My journey to living a Perfectly Imperfect life.
Hi, I’m Krista, Marketing Manager and proud member of the Rich Girls Club. In June 2015 I was diagnosed with Colitis, an incurable, life long auto immune disease. It’s one of the two main forms of Inflammatory Bowel Disease ( IBD). The other being Chrons Disease. Some of the symptoms include extreme pain, increase in frequency and urgency to use the bathroom, fatigue, blood loss and joint pain only to name a few.
After my diagnosis, I was put under consultant care and learnt that although it’s incurable, it could be managed by medication and I could hope to have long periods of time, symptom free. This is known as remission. I was given some medication to take daily and would be reviewed again in 2 months. This was the beginning of my journey.
I persevered with the medication but my symptoms seemed to get worse, not better. I was embarrassed about the condition and told no one apart from my closest family and a few friends.
As time went on, I worked my way up the ladder of medications, each one being more serious and having their own side effects which at times could be difficult to manage. My life was a whirlwind of hospital appointments, scans, tests and medications but I still tried to be mama, wife, daughter, sister, friend and hold down a job but every day felt like a battle. I became good at hiding the pain and seriousness of my illness. I was so severely anaemic that I had to have regular iron infusions via IV. I tried to seek my own alternative therapies, changed my diet, you name I’ve tried it. In April 2017 I was approved to try azathirprione an immunosuppressive drug that I heard worked wonders and changed patients lives for the better, I was told of the side effects and the increased risk of lymphoma but I was excited at the prospects of remission as so far nothing else had worked and my life was truly becoming miserable. A short time into the drug, I started to experience pain unlike anything I had ever felt before. This time it was different. I began vomiting. I was delirious. I could barely walk and was screaming in pain. My husband bundled me up and rushed me to A&E. I was admitted straight away and quickly diagnosed with pancreatitis which was caused by the azathriprione. I was taken by ambulance to another hospital where they began to treat me. This was the first time I realised just how serious this disease could be. A few days in to my hospital stay, the pain from the pancreatitis was subsiding but I still couldn’t walk. I was 31 and couldn’t make my way to the toilet without the use of a zimmer frame, huge red bumps appeared under the skin of my legs, I was told this was erthema nodosum - rare but another side effect of colitis. I always tried to remain positive but my mood was starting to hit an all time low. I was discharged from hospital after a weeks stay with yet another dose of steroids, I hated those things but they were necessary. My case was escalated and they agreed to start me on another type of treatment, a biologic drug that was administered via IV. I would sit for a few hours on a fairly regular basis for my “loading dose” and if it worked, I would return every 8 weeks to be hooked up to the IV for a few hours and I could live my life in “remission”. Although it could take several months to see the full benefits, I could expect to see some improvements fairly quickly. Unfortunately I seen none. I got sicker and weaker very quickly. I had multiple operations in a short period of time and felt like I was living from one hospital admission to the other. In August 2017 it all came crashing down, I was admitted to hospital once again, iller than I had ever been. My family were beside themselves with worry. The Drs were struggling to get me stable. After a week of tests, IV antibiotics, scans and one final colonoscopy my consultant said the words I had dreaded to here - sub total coloctemy. A surgery to remove my bowel, my entire large intestines. My heart broke as I knew my life was about to change forever. I tried to refuse and believe me I can put up one hell of a fight but my surgeon explained and it was absolutely necessary, my colon was so severely inflamed and ulcered that it could perforate at any point, putting my life at risk. To be told you may die is the single most terrifying thing that anyone could ever say to me. I have two little girls who need their Mama.
I cried. I cried all the down to the operating theatre. I cried as they put me to sleep and I cried as they woke me up. My husband and my mum were waiting by my side. My recovery encountered many complications, I spent 10 nights on a high dependancy unit. I had patches for pain relief, morphine pumps, more tubes and wires than you could imagine. I couldn’t eat. I lost stones of weight. I had multiple incision wounds all over my stomach. My hair fell out. I was a mess. And to top it all off, I had a bag attached to my stomach that I had now live with. I spent almost a month in hospital, it gave me a lot of time to think. It changed me. This disease made me miss out on so much, weddings, celebrations, special occasions but I was determined that it wouldn't get the better of me. I learnt who I could really count on, what mattered and what didn't. Most importantly, I learnt that I could no longer hide this disease and that I shouldn’t be embarrassed. I hated how my new body looked but I was going to have to find away to like myself again. I knew I had to be strong. I dug deep and found a strength that I never knew I had. The day I walked out of that hospital I was different but I was learning to be ok with that. I have a stoma, I don’t always like it but it saved my life and for that I am forever thankful. With wonderful care from the team at the Western General Hospital, my family and friends I started my road to recovery. It’s a bumpy road, one I’m still walking and forever will. In a little over a year I had 10 general anaesthetics and I know in time I’ll face more. IBD is a life long battle. Like everyone, I have bad days but that’s ok. I'm learning how to cope with them, I became comfortable with being Perfectly Imperfect.
Many of us strive for perfection, we punish ourselves for things we can’t control but what is perfection anyway and who are we trying to portray it for? For a long time I felt broken but I’ve learnt the hard way that you can be beautifully broken, Perfectly Imperfect, beautiful in my flaws, an altogether a beautiful disaster. It’s about becoming comfortable in all aspects of your life. The good days and the bad. We all have battles and face difficulties but it’s how we choose to handle them that shape the outcome. It’s about learning to love all the things about you, maybe you don’t always like them but they are part of what makes you you and as the wonderful Dr Seuess wrote ‘Today you are You, that is Truer than true. There is no one alive who is Your than You”. I’ve learnt that I am strong. Stronger than I ever knew. I’m proud to wear my Perfectly Imperfect jumper for it’s the life I choose to live. Not perfect. Just Perfectly Imperfect.
Rich Girls Club are proud to support the Chrons and Colitis charity by donating £5 from every Perfectly Imperfect jumper sold directly to them. You can find out more about them here - https://www.crohnsandcolitis.org.uk