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pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/7/2010 11:28 AM (GMT -6)   
I spent this week in the hospital again
My doctor is now questioning Celiac Disease or Crohn's
I thought I was already tested for Celiac, but he did a scope and took a biopsy and started me on a gluten free diet
He took blood to test for Crohn's...again, I would have thought this had already been done but maybe not...maybe they just relied on the pathology reports
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/7/2010 12:13 PM (GMT -6)   
Pam,

You wouldn't be the first to be dx with UC only to have Crohn's manifest AFTER surgery. It's very hard to differentiate between the two diseases and there is no 100% clear cut test to prove otherwise. There are several Crohn's jpouchers at www.j-pouch.org that can support you should this be your diagnosis. And don't despair over a wasted surgery; from what I have learned no matter which disease you have, UC or Crohn's, if the colon needed to be removed it needed to be removed. So you would have lost your colon even if your original dx was Crohn's.

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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/7/2010 12:25 PM (GMT -6)   
Thanks, Sue. Yes, the colon was completely diseased and needed to be removed no matter what. I just don't want to lose my pouch
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/7/2010 2:07 PM (GMT -6)   
Pam,

No of course you don't and you might not have to! There are several pouchers with Crohn's. Some are on Remicade, others are managing with the lower class drugs. Hopefully, if it is Crohn's, you will find a medical routine that will keep you healthy.

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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/7/2010 2:49 PM (GMT -6)   
Thank you! I am actually feeling really well today and have managed to spend the whole cleaning and I'm not tired out!
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day)

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