What do you feel when you have to go -- jpouchers?

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jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted Yesterday 8:48 PM (GMT -7)   
I have a severe case of UC and the urgency is brutal. Basically, if I don't run to the toilet immediately when I feel a slight urge then I end up with an accident.
 
I will most likely have surgery next spring-- my question: What does it feel like when you have to go with a jpouch? Is there urgency? this concerns me since this is one of worst parts of the disease for me. I have had soooo many accidents over the past two years.
Jackie, 43

Pancolitis, DX October 06

Lexapro, colazal 3x3, Sythroid, Protonix, Flagyl

10 infusions of Remicade- doesn't work
Severely anemic-

back up to 30 mg of pred
Added 6MP- November 25th
 
Surgery almost certain


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted Yesterday 9:11 PM (GMT -7)   
It's pressure, not urgency. It was funny, actually--it had been so long since I'd had normal sensation there that I had to ask around to find out what regular people feel when they need to have bowel movements. As far as I can tell, it's pretty close to the same--just more times in a day.

The best analogy I heard before surgery was that it's like the sensation of needing to urinate if you have a healthy bladder. Initially it's sort of background; you barely notice it. When your bladder gets more full, it becomes more uncomfortable. There is some upper limit to what the organ can hold, but it takes a long time to get there. Today, for example, I was out bowling with co-workers and just held it through the game.

I was in your shoes exactly with the UC. So far with the j-pouch, I'm not. I vote go for it.

Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted Yesterday 9:45 PM (GMT -7)   
You'll have to be very careful getting off the prednazone. My internist had me reduce one mg a week and it took nearly six months to get off the steroids...

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 12/22/2008 8:42 PM (GMT -7)   
I agree, the urgency was the worst part of UC. That's what scared me the most about having surgery to begin with, I didn't want to end up having the same problems after going through 2 major surgeries. I'm happy to say that I have not had ANY urgency since my reversal. I am on the VERY high end of the lucky scale. The first week after my reversal I was in the hospital throwing up pretty much every day. Then magically, on the 9th day I was completely better. I go to the bathroom 2 times a day because I feel like I need to, and some days a couple more times just because I'm in the bathroom. Sometimes I do poop a little when I go to pee, but my surgeon said that may go away with time, it's just that many of the same muscles are involved and I'm not used to controlling them yet.
I know that I have to go because I get an uncomfortable bloated feeling. I still have quite a bit of gas roaming around my intestine and that can make me feel like I need to go, sometimes I will just to release some pressure in there.

All in all, it's the best decision I've ever made in my life. I don't have a single negative word to say about this surgery, but like I said, I've been very very lucky.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 12/22/2008 10:47 PM (GMT -7)   

Hi Jackie.  I'm so sorry you're going through this.  Your story sounds so much like mine.  Oh the accidents!  It was awful!!  I, too am 43 and was diagnosed with UC in '04, pancolitis by '06 with a colon so scarred by the trauma of the explosive and uncontrollable "D" that even if remission ever came, it would not be much relief.  I had a lot of the same drugs and treatments that you listed including 2.5 non-stop years of various doses of prednisone and about 6 remicade treatments - none of which had any impact.  I finally had that nasty colon removed in Oct. '07 and the takedown in May '08.  I had a rocky start and just recently went thru a bout of pouchitis, but I would still take a bad day with my j-pouch over any day with a UC flareup.  Now that things are all working properly, it's the greatest decision I've made.  BM's are often formed (forgot what those were like!!) and never painful.  Sometimes the gas is a little uncomfortable, but NO MORE ACCIDENTS!!!  Some minor issues with nocturnal incontinence, but nothing too bad or messy.  I wear a pad just in case.  I think most people who have this get past it in time and many j-pouchers don't experience it at all.  My life quality is so much better it's hard to believe how I had to live before.  I do take some things to help me out, but they're pretty easy compared to all of the meds I was on previously.  Metamucil wafers are the greatest things ever for thickening stool.  And I'm becoming a big beliver in probiotics.  VSL#3 is a must.  Neither of these are prescription, although the VSL#3 is very expensive.  I can't tell you what to do, but the j-pouch was a good decision for me.

Oh - I guess your original question was what does it feel like when you have to go?  I imagine everyone's experience is a little different.  For me, sometimes it's a gentle pressure that gets stronger if I ignore it and other times, if there's gas behind it, it can feel a little more "impatient", but I wouldn't quite call it urgent.  It's NOTHING like having UC where you feel the urge and if you aren't seconds from the bathroom, it's another mess.  I'm so sorry you're dealing with that.  Is there any reason you have to wait until spring to have the surgery?


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/23/2008 12:25 PM (GMT -7)   
HI!

I definitely have no urgency with my jpouch. I can hold it for hours after I first feel some pressure. Sometimes , when I really push it, it can be slightly uncomfortable, just the way it is when you really have to pee. I love my jpouch. LOVE LOVE LOVE it. I do go more often than people who have colons, but I went even more when I had UC, and then I was sick, I had pain, and it was urgent. Now, I sleep through the night every night, and haven't seen blood in so long.
If at first you do not succeed, then skydiving is surely not meant for you.


Jo - UC, total colectomy and ileostomy on August 24, 2007. Step 2 & ileostomy switched to left side - May 27, 2008, and take down August 8, 2008. Gallbladder removed December 5, 2008. LIFE IS GOOD.


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/24/2008 3:14 PM (GMT -7)   
No urgency, gas bubbles make me quit ignoring it and go. I probably go 6-8 times a day and no accidents. No running to the bathroom and not making it and no blood. Had UC since 1991 and jpouch since 4/08 and I'm 42
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08

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