I was first diagnosed with Crohn’s disease about 8 years ago. My situation was not typical: I was older than most people are when they are first diagnosed, in my thirties, pregnant with my first child, and I had never experienced symptoms before. After a few months my symptoms cleared up on their own and I thought “Well, maybe it will never come back. Maybe the doctor was wrong and I never had it in the first place.” I had a lot to learn about Crohn’s disease and ways to go before I was finally able to accept my diagnosis.
Like so many people, I had heard about Crohn’s before, I knew of people who had it, and I had heard about all the horrible symptoms and side effects that are a result of this terrible disease. I didn’t want to believe that this was now my reality, that I could end up debilitated, unable to care for my baby, unable to work, in hospital, or worse. I did not want to accept that I had a chronic illness, that I was now a “sick” person who could require lifelong treatment.
Crohn’s disease is such a confusing illness. We still don’t know why people get it, and it manifests itself in hundreds of different ways. Every single person’s experience with Crohn’s disease is different. Some people experience chronic diarrhea while others experience extreme constipation and bowel blockages. Some people’s symptoms might flare up for a day and then clear up, while others might experience symptoms daily for months on end. Some people might have to avoid eating wheat or dairy, while others find the only thing that they can digest is bread. It is so difficult to find answers to our questions because the answers are different for every single person. There is not even any real consensus about what it means to be in a “flare.” When I joined Facebook groups for support, I would see so many people asking “am I in a flare?” or “Can I eat vegetables?” or “I’m feeling unwell, but do I need to go to the hospital?” There is so much variation from person to person. Sometimes I would have absolutely no symptoms at all but my doctor would tell me that my bowels were actually completely inflamed.
What I have learned over time is that everyone’s journey with Crohn’s Disease is unique. We all have to find the best treatment for ourselves and this can take years. In my own experience, my disease would flare up for months at a time, but then strangely, the symptoms would suddenly disappear overnight and I would feel absolutely fine for sometimes as long as years. While this is pretty fortunate in the grand scheme of things, my situation kept me in denial for a long time. Every time my symptoms would flare up I would try to just wait it out, and this ended up having a huge impact on my mental health and caused my body to go through unnecessary physical stress. It can also be difficult to find a community with other Crohn’s patients. Because my disease is considered mild, I felt guilty talking to other people whose experiences were so much worse. I felt that I shouldn’t complain or feel sorry for myself because I knew my symptoms could be so much more debilitating. I also worried about my symptoms worsening. The scarier stories I read, the more fearful I became. I basically tried to just bury my head in the sand and pretend that it wasn’t happening.
Over time I have come to terms with my situation. Though I feel fortunate that my disease is mild, I now understand that I still need to accept it, and seek treatment so that I can stay in remission. I initially resisted the idea of taking medication, I was fearful of the side effects and did not like the idea of requiring long term treatment. I have since tried many different avenues to treat my disease and have found a combination of diet and anti-inflammatory medication has worked for me. But is has been a journey. Along the way I have seen multiple doctors, specialists and naturopaths. I have tried different supplements, diets and vitamins. I have had five colonoscopies, six iron infusions and monthly blood tests. I have been poked and prodded in every way imaginable. It has taken me years to get to remission, and every day I wonder, will it come back tomorrow? Will what I am doing keep working?
Unfortunately, the “what if” worry is still with me even though I am fortunate enough to feel healthy. But that is a part of this disease and it is a part of life. All we can do is our best to find a way to live with it. I know for many sufferers of this disease, their worries are so much worse. Their suffering is so much worse. I hope with all my heart that one day a cure for this disease and for all auto immune diseases will be found. Until that day I wish everyone good luck on their journey.