Yes it’s changed my life! My Son still has a mum! I have a fresh outlook! and will build upon it.
On the 7th of February 2016 with my body not wanting to do as it’s told. I went to the out of hours doctors knowing something wasn’t right.
All the usual symptoms together with, a lot of pulling, and pressure behind my ostomy. I was sent directly to hospital following examination by the doctor.
With the symptoms and scans showing my bowel was swollen and fully loaded, was told i would need emergency surgery so they could get in and find out what was happening. my fourth surgery in as many years at which time they also repaired my prolapse too.
After the surgery the pain was getting increasing and my body not coping at all the opposite of what was supposed to be resolved, a week after the operation i had to be helped to move into the chair and to the toilet was a marathon as i was too weak.
Again I suffered yet more weight loss becoming under weight, sickness and extremely malnourished as i couldn’t eat and struggled to stomach fluid’s, The doctors agreed that I would need an NJ feeding tube to feed directly to the top of the small bowel bypassing my stomach which we knew was not coping as it should.
After four weeks in hospital and no progress i was allowed home to see my son who i missed so much. On the third day of being home i collapsed, and a friend had to administer CPR under instructions of the Ambulance service as my respiratory efforts where failing, i woke in hospital again to be told what had happened.
Another feeding tube was inserted as my blood sugar had fallen below 3.5, drips, monitoring, and tests to find out what was going on, with my body too weak and my heart struggling to beat its normal tachycardiac rhythm I fell unconscious again. This was the start of a long week and a half of taking one – two unconscious episodes a day.
The more episodes i was having the more the Doctors were becoming worried something more major was happening. When coming out of the episodes i was unable to speak and my body numb. several hours after i would slowly be able to move my eyes and look at my surroundings, and say basic words that later would moved onto basic sentences, to be able too wiggle my fingers, from hand to arm then down through my body towards my toes and legs. The more this happened the more severe the effects got, my memory was also affected.
Due to this i was not allowed out of my room, had supervised toilet trips, monitored 24 hours and timed washes.
We also had to stop Thomas (my son) visiting as it was something that would impact on him seeing how ill his mummy was with pipes, tubes and monitors around me.
Again i had numerous tests including an MRI, EEG and CT Scans. Epilepsy was ruled out as to being the trigger, still on a feeding tube due to weight loss and undernourishment. I remained in hospital for a further four weeks. Finally being allowed home in April, I am still being closely monitored and working to put my life back together after another traumatic time.
Three years on, four surgeries later, Countless hospital admissions, Tests, Medications, And to me missed experiences and memories in life with my son!. I am now strong enough physically and emotionally to tell my story and help raise awareness to support other Ostomates who are struggling with the unseen battle that is life for some of us.
I am back working up to 25.5 hours a week, being able to look after my son full time, adventure days and trips out, socializing and volunteering for “Stomawise” a charity and support network for Ostomates.
My biggest goal is to raise awareness of this Invisible debilitating Illness that so many of us suffer (Yes we can look good on the outside but on the inside is a whole different story) and to eliminate the negative stigma given to Ostomys which save lives, mine being one!.
People don’t see my illness unless I’m in a bad way as you learn to wear a mask to enable you to continue, most people seem to think you’re not ill and make up what is happening as they don’t want to see it, they don’t want to understand the severity of it, and what suffering a life changing and debilitating illness can cause.
In my case not only to my life, but my son and the closest people around me.
My son has lived the past three years of his childhood without his only parent due to his mummy being either in hospital or in a bed and seeing that something horrible was happening to me.
For the good days when am able I ensure that we have as many good memories as possible. So he knows i have not left him and try to correct the upset and insecurities that my illness has inflected upon his childhood.
I am 26 and have and incurable illness and a ostomy for life… I did not choose this.. However i have it.
Yes my life has changed! And yes it’s a daily battle! But I am not prepared to let it destroy any more than necessary.
Uninformed people tend to bully and make you feel inadequate with an unseen illness, my ambition now is to raise awareness of these conditions and to inform the uninformed of how they can actually help those suffering this torture all over the UK with the same and worse conditions than me, every year across the UK 30,000 people are given a ostomy or diagnosed with an invisible illness and nobody knows who will be next.
It causes extra stress and highlighted emotions on top of the already daily battles in life. I hope that people reading this will take away the importance of it all of not to judge an unseen illness but to support it.
No matter how big you’re battle is!
Do not to give in!
Today is for living so live it with no regrets!
Please feel free to follow my story on here i will now be updating it on a regular basis
You can also to contact me by email.