I'd love some help and advice please re-garding J-POUCH

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lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 6/9/2009 9:53 AM (GMT -6)   
Hi:

I have been a member of the Crohn's Disease forum for quite sometime.

My disease is very severe and with my Crohn's my whole colon is involved.

I have been told by my doctors that I have no real options left besides #1. live like I am #2. have my colon taken out. Of course I am very scared and thought this would be the best place to come first.

I am scheduling an appt with the surgeon today so we will see how that goes. I will schedule it so that my husband can come with me.

I guess I would just love to hear from those of you who HAVE had success with the surgery, what the process is like etc. Really, anything will help @ this point.

ALSO: does mesalamine anemas seem to help any of you @ all?

Thanks sooo much, Brittany/LOVEPINK
I have had Crohn's since I was 21 years old and I am now 28!!
Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/9/2009 11:40 AM (GMT -6)   
First, your doctors will need to confirm that your Crohn's is limited only to the rectum. A jpouch is not advised for Crohn's patients who have the disease in the small intestine. You won't meet many people here who have had surgery but you can meet them on HealingWell's ostomy thread or at www.j-pouch.org I had jpouch surgery for UC and it has been very successful.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 6/9/2009 12:54 PM (GMT -6)   
Yes, I know that and have already been through all of that. It has been 9 years and several tests to determine that and have already determined that my Crohn's is in the colon. Still a mystery. I have Crohn's, just a very unique case. Okay, I will check the forum/sites you told me to check out! I wanted to hear from UC patients who have a J-POUCH and hear what they have to say. Thanks, LOVEPINK
I have had Crohn's since I was 21 years old and I am now 28!!
Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

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