30 Ounces of Shit in a 15-Ounce Bag

I’ve freely discussed, and written about, the amputation of the lower portion of both my legs, and life since then. I had made a conscious decision to be open about it, and I really think that’s made it easier for me to cope. It’s also truly helped to meet and befriend some other amputees to share gripes, low moments, and pep talks with. But there’s another issue I’ve been dealing with for nearly a year and a half that I haven’t really been able to talk about. Because it revolves around fecal matter. And that is fucking gross.

I know, I know, everybody poops, but not everybody brings it up in polite conversation. Because… ewww. But let me begin at the beginning, after gastrointestinal concerns ultimately landed me in the hospital for emergency colon surgery in late summer 2016. When I “came to,” there were a myriad of bags and tubes attached to my stomach and below. As I slowly became more lucid, I learned that one of these was an ostomy bag. So, in technical terms, instead of shit coming out of my butt, it went into this plastic bag. Even at those early stages, I remember a doctor telling me that “it can be reversed” eventually, but I had absolutely no idea what that meant, and wasn’t thinking remotely clearly enough to ask.

The bag concept weighed heavily on my unconscious. I hallucinated about struggling to find a doctor who would explain the idea of living with such a bag. These young guys will know the answer, I recall imagining. But they couldn’t help me either.

BAG BASICS

At hospital #2, there was a wound specialist who taught me a new word: stoma. With my parents in the room (!), we — I think, as it’s all a bit hazy — looked at a photo of this stoma, which is the part of the intestine that, in an ostomy situation, is outside of the body instead of inside. That’s what the shit comes out of. (For me, because of the higher-up location of my ostomy, it was mostly a liquidy shit. That’s called an ileostomy, as opposed to the more commonly known colostomy.)

The specialist was telling us how good my stoma looked, and I was flat-out baffled. It was this wet, dark red… thing… coming out of my stomach. I felt like John Hurt in Alien. My guts were on the outside, it was fucking disgusting! Oh yeah that looks really good, lady; thanks a lot.

I became accustomed to being aware when the bag — on the right side of my abdomen — was getting full. Then I’d summon a nurse or nursing assistant to empty it for me. Some nursing assistants refused, because it was gross. They sucked.

At least once a week, often twice, the bag — and adhesive wafer underneath — had to be changed. Hey, stoma, good to see you up-close and personal. How have you been? I must say you’re looking very well. It must be changed because the adhesive breaks down over time, which then leads to leaks. Leaks are the arch enemy of the ostomy-bag wearer. As a species, we like our shit to be neatly contained, and it’s stressful when that’s not the case. Monkeys have a much more liberated attitude toward this, flinging their feces willy-nilly.

Also, when changing the bag, it was a good time to inspect the skin underneath, making sure it wasn’t red or broken. You know what can easily irritate skin? Liquid shit.

In mid-November, I was transferred to the excellent Hackensack University Medical Center for my amputation surgery. I stayed there for a week, and toward the end, nurse Shannon Byrne from Enterostomal Therapy was the first person to truly talk to me about the ostomy bag in real-life terms. (“Lots of people have them, you’d never know!” “When you’re up and walking, you’ll be able to go into a restroom and just empty it in the toilet, no problem!”) That made me feel a lot better. Shannon left me with helpful guides and some supplies, which my beloved parents immediately lost.

Next I headed to the Kessler Institute for Rehabilitation in Saddle Brook, New Jersey, where I’d meet the staffers who gave me back my life in so many ways. In the bag department, I’ll single out charming and on-the-ball nurse Kristen, who dealt with messy matters with skill, a smile, and total respect. You see, worse than being gross, shit in the wrong place at the wrong time is absolutely humiliating. And Kristen was one of the real good ones who, through the most disgusting of it, treated me just like a regular person, which I was already struggling with. (On a positive note, repeated humiliation — in shit and other medical misadventures — transformed into a humbling and ultimately freeing situation. I shed most vestiges of bodily privacy and shame.)

I watched an awful lot of TV while in the hospital — there wasn’t too much else to do — and I ended up seeing some shows I’d never seen before or since. This included Comedy Central’s Tosh.0, which had always seemed to rely too heavily on frat-type humor. But, stuck in a hospital bed, it was entertaining enough. And I’ll always be grateful for them re-airing an episode from 2013 featuring an interview with the Ostomy Bag Girl. They were talking about her stoma! *I* had a stoma! The broadcast made me feel more… normal. Tosh joked with her but treated her respectfully. Here was an attractive young woman in the same boat as me willing to openly share her story. That’s huge. Kudos Ostomy Bag Girl, and kudos Tosh.0.

PACK A BAG FOR HOME

In mid-December 2016, I was going home for the first time since late August. (It would be another couple of months before my amputated legs would be healed enough to wear prosthetics, so I would just have to wait it out in a wheelchair.) I was ready to be in my apartment, but I was nervous, especially about changing my own bag. Kessler nurse Mila gave me such an encouraging and heartfelt talk that I found myself in tears. It was cathartic. But just then, the rep from Amedisys, the visiting nurse service I’d be using, entered the room. She saw me sobbing and said, “Maybe you’re not ready to go home yet, I’ll talk to your doctor” and walked right out. I felt like Seinfeld, calling after her, “Wait! Come back! It’s not what you think!” I finally got a chance to explain that Mila had just pressed some emotional buttons, and that I was indeed ready. I’d watched nurses change the bag often enough that I was set to attempt it myself.

It was trial-and-error at home, with much assistance from Amedisys nurse Dana. The wafers would leak often so we ordered different bags and bag accessories (belt that hooks to both sides of the bag, stretchable rings that go around the stoma, rubbery strips that hold down the edges of the wafer, etc.) For my bed, I bought “chucks” — well, that’s what they call them in the medical world. In real life, they are pee pads for little kids. Again, not a purchase that fills one with pride.

There were other embarrassments. A leak might suddenly begin while I was on the couch, sometimes with visitors present. My regular home-care “Visiting Angel” Sandy was often there to calmly help me. (My parents were nervous about me returning to my apartment, so insisted on hiring a home-care service. I grew tired of their seemingly constant presence, but Sandy and I developed a sweet friendship which remains to this day.) By the time I returned to Kessler in mid-February for prosthetics training, I was feeling pretty confident about the whole bag thing.

HAVE BAG, WILL TRAVEL

Or so I thought. Kessler ostomy expert Kathy had a field day with my Rube Goldberg-esque bag set-up. “You don’t need any Cheerios [referring to the yellow rings], Froot Loops, whatever!” Dang, I had just received special adhesive strips from Amazon — the key to a leak-free bag experience, I believed — and now Kathy wouldn’t let me use those either. “We’ll get you a one-piece bag and wafer that fits, and you won’t need any of this other… stuff!” Kathy was a hoot.

After three more incredible weeks at Kessler, I was comfortable walking (with a walker), climbing stairs (with a cane), getting into cars, and much more. This meant, instead of being trapped Rapunzel-like in my apartment, as I’d been the previous two months, I could now be out and about. I didn’t want to deal with the bag when I was at a concert or movie or wherever. So I came up with an inelegant solution: I’d finish eating at least two hours before I left my place. That would allow food to move through my system (which happened at a pretty rapid clip) and for me to empty the bag before heading out. I was hungry many nights, but had peace of mind.

My first time out with just a cane was April 29, 2017, for the Billy Miller Forever memorial concert at the Music Hall of Williamsburg. My great friend Todd-o-Phonic Todd Abramson made sure security would be waiting for me, show me to the elevator, and have a table reserved for me in the balcony. (Things like this have become a weird perk of my disability.) It was a great show, the guy next to me bought me a beer, and I was having an excellent time. But late in the concert, I was surprised to see that my bag was really full — inflated like a balloon. Hmm, I had some thinking to do. My friend Joe was going to drive me home, but it was too risky to wait to get from Brooklyn to Jersey. But the bathrooms here were down in the basement, and, how would that work anyway? At home, I’d empty my bag into a small pitcher and empty that into the toilet. What could I do here?

It was then I eyed the empty plastic beer cup on my table. Hmm, just maybe. I stashed it in my backpack, took the elevator to the basement, locked myself in a men’s room stall, opened the bag into the cup… voilà ! Pour, flush, done.

This began an exciting new tradition over the next few months: I never went out without a red plastic Solo cup. It was by far my most regular use of them since college. It allowed me the freedom to eat and drink away from home if I wanted. (Turns out the bubbles in beer produced gas that “inflated” the bag, making leakage more likely.) I took sick pleasure in the fact that whichever bastard stole my backpack unwittingly made off with one of my shit cups.

PAPA’S GOT A BRAND NEW BAG

Back in April, with nurse Dana’s encouragement — noodging, really — I began researching ostomy reversal. All along, I was also dealing with a small opening along my original surgical wound. The previous November, it had suddenly sprung a leak, and no one had been able to make it heal, or even stop leaking. I clearly remember thinking: I have the legs, an ostomy bag, and a leaking wound to cope with. If only I could get rid of two of these issues — hell, even one of them — it would make life that much easier for me.

So around the time I connected with colorectal surgeon Dr. Kevin Holzman — in my insurance plan, highly rated, and with an office in nearby Clifton, New Jersey — I also went under the care of Dr. Rummana Aslam, wound specialist at the Hackensack Medical Center, to hopefully resolve my ongoing abdominal leak. I was immediately very fond of and very confident in both these doctors. And at one point, the medical establishment worked absolutely beautifully when their two specialties overlapped. Two doctors from two different hospital affiliations were actually communicating with each other for my benefit! It was wonderful.

Dr. Holzman had ordered a fistulagram. The results discovered two fistulas (I’m still not 100% sure what they are, but you don’t want them) that were the cause of my leaking wound. This information altered Dr. Aslam’s treatment plan, and ultimately led me to St. Barnabas Hospital in Livingston in August. Dr. Holzman would perform a total abdominal colectomy — basically, scooping out my colon. This resolved the fistula/leakage issue, and also prepared my innards for reversal surgery.

When I regained consciousness in that hospital stay, I noticed something was different. My ostomy bag, which had been on the right side of my abdomen, was now on the left side of my abdomen. What the…? Apparently, an ulcer that had formed on the right side forced the relocation.

All that work I’d done to find the perfect and perfect-sized wafer and bag was suddenly out the window. I now had to rely on consultation from the ostomy nurses at St. Barnabas’ Center for Wound and Burn Healing. Liz was days away from maternity leave, and I knew she’d be a great mom, because she exuded a maternal quality — I felt totally safe in her care. As she brought out a stoma barrier ring I said, “I’m glad my Kessler wound specialist isn’t here to see this; she hates those things.” Liz smiled, “Oh, that must be Kathy?” Turns out Kathy had previously worked at St. Barnabas. It’s a tight-knit field.

It took a few visits to the Center before we settled on a bag/wafer combo we were happy with. And there was an unexpected benefit to this new stoma. It was closer to the center of my stomach than the previous one. (Would’ve said “closer to my belly button” but I actually lost my navel in that August surgery. Collateral damage.) So I could now sit on a toilet and empty the bag directly into it, just like Shannon had promised way back in Hackensack. So long, shit cup!

BAGGING THE BAG

I got better and better at dealing with the bag — for example, carrying tape with me as possible reinforcement — but it was by no means foolproof. Many outings were made awkward or tense, or nights were suddenly cut short, after unexpected appearances of wetness. Humility always lurked around the corner.

So I was really looking forward to my surgery scheduled for December 26, 2017. (When you and the surgeon are both Jewish, it really frees up the end of the year.) I would be the subject of a laparoscopic Hartmann procedure reversal. I don’t know who Hartmann was, but he has my deep appreciation. This would be… my final surgery!

So when I woke up and noticed that I still had a bag, it was all the more disappointing. Dr. Holzman had warned me about this possibility — that he’d do the lion’s share of the work, but leave the actual “reversal” for a later time — but I hadn’t really processed that. It had all seemed so perfect — end of year, end of bag, fresh starts, yadda-yadda.

Now I really had to focus on some unintended wisdom given to me by my disability attorney, Gail A. Spence. She was trying to dissuade me from pursuing a lot of freelance work when I started receiving disability (as to not set off any alarms at Social Security). Ms. Spence said, “Recovery is your full-time job.” The words would have a much deeper impact for me. Whenever there’s been a delay in “getting better,” or a process has taken much longer than anticipated, I just remind myself that it’s OK: This is my job. And it will take as long as it needs to take.

And when Dr. Holzman explained the reasoning for splitting the surgery into two parts (like the final Harry Potter film), it really did make sense. The surgery was more intense than anticipated, and couldn’t be completed laparoscopically (minimally invasive). The main work was completed: He connected my small intestine to my rectum (or, gut to butt, as I like to say). But Dr. Holzman decided to give this new connection a chance to scar over and heal before truly testing it. In about 5 weeks we’d make sure the new connection wasn’t leaking, and if successful, we could then schedule the reversal for 2-3 weeks later.

BAGGING BAG, TAKE 2

Just to add injury to insult, the stoma I left the hospital with was a little bit different than the one I went in with. And a new stoma meant finding another correctly-sized wafer, and leaking until I did, and the resultant skin irritation, this time leading to a little bit of bleeding into the bag. (What fun!)

On top of this, 2017 had turned to 2018, and Trump scaring the greedy insurance companies meant not only a much higher healthcare premium and higher co-pays, but also new complications: Last year, I could order ostomy supplies with no problems, no delays. This year, the supplier informed me that the insurance company needed 5-7 days to approve my request. Dude, I need the bags now. I was forced to make MacGyver-like modifications to old bags I had lying around until my new shipment finally arrived.

Five weeks after surgery, I had the most painful examination ever (suffice to say, it is not pleasant if a balloon is inflated within you), in which liquid was shot through my system, checking for leaks. The result was good — I was ready for the reversal! And on the morning of February 27, I once again found myself at St. Barnabas, hopefully for the final, final time. Incredibly kind nurse Kim checked me in and gave me self-sanitizing instructions (which I knew pretty well by this point). I was wheeled to the O.R. where anesthesiologist C.J. Chen and crew prepped me while Nirvana’s unplugged version “Where Did You Sleep Last Night” played overhead. Soon enough, I was the one sleeping, and then…

I awoke. And looked down. There was a bandage, but… no bag! I was free! Free! Oh I was so happy. It was a truly glorious feeling. (The lingering effects of the transverse abdominis plane block painkiller didn’t hurt neither.) Was also really pleased that I could now alert my buddy Patrick; he’d kindly agreed to drive over from Hoboken with a big box of no-longer-needed ostomy supplies that I was donating to the Wound Center nurses.

In the short term, there were some fresh challenges and humiliations. By the following morning, I’d pooped through my butt (hooray!!) — first time in 18 months — three times, into a bedpan, requiring nursing assistants to wipe my butt like an infant or invalid senior. Dr. Holzman explained that I’d be… loose and… unpredictable… for a number of weeks. (My small intestine was now playing the role of my colon and had to adjust.) We’d give my system a couple of months to work itself out, and then if needed, he could pharmaceutically reduce my number of daily shits to something more manageable.

My unique challenge, as a double amputee, is this: For a while, I’ll need to get to the bathroom frequently. This is decidedly more difficult when I don’t have my legs on — overnight, for example. So, having been home from the hospital for a week now, I’m leaving my legs on for a greater percentage of the day, which isn’t always super comfortable. And I’m not snacking between meals — let’s get the food in, and out, in a timely manner. Hopefully there’s not much left in me at bedtime.

I haven’t left the apartment yet but today I’ll have to. I’ll likely employ my old “trick” of finishing eating well before departing.

In the long term, I am excited to reintroduce white t-shirts — so easily stained — back into my wardrobe. And I’m eager to wear real pants and shorts, with belts, instead of the gym shorts and sweatpants I’ve favored because they’re loose-fitting around the bag. What a fashion plate I’ll be!

And I’ll once again sit on the toilet and read. It’s been a dependable pleasure that I’ve missed quite a lot.

I’ll finally be focusing on just one medical thing — life with and without prosthetics — and over time, I’ll even focus on that less and less. With my gut out of the way, the next big goal is learning to drive with hand controls. I’ll continue to face life one step at a time, while being so much more aware of issues like accessible restrooms, and fighting for accessibility whenever needed.

My old Amedisys personal-care assistant Patricia used to joke that I had the “cleanest ass in Hoboken.” I was so thrilled to call her up from St. Barnabas and say that I’d now have to hand over that crown to someone else.