Colon (Large Intestine) Only - Anyone?

[suschex]

I am looking to connect with others on the forum who have Crohn's Disease that only effects their large intestine/colon..

I was dx'd in Oct 2010 with severe, advanced pancolonic disease. This forum has been a life saver educationally and emotionally! I can't imagine the last 3 months if I had not found the forum!

One thing I have come to realize is that some issues that effect people with CD are very different depending on "limited to or not limited to" colon involvement. Things such as absorption issues of vitamins and nutrients, weight loss or issues gaining weight due to the absorption, spreading of the disease, surgery timing, etc.

I was really, really hoping to find some specific information or annecdotal information on colonic Crohn's Disease for living with, treating of, surgery on, disease course, etc...anything would be great!

I am very aware that everyone's disease is very different, that the disease can spread out of the colon, that those with any type of disease can have any type of symptoms...I am just looking for information to help, not to start any sort of problems.

Hope this is O.K.

Thanks :kiss:

 

[Rebecca85]

This doesn't apply to me, but I was wondering if the UC folk might have good relevant info?

 

[hawkeye]

Suzanne - that is where my Crohn's is (now anyway). When I was diagnosed in 1990, it was more in the small intestine and small / large intestine transition area (I was 17 at the time and the initial diagnosis / treatment occured quickly so my memory escapes me a bit).

I had a flare in 2006, but since late 2009 have been dealing with multiple flares (as recently as now) in my large intestine that has led to some narrowing. The pred seems to make things better until the next flare.

Mark

 

[glum chump]

My disease has been almost exclusively in the large intestine. And perianal involvement, as well.

It's one of the reasons why I had an ileostomy---I just couldn't live with the colon that was doing nothing but giving me grief. I had tried all available drugs, including any current drug trials, but I failed at everything. Not being able to eat, and with non-western medicine also having limited effect, I knew that surgery was the way to go.

Having an ileostomy has given me my life back. Its not only that I'm not in pain anymore and able to eat again. It's also that some of the extra-intestinal manifestations (skin ailments, joint pain, recurring cysts, etc.) have flown the coop. Interestingly, my taste buds have sharpened again, and I taste the same foods I ate before surgery in a different way now.

I'm not sure if this helps you at all, but for me, 11 years of trying to get something going in my body that would help heal my large colon was enough.

I hope you're able to find something that works for you...

Regards,

kismet

 

[lookame]

mine is exculsive to the colon only. It actually appears like UC but since my biopsies and serology 7 bloodwork came back crohns positive that is what I have. There has been much controversy in reguards to which it is though.

 

[Nyx]

My disease is all in my colon as well. I have a permanent colostomy now, as I was having many of the same problems as kismet, and I don't regret having a stoma for a moment. It gave me much relief and eating is a pleasure these days...lol

I hope you get yours under control and find a treatment that works for you

 

[littlefreebird]

my crohn's was just in my large intestine. dx in 2001. the past 2 years i had a lot of perianal involvment too which was very painful, i developed a fistula and in july 2011 had colon, rectum and anus removed...have an ileostomy now and for the first time in 11 years have no crohn's symptoms whatsoever, im praying the crohn's never returns.
had a good spell of remission in 2005 for 5 years- thanks to remicade, i slowly developed immunity to it and it eventually stopped working.