How many bowel movements a day post-j pouch surgery?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

CollegeGrad85
Regular Member


Date Joined Mar 2009
Total Posts : 49
   Posted 11/26/2009 12:23 AM (GMT -6)   
I'm a 24 year old recent college graduate, always healthy until I was diagnosed with ulcerative colitis exactly one year ago.  I'm considering j-pouch surgery at this point because standard drug treatment has been ineffective.
 
For those of you who have had j-pouch, how many bowel movements do you have per day?  I've heard everything from 1 bm per day (one guy told me he was 100 percent back to normal) to 15-20 bms a day.  This is my hesitation: right now, I have 3-5 bms a day on average (on some bad days, it's more), so I'm hesitant to have surgery if it increases the bms.  My biggest issue right now is urgency and the adjustments it causes to my daily life.  Don't know what to do right now...
 
CollegeGrad85

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/26/2009 7:44 AM (GMT -6)   

How often do you urinate per day?

I ask that because frequency is one of the most misunderstood concepts for people contemplating surgery.  Yes, your frequency will be higher but there will be no urgency and you often don't know your pouch needs emptying until you go to pee.  To empty the pouch is a quick as urinating.

I have no idea what my frequency is but if I had to guess I would say in the 6-8 ranger per day; sometimes more depending upon what I eat.  I eat a lot of fresh fruits and vegetables so my frequency could be lower if I changed my diet but I am not about to do that.  If you are looking to go 1x per day that is not going to happen with any of the surgery choices.  It's highly unrealistic and I have a really hard time believing that anyone with a jpouch is going only 1x per day.  The jpouch is only 9-12" of storage capacity and that replaces 6ft. of colon. 

I am a long distance hiker (100-200 miles), I do international hikes, I backpack, and I work out daily at the gym.  If frequency was an issue I wouldn't be able to participate in these activities.  Really, my life is 150% better than when I had UC.

You can meet more jpouchers at www.j-pouch.org and get their feedback but I would not pursue this option unless you altered your expectations.

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


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 11/30/2009 8:26 PM (GMT -6)   
I am awaiting my reversal in January so I can't personally answer your question since I still have my temporary ileostomy. However, I can tell you that my surgeon says the bm range is 5-10xday. I should expect 8-10xday for the first year or so and then things should settle in the 5-6 range. I have also heard that you simply "go" while you urinate so it shouldn't be an issue for me cuz I pee every hour, lol! Best of luck in your decision.
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


Devin
Regular Member


Date Joined Dec 2005
Total Posts : 40
   Posted 12/1/2009 1:34 PM (GMT -6)   
Hi Grad,

I had my j-pouch surgery one year ago, and currently I have between 8 and 10 BMs a day; at least two of which are at night. For me there is sometimes slight urgency and often bad gas, but you learn to hold it until a convenient time to let loose haha. It's manageable, and far better than UC (which caused me to have 30+ BMs a day towards the end of my time with that disease). However, it is definitely NOT back to "normal" however - and probably never will be.

If I may say it, aside from the urgency, are you sure you have enough "reasons" for surgery? I can't and shouldn't judge your own personal situation and motives, obviously, but most people who have opted for surgery have lived with UC for a number of years, and have lived with severe symptoms (i.e. much more bowel movements than you are currently dealing with, plus usually other complications such as severe weight loss, blood loss, pain etc...). Surgery is a pretty big step, with a long recovery period, lots of potential complications, and therefore shouldn't be taken lightly. I'm sure you know this, but I thought I'd say it again :-)

Take care,

D

John in Tulsa
New Member


Date Joined Aug 2013
Total Posts : 1
   Posted 8/5/2013 10:40 PM (GMT -6)   
I had my colonectomy July 2012, and my take down October 2012. It's August 2013, and I currently have 15-30 BM per day with 10-15 at night (or about half). I'm seeing my gastroenterologist again, and he is prescribing different meds, none of which work. I'm a bit envious of those people who have a successful surgery and don't suffer this sort of setback.

I like fitness, and not only can I not participate in century rides and ultramarathon cycling anymore, sitting on a bike is more than I can bear sometimes for even 15 minutes because I "have to go" when I attempt riding.

Having read a post above, I haven't heard about not having urgency. I don't personally know any j-pouchers but I know I get a sense of urgency all day long, but my doctors both seem relatively unconcerned about that. It's really not postive picture I'm painting here, but it's how it is.

There are a lot of good results though, but not everyone.

Post Edited (John in Tulsa) : 8/5/2013 10:44:09 PM (GMT-6)


ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4527
   Posted 8/6/2013 4:56 AM (GMT -6)   
I want to second what Sue said about emptying your j pouch when you have to go pee. My average amount of times per day that I go is about 6. Sometimes less sometimes more. No urgency at all. My life has returned to normal as it was pre-UC.
Marianne

DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine (nasty!)-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)

PSUDOC
Regular Member


Date Joined Jun 2007
Total Posts : 360
   Posted 8/6/2013 6:03 AM (GMT -6)   
You need to be truly prepared going into this. First, there is always the possibility that you may not be able to have a j-pouch, and they won't know that until after you have your colon removed - so you could have an ostomy for life. Are you prepared for that possibility? And the surgeries can be tough. I am 2 weeks out from takedown, and right now, it's not much fun. I don't have urgency per se (I can hold it) but I do have pressure, am going 15+ times a day, and have terrible butt burn. This will get better, but it can take 3 months to a year to get more normal. For me, it was totally worth it. I don't think it's about how king you have suffered (although I had UC for more than 10 years), but about quality of life. At my worst, I was on massive doses of Prednisone plus Remicade - had tried fizens ifvither drugs too - and still flaring bad enough to keep sending me to the hospital. I had to wear adult diapers to get to and from work. I couldn't go anywhere without worrying about bathroom access. Exercising made it worse. In short, I was miserable. If you are not that sick or having your life significantly effected, I urge you to proceed with caution, because the surgeries are no picnic. They're only worthwhile if you really are out if other options.
Alison
Age 41, married w 10 yo girl and 4 yo boy, working professional
Diagnosed w UC 2002
Tried sulfas, 5ASAs, Imuran, Remicade, Canasa, Rowasa, and way too much Prednisone
Hospitalized 4 times w flares in 2012
Total colectemy 4/2/13
J-pouch construction and rectum removal 5/30/2013
Takedown 7/25/13

musicmaker516
Regular Member


Date Joined Sep 2012
Total Posts : 353
   Posted 8/6/2013 7:10 AM (GMT -6)   
LOL - a bit off topic here, but I noticed how many views this thread has & looked at the original date - 11/26/09..... wonder if CollegGrad85 chose surgery?
6/2011 - UP, Psoriasis
3/2012 - UC, moderate - severe
12/2012 - Sjorgren's, seronegative poly spondyloarthropothy

Apriso, Cortenema, Canasa, Prednisone, Humira, Colazal - failed,
Omeprazole 40mg/day
Lexapro 10mg/day
Colazol - 2250mg 3x a day
Humira - twice a month
Daily Multi, Calcium Citrate+D, Flax Oil, D3, Probiotics
Steroid Dependent - Surgery was 7-15

PSUDOC
Regular Member


Date Joined Jun 2007
Total Posts : 360
   Posted 8/6/2013 7:15 AM (GMT -6)   
Haha ... sometimes these old threads pop up and nobody notices the date if the OP :)
Alison
Age 41, married w 10 yo girl and 4 yo boy, working professional
Diagnosed w UC 2002
Tried sulfas, 5ASAs, Imuran, Remicade, Canasa, Rowasa, and way too much Prednisone
Hospitalized 4 times w flares in 2012
Total colectemy 4/2/13
J-pouch construction and rectum removal 5/30/2013
Takedown 7/25/13

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4527
   Posted 8/6/2013 7:59 AM (GMT -6)   
musicmaker516 said...
LOL - a bit off topic here, but I noticed how many views this thread has & looked at the original date - 11/26/09..... wonder if CollegGrad85 chose surgery?
Ha...didn't even notice that! I wonder too....
Marianne

DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine (nasty!)-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, August 19, 2017 7:12 AM (GMT -6)
There are a total of 2,857,412 posts in 313,505 threads.
View Active Threads


Who's Online
This forum has 155117 registered members. Please welcome our newest member, Bubbles11.
347 Guest(s), 6 Registered Member(s) are currently online.  Details
dmonica, skeener, BillyBob@388, NiceCupOfTea, Uncle Harley, scotchityscotch


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer