A Nursing Student Tells OYC Her J-Pouch Story and How That Led to Her Courageous Decision to Freeze Her Eggs to Someday Have Children.
By Katie Gene Friedman
When I was first diagnosed with ulcerative colitis in my senior year of college, my colitis responded to medication and didn’t take up much of my life. Consequently, I only disclosed my diagnosis to my then boyfriend, best friend, and immediate family. During a bad flare and particularly stressful semester in grad school studying social psychology, that group expanded to include the nucleus of my social circle and some professors. At that point, my disease affected what I was doing but not who I was. Then, during the fateful year of 2012, when the inconvenience and humiliation of having a butt disease transmuted into abject horror that my body was unraveling, I played a strong game of passing for normal. If I could go out on dates and be sexually intimate with attractive men, without their suspecting a thing, my worth and positive prognosis would be reified, is how I rationalized my behavior. Only it was a superficial form of acceptance and I began developing misgivings: if they knew how broken and respulsive I really was, they wouldn’t want me anymore. By the time I connected with my colorectal surgeon in 2012, I was overdue to kiss my colon goodbye. And shortly thereafter, I had an ileostomy and later, a J-pouch fashioned out of my small intestine and connected to my rectal cuff so I could poop out of the original location, albeit several times a day.
Above (from left to right): Katie with a moonface while taking Prednisone, Katie & Paloma the stoma, Katie’s ostomy-closure scar (formerly a “belly butthole”)
I was never one of those little girls who prepped for adulthood by playing house and rolling dolls around in a stroller. Three decades later, I still haven’t taken to the social trappings that appoint one successful at womanhood and femininity. So I wasn’t majorly bummed when my colorectal surgeon informed me that, if he removed my colon and replaced my rectum with a J-Pouch, it might be a bit tricky to conceive the natural way. It’s not that there was or would be anything wrong with my reproductive organs, per se. It’s just that, like traffic cones knocked over by ephedrine-fueled truckers, scar tissue and adhesions could obstruct sperm along the fallopian tube superhighway. Post-J-Pouch installation, dedicated cups o’ sperm might be rerouted on a circuitous detour through a lab for what is normally achieved in missionary position in the splendor of one’s Ikea bed with Chris Isaak yodeling in the background. With extra medical support, my surgeon assured me, my chances of conceiving would be equal to that of a healthy adult human.
Given the mercurial revolt of my body and swift devolution of my life, I brushed off this info about my reproductive prospects as laughably irrelevant. I mean, how could I consider creating another life while I could barely sustain my own? More immediate to my decision to exorcise my most recalcitrant body part was my being cast as an invalid and prisoner—having lost my dignity, social life, career, and sense of self. I feared that I’d be claimed as a “dependent” forever. I realized that so long as I retained my colon, I’d be at the mercy of the healthcare system and whatever cronies harbored the power to determine whether I deserved to exist after preexisting. And I understood that my recovery would be swiftest and most complete as a young person with no comorbidities. Besides, in my 20s, irrespective of the irascibility of my ulcerative colitis, orgasms and exploration were my primary sexual priorities. Drooly babies, no thanks! All I cared to hear about my impending surgery was how my reconfigured anatomy would change how sex felt. My surgeon didn’t know the answer to this. But he tried!
Lingering somewhere was the lowly matter of how I might make babies—eventually. If I were to be impregnated with my colon in situ, it would compel some very difficult decisions, which would propagate guilt and feelings of inadequacy, as well as side eye from Mean Moms. The current consensus is that biologics are the safest bet; the risks of birthing an immunosuppressed baby are minimal compared to those of being gestated by an acutely ill person. But long-term side effects of prenatal exposure are unknown and it’s impossible to predict who’s prone to flare. From prematurity to low birth weight to miscarriage to the evils of cortisol exposure, a pregnancy flare could generate seriously subpar outcomes. Think of how stressful it is to be in a flare, now add in the insight that being sick could harm your baby-to-be, and top it off with the gut-wrenching revelation that incessant worry is liable to compound the damage. Since ulcerative colitis solely affects the colon, excising it, I was told, would spare me from future flares and potentially dangerous medication side effects.
OUTSOURCING MY REPRODUCTIVE CAPACITY
At 31, before relaunching my career, I consulted a reproductive endocrinologist about freezing my eggs. Conception, pregnancy, and birth would be unduly arduous given my medical history. As long as I was going to go through the trouble of having my eggs retrieved, once I was ready to parent, I planned to have them instilled in a surrogate, outsourcing my fickle body’s crucial functions to someone more reliable. At 34, teetering on the brink of that ominous age when women are said to culturally expire, I finally went through with it. Between years 1 and 2 of a 3-year nurse practitioner program, I gambled my summer vacation away glamorously: self-administering twice daily hormone injections within a 1-hour window of 7 a.m. and 7 p.m, and wearily roaming to my doctor’s office for transvaginal ultrasounds to visualize my follicle growth as well as lab tests to quantify my rising hormone levels. I repeated this process twice over the course of a year for a total of 37 mature eggs; on average, it takes 10 eggs to produce 1 live human child.
Above (from left to right): Ultrasound wand at attention, Measuring the diameter of my follicles on the ultrasound monitor, Jokingly using a solo cup as a sharps bin when the pharmacy forgot to send one
Let’s get this out of the way: I never wanted to be pregnant. I find fairytale storylines positively boring. The post-apocalyptic MO of building humanoids in petri dishes appeals to me viscerally. Before I got sick, I was mortified by the prospect of an episiotomy and run-of-the-mill vaginal looseness. Maybe this sounds petty, privileged, and vain, and it is, but the fear is real regardless. Which is to say, your mileage may vary. I have an extensive list of reasons why I’m planning to use a surrogate, beyond fear of bodily invasion, alienation, and retraumatization. But if I weren’t already opposed to the traditional technique, baking a baby in my oven and whatever it meant about my womanhood, motherhood, and self-sacrifice, or whatever, would supercede these reservations.
You know how moms joke about peeing a little whenever they sneeze? Just as trauma to the “pelvic floor” can cause urinary incontinence, it can cause fecal incontinence. And you know who needs an air-tight butthole seal? Someone with a J-pouch whose poop ranges in consistency from juice to pudding to applesauce to oatmeal. Dr. Feza Remzi, a premier colorectal surgeon at NYU Langone, conducted a study on childbirth in J-Pouchers, comparing sphincter function in patients who had exclusively given birth via cesarean since pouch installation with that of vaginal deliverers. Vaginal deliverers were more likely to have a sphincter defect (measured by endosonography), couldn’t squeeze their buttholes shut as tightly (measured by manometry), and reported lower quality of life. I’ve gone through so much already to restore my bowel control. I refuse to regress to dribbling, strategically placed pads, and mad dashes to the bathroom while sopping up a baby’s pudding poop.
Even worse than loosening and leakage, is tearing and destruction. If one has a 3rd degree tear (laceration of perineal muscle and external anal sphincter) or 4th degree tear (laceration of internal anal sphincter that can extend to rectal mucosa), they can kiss their J-Pouch goodbye. Ripped sphincters can cause incontinence even in able-bodied people with formed stool. I doubt a surgically-created conduit, stapled and scar-tissued together, would be maximally pliable and accommodate a baby’s head charging at it with full force. Planned cesarean is the most appealing birthing option. This, too, comes with extra risks. Every time your abdomen is opened up and manipulated, your chances of adhesions increase. Down the line, adhesions can lead to bowel obstructions, fistulas, pain, and fertility problems. C-sections might be routine in this country, but those metal retractors they use to wrest extraneous tissue from the site of the incision are savage.
This brings us to hemorrhoids. They are common in pregnant people because their blood supply increases by 50% and they’re notoriously constipated. Bearing down during birth exacerbates the situation. My OB professor taught us about postpartum care by inviting us to visualize a sub sandwich (or “hoagie,” as they say here in Philadelphia), with a super absorbency pad as ciabatta, three witch hazel pads laid out like pickles, and secretions slopped on as sauce. As is, I have ‘roid rage from pooping 9x a day and butt burn from acidic ileal stool. I use every potion and lotion and soak in a lavender-infused sitz bath like I’m a new age hippie. If I were “with baby,” would my veins hang down and wobble to and fro?
EGG-FREEZING AS A J-POUCHER
After all this speculation on worst case scenarios, you must be wondering how my experience freezing my eggs as a J-Poucher differed from that of the prototypical IVF patient who is “infertile” and otherwise healthy. For starters, injecting myself twice daily was tougher than expected. I’m not squeamish about needles in the slightest. I’m a women’s health nurse! When I was sick, I plunged ginormous Humira pens into my own flesh. But when you have to inject multiple times a day and rotate sites, you run out of room. Despite my surgeon’s bang up job minimizing external scars, a dense network of abdominal scar tissue is hiding out subcutaneously. After a week or so, my needle would glide halfway in then meet resistance. I’d pull it out and return to a previously penetrable site, to discover it was too swollen from stabbings to accept another dose.
Emptying a J-Pouch is different from pooping out of your original butt apparatus. Makes sense considering the muscle layers and mechanisms of motility in the ileum (the distal portion of small intestines from which the pouch is crafted) differ from those in the large intestines. When you have an original butt intact, you push the poop out primarily by relaxing your butt muscles and secondarily by passively relying on the peristaltic contractions of the sigmoid colon and rectum. To empty a J-Pouch, you ignore all the stuff down there and engage your abdominal muscles to build up pressure. Sometimes supplying an external source of motion helps. You can massage your abdomen, reposition yourself, and wriggle around in a wavelike motion. Not like The Wave you’d synchronize with a crowd at an arena rock concert. Just, like, I dunno, a motion to get your guts moving.
When you are prepping for egg retrieval, this digestive dance becomes impossible. The goal of injecting hormones is to stimulate your ovaries until a maximum number of follicles mature to > 18 mm (or 1.8 cm) in diameter, as measured on the ultrasound monitor. During each retrieval, they extracted between 14 and 20 eggs. I’m not sure how much human space 14 to 20 spheres about 2 cm wide take up. Let’s just say that my ovaries were GARGANTUAN and my abdomen expanded exponentially. No longer could I engage my abdominal muscles and press on my pooch to propel poop. Bloated, swollen, and numb all at once, I lost tract of where my guts were even located. With so many novel sensations and so much extra volume, the usual signals succumbed to static. So, I resorted to bearing down with my butt. My hemorrhoids bulged like Mr. DeMartino’s eye on Daria. Recovery was misery. Opioids cause constipation; you have to keep it moving or the build up of gas adds to the painful pressure of internal swelling.
WARNING: POTENTIALLY GRAPHIC PHOTOS BELOW
Because my body has reliably betrayed me, I’ve become hyper-attentive to physical cues. Noticing a divergence from baseline can be critical in identifying a problem when one exists. But barely perceptible, benign changes can also spark low-grade panic. Each round of hormone injections remodeled me as a one-off: round one my nipples were delectably hypersensitive and I smelled like a stranger; round two a deluge of fetid fluids streamed out of me and I inflated to the tautness of the blueberry version of Willy Wonka’s Violet; round three my labia were practically swollen shut, my genitals winced at touch, and cankles became me. In each iteration, I felt alien in my own skin and was reminded of how ethereal and impermanent we are, how flimsy our sense of selves that is predicated on our physicality. The dysphoria I experienced maps onto my IBD trauma.
HOW I LEARNED TO VOUCH FOR MY POUCH
(Sorry, there is no catchy ulcerative colitis equivalent of “OWN YOUR CROHNS.”)
Once I had gotten rid of my colon, I began participating in a support group for women with IBD in New York City, which is how I met Tina. There I learned how common my insecurities, neuroses, coping mechanisms, and challenges were among people whose bodies had terrorized them. It made me feel less like there was something uniquely wrong with me and less like I was ruined beyond repair. Aligning yourself with others who have gross, embarrassing problems is the epitome of de-internalizing social stigma; it manifests as genuine self-acceptance. I thought back to a concept that fascinated and perplexed me when I was in grad school studying social psychology: members of a marginalized group who strongly identify with their group have better psychological outcomes. Their sense of belonging and group identity overcome the decrement to self-esteem that goes along with being looked down upon and discriminated against by society at-large.
The social support that I get from my IBD community has fostered resiliency, buffered the impact of dealing with individuals and systems that have judged and excluded me, and made me infinitely wiser. I vouch for my pouch by identifying with my fellow IBDers and publicly increasing our visibility. As a nursing student, this means speaking up to correct technical mistakes, reminding teachers and classmates that many disabilities are invisible and you should never assume a patient or colleague’s health status by looking at them, and discouraging people from using insulting euphemism that imply our body functions are so humiliating they are unmentionable. So, here I am mentioning IBD in all its grossness and glory, and here are some photos that show me at my best, worst, most vulnerable, and most medicalized.
IBD comrades, own your Crohn’s, own your colitis, and research the reproductive options you have while living and pooping with a J-pouch.
**Hope you all found this blog post educational. As always, I love to hear your feedback so please feel free to share comments!**
