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Collicat
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Date Joined May 2009
Total Posts : 827
   Posted 6/21/2010 11:35 AM (GMT -6)   
Hi Suebear....just wondering if you have had any issues with pouchitis and if so did you have trouble figuring out that was what was going on? idea

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/23/2010 7:01 AM (GMT -6)   
bump
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/23/2010 5:00 PM (GMT -6)   
Sorry to see this post so late; I am currently traveling through Colorado.

I have had pouchitis once in 9 years and it was last year. After reading about it for so many years I knew exactly what it was when I started experiencing symptoms. I had abdominal cramping (which I never get), increased frequency, and feelings of malaise. I was prescribed Cipro over the phone by my surgeon and started feeling better within 24 hours. The only thing I don't like about Cipro is the hangover after the 10 day treatment. If I get it again I am going to request Flagyl which I like better as an antibiotic.

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


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 6/23/2010 8:57 PM (GMT -6)   
Thanks for the info Sue and the bump Ohio76.

My son, who has been doing great for the last 4 months since his take down, is all of a sudden in the bathroom much more often. I have questioned him about it and he gets very defensive and says that everything is fine and not to "bug" him. I cannot get much information but he does say he thinks it is the high protein drinks he is having after going to the gym. He says the only symptom he has is watery D, no pains, fever etc.

I am trying to leave him alone and not worry....but I cannot help it.

.....Should I just leave him alone?

Thanks....as always us moms worry so much.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/24/2010 6:55 AM (GMT -6)   
Both of you have been through so much...it's a 'normal' mom duty to worry!!!

If it is the protein drink, maybe he can try a different brand that won't bother him as much?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 6/24/2010 9:00 AM (GMT -6)   
Thanks....my worry is that it is not the protein drinks at all but pouchitis starting up. Sometimes I hear him in the bathroom two or three times with in a couple of hours. Up until last week he was only going about 6 times a day.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/24/2010 7:54 PM (GMT -6)   
I think if he had pouchitis he would be complaining. It's pretty uncomfortable. It might be his diet. If he is consuming lots of foods or beverages his frequency will be higher. Mind you many of us pouchers eat foods and drink beverages that increase our frequency and it doesn't bother us! We would rather enjoy life and put up with the extra bathroom trips than be denied what we love. He will work this out and manage his diet/life as he sees fit. Try not to worry. I am always trying to persuade pouchers to eat a variety of foods; so many seem to get contrary information but really we can eat anything.

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 6/24/2010 8:28 PM (GMT -6)   
I do have increased frequency with pouchitis, but like Sue said, it's also uncomfortable and painful
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;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement
Was on TPN and IV fluids 2/10-6/10
Flagyl 500mg (3/day), Prednisone 40 mg, Culturelle, D, B12, Iron (2/day), Lomotil (2 tsp 4/day), Lortab, Starting Humira 6/28


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 6/24/2010 10:20 PM (GMT -6)   
Thanks guys you are easing my mind. I also know that even if it is pouchitis it is not the end of the world but I would really like to see him get some serious time of feeling good. I think we could easily deal with pouchitis if it rears it's ugly head in a year or two, I would just rather not see it now.

Suebear I hope you are enjoying your trip....you seem to live a great life.

Pam222...I hope you are coping okay....I have been reading your story and I worry about you. I truly hope that now that the docs have a better handle on your condition that you will find relief.

Thanks again and I hope you both have a great day tomorrow!....You too OHIO76

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/24/2010 10:47 PM (GMT -6)   
Thank you. I guess they don't really know anything new. I spoke with my surgeon more and he sent me all the surgical and biopsy reports and they always knew I had inflammation above the pouch, but they still don't think it's Crohn's Disease. Only the new GI I saw at the hospital recently thinks it is. They really just don't know what is going on. Hopefully the Humira will help, though.

I hope your son continues to feel well!
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;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently: Flagyl, Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Starting Humira 6/28

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