Not sure what to do.. CD vs UC

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isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 7/3/2009 5:30 PM (GMT -7)   
I have recently changed docs and my first doc was sure I had crohn's he saw that through colonscopy and endoscopy and all sorts of tests
Now my new doc is sure I have UC :S he has also done the full endo and colon scope and barium follow through.

The x-ray doc said he saw some crohn's in my ileum in the barium follow through, but my GI said he was just talking nonsense.

I am just so mixed up at the moment :S my new GI is trying to get my to participate in some UC study on a drug that is related to Tysbri but I am not sure I feel like I have not got any answers.

Cant they just decide if I have CD or UC, I just don't care which one just want to know what it is.

I have already accepted that I have crohn's and I feel like my doc is just messing with my head telling me that now I have UC :S And maybe when it fits him he will tell me that I have CD :S

I just don't understand how they can just change this, one day I have CD and the other UC

How did you doc make sure that you had CD and not UC?
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/3/2009 6:53 PM (GMT -7)   
Just to clarify, are you sure he said "ulcerative colitis" and not just "colitis" cuz often docs will just say "colitis" and people assume that the doc means UC when actually the doc means crohn's colitis.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 7/3/2009 6:55 PM (GMT -7)   
My GE is sure I have CD because the ulcers in my colon are bigger than the type seen with UC (smaller and more diffuse).

Butterfly Kisses
Regular Member


Date Joined Aug 2008
Total Posts : 32
   Posted 7/3/2009 8:32 PM (GMT -7)   
Well technically pb4 when doctor's say "colitis" it does NOT always mean Crohn's Colitis because my doctor often says "Colitis" but he definitely diagnosed me with Ulcerative Colitis (I have verified this). In my experience whenever people talk about Crohn's Disease or Crohn's Colitis Disease they just call it Crohn's to shorten it. And with UC I've often heard people just call it Colitis (as I do often myself) to just simplify it. But that's really not the point...

Isergodur- in my opinion mentally it doesn't really matter whether or not you have CD or UC...they are essentially the same...yes there are differences physically in the diseases but as far as mentally dealing with them it's the same...we both poo a lot, we both have a lot of pain...etc. So don't stress on the title of your disease so much. You should be more focused on whether or not your doctor is actually helping you to feel better. If not...get a new doctor if you don't feel comfortable with this one (which is the impression I'm getting.) CD and UC are so similar that it is very difficult for a doctor to diagnose them. That is widely stated in articles I've read. However, to simplify as my doctor did for me...UC is constant in your body, there are no gaps in between diseased area whereas with Crohn's it can skip and jump around and not be all in just one spot. Crohn's can also cause fistulas that can poke through your intestines (very bad) whereas UC doesn't go as deep. CD goes through more layers of your intestines whereas UC sticks closer to the surface layers. Perhaps you should go to mayoclinic.com and read up on both CD and UC and maybe if you understand the diseases better (if you don't already) it can help you to feel better about them. All the meds I've been on treat both CD and UC so as far as treatment that's not much different either.

My doctor came to the determination of UC since my diseased areas were all consecutive and that it didn't go very deep into the tissue of my intestine. Also by where my diseased areas were (in my left side). That is what he told me. But like I said, if you aren't comfortable with your doctor you need to find a new one. This is a life long disease that you are going to have to learn to live with and if you are never happy with your doctor you will have a harder time dealing with this disease. My advice is to try to find a doctor that really listens to you and takes the time to answer your questions so that you understand what he/she is telling you. And never be afraid to ask questions...it's your body, you have the right to have as much information about it as you can possibly have. Good Luck!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/3/2009 9:03 PM (GMT -7)   
Well Butterfly kisses, that may be your experiance but mine (for the last 18 yrs) has been what I described above...I know it does not always mean crohn's colitis when they simply say colitis, but when your GI tells you that you have crohn's and then throws the word "colitis" out there, they are generally referring to crohn's colitis, they assume that you as the patient knows that's what they are referring to but they don't realize that it confuses many CD patients into thinking their DX has been changed and this is more common in occurance than what you realize.

With CD the inflammationn is typically deeper than with UC, but that is not written in stone either, milder cases of CD can also show inflammation on the surface of the lining only, it doesn't always go deep with CD it often in many cases depends on the severity.

DX isn't always difficult either, much depends on how good the GI is, the common differences are with CD it can affect any part of the GI tract from mouth to anus, UC is limited to the colon/rectom only....Typically (but not always) the inflammation with CD can affect the many layers of the GI tract where as with UC it's limited to the surface only...with CD there are skipped patterns of inflammation (healthy tissue in between inflammed tissue) with UC the entire area will be inflammed.

It does make a difference whether one has UC or CD, even though the same meds used to treat UC are used to treat crohn's colitis (CD affecting the colon) there are still good reasons to know which type of IBD (UC or CD) one is dealing with to be prepared for when CD is affecting other parts of the GI tract.
My bum is broken....there's a big crack down the middle of it! LOL :)


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/4/2009 6:42 AM (GMT -7)   
You know what I don't understand! If someone was just diagnosed with UC or Crohns why do some doctors have patients participate in studies before trying the normal couse of medications that are already out? I thought that the studies are for patients that have tried all conventinal medications and failed them. Do the doctors get some type of kick back from the studies or pharmicutical compainies?
Sorry about the Hi-jack just made me think about this.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Butterfly Kisses
Regular Member


Date Joined Aug 2008
Total Posts : 32
   Posted 7/4/2009 11:20 AM (GMT -7)   
You cannot generalize what doctor's say since every human being is different and may mean something different. Plain and simple isergodur you need to ask your doctor flat out what your diagnosis is. Perhaps even ask for a copy of your charts (past and present) so you can review what your doctors have found.

I guess it depend on the individual whether they want to put too much emphasis on whether or not they have Crohn's, Crohn's colitis or Ulcerative Colitis. Yes it matters as far as where your disease can go in your body but for me I guess I just know that either way I have to deal with possible flares and it's going to be hard no matter where they are but I know I am mentally strong enough and will get through it, either way I have an IBD and it sucks but I cannot let it consume my thoughts otherwise I will be miserable. That's what I meant about not worrying about if it's CD or UC so much. But all and all I do think you need to get it straight with your doctor and fully understand why this new doctor thinks it's UC rather than CD. Definitely do your research online about both diseases and then go and talk to your doctor, perhaps that will help you to understand what he/she is saying a bit better. Perhaps you did misconstrue what one of your docs said but perhaps your diagnosis just has changed since that is common since these diseases can be hard to differentiate between at times.
26 years old...Diagnosed with Ulcerative Colitis in 2002

Currently taking: Colazal 750mg 3 pills 3x a day, Imuran 50mg 3 pills 1x a day, Remicade & B12 Injections.

Have taken: Asacol, Lialda, Entocort, Prednisone, Limotil, Nulev, Librax, Canasa & Rowasa.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 7/4/2009 3:39 PM (GMT -7)   
Thanks for the answer's..

I am meeting my doc 13th July and hope to sort it out then. I would just love to know because I feel a little stupid when I get cramps and pain in my navel area and than I think it is Crohn's. but that should not happen if I have UC, I am just so confused :S

about the drug study is I have UC that is because Remicade is not doing any wonders for me and I have tried many different drugs..

I really don't care if it is UC or CD but the not knowing part bugs me :(

I am a little hard case my symptoms are all over the place and I really don't match any specific group
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/5/2009 2:15 PM (GMT -7)   
Here's a Wikipedia entry for UC:

Wikipedia

It has a useful comparison of CD and UC and a list of similar ailments as well as diagnostic methods and treatments. It does mention C difficile as a similar problem - have you been tested for that?

bookgal77
Regular Member


Date Joined Jul 2009
Total Posts : 83
   Posted 7/6/2009 3:46 PM (GMT -7)   
So many people have what is basically called "indeterminate colitis" which is there are presentations of both disease and no way to distinguish 100% between the two. It is what about 10% of the people with IBD have. It is definitely frustrating...I was diagnosed with ulcerative colitis in 2001 but found out this year that it is more like Crohn's colitis instead...but there's still not 100% certainty behind that. The treatments for both are pretty much the same so just make sure you are taking care of yourself overall and don't stress over whether it is UC or CD.
**Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009 (but still only impacts colon)
**Asacol (4800 mg daily), 6-MP (100 mg daily -- recently switched from Imuran), Prednisone (8 mg daily...for a few more weeks), Flagyl (250 mg every other day), Nexium (40 mg daily)
GOAL of one day being immunosuppressant free...still working on my doctor on this one but I am a world traveler who desperately wants to go to Africa one day!

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