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In What’s It Like To… New Zealanders from all walks of life share stories of health & wellbeing. Here, Tanya Smith shares with Paulette Crowley what it’s like to learn you have Crohn’s disease and learn to manage the autoimmune condition.
My relationship with food has always been a bit weird. I’ve been fussy about what I eat, mainly because I couldn’t digest it. I’ve never really liked red meat, and I am definitely not friends with fat. Junk food never agreed with me and that was fine, as I didn’t really like it.
These food issues weren’t that bad until a couple of months after I had my third baby. I started feeling really off, really unwell and had no energy. From there, everything kind of snowballed. I had constant unexplained anxiety and couldn’t sleep very well. When I ate food, everything hurt – it hurt going in, it hurt going out and it hurt everything in between. I lost so much weight and muscle mass, it was scary. I also had horrendous heartburn and a low-grade fever.
I was a funny case of Crohn’s disease. I was sick but not as overtly sick as others with the condition. Some people will have diarrhoea 20 times a day. That wasn’t the case for me, but what was going on with my digestive system was not normal. It was horrific.
It wasn’t easy to figure out what was going on. At one point, they thought I had gallstones but my ultrasound and bloodwork were normal. I was freaking out with all of these symptoms and was begging for someone to diagnose the issue.
Finally, an endoscopy and a colonoscopy found ulcers and patches of inflammation that confirmed that I had Crohn’s. This whole process took five months, which I found out was incredibly quick. I’m quite medically literate and I had a great GP, but I had to do a lot of pushing.
The two main conditions encompassing inflammatory bowel disease (IBD) are Crohn’s disease and ulcerative colitis. Ulcerative colitis affects the large intestine and Crohn’s can affect any part of the digestive tract, from mouth to anus. Some people develop fistulas, bowel narrowing and bowel blockages, among other complications. Severe disease can cause so much damage that sections of the intestine need to be removed. They may have to have an ostomy bag, either temporarily or permanently.
Although it’s not a blanket rule, inflammatory bowel disease can flare up after having a baby. During pregnancy, you are in an immunosuppressed state, which means any autoimmune condition, where your immune system attacks your body, is usually also suppressed. When the pregnancy finishes, the autoimmune condition can really flare. That’s what happened to me.
When I told my mum about the diagnosis, she said, “That’s probably what your great-grandmother died from.” Like me, my great-grandmother could never tolerate fats. Her food problems always got worse after having babies and she’d lose a lot of weight. She died in a hospital under what was excellent medical care at the time, but with no answers.
So, genetics can play a part in having Crohn’s but there is no single definitive cause. Some research shows that anything that really throws your gut microbiome out can cause you to develop Crohn’s if you are predisposed to it. As far as I understand, the traditional Western diet can play a role in the disease.
Stress might also play a part in developing Crohn’s. All three of my pregnancies were traumatic from having hyperemesis (severe nausea and vomiting).
The new normal
The first couple of years after being diagnosed were spent trying to manage a “new normal” and figure out what would get me feeling well again. I had another flare about a year in, which meant the medication I was on at the time wasn’t working.
Corticosteroids are the front-line treatment for a bad flare of Crohn’s. For maintenance medication there are several types of drugs and some of them are used together. They include aminosalicylates, immunomodulators and biologics. Biologics target specific parts of the immune system or inflammation pathways to control disease symptoms. Surgery is sometimes needed for some complications of the disease like bowel obstructions, fistulas or abscesses. I’ve been lucky enough to be managed mainly by an immunomodulator. Every person with Crohn’s is different.
Diet is also a way to manage the condition, although it’s not a cure. The Crohn’s Disease Exclusion Diet has three phases. When you’re in a flare, your gut is so inflamed that it can hardly process food. At that stage, 50% or more of your daily diet is made up of medical meal-replacement drinks and specific easily digestible food, like cooked and cooled potatoes and chicken breast. In the next phase, you introduce other simple food for a few weeks, all under the guidance of a dietitian. If everything goes well then you enter the maintenance phase.
That phase is very liveable, although there are limits on inflammatory foods. It’s a complete no on heavily processed foods, like dough and pastry. My diet has lots of whole foods like fish, chicken, fruit and vegetables. I don’t have celiac disease but I’m quite gluten intolerant, so I don’t eat bread. Even though eating like this makes me a bit fussier with food than the average person, it’s doable. I no longer go out for meals as I can’t eat anything on the menu.
For me, exercise is a huge part of staying well. I’ve always done lots of sports – I go to the gym, mountain bike, play soccer and all sorts of stuff. But I definitely have to watch that I don’t get dehydrated or skip on having enough sleep. I’m lucky enough that I can work part-time as a vet, so I have time to be a mum to my kids and enjoy a balanced life.
Luckily, my disease is now in remission. My inflammation markers are tested every three months and I feel well – long may that remain.
New Zealand has one of the highest rates of inflammatory bowel disease (IBD) worldwide, with reports indicating over 20,000 people affected in 2017. Numbers are increasing at more than 5% a year and recent studies suggest this number could exceed 40,000 by 2045. Observed this week, World IBD Day brings together more than 50 countries in a united effort to raise awareness and support those living with Crohn’s disease and ulcerative colitis.
Learn more about IBD: https://crohnsandcolitis.org.nz/
Help make a difference: https://givealittle.co.nz/org/ccnz
