Dealing with Crohn's, Iron Deficiency and Unpredictability

May 31 2021

Around the middle of 2020, I was diagnosed with Crohn’s disease.

For those of you who have never heard of Crohn’s or don’t know much about it, it’s essentially a chronic, inflammatory bowel disease that affects the lining of the digestive tract. The intensity and severity vary from person to person, but some of the signs and symptoms include abdominal pain and cramping, diarrhoea and irregular bowel movements, weight loss, anemia and fatigue. There is no ‘cure’ but it can be managed with medications.

In my case, I began to notice ongoing symptoms towards the later part of 2019, including bouts of horrible cramps after eating, bloating, constipation, diarrhoea, bleeding and highly irregular bowel movements. I went to see a gastroenterologist who got me to do some blood tests, as well as a faecal sample (I know, pretty gross) to test for the presence of elevated calprotectin (a protein) levels, which would indicate inflammation in the intestines. The normal range of calprotectin lies under 50μg/mg; my levels were over 100. I then had a colonoscopy and gastroscopy mid-way through 2020 and despite the preparation failing to properly clear out my bowels for the camera to be able to capture clear images of my digestive tract, the results, together with my high calprotectin levels and inflammatory markers, came back with a diagnosis of Crohn’s disease. Since then, I have been on daily medication which has for the most part kept my symptoms in check.

My incentive for writing this piece actually came after I had a really emotional and overwhelming day at the start of March. I had recently seen my gastroenterologist who had told me that my iron levels had dropped down again to borderline anemia. I was quite taken aback and confused as my last blood test a few months prior had come back with really good iron levels. I had not changed my diet and my menstrual cycle was still following a regular and fairly light pattern. We figured that the drop in iron was likely caused by a loss of blood due to anal fissures and bleeding during a bad flare-up of my Crohn’s in the week before my appointment, as well as inadequate intake of iron.

In the past when I have sporadically been low in iron, I have taken oral supplements, but as they can be quite constipating and I already experience regular bouts of constipation, my gastroenterologist did not want me to take them anymore. She booked me in for an iron infusion and warned me that I would probably start to feel fatigued and low in energy over the coming weeks until the infusion.

So coming back to that day in March, I had come home on a Monday morning from sleeping over at a friend’s after a night out. I walked inside and burst into tears. In my sleep-deprived and emotional state, I cried to my mum that I was feeling beyond lethargic and did not have the energy to do anything. I was overwhelmed and scared by such a foreign feeling of complete lethargy, that it sent me into absolute panic mode. I started stressing more and more over the prospect of not being able to meet my uni demands, maintain my newly established and highly enjoyable exercise routine or cope with my nannying, support work and other commitments.

After resting for a few hours and managing to watch a uni lecture, I showed up to my nannying job in the afternoon having planned to tell the mum I needed to step back for the time being. Funnily enough, after choking through a teary explanation of my health situation to her, I found myself in a much calmer frame of mind after talking everything out with her and hearing her responses. While probably unintentional, she had been able to validate my emotions, commend my honesty and vulnerability, reassure me of how lucky I am to live in a place with such good healthcare AND encourage me not to make hasty decisions about my commitments in a panicked state of mind.

I went home that evening feeling a million times better. I decided that the best way to go about the next few weeks was to prioritise my energy for uni, work and moderate exercise, while putting a temporary pause on intense gym sessions and a hectic social life. I think the reason that I was so hysterical prior to my conversation with the mum, was that I thought having to take a step back was a sign of weakness.

I have always been someone who prides myself on commitment and hardly ever missing a class, job, social plan etc. Even as a young child I never wanted to miss out on school, no matter how sick I was feeling. So naturally, I resented the fact that I, someone who breathes time management and is usually able to fit everything into a balanced schedule, was going to have to let go of some commitments for the time being while I was experiencing fatigue, dizziness and low energy. However, I soon caught myself out and recognised that these were maladaptive thoughts.

There are always going to be times in life that are unpredictable and out of our control. But what we can always control is the way we respond to these situations. I always believed that pushing through any kind of pain showed resilience and strength, but I have come to learn that in fact listening to our bodies and knowing when we need to be vulnerable and seek help shows more resilience and character strength. There is NOTHING wrong with needing to take more time for ourselves for the purpose of physical, mental or emotional recuperation. We would actually be doing ourselves and others a massive disservice by trying to stay on top of such a busy life routine when we are not functioning at our best. There is a certain level of self-care needed before we are able to effectively contribute to the lives of those around us.

One week later, after a bad spell of dizziness and a sleepless night spent running to and from the bathroom with another Crohn’s flare-up, I took it upon myself to clear my schedule for the day, reluctantly ignoring the voice in my head who gets angry when I forgo commitments. I was then able to move my iron infusion forward to the next day, instead of having to wait until the following week.

I wish I could say that I immediately fell back into my normal routine the day following the infusion, as I had wishfully hoped for, but needless to say, this was not the case. Even though I did feel a bit more energised and motivated, managed to get up early for support work and sit through my uni zooms, I still felt pretty drained by the afternoon; I actually ended up falling asleep instead of going for a run and working on an assignment, like I had wanted to. Naturally, this really frustrated me at first, but I had to keep reminding myself that every step is an achievement and I had already accomplished a lot during the day; I knew that there was no need to place extra pressure on myself to rush back into everything, as this would ultimately just cause me more stress and exhaustion, both physically and mentally.

I know that this has been a long piece, but the process of writing all of this and knowing I am sharing my story with you has really helped me to flesh out my own thoughts and the new lessons I have learned. I know that my Crohn’s will not be a linear trajectory. There will be times when I am barely symptomatic, but also times when I am feeling pretty crap, not to mention fluctuating iron levels, many a stool sample and probably more colonoscopies coming my way. And that’s OK. Managing my health condition is something I am going to have to deal with for the rest of my life and adapt to accordingly.

For those of you with any kind of underlying health condition, and even for those of you without, remember that first and foremost, we need to be kind to ourselves in the face of life’s inevitable unpredictability.