Living with Crohn’s disease, a chronic inflammatory condition of the gastrointestinal tract. Darina Molloy tells her story.
In hindsight, I was always the kid with the sore tummy. Most of the time, it just meant taking to the couch with a book, which was no penance for a dedicated reader. When I was nine, I was delighted with the spoiling that accompanied a three-night stay in hospital. Appendicitis was ruled out at that time, but as I grew into my teens the pains grew worse, and frequently resulted in the family doctor being called to the house where he would administer the only cure that worked – a shot of morphine to the hip. It wasn’t until I was in college that the unexplained crippling pains – which had gotten worse and were recurring far more frequently – were finally diagnosed. Suspected appendicitis had landed me in the hospital yet again, only this time the surgeon had gone ahead with the procedure.
“Healthiest appendix I ever saw,” he told me afterwards. “But we saw what the problem was straight away.” Years of repeated tests and investigative scopes had failed to show anything – but apparently there was a silver lining to my wrongful appendectomy. Not being possessed of a brilliant bedside manner, his abrupt diagnosis was delivered to a very woozy, post-surgery patient. “You have Crohn’s disease. Don’t worry, it’s not cancerous.” Of course, all I heard was the second C-word, and I could see by my dad’s face that he was equally perturbed. It was 1991, and I had never even heard of Crohn’s disease, nor had my family or any of my friends.
I finished out my final, post-grad year in college – which included a few more week-long stays in hospital amid final assignments and cramming for exams – and emerged into recessionary Ireland. Finally armed with an incontrovertible diagnosis, but without the added assistance of the yet-to-be-invented Google, I was referred to a surgeon in my home town who agreed that it was time to tackle the problem head-on. The two main ways of handling Crohn’s disease, I was told, were to operate and remove the part of the intestine with inflammation or to undergo a course of steroids.
I was assessed to be more suitable for the surgical option, and was duly operated on in April 1992. I emerged from the four-hour surgery minus a couple of feet of small bowel (or intestine). Not a huge problem, as the misleadingly named organ ranges in length from 15 to 32 feet. Twenty-two years later and I can still remember the exhilaration of waking up after surgery and not feeling any pain. And yes, I’m sure the morphine pump was helping, but I was utterly convinced that the debilitating pain I’d been having for years was gone. I was out of bed later that evening, discharged two days later and out nightclubbing by the weekend. The nurses were joking that I was a miracle patient, but as anybody who has lived with physical pain knows – the relief when it disappears is just incredible.
Shortly afterwards, my mother, who clipped every article she came across relating to Crohn’s, highlighted a piece that suggested a link between cow’s milk and the disease. This rang alarm bells with me – we had always been huge consumers of milk in our family, and during my years at college – in a misguided nod to ‘healthy’ eating – I drank a pint of milk each day with my fairly awful canteen dinner. I loved milk, but decided to try weaning myself off it. Years later, during my first pregnancy, panicked about depriving my bump of much-needed calcium, I started to introduce a daily glass of milk into my diet. Within three days, I was writhing in pain as the first Crohn’s flare-up I’d had in years took hold. To this day, I still miss the taste of milk. I can have it in my three daily cups of tea, and I have no problem with other dairy products, but that’s the limit of my tolerance.
After my operation, I was advised that the surgery could not be considered a cure – that Crohn’s disease does not disappear – but that I could think of myself as being in remission. I had one brief meeting with a dietitian, but since there had never been any investigation of a food link to my illness (apart from my milk self-diagnosis), I just received some vague advice about avoiding spicy food. The next few years, during which I moved to New York and paid little attention to healthy eating or, indeed, healthy anything, would take its toll.
Throwing myself headlong into an unlimited world of pizzerias, delis, and other culinary options, I relied mainly on takeout, and the consequences for my digestive system were dire. While I rarely suffered the painful attacks of the pre-operation years, I was plagued by another mortifying problem. Because my small intestine was now shorter, any food that didn’t agree with me tended to travel quickly through my system, with the result that I could never be too far from a restroom. Subway delays – or any delay – were a nightmare, and I could have produced my own Zagat’s guide to the restrooms of New York City, such was the number of times I was almost caught short.
Stupidly, I didn’t quite make the connection between what I was putting into my body, and the resulting mad dashes. As more of our friends began to settle down, and we ourselves began to plan a Mayo wedding, nights out began to evolve into informal dinner parties in each other’s apartments, until, finally, I had no option but to learn my way around a kitchen and start to put decent food on the table. Within a year of slowly adding to my repertoire of basic recipes, the attacks had subsided dramatically, and my digestive issues had stabilized. The odd, renegade lunch at McDonald’s with a work colleague and the discomfort that followed finally caused the penny to drop. If I wanted to stay well, I was going to have to keep an eye on what I was eating.
In the years that followed, each of my pregnancies brought a mini-flare up that didn’t appear to be diet-related. On the plus side, the agony of my Crohn’s attacks proved to be a wonderful rehearsal for labor pains, though I far preferred the end result of the latter. I still have the very occasional attack – probably just one or two a year – that reminds me Crohn’s will always be a part of my life. When it strikes, I know I’ll be out of action for a day or two. The inflammation can be easily felt bulging through my abdomen, the pain is horrendous, and avoiding food for the duration helps. The diagnosis has brought relief in many ways because prior to having a name to go with the stomach pains, I worried at times that people would think I was imagining them. As the years went on, also, I began to hear about Crohn’s disease more and more. The brother of a friend, my brother’s former girlfriend, the teenage son of a good friend – was it that it was becoming more prevalent or just more readily identified? Hearing about some of these other cases also reminded me that my particular case was far from the worst. I know of others who have suffered catastrophic weight loss, and patients even younger than me who have to live with colostomies.
Recently, during a medical checkup, my GP felt it was a good idea to refer me to a gastroenterologist who could determine how I was faring medically. One colonoscopy and one gastroscopy later, it was determined that while I had some inflammation and ulceration around the surgical anastomosis (the area where my intestine had been reattached), there was nothing too troubling to report. He recommended daily tablets to help reduce the risk of flare-ups, but not being a huge fan of regular medication, I prefer to deal with the couple of attacks a year I could potentially have. In the meantime, I will continue to eat (reasonably) well, and to be grateful that, as illnesses go, mine has not interfered hugely with my life.
Darina Molloy, is a former Assistant Editor for Irish America magazine.