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pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 4/14/2010 3:53 PM (GMT -6)   
this is probably not the best place to ask about this, but I know at least a few of you no longer have an ostomy and have a j-pouch. I have pouchitis for the 3rd time (2 times before I even started using the pouch). It is very uncomfortable and makes me throw up a lot. I am on Flagyl for it. The other 2 times I was in the hospital and got Flagyl enemas or IVs and responded to it very quickly. Since I've had it so many times already, is it likely that it will often re-occur for me or did any of you have it a lot at the beginning and then it settled down? I am just worried that I am going to be forever sick even after the surgery. There just seems to be something more going on and it doesn't matter that my colon is gone, now my body is just attacking other parts.
27 year old female
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 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery 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), TPN 12 hours/day. Hoping the fistula doesn't return!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 4/14/2010 8:20 PM (GMT -6)   
oh no Pam.
I don't know, but I wanted to let you know that I'm thinking about you *hugs*.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 4/14/2010 8:54 PM (GMT -6)   
Pam,

Are you sure it's pouchitis? Typically vomiting is not a symptom of PI. I think you should ask around at www.j-pouch.org

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 4/15/2010 8:06 AM (GMT -6)   
Sue, my doctor has done a scope each time and said it was pouchitis. He said it could make me sick in general. The vomiting may not be from it, as I have had it on and off forever

Chas, thank you!
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 500 mg (3/day), IV fluids 4 hours/day, TPN 12 hours/day


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 4/15/2010 9:33 PM (GMT -6)   
At my checkup today my surgeon said flu-like symptoms are a sign of pouchitis so I could see the vomiting as a symptom. It seems like a lot of people have to rotate antibiotics when fighting pouchitis. It might be worth it to try something else for a round if the Flagyl isn't working. Like Sue said - check jpouch.org - there's a whole forum there just for pouchitis.

GL!!
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010
Surgery #3 scheduled for 3/23/2010


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 4/16/2010 10:13 AM (GMT -6)   
Well, the pouchitis is starting to clear up because I don't have the constant pressure. It's still there but not as bad. The nausea and vomiting is just getting worse, though. I haven't been able to eat since Sunday and even then it was just a tiny bit
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 500 mg (3/day), IV fluids 4 hours/day, TPN 12 hours/day


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 4/17/2010 8:45 PM (GMT -6)   
I'm glad to hear that the pouchitis is clearing up but that's horrible that the nausea and vomiting is getting worse. Have they run any tests to check for a blockage or do they think that it might be dehydration still causing the nausea? Have they upped your IV liquids to see if it will get rid of the nausea and vomiting?
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010
Surgery #3 scheduled for 3/23/2010


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 4/18/2010 7:46 AM (GMT -6)   
He put me back on IVs for 4 hours. It's not a blockage as I don't have pain and I have a lot of output. My bloodwork on monday showed I wasn't dehydrated but I started vomiting on Sunday, so I just have no idea. I'm getting worse every day so I'm likely going to have to go in to the hospital this week.
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 500 mg (3/day), IV fluids 4 hours/day, TPN 12 hours/day

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