Raising Awareness as a Woman With a Stoma
Today is international women’s day and I was kindly asked by Pelican if I could write a post about myself for this and reasons as to why I work as an ambassador and spend time raising awareness on living life with my constant companion, my stoma Bertha. For me as a person and as a woman, I don’t see myself as inspirational. I just see myself as a 35-year-old, mother, soon to be wife and friendly ambassador that likes to help people as I am more than aware of what it feels like to be isolated, scared to admit I had a stoma and that I may not be loved for having one.
With my first ileostomy back in 2009, there was not a social media presence like there is now and I know from heartbreaking experience that my stoma back then was taboo, it wasn’t allowed to be spoken about, it was fair game for sick jokes and sexual innuendo along with being told I was lucky to have a man who was willing to stay with me because quite frankly no other man would want me or look at me due to my stoma being gross along with an open wound. Looking back at how far I have come in the last 11 years I now laugh at that above statement because after leaving that individual, I found a few men that were in fact interested and didn’t bat an eyelid at my issues or run screaming for the hills when I mentioned the word Stoma. I started my Crohnsfighting Instagram in the October of 2016 more as an outlet rather than a raise an awareness page. In the last four years I have gone from posting small things to posting inspirational postings or as I like to call them the daily life moments of Potter thinking it was a good idea.
Both my daughter and my mother have had me in a state of awe during the whole covid pandemic. My mum is a carer and has been running her own business for the last 20 years. I am amazed and inspired by how she has kept a stiff upper lip, reduced contact with all of her children so she can keep her clients safe and covid free. Sadly my mum lost one client but that was due to a hospital admission and the client contracting Covid whilst admitted. She has managed to keep everyone as well as herself covid free for an entire year. Admittedly I think when this is all over she may have a nervous breakdown but that may well be more due to wedding planning… I have missed my mum so much but being older and wiser I have completely understood that by not seeing her for well over 6 months apart from Video calls was a necessity in seeing and helping with the bigger picture. The next state of Awe is my 11 year old daughter Maisie. She has spent a grand total of nine months learning from home. In this time she passed her Kent test, got into grammar school and has still managed to learn and not get behind with her education, admittedly she has had strops, paddies, full-on emotional outbursts but she has got through it. Alongside learning how to make videos for her artwork as extra side projects for school. It’s now at the point where I am thinking about paying her a nominal wage to edit my vlog content… She has amazed me with her resilience and attitude. I am inclined to believe that if she can survive being indoors with her parents for close to a year 24/7 then she will be fine starting secondary this September. Another shout out to my two best friends, Katie & Mandy, during this pandemic one has managed to create another business and make that a success whilst losing her main livelihood due to weddings being cancelled and Mandy whose son had stoma surgery right after he was born and managed to pass her University degree and apply for teaching positions whilst juggling a newborn child and teaching 3 days a week. You two ladies amaze me.
Why I decided to raise awareness
I think at the start of all of this I decided to do it more as an outlet and a diary to help my mental health. Then it turned into being a role model for my daughter and teaching her that in today’s life of social media influence that you don’t have to be perfect to live life. I’m trying to teach her to use her brains rather than rely on being picture-perfect. My daughter’s teachers are very complimentary of her writing work and she uses me in a few of her stories and Mummy is the person she aspires to be (rather cute but scary if there are two versions of me running around). The awareness I raise on social media is more of a true insight to what life is like for me. I don’t filter photos, I have journeyed through the same battles as most of you and I don’t sugar coat what life is like post stoma surgery, I am always open and honest and sometimes a little brutal. Stoma life is so taboo. It was only the other day I saw another ostomates post about a dating website and her being told she was disgusting and would never find love because and quote “she sxxxs into a bag”. I am incredibly lucky and have never been trolled but I occasionally get negative feedback as to the posts I put up, as I post up my bare stoma, which can be scary for some but it is the reality for all of us. It is literally this is me as I am posting. There is a part of me that wonders why people are so negative to something that in my personal opinion is quite small as to what makes up a person, yes we have a stoma but does that really define us as a person? Does this change us as a human? Does this give people free reign to drag another person down because of plain ignorance or narcissism? In this day of keyboard warriors I am hoping that myself and many an ostomate who is raising awareness will someday squash this taboo and prove we aren’t any less worthy because of that bag. I took part in the Charity pin up shoot for Purple Wings in March last year and stripped down to my underwear in a country park in Redditch. I did this to prove that I could and that we are still attractive and portray a good body image for those who are facing the same battles post-surgery.
What does stoma life mean for me?
Stoma life for me has improved my life, I can’t say this will happen for everyone but in my journey I have a greatly improved quality of life. I get to live life now instead of just existing, I get to enjoy things without having to wonder where the toilet is or living in constant pain due to the nature of my illness. I found love pre-stoma and have a great man who has seen me through two life changing surgerys both for myself and him. My daughter has her mummy back and we enjoy family time without having to worry mummy is going to have an accident.
My illness in general
For the best part, the stoma surgery is doing it’s best at keeping my Crohns in remission. It’s not to say I am completely cured as I now have a blanket Fibromyalgia and Chronic pain syndrome but I am listening to my physical therapist and rheumatologist and am building muscle and getting fit to another flare up does not make me bed bound for 3 months which is what happened when I stopped and slowed down during the first lockdown.
Being an ambassador/blogger for Pelican Healthcare
When I originally started blogging I never intended to get picked up by a company, the thought never crossed my mind. For me Pelican is the best fit. I absolutely love their bags and for me they changed my life and made stoma life livable. Pre pelican bags I suffered issues with sore skin and constant leaks. The last three years have been a whirlwind, from presentations to how a stoma product changed my life to presenting in front of people at ASCN which was really nerve wracking. It has been one incredible journey and it keeps on growing. Sat down writing this I still have to pinch myself that I get to write posts for a stoma based company and that people actually read my posts. I will always sing the praise of Vitamin E and the new ModaVi because if it changed my life it can help others in being ostomates that live life rather than just exist. That’s about it from me for International Women’s Day, in the words of Bridget, ‘YOU ARE PERFECT JUST THE WAY YOU ARE’.
Many thanks for reading Louise X
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