Being discharged from hospital on the Friday was the happiest I had felt in a long time. 🥰
The Sunday the world changed fast.
On the Friday during discharge chat, the Doctor had gone into more detail about Crohn’s and drew me the below diagram of my bowel and how part of it was inflamed and narrowed and this was the part that had perforated etc … so now my brain has gone ‘Oh shit! You need to be careful using the toilet’ etc etc.
I went to bed on Saturday night feeling uncomfortable, in my brain I just needed to go to the toilet but was now inside my own head. I took a breath … I have been using Headspace a lot whilst on the hospital, working on my mental health and simply relaxing my body as much as possible. Tension in my body is the last thing my squished up bowel needs to contend with. I have a cup of tea, a glass of milk, an extra cigarette … all the things that usually help me along my way.
No joy but no pressure. All is calm 😌
I wake up early ish, around 06:30 to try and stay in the hospital rhythm of antibiotics, with and without food versions, painkillers, steroids but not too close to antibiotics but close enough to food … there is so many different medicines and tablets to remember the rules of.
So 06:30 antibiotic number one, to be taken twice a day, no food, along with paracetamol and liquid morphine. Easy enough to do from bed and go back to sleep while pain killers are setting in.
By 07:30 pain killers have not yet taken a hold as they usually would have and it is time to get up. There is no rush because we are calm, luckily as getting out of bed for example was taking longer than expected so I decided it was time to call for my Mum to give me a hand.
Breakfast time = 1 slice of toast. I am still aware that I have not been to the bathroom and my stomach is feeling a little hard.
I need to eat to take medications but my brain is concerned about piling food on top of food on top of food … I have a diagram of where my difficulties lay and I cannot shake this off. I have a cup of tea, a cigarette and a gentle walk around the garden to see if I cannot help myself out. ☕️+🚬+🚶♀️=💩
I have now checked multiple times but there is no meditation available on Headspace to refer to for constipation … there is literally something for everything else! I giggle at the silliness, constipation is other people issues – not Leanne issues 😂.
All is calm.
I head to the sofa for a quick power snooze. I have not seen either of my sisters since going into hospital 10 days before and am aware I look horrific with gross hair and generally horribleness … I have no will power for a shower for them but I can try not to fall asleep!
Lou appears first, anyone want anything from Costa? Actually yes but I will stick with no. Let’s be sensible. Lisa then appears with her little familam, James, and little ones Jaxon and Millie.
I talk them all through my adventurous week, Jaxon (4.5) is still tickled that I am having a sleepover with the doctors and that they gave me medicine in my arm and not my mouth! Lisa is off on holiday for 2 weeks from the next day and Lou’s is away for a hen do for a few days, I have all my nice new clothes that I bought ahead of our work Dublin trip so decide to share the love and see if I can be helpful 🙄 they negotiate who is borrowing what for which holiday. Lou gets to borrow the new straw hat and Lisa takes the older floppy hat (best choice for both of them)… and so it continues until it is time for Lou to collect her own little family for a Fathers Day lunch at the Golf Club.
I have more shorts for Lisa to try and so we go upstairs and I sit on my bed and just point where she needs to look.
It is approx 13:00 and it occurs to me that I cannot remember the last time I passed urine either. I go to the bathroom and pace a little, nope nothing … what does this mean? What does any of this mean? Who do I call? Did they give me a number? My brain is beginning to panic.
Just breathe.
I need to just chill the F Train out.
Lou has gone, Lisa’s and her crew is leaving, let’s just calm and not get inside my head!.
I need to calmly think this all through. But from where? Bed or bathroom. I aim for bathroom then I get hot, so hot. I take all my clothes off and sit on the toilet spraying myself with cold water. My body is screaming that it needs to go to the bathroom but cannot like the feeling if a Bladder infection but through out!
‘Bye Auntie Yan!’ shouts Jaxon from the bottom of the stairs. ‘Bye Jaxon, be a good boy!’‘Bye Mummy, bye Daddy, bye Millie’ … ‘Are you not coming down?’ … ‘Nope.’
Odd answer and is noted as such by all and no further questions asked.
All my bodily functions feel like they are in the open wide position which is exhausting my whole body, my bladder is open as though I will wee immediately and my bowels are in the same ‘Open position’.
I know instinctively that I need to relax, just relax everything and get some level of control but the question is how. I keep looking at the floor but do not want to cause alarm to mum/dad finding me naked with my hot skin against the cold bathroom floor.
Fuck it.
Mum is never far away and is with me now (as always, my parents are fucking super hero’s!) please call 111 Mum and let’s see what we can find out. Morphine is dehydrating, is this all linked? Mum is on the phone all ready navigating 111 whilst shouting instructions down to my dad about food and drinks bring me … to my throne – the toilet where so much and so little is happening.
Nah, changed my mind, I want to lie on my bed so off I go, mother a few paces behind. Everything can not remain in the ‘on position’ I need to take control. I climb onto my bed and my pain level shoots from a 4 of extreme discomfort to an 87, something is wrong!! I shout to mum to stop, I need an ambulance not 111, I need help right now and am terrified. 111 lady has almost finished her questionnaire, she must finish her questionnaire to do her part but I know something is very wrong, I need an ambulance. Hang up.
Mum hangs up and dials 999 at 14:19
Ambulance please!
She Explains with my input on the perforation. Mum keeps correcting herself with my terms, I don’t know if they are correct or not. We mention newly diagnosed Crohn’s, the long hospital stay, I suggest my theory of constipation and immediately regret it. Does that sound stupid now, in pain because of constipation so calls ambulance!?
SEPSIS!
Tell them that was the the original issue, so many antibiotics, over 10 days to get this damn infection and it seems just one day oral vs IV seems to be too many! That’s it, we have her attention properly now.
Approx 14.5 hours current wait time for ambulance. But call back, everytime anything changes or get her to A&E yourself
How long? I have watched enough Ambulance on BBC to know that it sucks and the limited resources mean that yes it is likely to be that long. When they are having to make these big calls, on who they can help and who should be prioritised first – this is one of those times in my life where I genuinely wish I did not pay such close attention to things such as the NHS. Ignorance would have been bliss.
111 are back on the phone, do you want to finish your survey … brain is slowing and thinking, instead of just panicking. Mum please finish the survey. Maybe this will put me higher on the ambulance list.
I am on the wooden floor now, rocking back and forwards in a snail like position just trying not to cook from the inside out! The cold wood on my skin is amazing. There is no other way to describe it! But the pain is building and I can’t stop it! What I thought was a 10 for pain I have long since surpassed.
Mum calls the ambulance back and is told to wait for a call back for a telephone triage. We should expect a call anytime from anytime now! Lisa and Louise are regular callers now for updates and told to keep the line free. Dad is in Dad mode, pottering with tea and waters and doing little jobs to keep his hands busy. He is messaging Uncle Owen and Auntie Dawn to see if they have any thoughts or similar experiences. They know about these things.
The ambulance calls and speaks to me. I cannot thread together a coherent thought. He is asking me questions about my bowel, my usual activities and what is different to what I can do today compared to yesterday. I am trying to find a comfortable place but this does not exist.
Mother takes control of the pain
Super mum does it again. I was discharged on the Friday with liquid Morphine and mum with approval from the ambulance has taken over administration of this for me and is keeping me well stocked up … ❤️
This allows me to zone in and out. I can feel mum sat on the end of my bed and want to do something for her. She can’t be comfortable but she says nothing. I don’t have the energy to speak in more than grunts. Occasionally she huffs, she is googling and messaging everyone she can think of and coming back with nothing. Mum needs the bathroom so calls down to Dad to come and watch me whilst she is gone. Dad comes on in but does not sit, he is going default Dad and trying to make me giggle. The whole situation is very scary but made so much worse watching the worry through their eyes! Also I need to eat to be able to take my latest antibiotics … I am saying no but who knows what the right call is!
Mum calls ambulance once again for an update – Ambulance strongly recommend that I get to A&E … I literally cannot sit up or roll over. If I did manage to somehow get up and dressed, somehow made it into someone’s car, where to now? How do I get into A&E? Regardless I am going to have to find the energy to a) yomp into A&E and b) start the whole A&E journey again. And in all honesty, this is the part that Mum and Dad really cannot help me with.
Dad as always has been in touch with Uncle Owen all day and Dawny has a suggestion that is Hospital/Owen safe and approved so Dad jumps in the car to check out this remedy. I down one of the sachets but Papa O says to do all 3 and everyone take cover in the morning!
It is getting dark out, the world is always a bit scarier in the dark.
Ambulance calls – eta 45mins
Thank god!! I start barking out orders for the basics of a hospital bag expecting an excursion not unlike the last. Just basics, charger, pjs, toothbrush, hairbrush …
I remind mum to message lovely Delia who like anyone would be shocked to see an ambulance outside the neighbours house.
And relax … the ambulance has arrived.
8.5 hours after calling 999 for the first time – Enter 3 paramedics into my bedroom … and we start from the beginning once more. Stomach pains for weeks, GP, 111, A&E, blood test, Crohn’s diagnosis, perforated bowel, pain, no urine out out, temperature.
I understand why they do this, but still … it makes me feel like my credibility is being questioned every time 😬 We even have imposter syndrome in emergencies.
I am hooked up to various different tests in my room now, an ECG is on the go, they are doing sugars etc to make sure. They point together at some or the results of my ECG while getting filled in by from my mum.
Yes, we think you need to come into A&E just to be on the safe side.
I just cry. The fear was that after all that time, paramedics would see on the same side as the Gaviscon pushers and tell me to see my GP in the morning!
My observation’s continues to back up the need for a ride in the ambulance, 39.5 temp, low blood pressure, quick pulse and heart rate. I am ready to go, you had me at ‘I’m here to help you!’
From my bedroom to stairs to outside navigating the cars parked in the garden, the paramedics team say that walking would be easier … super easy 🙄 So that’s what we would do, gripping into two of the medics arms to remain upright, they lead me from my room and down the stairs. Cassie Dog is in the dining room and is confused, Friend or Foe? So she gives a little bark/growl/cry with a head tilt.
As we get to the front door, it has been raining and the paramedics insist on being cruel to be kind and walk me to the ambulance with just my shorts and t shirt to help get my temperature down.
Mum reaches into the back and puts dads swag bag that he quickly threw together in and then steps back … what? Are you not coming? Looking from me to the paramedics Mum says she is not sure she is allowed. Thankfully the Paramedics confirm that yes, one person should be fine but not sure about two so it will be Mum or Dad.
No problem, Dad is 100% a drive himself there person anyway and have the flexibility that having the car with you gives to come and go and potter around. Hugs and kisses for Dad, see you shortly. Dad holds back a few minutes to see to Cassie and lock up the house etc.
Mum climbs into the ambulance and is seat-belted up. Ambulance man tells us not to be concerned but he is going to call ahead to allow them to set up for me. It just means that pain killers and what ever treatments can start asap. I am starting to zone back out but can hear mum talking away with them. She seems a bit calmer now that we are en route. Ambulance man once again tells us not to be concerned but he has been told to take me straight through to RESUS.
In we go … it all feels calmer this way, through the ambulance doors, I was terrified that we would have the ambulance equivalent of the wait in A&E from the other day, I really cannot wait much longer for pain killers!
Majors
RESUS advise the Paramedics that there is a space for us on Majors. I am glad, passing via RESUS was scary enough, at least I now don’t feel like I should be in there. 🫣
We move into a bay and the paramedics transfer me from one trolly to another, wish me the best of luck and tell me they will check in on me later.
(Some parts of this may be entirely made up in terms of order etc but I did double check with head office so if not in order, still accurate enough.)
As we wait in the bay, Mum calls Dad to explain where we are. Dad is already here. He slips into the bay and behind the curtain with his Parker on and hood up, going for incognito mode and failing miserably. We wait. The doctor comes around he spots Dad looking dodgy but says nothing, we recap the whole story from the beginning adding on the days excitement. They take bloods, tell me I will need to for a CT and an X-ray. I ask about pain killers and they say they will arrange Morphine asap. At this point Ma and Pa are informed that it is one relative per bay and that they will need to alternate between them. Mum takes the opportunity for a ‘bathroom break’ 🚬 while Dad continues to try and get a smile out of me. He is my Dad, he will always try 😌.
Eventually they realise this is silly and Daddy Bear heads home with mum constantly messaging what is going on.
There is no harder place to get painkillers than a hospital
Time is ticking on and I have had no painkillers … I call to the doctor and he said ‘Yes, Yes we are doing it now.’ And genuinely looked like he was on it. The final time I remember shouting out about this was at 02:30 specifically as we had arrived at the hospital just after 23:00, I called out to the nearest Doctor and said I have been here for 3 hours with no painkillers, my mum has my prescribed morphine in her bag, I will just take that! Other doctor is shocked, ‘You still haven’t had anything?! You must be in agony!’ And then followed my doctor and nurses around until they physically put it into my arm.
I am now pretty zoned out. Not asleep but hardcore resting, aware that I am in pain but not bothered by it. But very much aware of my poor mum sat in the worlds most uncomfortable chair. ‘Mum why don’t you go home?‘ ‘Let’s just wait and see what the doctor says …’
Doctor says surgery, CT shows that the perforation is worse than before, there for infection etc is through the roof. With a mix of a bowel leaking and Sepsis, it is clear that I am quite unwell. We wait for a bed to become available ready for first slot in theatre (it is around 04:30am and I read somewhere once, the most dangerous time for anyone to be treated by NHS is between 3am and 9am so waiting for the morning was good news to me 🤷♀️.)
Mother heads outside for a quick break and to call Dad to let him know what’s going down. Whilst she is gone, 2 porters appear and start moving me. I tell them no I can’t, my Mum isn’t here, I need to wait for her to come back … at this point my mum is everything – a) My Mum obviously but most importantly in this moment, b) My communicator, I cannot string a sentence together, I need my mum. They cannot wait for her, but she can catch up, the A&E doctor promises to show her where to go. But it is all ok because she has caught up before we have even got to the lift.
I repeat – There is no harder place to get painkillers than a hospital
We are taken to the Pre Surgery Ward to await the surgeon. It is around 05:00am and I really want Mum to go home and rest but I also want her to never leave me! I try to be unselfish and suggest again she goes home, she says no, she wants to speak to the surgeon. The sister on the ward wants mum to wait outside until the surgeon comes, that is also a no, I am once again writhing in pain as they cannot just continue A&E treatment, their own doctor must prescribe … Rude Leanne is appearing again, Mother is not going anywhere!
My pain is not just coming from my stomach, it is coming from every muscle in my body, muscles that are being forced to over compensate or behave in ways they are not accustomed to. For example, sitting up is not all torso and legs … it has become shoulders and arms too where I am needing to drag my way up and down my bed to sit/move. My shoulder muscles feel like they are ripping in two so now even with the morphine, comfort is just not coming. Then I realise I am not actually in a bed but on a trolley. Well that can’t help either! Short term at least, they will fix me up shortly.
Again the sister suggests my mum wait outside, we are now around 06:00am and Mum is beginning to have suggestions of her own. 😂 Namely, getting me some painkillers or Mum will start giving them to me from her handbag. Next thing I am wheeled along a few more bays and transferred to a bed, no one has left the ward and it seems there are plentiful beds so why have I been left on a trolley for so long? But at least along with this bed, we have drugs too!! 👌
From here on, there is a stream of young black female surgeons which I was not expecting, I imagined middle aged men which many of the consultants were but what felt like an influx of these super smart females was incredible! And made me feel better about what may or may not happen to me next. The surgery would be a massive violation and would be good to hear about it from a woman.
One by one female doctors came round to get me to sign forms to add more wristbands, to ask if I had dentures or allergies and a 1000 more questions. I am sure someone explained what the procedure they were going to do was, I just remember asking if they would make the pain stop and they said yes, well that is all I need to know and zoned out.
Next to appear was a friendly face but one that I was sure I didn’t know, my sister Louise’s, friend’s, sisters, best friend 🤪 – popped by to see if Mum was ok … a lot of chit chat happening during the anti social hours that night. But I was so pleased to see her, I knew Mum would phone Dad as soon as I started moving but it was good to know there was someone there already just for Mum. I believe she got Mum a coffee and just spoke a few kind words as I snoozed.
Then it was time to go. I don’t think I cried, I think I was too exhausted and in pain … but I may have. Mum was getting teary, I made her promise to call Dad immediately and go home and get some rest because I sure as hell will be asleep – hugs and kisses and instructions to give some to Dad too!
I was wheeled down to theatre, we waited outside for a few minutes and answered many of the same questions once more before heading in.
They were listening to a ColdPlay playlist in the theatre and the song we were on as I wheeled in was ‘Fix You’ – I liked this.
The last thing I remember as the anaesthetist was lowering the mask onto my face to put me to sleep was ‘Clocks’ was now playing. I stopped her hand for a second and just asked ‘Please don’t leave me with a Stoma.’
My unwilling journey with Crohn’s Disease 
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