by Joanne Penhale
(from Ostomy Canada Magazine – Winter 2013: Volume 21, Number 2)
When I had my ileostomy surgery at the age of 22, I asked one of the medical professionals hovering above me what, if any, would the risks of pregnancy be. Someone medical assured me nothing would be different, but that should I require a C-section, I should remind the surgeon about my stoma, so that he or she didn’t accidentally slice my intestines. I took this advice along with me, even if it did make a surgeon sound more like a third grader with sharp scissors.
Ten years later, pregnant, I was lucky enough to get a place in one of Montreal’s Maison de Naissances – or birthing centres – where midwives help women deliver the good old-fashioned vaginal way, and the rate of transfer to hospitals for C-sections is very low.
Early on, however, I was tagged as ‘high-risk’ because I had once been diagnosed with Crohn’s disease. I should mention that ever since my ileostomy surgery, I’ve been thriving and pain-free, and so I’ve shrugged off the disease label, and now just say I used to have Crohn’s disease. So it was frustrating to visit a high-risk pregnancy clinic under the auspices that I was someone with Crohn’s. It was even more frustrating to be told I should deliver my baby at the hospital, just in case a C-section was necessary.
But my midwife really advocated for me. I told her how I’d been needled, drugged, scoped, and cut open enough for one lifetime, and that I wanted to be treated like I’m normal and healthy, which I am, and not have the delivery at the hospital if it could be helped.
She firmly negotiated with the high-risk clinic so that I could give birth in the more relaxed, home-like setting of the Maison de Naissance. The agreement was: my midwife would call the obstetrician regularly during my labour to give updates, because should I need a C-section, the surgeonon-call would be aware and prepared for a woman with an ileostomy, and I would go the hospital, just up the street. So I was grateful for that arrangement.
During the pregnancy I had some ongoing but relatively superficial challenges with my ileostomy and my evergrowing belly: leaks, changing stoma sizes, and generally a hard time finding flexibleenough flanges that would stay on my round hard belly for more than a couple of days.
Four months into the pregnancy, I noticed a yellow line on one side of my stoma, and realized that meant my stoma had been sliced a bit by the edge of the flange. The oval hole I had grown so used cutting for more than a decade was too small, and now I realized I needed to get out of auto-pilot mode and start paying attention to my changing stoma.
About five months in, the two-piece Coloplast system I’d been using for several years began popping off me within 24 hours. I called customer service and Coloplast sent some different samples, but those ended up leaking fairly quickly as well. I visited an ET nurse, who had never seen a pregnant ostomate before! She fit me into a onepiece Hollister system that worked well and I later ordered a box of it. Unfortunately, my belly changed enough within a couple of weeks that that flange started leaking regularly. This was becoming messy. I’d wake up with crap dribbling out the side of my flange – or worse, in a puddle of crap – in bed at 2 a.m. Sleep was already precious because of having to get up to pee a lot, and because it was hard to get comfortable with my new massive body. Spending money on supplies that didn’t even work well was also on my mind.
I called Coloplast, ConvaTec, and Hollister. None of the customer service representatives had any surefire recommendations, but each was nonetheless helpful and sent several samples of at least a couple different systems. The last few months of my pregnancy, I was using a hodge podge of these products, applying flanges with the aid of a mirror, since my stoma was toward the underside of my belly. Some products worked for up to three or four days, others leaked after four hours. I changed flanges on average every two days in my third trimester, and had lots of leaks.
Two people I barely know thrust their baby-loving hands toward my belly to rub it. Both times, I flinched. The first time, it was a neighbour who had recently given birth herself, and I explained I’m sensitive about having my tummy touched and that was that. The second time it happened, I was in a large crowd of people after a film debut. I knew the filmmaker, and despite having a somewhat full bag, I opted to go congratulate her when the film was over – I was wearing a big loose sweater and figured there’d be a big bathroom line-up anyway. She was so excited to see my belly, her hands shot out quickly. One landed right on my bag, so I turned my body away and moved my arm over the sweater that concealed my bag. She probably didn’t notice anything much other than the fact that I clearly didn’t want to be touched, and I just turned the conversation back to her. I don’t feel ashamed about my ileostomy, and I’m quite matter-of-fact about it if it does come up in conversation. But there are some times where it’s really inconvenient and awkward to have someone discover my bag, like those two times during my pregnancy where my belly was grabbed at in public!
I occasionally mentioned the annoyances I was having with ill-fitting flanges to close friends and family, but the one person that really heard about, and saw – and even helped clean up – the many leaks I experienced during my pregnancy, was my husband. We’ve been together for several years, and early in our relationship the first time I had a leak with him, it was partially on him. I remember by the time I had applied a new bag he was still at the kitchen sink, scrubbing his arm. Needless to say, he’s gotten more comfortable with inevitable poop disasters, which of course has become a way of life with having a baby.
So, our baby did make it into the world. I was proud of myself, and amazed at my body when my baby finally shot out of it. The labour was fifty-six hours from the very beginning to the end, with about sixteen hours of active labour. While it’s impossible to say what would have happened if I had done it in the hospital, I can guess that at some point someone would have suggested my labour wasn’t progressing and some kind of intervention would have been recommended. What I can say for sure is that I felt safe and respected under the care of our midwifery team, and that my body – despite its history – was fully capable of birth. In fact, maybe it’s because of my history that I knew it was okay to assert my wishes not to give birth in a hospital, even if it was against a doctor’s recommendation.
Given the high frequency of bag changes during the last half of my pregnancy, it was practically a miracle that my flange kept a good seal throughout my whole labour. About twenty minutes after my daughter was born, I noticed my flange was buckling on my sweaty, and now soft and somewhat deflated belly. I slapped some medical tape around the edges to buy myself about thirty more minutes with the newest family member.
For the weeks following the birth, my stoma and my belly were still changing and I had to be more attentive about sizing the hole in my flange. I also had very small wrinkles all around my stoma – projecting outward like the sun’s rays. Using paste – as I normally do anyway – helped fill in those little valleys. Really, after about two months, everything with my ileostomy was back to normal and I am back in my old appliance system. And I have a wonderful little daughter – who I have to admit – blows me away with her fully functioning digestive tract!
Joanne lives in Montreal, QC.
Joanne Penhale’s above article originally appeared under the title “Natural is Best” in the Winter 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.