It is natural to concern yourself about the number of bowel movements with the j-pouch, but for most of us, it is not an issue. It is not because there is no frequency, it is because it generally is not more than you'd be heading to the toilet to urinate. But, those early months during adaptation can be very challenging.

It as been over 18 years for me and I honestly do not keep track of how often I go, but I would imagine it is around 6-8 times per day, depending on what I eat.

As for connecting back up to what is left of your colon... Is your surgeon actually offering that as an option? Generally, in nearly every case with UC, once you get to the point of needing surgery, it is a total proctocolectomy or nothing. Most everyone who has tried ileorectal or saving a portion of the colon has wound up needing further surgery down the road. Now, if you are not sure this is UC and maybe this is Crohn's or something else, that is a different story.

Jan

the surgeon doesn't seem keen on the idea of reconnecting. i don't want a permanent ileo, that's for sure. i'm 100% certain i can manage 6-8 times a day, especially in big cities like London etc where there are plenty of public restrooms. but i'm thinking, since the function of the colon is to slow down bms, maybe reconnecting might be an option, if i can keep the disease at bay with medication. But that's the problem, will my disease be manageable with what seems like my left side of my colon left. Did my disease just spread or did my inflammation worsen? That's what im asking myself

They have been doing this surgery for over 30 years, and many decades before that, ileostomy. Experience has shown that with UC, subtotal colectomy has a very poor long term result, so earlier completion surgery is the better idea.

You actually are more likely to have better function with the j-pouch than with keeping your remaining colon/rectum, because the disease will return to the colon, and you will back where you started. There is only about a 5-10 failure rate with the j-pouch if done at a center with skilled surgeons. Could be as high as 20% or more with an inexperienced team.

There is the option to keep your end ileostomy, or a continent ileostomy. There are a few surgeons in the UK that do a Kock continent ileostomy. But, it is not completely trouble free either.

The reality is that there is no perfect surgical option.

Jan

My J-Pouch was connected in August 2013, not that long ago. I probably only go to the bathroom 6 times a day. I don't even think about it really. What I love about my J-Pouch is that I can actually wait awhile before going to the bathroom. It's not like before with UC and having to literally run to a bathroom and most of the time not even making it. So much better for me

I had the same concerns before my reattachment surgery - I didn't particularly enjoy my ileostomy, but all of a sudden I realized I liked it better than the utter unpredictability and lack of control I had with my bowels with UC.

So now I'm about 3 months post-op, and I am SOOOOO happy with my J-Pouch. I go maybe 6-10x/day depending on how well I eat... but the big difference is I can HOLD IT if I need to! My surgeon explained that when the rectum is inflamed with UC, it doesn't expand the way it should, which explains the terrible urgency and and accidents. So even though I don't have "normal" solid bowel movements, my quality of life is greatly improved, and the J-Pouch is much more convenient than an ostomy.

I don't know if your situation will be different with part of your colon still? I had all of that diseased mess taken out me.

Best wishes to you!

i don't think I've ever soiled myself with UC, even when i had 40 - 50 bm's a day. It was the urgency which put me in discomfort and panic, and thankfully given that i lived in a big city i never had accidents. It helps when there's so many train stations and subways and McDonald's/burger king every 5 minutes. With the ileo i notice it mostly needs emptying in the night and morning,otherwise it's fine, so i imagine if i went 6x a day with a j pouch I wouldn't necessarily be going once every 4 hours. i picture myself in different scenarios, in less densely populated areas, on nights out,sports etc and think how things would pan out. People always talk about Imodium , it would be interesting to know how long that would delay bm's. It would also be interesting to know how people from sparsely populated areas coping with a j pouch, i remember going on road trips to the US/Canada and sometimes you literally had the feeling like your in the middle of nowhere, it seems like a nightmare scenario for me.

I'm often in the middle of nowhere and cope just fine with a jpouch. I do long distance (100-200 mile) hikes in the UK; a fair amount of international travel to 3rd world countries (where public restrooms don't exist), and long through hikes in the Sierra Nevada. Honestly, I never give bathrooms a moment's notice. I have no idea what my frequency is but if I had to guess it would be in the 6-10X day. I have a diet high in fresh fruit and vegetables; when I eat less of those foods my frequency is lower. Most of the time I don't think of myself being different from coloned people and my colon friends that I travel with have no idea I am different than them.

Sue

Wow that sounds great, i'd love to do something like that. Unfortunately the weather here is so miserable. do you wait till your pouch is full to empty or half/third full?

With respect to frequency, it's pretty much a given that pouchers should expect about 6-8 BMs a day. I more or less fall into this category (though like others here, I have never really kept track. Even on days where I start out saying I will make a conscious effort to count BMs, I usually get distracted and stop keeping track by midday, which I guess is a testament to how the number of BMs really don't impact on my functioning; i.e. "Oh yeah, I was supposed to be counting? *shrug* There are some days that I might only go 4 or 5 times, other days as many as 8 or 10. A lot depends what you are eating, and occasionally sometimes your specific activities.).

What I will tell you, is that while the pouch is not a perfect solution (nor are the alternatives of ileostomy or a potential lifetime of medications, for that matter), after 6 years, I can honestly say that frequency, urgency or BMs have not interfered with my daily activities. I horseback ride, do yoga, work out, work full time, etc, and I have not been bothered by urgency or having to stop or interrupt things to use the toilet.

As for when you should empty your pouch, the short answer to that is that I go when I need to go. It's common that when you are urinating, you may also have a BM. In the early days I always tried to control this, but these days I just let wants to come out, come out, because it probably saves me another bathroom trip down the road.

Your surgeon may tell you to try to hold your BMs as long as you can in the early stages to "train" the pouch. There is some debate about whether or not this is necessary. It's true that in the early days post takedown, you will probably have increased frequency as your body adjusts, so some transition period is expected, whether or not you try to hold or defer.

I echo the others. I go when I feel the need or urge, but if I am out an about, i can delay a bowel movement for an hour or two if needed. I can acually delay a bowel movement longer than urine, as I get older, I have some stress urinary urgency/incontinence.

I make it a point to empty my pouch and bladder before I leave the house for shopping or a road trip or after a meal in a restaurant, and I am usually good to go for several hours.

Jan