More About Me
How has life changed since your diagnosis?
I have been living with Crohn's Disease for nearly 2 decades. During that time my life has changed significantly, mostly in the manner in which I live my life and take care of myself to everything that happens when you are incapacitated through illness - loss of income, loss of family home, financial security, my family dynamics, my relationship status. The most distressing aspect of this disease and living with an incrementally disabling illness is the impact upon my family and daughter. Having always had a "sick" mummy, my daughter has accommodated me throughout much of her childhood and adolescence. Weekends spent sleeping or resting were quietly accepted as our normal due to the demands a working week had upon me, missed social events were frequent and she thoughtfully, made fewer demands than other children upon her parent. When critical illness hit me, my 13 year old child was effectively adrift, staying with family and friends during a long summer of admissions, scared if her mum would die and leave her "alone". This impacted my daughter drastically, her life changed overnight; we had to move in with a friend so I had that adult eye on me whilst I recovered from a critical period of acute illness, her school and friends changed after a long period of absence, she needed to be more independent and do all her sporting events with other girls parents, she had to help look after me. All this trauma affected our relationship and at a time when I was at my most vulnerable, my daughter felt a rage that caused us a great deal of pain, upset, and angst. Her adolescence was traumatized and made so much more challenging for her by my condition and as we slowly and gently ease our way back to a healthy and loving family unit, I see in greater detail, just how fundamentally her whole world view was shattered and I reckon, she will never feel that carefree ever again.
What are you most passionate about?
Upon my diagnosis, my GP told me in the most candid of ways that Crohn's Disease was a LifeLong Disease and that I would have to manage this disease from that day forward. In that appointment, he opened my eyes to questions I had never asked myself before with any real determination such as; "What is best for me?" or "what is my body telling me it needs?" and most importantly, "what makes me feel worse?". These questions have given me a deeper and self-sufficient sense of my health and taught me to take each day at a time and to put my needs above the demands of others - I learned how to say "no, not today"... or "that isn't good for me" and to follow up on carrying through the action that supports my internal knowledge and state of my condition. In that one appointment, with a doctor who understood the impact of a hidden illness, generally unknown and often debilitating in its long-term effects, he gave me the key to managing myself and not always having to react to the condition or be defeated by an outcome I hadn't expected. In that one appointment, my GP gave me the view that each and every day would be another opportunity to outsmart, outmaneuver and live alongside a troublesome condition that I have a lifetime to get to know. It is in the tiny everyday acts of self-care and self-love that my resilience and awesomeness has shone through and so, regardless of what the disease does, I know with every fiber of my being, I have a lifetime to live and a lifetime to learn.
What do you hope readers can learn from your health journey?
That in the darkest of times, with the loss of everything you hold dear, with failing health, you can and will have the opportunity to be your grandest and best self - and if no one sees it, write about it as only I know the magnitude of what I have overcome and I hope to be able to take some wisdom and benefit from the trial and share that with others.
Diagnosis
After my first pregnancy, I became sick with stomach issues and bleeding from my rectum. I attended my local GP who immediately recognized my symptoms and referred me to a gastroenterologist. I found out later that my GP's wife also has Crohn's Disease and for this unfortunate coincidence, I was diagnosed early into my symptoms and received information and health treatment and advice that has helped me stay as well as can be, regardless of the severity of my condition at any given time and over the last 2 decades. I was originally diagnosed with Terminal Ileum Crohns Disease in 2000 but following acute illness and stoma surgery in 2013, my diagnosis changed to Fistulating Crohns Disease.
Treatments
Various drug treatments including Azathioprine (I am now allergic to this drug), various supplementary drugs including calcium, iron tablets, and "stomach settlers". Predesterone to get me back on my feet following my first 2 admissions, an elephant-sized quantity of antibiotics-tablet and intravenously administered. Huge quantities of fluids and then potassium tablets, various other types of medications including antidepressants and anesthetics, pain medications, and medical food.
I had bowel surgery in 2013 which removed 30cms of my ileum and formed a right sided stoma. I had a refashioning surgery to increase the effectiveness and operation of my stoma. I had a series of admissions related to blood clots and required Warfarin for 6 months. Recently, my health has been concerned with the effects and advancement of perianal fistulas and for this, I have had 6 surgeries, 2 setons, numerous MR scans/CT scans, antibiotics, pain medications, and again anesthetic. I am hopeful about being infection-free so I can start a biologic treatment with the view to clearing the tracks running through my "seating" area.
In conjunction with Crohn's Disease, I have also had gynecological issues that increased the issues within my lower abdomen. Uterine Fibroids have had a significant and often overlooked impact on my condition and my overall health - since my Stoma surgery, my Gastro and Gynae doctors have worked in unison to address the issues with my sexual reproductive organ and I have had 6 months of hormone treatment to reduce the size of the fibroid, 2 surgeries to reduce and cut away as much of the fibroid as possible, a collapsed uterus and various antibiotics and pain meds and finally a Uterine Embolism which seems to have worked. In total, I have had 2 Uterine Fibroids - the first removed via surgery in 2012 and again, the second one eventually reduced to being unnoticed. Due to internal scarring after my bowel surgeries, the removal of the second fibroid became more complex as doctors are reluctant to open me up for anything less than life-threatening.
I had bowel surgery in 2013 which removed 30cms of my ileum and formed a right sided stoma. I had a refashioning surgery to increase the effectiveness and operation of my stoma. I had a series of admissions related to blood clots and required Warfarin for 6 months. Recently, my health has been concerned with the effects and advancement of perianal fistulas and for this, I have had 6 surgeries, 2 setons, numerous MR scans/CT scans, antibiotics, pain medications, and again anesthetic. I am hopeful about being infection-free so I can start a biologic treatment with the view to clearing the tracks running through my "seating" area.
In conjunction with Crohn's Disease, I have also had gynecological issues that increased the issues within my lower abdomen. Uterine Fibroids have had a significant and often overlooked impact on my condition and my overall health - since my Stoma surgery, my Gastro and Gynae doctors have worked in unison to address the issues with my sexual reproductive organ and I have had 6 months of hormone treatment to reduce the size of the fibroid, 2 surgeries to reduce and cut away as much of the fibroid as possible, a collapsed uterus and various antibiotics and pain meds and finally a Uterine Embolism which seems to have worked. In total, I have had 2 Uterine Fibroids - the first removed via surgery in 2012 and again, the second one eventually reduced to being unnoticed. Due to internal scarring after my bowel surgeries, the removal of the second fibroid became more complex as doctors are reluctant to open me up for anything less than life-threatening.
Samantha McHale
