Blog Post

Jess’s IBD Story

Posted: 22nd October 2022

Jess’s IBD Story
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. 
– Emma 
– Wellard 
– Omnigon 
– 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 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  
Thank you


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