Skip to main content

I was recently speaking to a J poucher who told me it is very uncomfortable for her to hold it and that she worries about going on 45 minute car rides because she might have an accident. Are these two situations the norm? We have a boat and like to go out all day. Coming back to the marina twice is acceptable, but more than that would really put a crimp in the day. Also, my family lives 3 1/2 hours away and we frequently drive to see them. If the above-stated issues are the norm, it would keep me from doing those things. Thanks for your help.
Original Post

Replies sorted oldest to newest

Since I have had my pouch I have come across times I had to go but now I am able to hold it as when I had a colon I could not hold it at some point. Felt like if I held it something would rupture. Now with the Pouch even with a strong urge I can hold it till it passes... The urge that is. Most times this comes up is after the stresses of work and the 20 mile drive home but in the five months I have been back to work I have not had an accident on the way home. Or anywhere else.
My problem is from leakage. And I think that in time that will clear up.
You just have to give it an experimental drive to see what happens. Let us know how that works if you try it. You may find your worries are for nothing.
I can hold it for quite a while. Obviously it becomes less comfortable the longer you hold it, but it's not painful.

Like Lesandiego I can hold it for much longer if I'm just sitting around. I always have a BM before I start a workout, even if I don't necessarily feel like I need to.

Regarding a 45 minute car ride, that sounds like either a very unhealthy pouch or some hyperbole. The person you talked to is really going to the bathroom every 45 minutes? That sounds very unusual.

I live about 5 hours away from my parents and when I drive to visit them I usually stop once or not at all.
I had my take down surgery in April. I am able to hold it for a long time sometimes up to 6 or 7 hours which probably isn't the best idea but I am able too. It does get more and more uncomfortable and the urges become stronger. I went on an 8 hour car ride in August and I only had to stop once or twice. I think it also depends upon the person too, everyone is different.
I am curious too, but what does uncomfortable mean? I am only for months post take down, but for me uncomfortable means a feeling like sharp stool is lodged in the canal. If you hold too long, does it pass the cuff involuntarily? I am going way too much, but mostly because of discomfort. I will go, feel done and 15 min later get the sensation of stool moving out, painful. Sometimes it feels like a piece us lodged and pokin through skin. Everyone says uncomfortable, but uncomfortable how?
I can "hold it" or defer for quite some time if necessary, though if the pouch is very full, it does become uncomfortable. The sensation is not painful, just a very full feeling - I would liken the level of discomfort to having a full bladder - annoying in the sense that you're aware of it, but not distressing.

However, in the early stages post takedown I did have spasms, but these improved and eventually disappeared after the first couple of months.

That being said, while there are times we just can't always be near a bathroom, holding it unnecessarily is not really recommended, as there is some correlation between fecal retention/stasis and the development of pouchitis. Some surgeons also feel that having too much volume in the pouch too often over time will contribute to the complication of an overstretched pouch. So basically? It's best to go when nature calls, when you can. Smiler
My best feeling post-pouch was the feeling of needing to go to the bathroom, but NOT doing it. Over time my pouch stretched and when I don't have active pouchitis I can sometimes go an entire 8 hour work day without going and usually go all night without going. A lot depends on eating and activity patterns. I've driven cross country tons of times, no issues. On a 4 hour car trip I usually stop once, but that is usually for #1, not #2. With a healthy pouch I don't know if I could "guarantee" going 3.5 hours without needing to use the bathroom, but many times one probably could and if not, I can't imagine needing to go more than once during that time frame. Definitely could go more than 45 minutes. Only being able to go 45 minutes between BMs sounds like something is not right.
I went last night at 11pm.

Slept thru the night, didn't go until about 10 am at work (I'm an ICU nurse, and I was in charge today, so sat thru report, checked all 5 of my units, went to bed briefing, and had breakfast before I went).

I went again around 4pm, then at 6:30pm before report, and just went here at 9:30pm.

I'll probably sleep through the night tonight, but go earlier in the morning since I last went only at 9:30pm.

So that's pretty average for me now, at almost 24 years post surgery, to go 4-6x a day, and not wake up at night, unless I eat late or indiscriminantly.

Oh, and I can go from just an uncomfortable fullness, to sort of pressure to go in that area, but it's never REALLY HORRIBLE, even if I've pushed it farther than I should have. I generally feel sort of bloated, though, til I go.

And FWIW, I was in full time nursing school at 4 months post take down, with a 24 hour a week part time job, and functioning just fine. I was a poster child for good pouch function for many, many years.
Last edited by rachelraven
I am similar to rachelraven in the number of times I go. No problems holding unless I have ingested copious amounts of sugary stuff with some sort of insoluble fiber mixed in or maybe loads of caffeine. Enough of that could still cause not only urgency but a nighttime accident. I'm 31 years post surgery and there were many years of higher frequency before I figured out what foods I cannot tolerate and was motivated to cut them out.
There are no problems holding for me unless I have flaring pouchitis. My pouchitis, although chronic, is usually under control but ocassionally between antibiotic rotations it will flare badly and this will cause a sensation of urgency, increased BMs and also night-time leakage, until the situations is brought under control. Even with aggressive treatment flares will happen, which is why they call it chronic refractory pouchitis in my case.
Last edited by CTBarrister
One thing (among others) that I really love about having a J-pouch is that I can empty it at will prior to long trips, etc. Never ever could I do that when I had a colon! Even when my colon was healthy, I was at the will of when it was ready to empty. When my UC was in full swing I never was given a choice! So.....what a blessing it is to visit the toilet before I leave my house or somewhere else and empty my pouch! My takedown was over 10 years ago.
I don't tend to have any problems with holding it. I always make sure to empty before going somewhere, and before working out. It gets a little uncomfortable when I'm sitting in a quiet lecture and holding it because my pouch gets grumbly from the gas even if I went before. People near me always asks if I'm hungry and I just knod my head and laugh. Airplanes make me a little nervous since I hate using the bathroom on them and also using porta-potties at events

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×