon but in patches.  a colonoscopy in 2009 showed inflammation in the rectum,  the sigmoid and then skipped to the transverse.   2/2012  cscope showed one isolated patch in the sigmoid and nothing in the rectum.  I get alot of pain higher up like you say.  i dont have rectum pain.

from 1991- 2006 i was told it was crohns.  new gi suspected uc, did that promethues test, it said uc, so she believes i have uc despite the patchiness.  i have nothing at all in my term illium.  i thought maybe it could be crohns colitis asked my gi, she says no its uc.....  I have tried oral entocort which is usually presecibed for crohns but that didnt do much.

i have had luck with lialda, it seems to have cleared everything in my colon except that one stupid patch in the sigmoid. 

i do use rowasa as that can reach up to the sigmoid, and so far it has gotten me closer to remission than anything else i have tried.

Posted 5/23/2012 4:36 PM (GMT 0)
i_love_coffee,

I personally don't agree with your GI....CD is always patchy, it's one of the ways the can tell the difference between CD and UC...I have crohn's colitis that has been active in my colon the entire 21 yrs that I've had it...it only affected my small intestine for a very short time, comes and goes in the rectum for me as well.

I don't understand why your GI would change your DX simply based on the fact that she's only seen it active in the colon especially if it's been patchy inflammation.

Even though the same meds are used to treat crohn's colitis as UC, that doesn't change the fact that a patient with actual CD shouldn't be aware of treating ther CD when and if it happens to start affecting other parts of their GI tract (with CD, this is anywhere from mouth to anus).

Did she ever do a small bowel series on you at any point since you became sick?
Posted 5/23/2012 6:26 PM (GMT 0)
I'd like to add a point Probiotic - just because the pain you feel is worse in the upper abdomen, does not mean that your flares begin and end there. Who knows how the nervous system in your gut is wired for pain detection and reporting? There are so many oddities in how pain is perceived and reported that it would be the last place I would look for more data.

sometimes if I scratch the tip of my nose it makes me sneeze.

Sometimes if I scratch my hip around the left SI joint I get a shooting pain in my right scapula. Weird!
Posted 5/24/2012 12:41 AM (GMT 0)
Pain in the abdomen doesn't always localize well (e.g. appendicitis). Just because you feel pain in an area doesn't mean that area is the source of the pain.
Posted 5/24/2012 12:44 PM (GMT 0)

pb4:  i too am in doubt about having UC and have considered going to another dr for a second opinion. 

as far as a small bowel series, no, i don't believe i have ever had one.  i have had a few endoscopies, as i also have gerd, heartburn, past hx of esophagitis, gastritis and + h pylori bacteria. 

Posted 5/24/2012 4:35 PM (GMT 0)
i_love_coffee,

See, nothing frustrates me more than a GI that bounces back and forth with a patients DX when they haven't even done complete testing...right off the bat when they "thought" you "might" have CD, they should have done a small bowel series of testing because CD can hide in all kinds of nooks and crannies with the way the small bowel has so many twists and turns. It's standard (where I live) that if CD is suspected, they proceed with a barium enema test...you would drink milk of magnesia and they would do xrays of your small intestines and another small bowel test they do (can't think of the name) they have you swallow a tab that makes you want to burp, but you have to hold the burp, the tab makes your small intestine expand and they use a different kind of xray to take pics...neither test is fun but they beat a colonoscopy as far as major discomforts go.

I hope you are able to find a new GI that will send you for proper testing....it's bad enough this one sees the patchy inflammation and then has the nerve to actually change your DX to UC just because it's in your colon, when it could be in your small intestines as well and the simple fact that it's suppose to be a no brainer for them when they see patchy inflammation because it's indicative to CD not UC.

Even if they don't find any inflammation in your small intestines, with having the patchy inflammation, that's enough to point towards CD...with CD the inflammation can also go deeper in the intestinal lining (this never happens with UC, it stays on the surface of the lining only).


Good luck!
Posted 5/29/2012 1:29 PM (GMT 0)
Good points raised in thread, thanks to all. I am definitely going to ask my Prescriber for a pillcam. My pancolitus, except on rare scopes where it was totally inactive, though, has never had colon patches free of at least mild erythema... And have never had a structure. And once flare gargers momemtum, rectum can hurt- it just never starts there.
Posted 5/29/2012 6:32 PM (GMT 0)
You don't actually know that it doesn't start there...you're confusing symptoms within your gut and assuming that's where the inflammation is.

Before I flare, I can have stomach discomfort, gas pain on the lower right and across the transverse.....but I know I have NO inflammation there.

q
Posted 7/13/2012 10:27 PM (GMT 0)
Thanks Probiotic for this post. It was exactly what I was searching for. Having been through multiple serious flare for 10 years, I thought I would be in familiar territory until this flare. Always before, it seemed to start in the rectum and up the left side. This time there was very little discomfort around the rectum. The urgency is in the morning with loose, bloody stools and gas until I am sure I've gotten rid of the day before. Sometimes, 4-5 times. Now I have a sore abdomen, soreness that feels as if I were in a boxing match and lost. Also, intermittent shooting pains in all the abdomen area. A lot of bloating. I had a regular follow-up with my family dr. today and he prescribed Flagyl in hopes of calming any infection that's going on. My GI is sick and rescheduled my appt. for later this month. So, is this a natural progression of UC or do I have Crohns? I'm due a colonoscopy and upper endoscopy. I want those tubes to meet so I can find out what's going on. If anyone can shed anymore light on this, I'd sure appreciate it. Thanks.
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