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Posted 10/17/2008 5:35 PM (GMT 0)
Hi all,

 

I was diagnosed with moderate UC (Pancolitis) at the end of March.  This week I decided to go see the top IBD doctor (Dr. Targan) at Cedars Sinai in Los Angeles.  He changed my diagnosis to mild crohn's colitis.  He said I only have it in my colon.  Anyway, if any of you have this disease can you please tell me about it?  How you are doing, what meds you are on and etc.?  I am taking 4 Lialdas in the morning, as of yesterday.  Before that, I was taking 2 Lialdas.  I was doing okay but I did have some bad days here and there.  I was also told I probably have IBS.  I have had major anxiety since being diagnosed back in March.  I am going to start Paxil today to help with the IBS and anxiety. 

 

Thanks for any information you can give me.  I really appreciate it.

 

Tami

Posted 10/17/2008 6:03 PM (GMT 0)
Hi Tami :)

I have crohn's colitis as well (for the last 17 yrs with no full remission due to complications with perianal crohn's skin tags)...the same meds are used to treat crohn's colitis as used to treat UC...I am actually either allergic or non-responsive to traditional oral RX, I do well with cortifoam when me CD affects my rectom (proctitis) otherwise I basically altered my diet (no more junk or processed garbage) I do the natural route taking natural anti-inflammatories (bee propolis, chamomile tea, omegas 3-6-9, vitamin A, vitamin C-calcium ascorbate) and I also use a good probiotic and fibre supplemens...I use all the above mentioned on a daily basis and my GI encourages me to continue with it, in fact he was the one who told me to add the fibre supplements to my daily regime.

I also exercise regularly...I've gone from having 30+ bm's/day with lots of bleeding and mucus and severe lower back pain to 5 bm's/day no more bleeding, mucus or back pain...I still obviously have issues with frequency because 5/day is not the norm for me, and I still have issues with urgency as I cannot hold it for long and don't have the bowel control I used to before getting sick....but at least my stools are formed as well, where as before they were more of a D or mush consistancy.

Everyone is different and what works for some doesn't work for all but probiotics and fibre supplements (so long as there are no stricturing issues) are 2 staples when dealing with IBD and IBS, like you I also have IBS which I developed about 7 yrs ago, 10 yrs into already having crohn's.

:)
Posted 10/17/2008 7:14 PM (GMT 0)

I too have Crohn's colitis and am curious-maybe pb4 can help since she is so knowledgeable-I was on asacol but my new GI said it won't be enough as asacol is only effective on the colon. Hello? Am I missing something? Isn't colitis strictly in the colon?

Anywhoo, she put me on 6mp which I couldn't process properly and now she's talking about Humira. I am going to a Naturopath now with some success so I will be holding off on the "big guns" for now.

Posted 10/17/2008 9:13 PM (GMT 0)
Yup, asacol is to treat inflammation in the colon...do you maybe have CD affecting other areas in your GI tract, if so then you would need to be on meds that target those areas, meds used for the small intestine and/or meds used to target the rectom.

Maybe she meant that the asacol by itself wasn't doing the trick?

:)
Posted 10/17/2008 9:17 PM (GMT 0)
I don't know. I was on Sulfasalazine when my last (2nd time only) flare hit and they switched it to asacol, which she quickly said wasn't enough. I was almost positive it was limited strictly to my colon though. confused
Posted 10/17/2008 11:25 PM (GMT 0)
You should ask her where all your CD is affecting you, and you should also question her on anything she says to you that does not make sense.

:)
Posted 10/18/2008 2:23 AM (GMT 0)
I too have Crohn's Colitis.  I'm on Humira and Asacol. My GI told me that the Humira wouldn't work without a base drug...which is Asacol.  I'm doing ok.  I really don't think the Humira is working.  Good luck and hang in there!

 

Posted 10/18/2008 2:50 PM (GMT 0)
Thanks for all of the replies. Does anyone know if crohn's colitis can spread to the rest of the digestive tract or does it always just stay in the colon?
Posted 10/18/2008 4:36 PM (GMT 0)
Crohn's can spread, as in it can affect more than one area at a time, when I first got sick it was in my small intestines, colon, rectom and of course anus with perianal crohn's skin tags (which I might add, the skin tags have stayed constant due to complications with them, and it's also remained in my colon the entire 17 yrs I've had CD and it comes and goes in my rectom referred to as proctitis).

:)
Posted 10/18/2008 4:42 PM (GMT 0)
Hi pb4,

How do you have crohn's colitis if you had it in your small intestines? My GI told me the reason it's called crohn's colitis and not just crohn's is because it's only in the large intestines. These two disease are very confusing!
Posted 10/18/2008 5:06 PM (GMT 0)
Because crohn's can affect any part of the GI tract at the same time, crohn's colitis is CD affecting the colon but at the same time you can have ileitis (CD affecting the small intestine) and proctitis which is CD affecting the rectom, as I did all at the same time.

Crohn's is crohn's disease which was named after the Dr. that discovered it. Because crohn's can affect any part of the GI tract they medically term each area...It invariably affects the gastrointestinal tract and most gastroenterologists categorize the presenting disease by the affected areas. Ileocolic Crohn's disease, which affects both the ileum (the last part of the small intestine that connects to the large intestine) and the large intestine, accounts for fifty percent of cases. Crohn's ileitis, affecting the ileum only, accounts for thirty percent of cases, and Crohn's colitis, affecting the large intestine, accounts for the remaining twenty percent of cases, and may be particularly difficult to distinguish from ulcerative colitis. The disease can attack any part of the digestive tract, from mouth to anus. However, individuals affected by the disease rarely fall outside these three classifications, being affected in other parts of the gastrointestinal tract such as the stomach and esophagus. Crohn's disease may also be categorized by the behaviour of disease as it progresses. This was formalized in the Vienna classification of Crohn's disease.[10] There are three categories of disease presentation in Crohn's disease: stricturing, penetrating, and inflammatory. Stricturing disease causes narrowing of the bowel which may lead to bowel obstruction or changes in the caliber of the feces. Penetrating disease creates abnormal passageways (fistulae) between the bowel and other structures such as the skin. Inflammatory disease (or non-stricturing, non-penetrating disease) causes inflammation without causing strictures or fistulae.[10][11]

:)
Posted 10/18/2008 5:15 PM (GMT 0)
Also, you might be getting confused with ulcerative colitis, which is also inflammation of the colon, but is different slightly from crohn's disease...UC is limited to the colon/rectom so a UCer will not have issues with their small intestines or any other part of their GI tract (although many do complain of mouth ulcers as well).

The inflammation in UC differs from CD, with UC the inflammation remains on the surface of the intestinal lining, with CD it can affect the many layers of the intestinal lining...also with UC the entire area will be inflammed, with crohn's there are skipped patterns of inflammation (healthy tissues amongst inflamed tissue).


You might find this link helpful as well...

http://www.ehealthmd.com/library/crohnsdisease/CD_types.html


Just copy and paste into your search engine since I can no longer activate links on my stupid computer anymore.


:)
Posted 10/18/2008 5:36 PM (GMT 0)
I was diagnosed with UC in March but then I saw a new GI last week. He looked at my colonscopy report and said I have crohn's colitis because I have patchy inflammation. And, it's limited to my colon. So, even though right now it's in my colon, it can spread to my small intestines and elsewhere ... is that correct? If so, that's very depressing! :'-( One more question ... if my case is mild does that mean it will stay mild or can it get worse? I'm afraid to hear the answer.
Posted 10/18/2008 5:41 PM (GMT 0)
If you have crohn's colitis that in fact means you have crohn's and yes, crohn's can affect any part of the GI tract, unlike UC which is limited to the colon/rectom.

It could very well stay mild, in one of my CCFC journals it explains that they've found a cluster of 9 different genes that predict the behavior and severity of the disease over time. Of course much needs to be learned still, but don't stress, if you're mild then keeping low stress is a good way of keeping a handle on it...hopefully.

Rest assured though, the same meds used to treat UC are used for crohn's colitis as well, so if those are working for you then that's great.

:)
Posted 10/18/2008 5:55 PM (GMT 0)
pb4, thanks for all of the information. I appreciate it.

Tami
Posted 10/18/2008 6:56 PM (GMT 0)
Not a problem, if you have any more questions, I'll do my best to help!

:)
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