J-pouch lessons learned, one year after surgery

On February 11, 2014, I went to Mount Sinai Hospital in Toronto to get my ostomy reversed and my j-pouch up and running. I remember on that day being rushed through the usual protocols and procedures that precede an operation, because the operation that was scheduled before mine was cancelled. So rather than have all the doctors and nurses diddle around for a few hours, my surgeon’s office called me that morning and told me to get to the hospital as soon as possible.

I woke up after the surgery in the expected amount of pain, although it wasn’t as intense as what I felt after my first operation in May 2013, which was a considerably larger and more complex job. I had a tube in my nose, another in my ass, and a string of staples beside my belly button where my ostomy used to be. I was back home after four days in hospital and another period of recovery lay ahead.

Today, I look back on my first year with a j-pouch as a relatively successful one, although there are still complaints and challenges and aspirations yet to be fulfilled. I do consider myself rather fortunate on the whole, and so I thought it might be helpful to other j-pouchers, or people with IBD who are contemplating pelvic pouch surgery, to go over what I’ve learned after a year of living with my altered innards.

Bowel Movements

Really, where else could I begin?

The transition from an ostomy to a J-pouch was difficult, and even after a year it’s still a work in progress. In the first few months after my ostomy reversal, I would have to use the bathroom roughly eight times a day. That number, however, belies the actual amount of time I spent in the bathroom.

The first challenge I encountered with bowel movements was the inability to completely empty the pelvic pouch in one shot. I found that after having a bowel movement, I’d clean up, wash my hands, and a few minutes later feel the urge to go again. So rather than make multiple trips, I would just sit on the toilet for 10-20 minute stretches. I didn’t strain or push to get things out, I just waited. That strategy proved especially frustrating in the middle of the night, when my sleep was broken with 20-minute bathroom trips, sometimes twice or thrice a night. I was working part-time from home during this phase of my recovery, so I had the luxury of being able to sleep in every morning.

By around the five month mark, it became easier to get through the day’s bathroom trips without having to spend an excessive amount of time on the toilet. I developed a routine of going first thing in the morning, around 8 a.m., and sitting down for 10-15 minutes. After that first trip of the day, I’d be in good shape until about 1 p.m., when I’d have to go again. Then I’d have trips again around 4 p.m., 6 p.m., and 9 p.m. Then I’d try going again before bed, at around 11 p.m. I could sleep through the night about three times a week, with the other four nights requiring a bathroom trip at about 3 a.m.

With the exception of the middle of the night shits, I’d spend about 10 minutes on the toilet trying to get a good clear-out. I would stand for about a minute after the first wave of stool came out, so that more stool could drop down and be ready for removal. I also found that sitting on the toilet with my legs stretched out in front of me could make for a better clear-out. For those bathroom trips in the middle of the night, I’d usually sit, shit, clean-up, and go back to sleep.

I’m now working full-time, and I typically go 5-6 times during the day, and usually once overnight. The average span of each trip during the day is about 10 minutes, but the overnight trip is pretty quick and doesn’t cause much of an impediment to sleep. I still do have a hard time getting thorough clean-outs. It’s frustrating when you spend 10 minutes on the toilet, clean yourself up, and then feel an urge to go again a moment or two later.

My stools range from largely liquid to small, formed pieces. I like to analogize those pieces to KFC’s popcorn chicken so that people get an idea of how big they are and so that they never want to eat popcorn chicken again. Sometimes the bits are even smaller, sometimes there’s a mix of formed pieces and liquid, and sometimes there’s a sludge-like consistency similar to the output from an ostomy.

Part of training the j-pouch to function effectively is to not go to the bathroom every time you feel the need to. I’ve been quite happy with my ability to hold in the shits, whether sitting, standing, walking, or lying down. I wore adult diapers every time I left the house for the first month after the operation, just as a safeguard, but their absorbency was never tested. Holding it in was a painful practice at first, and even today it can be painful to do so, especially when the pouch is near its carrying capacity. But I can do it. It’s not like when I had a flare-up of my ulcerative colitis and I couldn’t hold in the bowel movements.

Farting

Yes, you can fart with a j-pouch, but it’s a tricky and sometimes dangerous proposition. A buildup of gas in the pouch can cause a considerable amount of pain in the pelvic area. When trapped gas wants to escape, it feels essentially the same as the urge to shit, and therein lies the problem. If you try to let out the gas by farting, there’s a good chance that some stool will come along for the ride. So to mitigate the risk of sharting myself, I usually try to let out gas while sitting on the toilet.

I can generally ride out the pain of gas trying to work its way out of my body. If I’m sitting I’ll lean forward, and if I’m standing I’ll cross my legs. I’ll hear a rumble in my pouch and the pain will subside, but if there’s a significant buildup of gas and/or stool, the urge will return within a few minutes. However, I have found that if I lay on my stomach or on my side, I can let out gas alone. Successful farting usually occurs while I’m in bed, and for that I apologize profusely to my girlfriend.

The most frustrating aspect about dealing with gas is that it relies so much on timing. If I feel the urge to let out the gas, and I’m not near a toilet or a place I can lie down, I’ll hold back the urge and it will pass. Then when I do get to a toilet, the gas sometimes doesn’t come out, only stool. So I’ll clean up, walk away from the bathroom, and the gas will make itself known again. If I’m near a toilet right when the urge strikes, I can get a good clear-out of gas, along with some stool. If you can just let a fart rip wherever you are and whenever the feeling strikes, I envy at least a part of you.

Butt burn and bidets

Butt burn is exactly what it sounds like, although for me, I also experienced an intense itch during my bouts with butt burn. It’s a tough itch to scratch, because after a burning bowel movement, the instinctive reaction is to stick a finger where it itches, but that would only make things messier and more unpleasant.

The butt burn and itch set in about a month or so after I left hospital, and did so regardless of what I ate, and regardless of the creams I used in an attempt to prevent it. I think that part of what made the anal area so uncomfortable was my clean-up regimen. From the moment I returned home from hospital, I used a handheld bidet and “flushable” wet wipes. But not using regular toilet paper meant I wasn’t properly drying the area. That leftover moisture could have been partly to blame for the itchiness.

I also discovered that “flushable” wet wipes is a misnomer; they don’t break down like regular toilet paper and really shouldn’t be flushed. I kept using the bidet, but then regular toilet paper to dry/wipe up the area. I also started using Calmoseptine ointment once or twice a day to relieve the itch and create a little moisture barrier. I kept the wet wipes in my backpack for bathroom trips when I was out of the house, but I used them in combination with regular toilet paper, and I tossed the used wet wipes in the garbage.

When I started my full-time job in August, I brought a box of wet wipes with me on my first day to keep in my desk. Over that first week at work, I kept forgetting to bring the wipes with me to the bathroom, but I discovered regular toilet paper worked just fine. A little less comfortable, but also less cumbersome. I haven’t used wet wipes at work, or anywhere else, since. I still use my handheld bidet at home, and I have to say it’s rather refreshing.

Food and drink

In the first two to three months with the j-pouch, I stuck to a low residue, low fibre diet. That meant limits to raw fruits and vegetables, no grainy bread products, and plenty of white bread, oats, applesauce, and peanut butter. Meats and dairy products were cool. I was, and still am, good with cheese, yogurt, and ice cream, but I don’t drink milk.

Over time I introduced more foods into my diet, including small portions of raw fruits and vegetables, and even nuts, which I used to steer clear of. I still avoid popcorn like it’s an unvaccinated child, and I try to avoid or at least limit spicy foods, because they bring back the butt burn.

When I first had my colon removed, I found that I would get thirsty quite easily. That’s changed as my intestines have adjusted to their new setup. I drink at least two litres of water a day, and closer to three when I exercise. While I probably could drink alcohol, I choose not to because Allah says it’s haram.

I’m just fucking with you, I’m not religious. But I genuinely do avoid alcohol, because I’d rather not risk it causing any intestinal troubles.

Medications and supplements

I was sent home from hospital with painkillers. I didn’t take any. I was on a proton pump inhibitor called Dexilant, used to decrease output, before the ostomy reversal. I was able to taper off the medication and I don’t use it anymore. I’m happy to say that for the moment I’m medication-free.

However, I did run into difficulties last fall when my iron levels dipped. I took an over-the-counter iron supplement for a few months to bring the levels back up, and have since tapered off it on the advice of my doctor. Hopefully I won’t need them again, but it is a possibility. I also use a supplement powder called Vega, which I shake with water and drink every evening. I found taking it in the morning caused more bowel movements.

Exercise

After my surgery, I couldn’t wait to run again, but I did hold off on running for longer than the recommended post-op period. Even so, I probably should have waited a little longer, just to be safe. I have been able to run again, which I did regularly last summer. A couple of 8-9 kilometre runs were my best distances. However, I encountered difficulties in the fall.

I noticed that running in the evenings was at times uncomfortable because gas would build up and cause pain in the pouch. I could hold in the gas, the pain would subside, and I’d get on with my run. After the run though, I would let out a bloody bowel movement. The next bowel movement after that would be normal again, and there would be no blood in any of my bowel movements until after my next evening run. Curiously, I didn’t have this problem if I ran in the morning before I ate.

My doctors and I are still trying to figure this one out, and it’s still something that concerns me. If for whatever reason I had to stop running, I’d likely fall into a deep depression. In the meantime, I’ve opted to run less frequently and only in the mornings, and take walks in the evenings. Walking is still one of my great pleasures, as it was during my recovery after both surgeries. On my commute home from work, I get off the bus a few kilometres from my house and walk the rest of the way.

Work

The two hallmarks of my first year with a pelvic pouch were the ability to run again (despite the concerns noted above), and the ability to work full-time again. Being entrusted with work to do is a right proper boost to one’s psyche, and I’m relieved more than anything that my body has held up to the rigors of a full-time job. I haven’t taken any sick days, and I’ve only occasionally had to arrive or leave early for doctor’s appointments.

Looking back, it was also beneficial to only have had a part-time job I worked from home in the immediate aftermath of the operation. I certainly wasn’t up for commuting and full days away from the comforts of home (namely my home bathroom), and I was fortunate enough to be able to live in my dad’s house and work off a laptop in my bedroom while I recovered. I could put in my scant working hours when I was up for it, and I could break up my day with a long walk in the afternoon – a perk I truly miss now.

The psychological side

When you go into an operation that’s going to mangle your insides, you expect there to be physical difficulties in the weeks and months that follow. But you may not anticipate the psychological challenges you’re almost bound to confront. I regularly fell into pissy moods and sad stretches after my first operation, namely because the operation came with multiple complications. The second surgery went more or less according to plan, but the ensuing recovery was not devoid of mental angst.

After taking a year out of my life to recover from my operations, I became increasingly frustrated with the slow progression of my health. The longer I went without full-time work, and without the ability to live independently, the angrier I became. Angry at other people who had it better and easier than me. Angry at my own horrible body for screwing me over time and time again. Angry that as I approached 30, I was nowhere close to making an even remotely notable contribution to the world.

Mixed with that anger were nights spent crying over feelings of regret in choosing to have surgery, over nostalgia of better bygone days, and over the sheer exhaustion of living through cycles of setbacks and recuperations.

Those flashpoints of anger and sadness and frustration are still there. They simmer under the surface and bubble up when I see blood in my stool after running, when I have to hold in a bowel movement while eating a meal, when I miss my morning bus because even 20 minutes on the toilet weren’t enough.

It’s not all gloom, all the time though. Sometimes I catch myself feeling lucky to have survived all that IBD has levelled at me, especially when I know others with the disease struggle still. Sometimes I feel amazed at the fact that my body has healed after being sliced open and stapled up a couple of times. Sometimes I realize that it is quite remarkable what I can do despite not having a vital organ. Sometimes I think about all the knowledge and skill of my doctors and nurses, and all those who came before them who helped establish a wealth of scientific understanding that has never in human history been as immense as it is today.

On February 11, 2015, I went to a nondescript office building in Mississauga to get to work. One year with a j-pouch gone by. It’s been rocky, but positive overall. I’m running, working, and soon to be apartment hunting so I can make the transition to real self-sufficiency. There’s still more to learn about how to live with my pouch, and how to manage its difficult days without getting unduly upset. I’m not exactly where I’d like to be in life, and living with a pelvic pouch will make attaining that place in life undoubtedly more difficult than if I had properly functioning bowels, but I’m here, alive and writing and hopeful that I can find better days and work to become a better human being.