Hi, I am Jess and I have an ileostomy
My Romi the stomi was attached to my tum and it replaced my bum on the 13th of July 2021 This is the start.
I still remember the moment vividly when I walked into Brent’s clinic – Brent is my amazing gastroenterologist who is based In Launceston – Tasmania, who I met 3 years ago,
Initially Brent wanted to make his own diagnosis of me, so he gave me a colonoscopy and diagnosed me with fistulating Crohn’s disease.
The information I had spoken to him about on our first meet about previous diagnosis given to me from gastroenterologists in Brisbane, (which I never had a confirmed diagnosis as such) there were always discussions from doctors as they were unsure exactly with my ever-changing symptoms, (a complex individual I am) Ulcerative colitis to start with, then Crohn’s to now understanding what was really occurring within me after so many years. This was a relief.
I’d had so many procedures on perianal fistulas, almost having vaginal fistulas and close to sepsis many times over, this diagnosis made total sense to me, I’d lost count to how many procedures but it’s very close to 100, if not just over, a
never ending array of drains and setons inserted into my bottom, the pain was horrific with never ending discomfort physically and sometimes mentally.
I knew as I sat in front of Brent that he was about to discuss with me something that I didn’t want to hear, information I knew I was about to be told that had been coming for years, talked about on and off, and a procedure that I was always so opposed to the idea of having.
Jess, he said to me, It’s time
I had run out of options, my medications weren’t working, and my body had built up a tolerance to all the drugs for well over a decade,
I really needed to prepare myself for having the surgery, which was call laparoscopy pan procolectomy plus ileostomy, Brent told me I would have time to prepare for this.
I felt very numb and alone in that moment, I kept a brave face, but I was crying and, screaming inside
Mentally I knew I was about to face a very challenging time for myself, my mind started racing and thinking about what this meant for me and my body.
It’s not like it was a shock, I knew that one day this was going to happen, just when, I still didn’t want to accept it.
The pain and the hellish moments my fistulating Crohn’s had put me through over the years and still I was more concerned at the time about having a bag on my belly for life.
Never having the option to have this reversed. This was very hard for me to accept, and I knew the months ahead would be filled with hard truths but in turn would be a growth for me of a new kind.
I wanted this challenge,
Seems so silly now but in the moment, I had so many emotions running through my mind, mostly negative on myself.
I had so many moments where I felt unbelievable selfish, there are so many people way worse off than me, I told myself – pull your head in Jess, but my mind still wandered.
I am a very active person, love going to the beach, wearing a bikini, well I won’t be doing that ever again, I said to myself, I started researching swimwear and clothing to hide the bag and disguise it in any way possible, while still trying to feel like me, I am not going to feel confident, I won’t feel attractive, the negative thoughts unfortunately raced through my mind over and over.
Now knowing what I know that I had time to process this information which for many they do not get this luxury of having to plan, comprehend or even research for this procedure, I know after talking to so many people who have had this performed as an emergency operation that I was one lucky girl.
I did research about having an ileostomy and becoming an ostomate, I never reached out to anyone who had gone through the journey I was about to embark on, even though I was given names and told by people who knew others who had gone through this, and it had changed their lives in a positive way.
As I know everyone has different opinion and thoughts and at the time I wanted to stay as focused as possible and in my own zone, not let anyone in and sway my thoughts through the initial stages of accepting having an ileostomy
I was going to go through with this procedure and wanted to do this my way.
I had several people in the medical field tell me it was going to change my life for the better and I appreciated and respected this, they were most certainly right but at the time it is hard for me to process, when someone is telling you something they haven’t experienced for themselves.
On the 13th of July 2021 I arrived at St Vincent’s hospital feeling a whole world of emotions is one moment, I walked in the hospital alone as it was during Covid and I felt heavy, like I was just relishing these last moments of me as I knew it and thinking about what I would feel on the other side of waking up from theatre.
The nurses where lovely and encouraging, they have a job to do and are efficient and they are there to get the job done, I always talk a lot while nurses prep me and I’m waiting to be moved into theatre, I have always wondered if I talk while I’m anesthetised and If I did I what would I be saying, I have a chuckle to myself when I think about this.
Waking up from surgery I looked down and seen my new body part, to start with this was a shock to the system, seeing the bag and stoma as the initial bag is see-through, you can see everything. Extremely confronting after you wake even though you are aware of what you are about to see.
I believe their need’s to be more emphases for patients who are about to undergo this procedure so they can mentally prepare better.
The afternoon of my surgery the physio came round and told me that in the morning she will be around to see me so we can get me up standing, I then said I would like to walk, and she said not on the first day Jess
Come morning she arrived, Let’s get you up Jess,
I would really like to walk please – she laughed and new I would want to push this, I laughed and said, I’ve got this
And walk I did!
I was in hospital during Covid and spent a total of 3 weeks going in and out. Initially I was in there 16 days with needing a 2nd operation 9 days after my first.
I remember having this intense pain in my stomach while laying up in my hospital bed late into the evening, I rang the buzzer and told the nurse on duty that I was in extreme pain, they administered as many pain relief drugs they could, my medications were morphine, endone, palexia, nothing would numb the pain, They called a doctor in, he asked them to give me fentanyl but this only took the edge off, I knew something was wrong. I went for a MRI, and it looked that I could had a twist happening so the next morning I went back into theatre,
I ended up needing my stoma opening to be a little wider and David Clarke fix my pain and back into the gastro ward I went to recover.
My first time back to emergency.
I was at home and I just felt absolutely crap, my whole body just felt like it was shutting down, I didn’t want to go back to hospital as I was over it, so I rang David Clarks rooms and spoke to Stephanie (a nurse within his rooms ) I told her what I was feeling and she said, Jess – you need to come back in so we can look at you, I will ring emergency and let them know you are coming in so you won’t have any problems and they can
admit you straight away- when I arrived to emergency this did not happen, I was struggling to talk and could hardly stand, very hunched over, I told the nurse that approached me outside that Stephanie from David Clarks room had called ahead to notify them I was arriving to be admitted, and she said please wait outside as you can’t come in (Due to Covid) , She went back inside to have a look, I understand that she was following protocol, but I was not in a good way. On her return she said they didn’t know who I was and why I was there, still struggling to talk, but she asked me questions over and over, I said I’ve just had a massive operation and I was told to come here; she went back inside leaving me outside of emergency once again.
Returning for the 3rd time said to me do you understand this is a private emergency and you won’t be allowed in unless you pay the $500, wow really, I felt like a piece of shit. The treatment by this lady was uncalled for and in my words disrespectful, I felt like I just wanted to leave, I needed to get out of here, I don’t want to feel like this.
I said to her I know I must pay, let me pay and help me.
I never complain but I did, I would never want someone to feel like this under the circumstances.
I had also been a regular patient at the hosipatal.
I was readmitted twice through emergency after the initial 16 days, both times was for pain and dehydration, the second time Mum had called an ambulance and I spent the previous night awake in agony, lying in bed thinking what the hell I have I done, Have I made the wrong decision, is this ever going to help me, I tried to keep any fluid down but by morning the pain had worsened , I started thinking what could it be, a blockage maybe, I got up and had help to get in the shower, then the bath, maybe I did have a blockage, but from then on it only got worse, I started vomiting and then dry reaching, as I had nothing left in my stomach, I started blacking out.
I manage to come with enough to tell Mum I need help, Mum went into panic mode, I remember my daughter Everleigh whom is now 7, (was 6 at the time) telling her Nanny, Calm down Nanny, we need to call 000, Nanny call 000, My mum was going to call 911 (Funny now to hear this and how it went down)
My Daughter Evie was so calm, I remember being helped to get me on the bed as I was still going in and out of consciousness, I asked Mum to please take Evie away, I don’t want her to see me like this,
The ambulance arrived 30 min later, they tried to canulate but I think it took 6 times and then by the time we got down the stairs I knew the canula had ruptured and the morphine and Iv fluids were not going into my veins, I tried to tell them how much it was hurting but they wanted to wait to get me to hospital, I was having fluids and morphine for the 20 minutes it took to arrive at the hospital, but I knew it wasn’t going where it needed to go, My hand was so huge, I wanted to rip the canula out, but by the time we had arrived to hospital my hand was so swollen that the nurse in emergency got so upset with the state my hand was in, she got it out quickly and placed an ice pack and I was re-canulated immediately to start the fluids and pain relief
I would spend another few days in hospital.
I remember telling my Mum during recovery at home, I have made a mistake, I don’t want to live like this, I couldn’t hold a sentence together, A spoken word took every ounce of energy I had from my body,
One morning I woke up and told myself to get dressed, put on your best most favourite clothes and see how you feel – I felt wonderful, I new before having the procedure that I wanted to create something that I would be proud of and
be able to help other’s get through the tough times with my own journey of pain, trauma and growth.
It took me a solid month to recover to a semi normal state and then look out – I was coming back.
Liberated – On the 12th of September I went to my favourite gold coast bakery, how eating out had now changed for me, the thought of travelling 20 min in a car used to give me so much stress and anxiety, I never knew If I would make it anywhere without having an accident. I knew where every toilet was that I could access anytime I travelled, to go out and enjoy food and know it wouldn’t cause pain and be able to enjoy the moment had been a long 20 plus years. Sure no knew as I hid it very well, no one even knew I was sick unless I told them and then I definitely received a lots of looks of disbelief, you don’t look sick at all, – this was my favourite all time comment so I eventually decided to keep things hidden, you don’t want to explain and you certainly don’t want to see pity or the fact people couldn’t believe it – while you are quietly dying inside.
Gym and training – I remember one of the first thing’s I asked my surgeon David Clarke (once we decided on a date of moving forward with the operation) about was gym and lifting weights as this was something I did regularly and had built great body strength up consistently for the previous 4 years and I wanted to know if I would be able to lift like I was. He did tell me I may not be able to lift the weight I was previously but would be able to build still go to the gym and start slow, but Within 7 weeks I was back in the gym lifting and pushing the limits and exceeding what I had been told. I pushed to an 80kg squat and felt amazing. Jess was coming back
This time I felt like things would only keep getting better and was I right.
I felt my passion for life coming back, pain free and my mind was the clearest it had been in a very long time, I started Pilates for the first time in my life as I wanted to build my core back up quickly, I fell in love and signed up for the November challenge, I told myself as I signed up that I wanted to win this as it would be a great achievement after my surgery – I won it, this sparked a new fire within me.
I made some big life changes!
Intimacy – I have been intimate since having my ileostomy and this is in a new relationship which is profoundly special to me, but certainly added another dimension of scary, I remember looking online for underwear and thing’s to hold my bag down and to make me feel sexy about my new attachment and this I found and still to this day very challenging, there is not a lot out there for ladies with ostomies. I stressed about this but new I wanted and was going to be intimate very soon, I am lucky I have a man that makes me feel good and confident about myself and has a huge understanding of what I had been through.
Many people find accepting their ostomy/bag difficult, this is where stoma awareness and education needs to change and happen so more people can feel confident enough to display and own their bag if they choose to.
Body confidence is a huge part in acceptance of an Ostomy – speaking to so many I believe that we need to start education in our schooling systems about bodily fluids and add it into every school’s health programs to better understand and have acceptance of an everyday occurrence that happens to us all from our bodies.
Removing the stigma around talking about POO and WEE – I know before I went through my health issues, I was even embarrassed to speak about this, but why? It shouldn’t be embarrassing.
It’s something everyone does daily (most of the time) so why are so many disgusted by these words or topics? Another interesting conversation.
I remember my first Bag explosion, I had heard about these happening but didn’t experience one until about 12 weeks after the surgery, It was messy, not very fun at all but a learning experience with more to come, I remember waking up and touching my stomach as I could feel something running down my belly, I placed my hand on my bag and could feel wet sludge and was like “Oh no” I got out of bed and went into the bathroom and when I turned the light on had realised what a mess there was all over my abdomen and it had by this stage ran down my legs, and I had left a trail of shit literally on the carpet
and tiles, this was about 1am, so I got in the shower, threw away the underwear and top I had on took my bag off and placed everything in the bin as I didn’t want to deal with it and started the process of cleaning myself, literally shit everywhere.
I’ve since had 4 more bag leaks, 2 have been out and about and I never had a change on me but lucky both times I was 5 minutes from home.
The black Aurum bags – Jan introduced me to these amazing products and gave me the opportunity to trial these, they are so wonderful and really helped in a way to make me feel more confident and less like I have a medical device attached to my belly
I wear a midi and since using this I have felt a lot more confident; I found all the tan and skin-coloured bags where translucent and you could see the contents and it created a shadow, to start with I had no other option, I had seen black bags from other ostomates online and thought I would love this.
I have sensitive skin and do get irritation’s sometimes, this is interesting, but my current box of black bags has been irritating my skin a lot, not sure if the base place is slightly different but I notice it becomes into a melty consistency more than normal. I use the amazing Wellard manuka honey seals, brava adhesive removal spay and their skin barrier spray, I use a steroids ointment when I have a sever skin irritation, this can be blistering skin and I can almost feel my skin being eaten from under the base plate. I change my bag daily, I do this in the morning’s so I can take my bag off and let it air and shower, I love to let her breathe and it always makes my skin feel better and clears any irritation quickly, I can almost see the rash or redness dissipate before my very eyes.
The Queensland stoma association is amazing and ordering online is so easy and only a phone call away, the amazing staff and volunteers are knowledgably and caring.
Fast forward till now and wow, just wow, what a legend this Romi girl is, she has literally changed and saved my life, so many positives and I feel a huge weight had literally been taken from my body and mind.
Not going to lie as I still have tough times, and moments of doubt and still don’t have 100% true acceptance of her, but it will come, and I am working towards this every day.
To all the stoma nurses, doctors, surgeons, and volunteers to our loved ones and communities of people and support I have witnessed, all these people give us hope and are all heroes and inspiring others in their own way. I have so much respect for you all and what you have given me and people like me, we all have our own stories and journeys, we all must make tough decisions, sometimes you must take other people’s lives into our own hands to make decisions and I would say this would be extremely difficult decision to make for all the medical teams involved in this process.
We are all doing our best and deserve to be loved and supported the way we need, and I feel extremely lucky to be able to be here today to share my journey and to shed some light on how people feel going into their diagnosis to then going through their stoma journey, no one journey is the same.
– Jake and Danielle Abby
AND thank you for listening to me and allowing me to share “THIS IS ME” TO FINISH
In hospital I received a package from my dear friend Anna, she sent me so many beautiful gifts but one thing that changed me, it broke me down, tears flowing down my face, smart Whitty and much needed during this time,
An amazing piece of work by the very best, at a time that couldn’t be more relatable and compassionate to me.
I shared this with a few nurses while admitted at St Vincent’s and I would like to share this with you today to finish.
BYE BYE BUMHOLE –
Bye Bye Bum hole she said,
Too many times to the bathroom I have fled.
Too much pain and being so ill,
The drugs and the steroids, pill after pill
The surgeries, and the doctors every day of the week
Having to constantly worry about when you may leak
The ongoing exhaustion and fatigue
Still living life, this girl is in another league.
Despite all the challenges, she sets the bar high
She gets shit done oh watch her fly!
Bye Bye bumhole she said
These cheeks of mine no longer need to spread
Ready to live life without chronic pain
Hungry to chase my dreams over and over again
Sure, I will miss you bumhole, it will feel a little odd
But I can’t wait to see what I can achieve with a happy healthy bod
Not having to run off to take a poo
This is something a time poor girl could get used to
Seeing her bag for the first time, she sighed
Bye bye bumhole she cried
Getting used to this body and getting to know it again
This emotional turmoil continues, although will not in vain
The opportunity for health, what a feeling to seize
Her tummy felt warm and her heart at ease
Bye Bye bumhole, her body squealed with delight.
We are ready to give you comfort and no longer have to fight She will get used to living with her new bit of gear
Showing other’s what’s important and having no fear.
Bye Bye bumhole, her friend said with relief
You have put my loved one through so much grief.
I’m so glad you are gone and out of her way
Now please let her be kind to herself, she needs it today
Despite the agony, she never moans
No one would know she is living with bloody Crohn’s
Bye Bye bumhole she finally said with a smile
I’ve been waiting for this moment for quite awhile
A great man shared with me a piece of the series Afterlife on Netflix, season 3 episode 6 and 9 minutes 21 seconds in
Oh and there are Angels by the way, but they don’t have wing and live in clouds, they wear nurses uniforms, and work hard to pay the rent on their houses, some work for ch6arities because they can’t look the other way, some have 4 legs and bark, whatever they look like they all save lives, sometimes you bump into them like Lisa and Stan and you Marry them, I know Lisa and Stand aren’t angels now but they were, if you want to be an Angel, you need to do it when you alive, be good, do good things, introduce a nice woman to a lonely man, your my Angel