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Lessons learned from living with a J-pouch for the past two years

Two years ago today I had my second, and hopefully my last, surgery.

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“So how have you been?” Dr. Elfassy asks as he shakes my hand and guides me into his office.

“Well, it’s been a while since I’ve been here, so, pretty good,” I reply.

Dr. Elfassy sits at his desk, behind a wide black monitor hooked up to a Macbook. “Yeah, the last time you were here was over a year ago. What’s happened in that time?”

“No big complaints, really. The pouch has been pretty good. And I’m working full-time again, and I moved into an apartment that’s closer to my work.”

“That’s great!”

“The only problem I had was at the start of January when I had the stomach flu I called you about earlier.”

“Yes, and you were worried it was pouchitis.”

“But I don’t think it was. I didn’t feel that sort of overwhelming urge to go that I would have expected if it was pouchitis. I just had to go a lot, and it was always pure liquid. And I had a fever and chills and fatigue. It all got better after a week or so though.”

“Well I’ve seen a lot of gastroenteritis lately, so I’m pretty sure that was the case. But otherwise, things are okay?”

“Yes. I’ve been pretty… happy with the pouch. I’m running more, which makes me feel good.”

Dr. Elfassy scribbles notes in black ink on an unlined piece of white paper, then looks up at his monitor. “Now the last time you were here, you mentioned you sometimes had some blood in the stool after running. Is that still happening?”

“Sometimes, yes, but not as often. And when it does, it’s the first bowel movement after I exercise. The next time I go to the bathroom after that, it’s back to normal.”

“It’s probably just an area that keeps getting irritated when you exercise.” Dr. Elfassy looks at his monitor again. “And you had a scope with Dr. Cohen in October and everything looked fine.”

“Yes. When it was done he said, ‘come back in two years’ and that was it.”

“Well, it sounds like things are going well.” Dr. Elfassy swivels his chair and rises to his feet. “Let’s just head back to the exam room and I’ll get a quick look at your abdomen.”

I hop up onto the exam table and lay on my back as Dr. Elfassy feels around my stomach. He does that thing where he puts two fingers on my abdomen, then taps them twice with two fingers on his opposite hand. He does the same in several spots on my stomach. Everything sounds fine, apparently.

Dr. Elfassy and I chat some more, and he gives me a requisition to have some routine blood work done. I talk a bit with his secretary, Dori, who’s always been at the ready to get me an appointment when I’ve been in trouble. It was nice for a change to make an appointment under no duress.

I step outside of Dr. Elfassy’s office and stand in the hallway. I remember standing in the same spot after an appointment several years ago when I was in the middle of an ulcerative colitis flare-up. After leaving that appointment I felt an urge to go, and I tried to hold it in. I felt a stream of warm liquid flow out of my backside. I could feel its wetness soaking my underwear. I could feel its warmth sliding down the inside of my legs. And I just stood there until it was done. I stood there and I cried.

~ ~ ~ 

Two years ago today I had my second, and hopefully my last, surgery. That operation reversed my temporary ostomy and set me up with the functional J-pouch I now have today. On days like today, I’m reminded of just how remarkable a piece of machinery the pelvic pouch is, how exceptional a system the human body is, how much progress human beings have made in understanding our world, and yet, how much we still don’t know. While my J-pouch has alleviated much of the malice that ulcerative colitis wreaked on my body, it’s still not a perfect solution, and we still don’t know just what causes ulcerative colitis or Crohn’s disease. But for today, I thought I’d share a bit about how life with a J-pouch goes, much like I did this time last year.

How often do you go with a J-pouch?

Usually six times a day. On weekdays, I have a pretty predictable shitting routine. I’ll go first thing when I wake up, and I’ll usually sit on the toilet for 15-20 minutes because the movements come in waves. A pelvic pouch works with gravity, rather than organ contractions. So I can let out some fecal matter when I first sit on the toilet, but then another batch will drop further down into the pouch a few minutes later. I typically bring my phone to the bathroom with me to help me pass the time. I also regularly wipe down my phone with alcohol swabs to keep it from getting too grimy.

After my morning poop, which happens at around 6:30 a.m., I can usually get through the morning at work before needing to go again around noon. Sometimes I need to go earlier, sometimes I can wait until after 1 or 2 p.m. I’ll usually try to get in a poop again around 4 p.m. so that I have a more comfortable walk home when I leave the office at 4:30. Each of my trips to the office bathroom lasts roughly 10 minutes, again, because I want to empty my pouch as much as possible.

When I’m at home in the evening, I’ll probably go twice more, with one of those trips happening just before I go to sleep. There’s often an overnight trip to the bathroom too, but it’s usually a quick trip. Just sit down, shit, flush, clean up, and head back to sleep.

Can you hold it in with a J-pouch?

Yep. And over the last two years, I’ve gotten better at it. If I’m seated and I want to hold it in, I lean forward to help the feeling to go subside. If I’m standing, I’ll cross my legs. When you hold back a bowel movement, the feeling that you need to go will subside. But if the pouch is particularly full, there’ll be a shorter gap between the feeling subsiding and coming back. I can hear, and feel, a rumbling when I’ve successfully held back a bowel movement.

The need to go feels like what a “normal” person would experience if he/she had to go, but you feel it less in your abdomen and more in the pelvic area. For me, the area a few inches below my navel is where I feel the pressure most.

What can you eat with a J-pouch?

Experiences will vary from one pelvic pouch owner to the next, but for me, the answer is pretty much anything. If I tread carefully with anything it’s spicy food. I won’t feel ill as a result of eating spicy foods, but I will inevitably have some uncomfortable bowel movements. The spice can feel good going in, but it’s awful going out. I know that popcorn gives many people with IBD problems, so I’ve avoided it for years, as I still do. But that’s more out of paranoia than anything else.

Most foods are safe. Dairy is cool. Meat is cool. I love bread. I stayed away from nuts for months after my last surgery, but I’ve slowly reintroduced them into my diet with no adverse effects. I also avoided alcohol for a long time, but I’ve discovered that an occasional beer will do me no harm. I’m tolerating raw fruits and vegetables better as well, which is nice because I actually do enjoy a nice salad; I don’t care if I look like a gay person.

My favourite foods are still fair game too: pizza, burgers, burritos, and sandwiches are all generally well digested. But as with anything, excessive consumption of these culinary delights will cause problems, so I try to avoid overindulging.

Can you live a normal life with a J-pouch?

That largely depends on what you consider normal. But if holding down a job, paying rent for an apartment, having a partner, going for runs around the neighbourhood (but not as often as you should), seeing friends and family, and going on vacation to hike trails and take photos are considered normal things to do, then yeah, you can live a normal life with a J-pouch.

Being better physically has also let me volunteer with my local chapter of Crohn’s and Colitis Canada, and I’ll be running the 10K event of the Mississauga Marathon this spring to raise money for the organization – my first timed race since 2009. If you’d like to toss a couple of bucks my way, you can do so on my fundraising page.

There are lots of things that I’d like to do with my life, and having a J-pouch does admittedly make them more challenging. The sheer number of required bathroom trips alone makes things like long runs, long drives, and trips to new places both near and far more difficult than they would be with a properly functioning colon. But more difficult doesn’t mean impossible, and I guess that’s a win, right?

Some other lasting effects of J-pouch surgery.

I miss farting. And by that I mean I miss being able to fart easily. In all the times I’ve been gassy since having my J-pouch, I’ve only rarely been able to fart while sitting down. I’ve never farted while standing. The safest way I can let one rip is if I’m seated on the toilet. In that scenario, there’ll usually be some fecal matter that comes out along with the gas. However, I can still pass gas and gas alone when I’m lying on my side or my stomach. I find that being on my left side with one knee raised toward my chest is the most conducive position for passing wind.

I still have scars from the incisions, from a wound that was a result of the first operation, and from the drainage tube I had lodged in my butt cheek for three months. They don’t bother me one bit.

It’s still holding up.

I once met a man whose son had pelvic pouch surgery some 20 years ago. He told me that more recently his son was having problems and that it seemed there was a limited shelf life for every pouch. I don’t want that to be the case. I’m pretty happy with my pouch. I like it. I try to treat it well. And I hope in doing so I’ll have it working well for the rest of my life.

After two years, my pouch is doing its job admirably. I’m happy with it, even if other aspects of my life don’t exactly fill me with joy at the moment.

And this is where the post takes a bit of a sour turn.

I’ve been struggling with feelings of sadness and anxiety for months now. Truth be told, those feelings have been around for years, but they became an increasingly prominent element of daily life last spring. I sought help last fall, and now I’m very much a mental work in progress. I believe that my mental issues are correlated to, but not solely caused by inflammatory bowel disease. To a degree, they are separate problems.

I do, however, find further evidence of the efficacy of my surgeries in how my physical body has responded to my mental anguish. I remember a time while I still had my diseased colon, when I got really angry about something (I can recall the details, but I don’t feel like going into them here). I remember driving to work screaming obscenities at the top of my lungs. When I stopped at a red light I punched the steering wheel repeatedly. Within hours of that tantrum, I could feel an uneasy warmth in my belly. I was into a full-on flare-up about a week later.

It’s worth noting that my angry incident coincided with me tapering off prednisone so that obviously would factor into how my body behaved at that moment in time.

I guess where I’m going with all this is that I’ve had some angry and sad and frustrating moments over the last two years, but I haven’t had a flare-up. I haven’t needed a milligram of prednisone either. Those are positives I can take amidst the angst.

So here we are, two years after I hopped onto the operating table at Mount Sinai Hospital, and things are all right. I hope I can continue these pouchiversary posts in the years to come and report on new gains each time around. I know the internet has lots of scary stories about pelvic pouches not working out, so I hope everything I’ve written above is at least a small counterweight.

Now if you’ll excuse me, I’m going to dine on a fine slice of pizza, because that’s what anniversaries are for.