I have trouble with Pouchitis-

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treebs
New Member


Date Joined Aug 2006
Total Posts : 19
   Posted 5/13/2009 8:38 PM (GMT -6)   
Okay Folks-
I havent been on this website in a long time,  so heres my situation...  I was Diagnosed with UC in 2006, battled it for a year, tried everything possible.  One day the Doc calls me up and says, "you're showing signs of displacia, which can easily lead to cancer.  We need to take your colon out ASAP."  He was very persistant, he seemed like he was very concerned about what may be developing.  I was only 18 years old at the time.  So I had a total Colonectomy with a complete reversal, the internal pouch, the whole 9 yards.  Not too long after I had my reversal, maybe a couple of weeks later, a nasty episode of pouchitis set in.  At the time I was one of those guys that would wait until I simply couldnt take it anymore before I called the doc.  So I called him up, told him what was going on and immediately with out even seeing me in his office he put me on 250mg 4 times a day. within 48 hours I was pooping like I champion!  I mean seriously, this was one of those moments where I just hadn't felt better in a VERY long time.  I was having 3 bms a day, it was coming out in SOLID PIECES!!!  I was able to go a FULL work day including an hour and a half round trip commute with out a single bowel movement.  I was feeling AMAZING ladies and gentleman.  I was working in a machine shop doing general labor in the middle of August with a heat index at 110 degrees and I was kicking ass and taking names.
 
So I told you all of that to make this point ->   I know how I am capable of feeling with my current condition(s).  I felt that way before I should be able to feel that way now right?  Well Flagyl just isnt doing the trick like it used to, and everytime I go off of it it takes me to a position that I simply am not comfortable in, im not completely miserable, but 8-10 bms per day for me is just too much.  So if there is anyone out there who can tell me what to do to keep pouchitis out of my life and get back to where I was for that short period of time!!!  I would be so grateful.  I know everyones bodies are different and respond diferently to certain things but PLEASE any advice!!!

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/13/2009 9:06 PM (GMT -6)   
There's a pouchitis discussion board at www.j-pouch.org  You might get some tips there.
 
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


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16728
   Posted 5/13/2009 9:07 PM (GMT -6)   
Sorry, I don't think you will get too many responses here as most of us have not yet had surgery. I hope you get some responses from the folks who have jpouches but there are probably only 2 or 3 who post here. I think 8-10 BMs a day is quite a few but I have heard that is pretty average for having a pouch, 4 would probably be on the low side. I have seen people say everytime you pee, you have to empty your pouch. I usually pee about 5x a day, maybe more.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
 


treebs
New Member


Date Joined Aug 2006
Total Posts : 19
   Posted 5/13/2009 11:14 PM (GMT -6)   
thanks so much!

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/14/2009 10:24 AM (GMT -6)   
Are you on a probiotic? I've heard that one in particular, VSL#3, is really good at keeping pouchitis at bay.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


treebs
New Member


Date Joined Aug 2006
Total Posts : 19
   Posted 5/15/2009 12:43 PM (GMT -6)   
Yeah I've been taking VSL3, i've gone through two boxes now, and I guess you could say I have noticed a difference, but its just really hard to know... you know what I mean?  The other problem is that VSL3 is terribly expensive :(  They suggest using it 2-4 times per day,  and a pack of 30 costs $80.00

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/15/2009 12:44 PM (GMT -6)   
There is a prescription version of VSL#3 and if your insurance will cover it, it might be much less expensive.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 5/15/2009 11:28 PM (GMT -6)   
How common (%) is pouchitis?

Thanks
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3-4X per week
Curcummin and Probiotics/Rueteri.
Bowel Soother and IntestiNew, Fish Oil, Calcium/Mag/Zinc, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Could never tolerate artificial sweetners
I try to excersice/swim daily
Did I happen to mention I HATE this disease!!!
 
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