Those of you with Crohn's colitis...

[izzi'smom]

...what is YOUR story?
My dd's MD calls HERS Crohn's colitis because it presents to the scope like UC (Large intestine only) but they found a granuloma which makes it UC.
I'm confused.
So I've seen a few signatures with Crohn's colitis-
(and THANKS to you all...every time I say it to someone here they say I'VE never heard of THAT...GRR!)
Thanks in advance for enlightening me!

 

[DustyKat]

Hey Angie,

Crohns Colitis affects about 20% of people with CD. They can usually they tell CC from UC by the appearance and location of the disease. UC presents as continuous inflammation and always affects the rectum whereas in CD the inflammation tends to skip areas of the bowel, so inflamed-healthy-inflamed and the rectum is not always involved in CC.

They generally do say that granuloma's are a definite diagnostic measure of CD and are not present in UC. The irony being my son has Ileal CD and he has no granuloma's present in his pathology! :lol:

No doubt there will be others along that actually have CC, so I'll stop my musings now!

Much love, :Karl:
Dusty. xxx

 

[Crohn'sFor Life]

My GI says I have Crohn's colitis because I have severe inflammation in both my ascending and descending colon, but no inflammation in my traverse colon.

 

[Cookie]

Yes, I have a Crohns Colitis diagnosis as well. My understanding is that it is just a way of saying Crohns Disease confined to the colon. Mine is in the descending colon and rectum. It was differentiated from UC by the granulomas and also because I have fistulas that do not occur with UC. Crohns affects deeper in the tissue where as UC affects the surface, but tends to be more wide spread and is also continuous, where as, as Dusty said, Crohns can skip around. From everything I have gathered, although bleeding can be associated with UC or CC, blood tends to be more prominant in UC cases.

 

[Misty-Eyed]

I have inflammation in my transverse as well, Crohn'sFor_Life and I still have CC.

Dusty was correct with everything she said about CC. My diagnosis wasn't clear from just a colonoscopy though. They thought I could have either Crohn's or UC. Obviously we were hoping for it to be UC but the histology sample came back with a Crohn's diagnosis. It's very obvious now that I have Crohn's though, even though it's only in my colon.

People with CC often think they've been diagnosed with both Crohn's AND UC, which isn't true. The names are just confusing!

 

[Lisa]

For years my diagnosis went back and forth between Crohns' and UC (first diagnosis was UC).....as far as I know, when I flare my affected areas are in my large intestine, not in the small (although that may have changed over the years.

I have had granulomas, ulcers, bleeding, etc over the years too and developed fistulas around 2003.

 

[MissMandy]

I have inflammation in my transverse as well, Crohn'sFor_Life and I still have CC.

Dusty was correct with everything she said about CC. My diagnosis wasn't clear from just a colonoscopy though. They thought I could have either Crohn's or UC. Obviously we were hoping for it to be UC but the histology sample came back with a Crohn's diagnosis. It's very obvious now that I have Crohn's though, even though it's only in my colon.

People with CC often think they've been diagnosed with both Crohn's AND UC, which isn't true. The names are just confusing!

This is what I have thought for the entire time I since I was diagnosed! No wonder I didn't like the GI that diagnosed me! They called me on the phone and just told me the results were that I had CC and I assumed it meant both, they never explained to me what it meant. It wasn't until this most recent hospitalization that I found out that it meant the Crohn's is only in my colon. No idea where in my colon though, I think they said it's both in my left and right side? I know it started out in my right. I also have no idea what the word granuole (Sp) means and I am pretty sure it hasn't affected my rectum yet. I have a follow up with my new GI next month and I plan on asking lots of questions!

 

[MissMandy]

My new GI also told me that with CC, if it has not been found in your small intestines, (like me) the CD is not as likely to re-occur after surgery to remove the affected area. So if I have surgery to remove my colon, I will *basically* be "cured" of the CD?

 

[Misty-Eyed]

It's ok MissMandy. They don't tell me everything about my Crohn's either. Half the time I find things out via letters sent back to my GP that I'm cc'd on.

Did you mean granuloma? It's a certain clump of specific cells which you can only see under a microscope. This is why you have biopsies taken when you have a colonocopy.. so they can see how your crohn's is on a cellular level. Hopefully that makes sense.

 

[Misty-Eyed]

Also.. unfortunately having your colon out is not a cure. Because Crohn's can locate itself anywhere in your digestive system, you'll always have the risk that it could relocate anywhere else. How long it would take or the chances probably vary from person to person. Saying that, it's definitely possible that you could remain in remission for a good few years plus.

 

[Cookie]

I have inflammation in my transverse as well, Crohn'sFor_Life and I still have CC.

I think that what CFL was saying is that the distinction was made between CC and UC based on the fact that the inflammation was in two distinct places in the colon and not continuous. This is just one of several attributes that distinguishes between the two. As I understand it, UC always presents itself in one continuous pattern.

 

[Misty-Eyed]

I think that what CFL was saying is that the distinction was made between CC and UC based on the fact that the inflammation was in two distinct places in the colon and not continuous. This is just one of several attributes that distinguishes between the two. As I understand it, UC always presents itself in one continuous pattern.

Ooo I see what you're getting at. That makes complete sense. You are right, UC is continuous. I just didn't read enough into the post. I'm blaming it on it being Friday lol.

 

[Cookie]

I hear what you're saying! I am having a difficult time staying focused today. Here in the US it's a three day weekend for us and I just need to make it through this workday. It's been a looong week and my brain has already checked out!

I hope everyone in the US has a great Memorial Day weekend and everyone else, enjoy your weekend too!

 

[MissMandy]

Also.. unfortunately having your colon out is not a cure. Because Crohn's can locate itself anywhere in your digestive system, you'll always have the risk that it could relocate anywhere else. How long it would take or the chances probably vary from person to person. Saying that, it's definitely possible that you could remain in remission for a good few years plus.

That's what I thought too and that's why I asked my GI what my chances are of a reoccurance if I have to have my colon removed, and that was when she told me that because the crohn's is only in my colon, it is very unlikely that the disease will move to another spot since it hasn't already. I know there was a specific spot she called it, but of course I can't remember it now. She even had the other Dr look at my last colonoscopy results to double check that they hadn't found the disease in the area she was talking about. Now, of course, I realize that nothing is impossible

 

[Misty-Eyed]

That's what I thought too and that's why I asked my GI what my chances are of a reoccurance if I have to have my colon removed, and that was when she told me that because the crohn's is only in my colon, it is very unlikely that the disease will move to another spot since it hasn't already. I know there was a specific spot she called it, but of course I can't remember it now. She even had the other Dr look at my last colonoscopy results to double check that they hadn't found the disease in the area she was talking about. Now, of course, I realize that nothing is impossible

The ileum?

 

[DustyKat]

Misty is right MissMandy and I don't why your GI would say that removing your colon will cure you. If you have UC it will but not CD.

Perhaps when you have your CD isolated to one area of the bowel it increases your chances of staying in remission for a longer period of time following surgery. The reason I say this is because my son has just had surgery and the surgeon said to him, "because your disease was in the ileum only you have a much better chance of maintaining surgical induced remission than if it was also located in your large bowel".

I think Misty pointing to the ileum as the area they were looking at to be free of disease is spot on. Disease there as well as the large bowel would mean you have ileocolitis, this is the most common of the 5 types of CD.

Dusty.

 

[lookame]

Mine looks like UC under a scope but blood tests and biopsies state crohns