“I’m not the only one with more than one diagnosis” – Allannah’s story
One year, almost to the day, after giving birth to my second child at 36, I fell ill. We had just celebrated her first birthday, a gorgeous day with friends and family, and I woke one morning sick to my stomach. I had symptoms of nausea and diarrhoea for the rest of the week and could not stomach food at all.
I lost the first 5 of the 20kgs I would lose over the next 12 months in that week. My GP diagnosed a ‘French’ stomach flu that would last for three months. And, sure enough, after a couple of months it did improve. However, after a night out during Easter, my symptoms returned with full force. I had the misfortune to be in a cafe with my daughter, still in her stroller, when it did. And this time it didn’t improve. The weight loss was slow but steady. I went from 67kgs to 47kgs. At 167cm in height, it was impossible to ignore.
My symptoms were constant nausea, cramping and diarrhoea. I had to eat a very restricted diet. The worst part was not the illness itself, but the way people around me reacted to it. My mother told me not to worry, that i was losing the baby weight, and half my luck. My mother-in-law, along with many others, was convinced that I had anorexia nervosa and was starving myself. She humiliated me very publicly at Christmas, when i weighed just 50 kgs. I was a yoga teacher who taught at the Melbourne Sports and Aquatic Centre, and I lost a couple of female students who commented that I didn’t need to lose any more weight and should stop it immediately.
When I ran into people I hadn’t seen in a while, they commented on how thin I was. When they asked for an explanation I had nothing to tell them. My GP, who was also impressed with my weight loss, and told me frankly that she had no idea what was wrong. She sent me to a gastroenterologist who was convinced it was Coeliac disease and performed an endoscopy. When it came back negative for Coeliac, he told me there was nothing wrong with me and that I should start drinking alcohol again.
Having been utterly failed by the medical system I told those that asked that I had a parasite. Horrifyingly, more than one laughingly asked me how I picked it up so that they too, could get themselves a quick weight loss fix. The worst comments came from women who were already very thin themselves. It was like I was winning a weight war, and they didn’t hold back. But they needn’t have bothered, as I was already so distressed by the way I looked, and the idea that I might have a disease which would kill me and leave my two young children motherless.
I finally stopped waiting for my GP to listen and found a laparoscopic surgeon, who agreed to investigate. My GP cautioned that he wouldn’t just operate on anyone, but I persisted, and she wrote me the referral. He diagnosed severe stage 4 endometriosis but was still concerned about the digestive issues, even though I did regain 3kgs after surgery, and was so relieved I cried. The nausea was gone, yet the cramping and diarrhoea remained. The gastroenterologist he referred me to performed a colonoscopy and an endoscopy which were both clear. But when he conducted a pill endoscopy, he found lesions at my terminal ileum and diagnosed me with Crohn’s disease.
My Crohn’s is unusual as it is affected by the cold – cold weather, cold water and food straight from the fridge. I have to be careful with my diet, only white bread, no spicy food, no ice cream, not too much garlic etc. I keep it simple. Winters are difficult, Summers are glorious. Slowly I have regained 13 of the 20 kgs I lost. No-one comments on my weight now. I have lived with my Crohn’s for nearly 17 years. My daughter will be 18 in November. I am so much luckier than many others I know, and so far I haven’t had to have surgery for my auto immune condition.
Endometriosis can complicate the symptoms of Crohn’s and its diagnosis. Once I had had a lot of the endo removed, I definitely felt better, but many symptoms remained. I’m having an MRI soon, to determine if there are any remaining adhesions in my abdomen contributing to my ongoing symptoms.
Mine is not a straightforward case, so I am sharing it because I’m sure I’m not the only one with more than one diagnosis.
It is worth getting to the bottom of your symptoms. Even when the medical profession dismisses you. Even if you have received one diagnosis already and that diagnosis doesn’t entirely fit. You have to back yourself and be your own advocate. Doctors are only human, and some are ignorant.
You know your own body. Trust yourself.