Temporary Ileostomy and Recovery (with a baby in tow)
August 2016: Ostomy change time—all new!
“To dance is not to jump to your feet and rise painlessly in the air like dust.
To rise above both worlds is to dance in the blood of your pain and give up your life.”
April 2016: The ostomy nurse at Sloan Kettering teaching me how to change my ostomy. Here, we are measuring the stoma to be sure my skin is protected by the appropriate flange before putting on the new ostomy.
September 2016: After the ileostomy reversal and take-down. I’d then learn to live with the j-pouch.
2017: My abdominal surgery scars after healing.
—Original written November 28, 2018
Going through major life-saving surgeries to save yourself from colorectal cancer and being left with an altered body can be difficult, but it can also make you resilient and more aware. It can take a long time to rebuild your life when it is rocked by a genetic disease, massive operations, months of recovery, and a disabling condition. This is something that is learned from experience. Patience, acceptance, and perseverance are key to reconstructing one's life—and living.
Living with an ostomy for five months wasn't easy following my colectomy. And living now with a j-pouch is a trade-off with its own set of real disadvantages and advantages. A middle-aged man recently told me that his recovery from having only six inches of his colon removed was way worse than his recovery from heart surgery. That explained so much in retrospect... I had all (five feet) of it removed, and then some; I slept for weeks when I finally got home from having my large intestine removed—due to the high-grade dysplasia and polyps throughout—not to mention the other trials, deep and unrelenting, that my new system has put me through for a long time. So, because of the J-pouch I sometimes have pain, burning… inconvenience, pain, sometimes relentless pain for days—my life has been all about adapting to the system and learning and practicing self-care (taking baths, lying down, not going anywhere, not eating anything, applying cream, being sure a bathroom is near, and sometimes medicating) and knowing how to navigate my day and comings and goings as I go through these episodes. Sometimes it’s food I eat… sometimes it’s that I forgot my psyllium in the morning or used the wrong TP and my butt is bleeding and it hurts, but go I go.
As my home ostomy nurse said, they don't tell you that recovery can actually take a full year, if not more. I had doctors appointments constantly, four per week sometimes, an at-home ostomy nurse, worries about the polyps that were being taken out in upper endoscopies, painful anti-clotting shots to give myself in the abdomen, and a precious newborn baby to care for. I was a mother for the first time. The summer following my colectomy there were several complications, trips to the ER, CT scans, and other surgeries to go in for and recover from. There was a cut-and-drain surgery when my ostomy was leaking and I didn’t know it—I nearly developed cellulitis from the ostomy leaking for days before I realized it. There were check-up appointments in the city at Sloan Kettering to make sure the connection was “supple” and good. There was the barium enema. There was the clinic appointment to blow air up my anus to make sure it went into the plastic bag on my stoma. There was the ileostomy reversal/take-down surgery. My mother and my son's father cared for my son when they could while I couldn't; I had to hire two nannies for the two months following each of the two major surgeries. They would come and take care of my baby boy from 8am–4pm, monday through friday, for the four months (totaly) that I couldn't lift him. It was very difficult to face my limits as a new mother.
Home after the colectomy and two weeks of recovery at MSK, I bathed my son in tears.
After my return home from my colectomy and recovery, my sister Lorenza came to visit from Atlanta.
I had hardly any energy, but the sun and lake with her in my hometown of Lake George was priceless.
My mom got my son a nurse's outfit— his smile and sweetness nursed me back to health in many ways.
Learning how to take care of an ostomy and the discomfort it caused, the extra surgery and four-day hospital stay it caused from faulty bags, skin irritation, and the feel of something heavy hanging off my abdomen, the weirdness of it... This was all something I hid underneath my long shirts and my smile. People would see me and say, “O WOW! You look so good!” And inside I was thinking, wow. I "look" so healthy; how ironic this comment didn't make me feel any better. It made me feel alienated in an already estranged experience that I was going through. I began to realize that all of my journey—from the birth of my son to the diagnosis with F.A.P., and from the nights lying awake wondering if I would alive to be his mother to the constant procedures—was very much an inner experience. Indeed, all of F.A.P. is an inner experience, just as much as it is an invisible illness.
Many people, and certainly strangers, never knew I had an ostomy. When I flew to Florida for my sister's wedding, I went through security and was detained while they summoned a specialized, female TSA agent to come and pat down my ostomy. Waiting for them to find a female agent to do this took forever. I missed the plane home because of it, and had to be rerouted with an extra layover with my six-month-old. But really, through all this, my son was my unique joy; he kept me smiling with his radiant smile, and gave me focus and a purpose through all of it.
September 2016: enjoying my son while preparing for my fourth surgery of the year, the ileostomy reversal
I had chosen to have a j-pouch because it would allow me the freedoms of a "normal" life. Yet the j-pouch left me with more of a disabling condition: When I need the restroom, it is urgent for reasons I'd rather not get into, other than to say it is because I had a total colectomy. The frequency too, and the pain that comes some evenings as I still learn what I cannot eat—no seeds, few vegetables, no raw vegetables, little fruit or sugar—and two years later, I still have ongoing issues so no nut butters and definitely no cooked spinach or blueberries. Yes, this is a disabling condition, as my cancer doctor explained to me when it came time to decide if I could go back to work in 2017, as the college was asking if I would refill my position as Professor of French and Italian. I thought I had a choice, maybe, but I realize that I didn’t really have one. I was told the condition I was left with could get better, but it never got better. My management of it has gotten as good as it could (I know better my limits and how to be flexible in a pinch), as that is all one can do. But it was just as unthinkable to return to the classroom, full-time, as it was gut-wrenching to give it up.
Traveling still isn't easy, and requires someone with understanding by my side. My friend Carol was thankful I made the trip to Paris special birthday celebration for her this past November. I was thankful for her patience as we worked our day around my needs.
July 2016: My son's baptism was scheduled for when I could lift him again
I'm still glad I went with the j-pouch, even though it has completely reshaped my life (and I’be very grateful to my top surgeon, Dr. Jose Guillem, for how well it all went). With an ostomy there was the inability to do a down dog, for example, due to the real fear that the ostomy could always detach—and that's what it did once during a very nice dinner in a restaurant in Bolton Landing. I was eating pasta and having some laughs with a male friend. I happened to put my hand to my abdomen where my ostomy was and felt slime.... the bag had come off!! Thank goodness I was wearing a black dress and not a light-colored one! I excused myself and walked through the dining room to the bathroom; I was a bit traumatized but at least I was prepared. With an ostomy, you have to travel with materials at all times precisely because of situations like this. Without the kit, you'd be totally shit out of luck; poop is constantly coming out of that ostomy with zero ability to control it. I often wondered how I would survive in end times if I didn’t have ostomy bags. I digress….. There I was in the restaurant bathroom, working quickly: You need to be able to clean the adhesive off your skin with remover after unsnapping the bag and peeling the mount off, use gauze to clean what involuntarily comes out, maintain calm of mind as you work steadily to cut the mount to the right size around the stoma, and finally, after that is in place, you snap on a new bag and it's done. Personally, I also always carried around latex gloves.
In all this—it’s a point worth returning to—I couldn't help but wonder how I would survive in an end-of-the-times scenario?! I was repeatedly warned by my surgeon of the possibility of dehydration, since nothing stayed in my body. I happened to acquire a specialized straw that purifies water from a muddy puddle, making it potable—just in case. Survival of the fittest; I had a son to worry about!
Five months of an ostomy with a newborn baby. Taking care of a newborn is hard work as it is.But healing from massive surgery and minor surgeries, constant doctor appointments, and fatigue really was not ideal. Four months unable to lift him due to an 8-inch incision down my abdomen. Imagine what this does to the psyche of a mother who wants nothing more than to nurture and be there for her baby. I envy moms whose first year with their child poses more "normal" challenges. (But the child's health is most important, and I am so thankful for his.) Missing him while I was in the hospital recovering for days and days was the worst. I spent 40 nights in the hospital in 2016 when he was born. And yet... the miracle....he saved my life. I would have already died of the colon cancer without him coming into my life.
My lil angel and me in 2017
I've learned perhaps more than one invaluable lesson from all of the above, one of which is to set fire to everything and to let it burn as a sweet offering. My life-saving surgery was quite something. My struggles and surrendering are all I can really do; God will help me through, along with the many kindnesses that have been extended to me on this journey— without which I wouldn't have been able to make the present look any bit promising.
