“Art is a wound turned into light” – Georges Braque
I was 21 when I was diagnosed with Crohn’s disease. I was at the age where I was just beginning my adult life. My life journey suddenly took me into a direction I wasn’t prepared for. I was an outgoing social person who suddenly had everything taken away. I had no control over my sickness.
For three years I battled with Crohn’s at its worst. I lost an extreme amount of weight from not being able to eat. Everything that was put in my mouth gave me agonizing stomach pain which then turned into extreme diarrhea. I was a prisoner in my own home. Having to go to the bathroom 20 plus times a day became my normal. But I could cope with the diarrhea, I could cope with the chronic tiredness, I could cope with the pain, I could cope with the joint pain that plagued my body, I could cope with the endless medication and the side effects it gave, but what I couldn’t cope with was the loneliness, the lack of control I felt I had over my life, and most of all, I couldn’t cope with not being the person I wanted to be.
After years of symptoms and trying medication to settle the Crohn’s, I formed an abscess on my large intestine which grew to the size of a football. I was taken in for emergency surgery. I was told when I wake up I will have a colostomy bag as there was probably too much damage to my bowel. I didn’t care. I just wanted everything to be fixed. I just wanted my life back. When I woke up I remember the nurse saying ‘you didn’t need a bag’ I felt this was the first positive thing that had happened to me in years. I slowly recovered from the surgery. My body was so sick (before having the surgery), and the abscess had been slowly leaking poison into my body, so my recovery was very slow.
For the next few years, I suffered from bowel obstructions due to the scarring in my bowel. I was placed in the hospital for a week, given IV medication and fluids, had a nasogastric tube inserted. The the pain and symptoms would pass. My body started to heal. My symptoms of Crohn’s started to stop. I stopped all the medication, I stopped worrying about leaving the house in case I had chronic diarrhea, I had no pain, I had my life back!
For 14 years I lived as if I didn’t have Crohn’s. I knew the monster was being dormant in my body, but I lived like it wasn’t there. I met the love of my life and started a family. I became a mother to 5 children and started working full time. My life was extremely busy and I used that excuse not to look after myself. My diet consisted of coffee all day and the take out food at night. I would read and research different diets that people had success with to manage their Crohn’s. I knew all the right things to do and eat, but my attitude always was ‘I’ll start tomorrow,’ but that tomorrow never came. I knew I was a ticking time bomb, and if I didn’t change my lifestyle soon I would pay the price. But I always had an excuse. I started to destress my life by painting. I had always been creative and a free spirit. I started to create art and found it was a way to emerge into emerge into a world where I could express who I was and who I wanted to be.
Art became who I was and I finally found something I was passionate about and made me feel free. I felt this was my way of doing something right for my body and mind, a way to destress from the hectic life I was living. I continued to research different diets and lifestyles to heal my body. But that research continued to only live in my mind and didn’t make it into my day to day life. My love of art and creating became my passion. I felt my mind and soul healing and it had a calming effect on my life.
Then one day late 2015 I ate breakfast, and within 5 minutes I had diarrhea. That one day turned into a daily occurrence. Then the pain started. I pretended it wasn’t there. I thought, if I could ignore it, it will go away. But my ability to ignore it became harder and harder. I started to take days off work, and started to have to cancel my plans with my friends and family. But I still ignored it and didn’t want to face it. I was too busy to deal with sickness. I continued with my art as a way to escape what life was about to throw at me.
The day I knew the Crohn’s had awakened was the day I couldn’t wear jeans. Wearing anything tight around my stomach was agony. I knew the Crohn’s was back and I knew I needed to do something about it. I went once again to my GP who told me straight ‘If you don’t deal with this now you will do no good to anyone’ she told me. I thought of my kids and I thought of my husband. I needed to face this. My GP sent me to the ER. They straight away admitted me to the hospital and started all the tests. The MRI showed I had 30cms of my bowel affected by active Crohn’s. I also had small perforations of the bowel. I could no longer ignore it. I was in the hospital for a week that time, then discharged for a week and back in for 10 days. I was put on a high dose of steroids and started many long term medication that had success treating Crohn’s. But the side effects from these medications are horrendous. I suffer from major tremors, my hair is falling out, major weight gain, insomnia, bad skin, extreme fatigue, low heart rate, painful joint pain in my hips, constant viruses, and my mental health was declining. I took long unpaid sick leave from work.
Once again I was faced with everything being taken away from me. But this time I was a Mother, a wife and I had responsibilities that I never had when I was first diagnosed with Crohn’s. The feeling of lack of control is one of the hardest things I find to deal with. I learned very quickly I can only take it one day at a time, because how I feel today may not be how I will feel tomorrow. My home life quickly adapted to me being sick. My husband and children quickly learned that they couldn’t rely on me anymore. They all stepped up and helped out in their own ways. Cuddles on the couch with me quickly became our way of making things better.
I started declining in my mental state. Working in mental health I already knew how quickly it would be for me to sink into depression. The feeling of loneliness is such a big part of this disease. I found only a small handful of family and friends really understood what I was going through and supported me. It is very easy to become let down and hurt by people when dealing with any chronic illness. Most people didn’t understand how sick I was, or just assumed I was better. Soon the invites, phone calls, and text messages stopped. I started joining online social media support groups. I was amazed how much this helped. I gained so much knowledge on my disease and realized that the things I was experiencing, others were dealing with the same thing. Suddenly didn’t feel so alone.
I was able to work on my mental health. I started trying to understand my emotions and why I was feeling the way I was at the time. If I was feeling angry I would stop and focus on the real reason why I was feeling this way, most times anger equaled pain. When I was feeling lonely that was mostly because I had been in my bed all day, so I got up and laid on the couch around my family. So each negative emotion I felt, I tried to connect with a reason and then changed my situation. I also kept reminding myself that the medication I was taking is playing a major part in my thoughts and feelings.
I continued with my art, but my whole way of creating changed. Somedays I would only complete a background on canvas. My hands shook so much I was unable to do anything with detail. Somedays my art turned out dark and gloomy, other days it was bright and shiny. I realized art was a way to express every feeling I was going through. My art quickly became my therapy. It became my healing. Every piece of my art became an expression of my journey. Every single detail that is on a canvas tells a story of what and how I was feeling when I painted it. I started creating journals. I painted, drew and wrote every feeling down. It was healing to read back and see how far I had come. I started creating journals for others. I gave them away to friends and family for presents, it soon became my passion for others to heal through being creative.
I wish I could end my story saying I have gone back into remission and living life again, but I can’t. Each day is a battle for me. One day I will almost feel normal, and the next day I’m completely bedridden from pain and sickness. I’m taking many prescription medications to settle the Crohn’s. I struggle taking these as the side effects are sometimes worse than the Crohn’s symptoms. I’ve also changed my diet, and am putting into practice everything I have learned. I’m filling my body with probiotics, healing my gut with bone broth and eating clean and healthy foods. I’m taking small steps to heal myself with diet, but most of all I’m continuing with my art as this is my biggest self-healing I can do. I have found an amazing online community of people who experience what I do in their day to day lives. It’s so helpful to have people who truly understand the struggle we all face living with a chronic illness. Somedays I am able to support others, and then some days they are able to support me.
My future is still uncertain. I’m still yet to find the right medication that works for me. I’m still taking knowledge of different diets and lifestyles and making it work for me. Trying to find the right combination is trial and error, but I do know that everything I am doing will eventually have a positive impact on my body and mind and hopefully put me back into remission one day.