Two years with a J-pouch

hank“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 sucessfully 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, my 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.

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About rasheedclarke

Award-winning author. Marathon runner. Exceptional dresser. I'd like to be all those things.

28 comments

  1. Reblogged this on Companion Magazine for IBD and commented:
    Our Editor, Rasheed Clark, discusses what life is like 2 years after his jpouch reversal. We are so proud to have Rasheed as part of our staff! Very educational, funny and real post.

  2. Tracie Ann Bogdan

    Rasheed, I just loved your article updating us on your Jpouch. It is always inspiring to read someone else’s journey! You made me laugh and cry, but most of all proud! You are an incredibley strong human being for all that you have over come! Your article will surely benefit others who are considering Jpouch surgery. Stay strong always! XOXO Tracie Bogdan (Brooke’s Mom) 😘

  3. Joe Kondrat

    Glad to hear you got the apartment and things are improving. I guess the TL is next. Cheers!

  4. Kris Perez

    Very interesting and enlightening. Thank you for sharing. I have IBS so I can relate a little. My namesake has IBD and has the JPouch now. Such a miracle for you both. Good luck in your continued exercising and improving your mental health. And enjoy the pizza!

  5. Shadaab

    Hey Rasheed, I’m about to have my step 2/3 J pouch creation surgery and your blog posts are so informative and reassuring! You are a wonderful writer, and thank you for all the work that you do! There are many of us looking around online for more information and happy stories, and despite your challenges, your positivity (and also candidness) are a great contribution.

    • Hi Shadaab, thanks for reading! Glad my post had some positives in it. Hope that your remaining operations go smoothly, that you have a quick recovery, and that you have plenty of happy stories of your own ahead!

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  11. Maria Belcik

    My son is in year 2 of a jpouch. He had UC. I will be sending this to him. He is about to graduate from college and enter the real world. I know he is terrified and wishes that college could last forever. I mentioned he should consider seeing a counselor for this. This post is affirming to me as his mom. You made my day. I am also been super worried about him and this has led to anxiety. Thanks again for making me feel better

    • Hi Maria, thanks for your note. I know after I graduated from university I just wanted to go back, but life in the working world does have its advantages – it may take time to realize those advantages though. The pouch itself hasn’t been an impediment to me working, quite the opposite in fact. I’m working now and taking on more because of my pouch; I hope the same will be true for your son. He’s welcome to get in touch with me if he ever wants to chat. Best to you both!

  12. Diane

    Thanks for your journey over your past two years. I also have a j-pouch. I suffered for many years with UC till I finally became cushingoid. It has been fifteen years with my j-pouch. I’ve done good until recent. I’m having troubles holding the liquid in my pouch. I now wear protection so I don’t have any embarrassing moments. I really need to go to my gastro doctor and talk to him about this. I have times when I miss work over it. Like no control.
    Anyway, thanks for sharing your process with your surgeries. I like to see what others deal with. Take care.

    • Hi Diane. So sorry for the incredibly late reply, but I just saw your message now. I hope that you’ve been able to get some more control over the pouch. Perhaps some stool thickening foods could help the pouch hold its contents better? Protective underwear has been helpful for me in the past; it’s nice having some safety in case there are leaks. All the best to you and your pouch!

      • Diane Martin

        Hi Rasheed.
        I finally was able to get into the Gastro doctor. He put me on some prescription that is powder that I mix with water twice a day and it has helped a lot. I just wanted to let you know. It’s been great able to sleep at light. I was getting up like every hour you pass bile. This medicine thickens the bile so now I’m able to get some rest.
        I’ve done well with the j pouch over all of these years. It’s just something we have to except and work with.
        Take care Rasheed.
        Diane

  13. troy cornett

    i am a year out of takedown surgery and your story was like looking into a mirror, thankyou for sharing, it has helped me look at things a little differantly,it hasn’t been easy and the last couple months has really been ruff as i have really second guessed everything i have had done.i guess the main reason for those thoughts and angers would stem from exceptance,the new trails and tribulations,and the why did this happen.thankya for sharing, i know things will never be the same but life goes on, and that in itself is good

    • Hi Troy,

      Thank you for the message. You’re very right that life going on is good in itself. And as life goes on, there are always possibilities for improvements. I had plenty of regrets and second guesses of my decisions, but at this moment I’ve become much more comfortable with them. And feel free to get in touch if there’s anything I might be able to help out with.

      • Valerie Cornett

        I’m Troys wife and I just wanted you to know how much it helps to know someone is going through the same things as you are. I was wondering how your wife is dealing with your health issues? I find my moods to be dependent on whether or not Troy is having a “good” day.

      • Hi Valerie,

        There are plenty of people who have gone through what Troy and I have faced, and I’m glad he was able to find my blog. I’m not married, but my ex-girlfriend was with me through many of the hardest stretches I’ve faced with IBD and the J-pouch. She was always looking for ways to help me through the bad days, and I’m very grateful for her. I can’t say for sure, but I imagine my down days led her to feel down herself. Being a partner to someone with IBD comes with its own challenges, and I’m sure Troy appreciates all that you do for him. From an outsider perspective, I’d just say try not to be too hard on yourself on the days when Troy isn’t feeling his best. You can’t do everything for someone. No one can. Whatever support you can offer will help, and I hope knowing that will keep you from feeling too down yourself. Best to you both!

      • Troy cornett

        Thank ya rasheed and I will do that,and continue to follow your story.i had my first visit with physical therapy today it seems after the takedown surgery I have forgotten or somewhat lost the ability to use certain muscles properly to empty out properly,I must say I was very appreciative about it but went and I must say it helped and learned some things,it was a good day indeed,again Thank you for your story and response it was a inspiration and helpful

  14. Denita

    Thank you for sharing your journey! Your pouch sounds so much like mine. Everything from farting to salad. They’re like twins! Haha! Made me feel a little more normal, so thanks for that. Although I did suffer a surgical error that left me with a missing ureter, extra surgeries, a neohrostomy tube for seven months and kidney issues now, pouch life IS so much better than UC life. I was in a constant severe flare for almost a year before I finally gave up and cut the bloody thing out of my gut. (Pun intended! Ha!) Sometimes I wish I’d done more to save the hateful thing, but I have a family history of colon cancer where my aunt passed at 35, and my great grandfather died of UC before the knew what it was, so it wasn’t worth the risk to me. Some didn’t understand that but at least I know I’ll never have UC again and no risk of colon cancer. Gotta look for the silver linings…ALWAYS! Again, thanks for sharing and hope you have a lifetime of happy pouching! God bless!

    • Denita

      Sorry for the typos! 😋

    • Hi Denita,

      Thanks for your message. I’m sorry to hear you had to go through the complications from your surgery. It’s hard going into the operation with confidence then having a whole new slew of problems to deal with. Hope you have a lifetime of happy pouching* too!

      * I love that term you’ve coined, “pouching”. I’m going to use it more often. 🙂

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