My unwilling journey with Crohn’s Disease

Adapting to Home 🏡 Day 1 = Happy

Day 1 – Wednesday

… A bloody good nights sleep! No beeps, no lights, no blood pressures, no screaming, nobody trying to find ‘the front door’ 🥰

Comfy town!

Morning

Boring 🥰 Just how I hoped it would be.

Woke up around 07:30am feeling very happy and snuggly in the spare room (my bed is far too low for me to get in and out of) … in modern times this has been my home office but the desk and everything has been moved out for the moment to make it nice for me now. It looks good to me 🥰.

Medication taken, laze on the bed for a while. Start looking at the two books I told myself I would start when I got home … I knew that the in the hospital I would not have the dedication to them … on the left is a 6 minute diary as recommended and gifted by Kelly B ❤️ and the right is a Foodmap food log book from my McSibling Louise.

I have started the food log and am in the process of doing the pre reading for the 6 minute diary 😬 between many, many naps … I am incredibly snoozy still!

I love both. Both are going to be super helpful for me moving forward 🥰 The food log to help keep me healthy physically and the 6 minute diary to keep me healthy mentally and help me create a real balance going forward.

Afternoon

I venture into my bedroom that is currently filled with everything that was making the spare room my office and other items deemed in my way as I potter around in the post surgery world. I take a look through some of the gifts I have been sent and decide that tomorrow is the day I will go through them all and start my thank you cards.

Many things especially from early days are vaguely familiar but it is like opening a gift again 😂😬 Between mother and I, I think we remember who very kindly sent me what … I have been through a lot, give me a break!

One particular gift that went massively under rated at the time is from Lana … 🤣 … I remember this one from admission number one. Mum and Dad brought the gifts I had received from Axis Communications (work) – Harry Potter Pjs and a Beauty pamper box (Thank you Nicola, Claudia and Michaela they are great 😜) and from Lana – a lovely rose scented candle that I took at face value as being a lovely rose scented candle 🤣 but today I took it out of the box and realised there was more to it …

Me too babe, me too …

Washed and dressed and ready to tackle the stairs … (I now understand why Jenny the occupational therapist wanted me to March on the spot 😂 I take it all back) my legs are so dang heavy on the stairs – a couple of times and I am thought it would feel normal. But I am sure that is me rushing the process. At the moment it requires a build up and either mum or dad behind/ahead of me … in all honesty, if ‘I’ fall it just means ‘we’ fall but it’s the commitment they make to cushion my fall that I find touching 😂 I have mentioned this to them, Mum said nothing as if she would take the bullet, Dad was honest 😂 Let me know if you are going to fall so I can move out of the way, no point us both going down. I am my fathers daughter.

Downstairs, no casualties, resume the position on the sofa, mother makes me a sandwich and I can hear the little voice of an extra special little dude … he has a card for Auntie Leanne pronounced Auntie ‘Yan’ to take upstairs to where she is working – we video called earlier and he could see I was in the spare room by the wallpaper). He sounds delighted when told that a) I am not working today and b) I am in the living room. In he potters with his get well card that he sprinkled with Magic so I could come home from my sleep over at the doctors.

Awww … he has also made us a bracelet that looks remarkably like handcuffs … is he trying to prevent me from disappearing on him again?

Little boy and McSibling Lisa eat their lunch on the blanket on the floor while Millie rolls around on the piano matt. It has been so long, it is so nice to see the little people. Jaxon was very gentle with his cuddle and Millie held by Lisa comes to sit beside me so I can tickle her toes 😍

I start to chat to Jaxon about the things. We start with my stomach ‘snot’ tube 🤣 I cover my stoma (one thing at a time!) and show him the whole Vacuum dressing into the machine, I showed him on the video call but in person is a bit different. I tell you what, that 4 and a half year old is smart and has some good questions.

‘Does it hurt?’ – no

‘Will it bleed when you take the sucking one off?’ – No because it sits on my skin not in my skin, like this and I put my hand on his arm.

‘Can I see the snot again?’ – Sure

‘Can we take the snot out of the machine so we can look at it?’ – No sadly not, only the nurse gets to do that.

‘Do you have to go back to the hospital?’ – Yes but I shouldn’t need to stay. Just see the doctors in the day and then come home. Apart from one time a little way away where I will need to stay for a few days while they fix something else but we can help decide when.

Recycled photos but I show him the middle/right side of my sstomach and walk it through with him.
We talk about Vera Junior and he sees all the buttons and such. Very uninterested, but he would like to see the ‘snot’ again.

We move on to ambulances. He specifically asked McSibling Lisa if I went in an ambulance, but he asked during and in relation to the first admission which was a no so I brought it up with him to let him know that yes I did go in the ambulance the second time.

I told him how after I had seen him that day, I felt reaaaaaaally poorly, so I told Nanny who decided to all the doctor. Nanny explained my tummy ache to the doctor and he did, yes I think I should see Auntie Leanne as she does sound poorly so nanny called an ambulance. We talked about how quick the ambulance gets you to hospital and the sirens and how all the cars get out of the way and that the doctor was waiting to help me when I got to the hospital.

The only bit I didn’t talk to him about is the stoma, maybe because I was not ready to explain it to him yet and answer his questions. I tell myself it’s because I have given him a lot of information to process already. I will work on that one. I genuinely think it will make him a better human to understand it but it must be done right.

Door bell and Perry is at the door with a card and some flowers from him, Debbie and the family 💐 Debbie and Perry are like the best Aunt and Uncle we are not actually related to 😂. Such a lovely surprise 🥰.

Lisa and the little people leave, I am feeling a bit drained, I consider a little nap but decide to start to read the 6 minute diary from Kelly and naturally wake up half hour or so later 😂

There is one bathroom in this house and it is upstairs 🙄 … so you need to be sure to leave in a timely fashion 🤣 and I need to move! Off I trot to the bathroom with father as wing man on the stairs.

As I go to the bathroom and realise that the moment has come. The moment I have been dreading. The inevitable. The first stoma change, completely unsupervised but this is fine because I am a strong independent woman who can do anything!😬 (Except stand for too long, do stairs alone or last an afternoon without a nap).

The aim with the two piece stoma is that it stays in place longer and should allow the Vera Junior the Vac machine on my stomach to do its job uninterrupted as they are geographically very close together. This is not always the case as one or the other is always going off script.

No gory details I promise!

I take a breath, I feel the panic, I remember the video McSibling Lisa just sent through of Jaxon singing … ‘Bring me a higher love, ooo’ and decide to join him and make it my theme tune. I am feeling panicked and I am feeling hot so … ‘Bring me a higher love, ooo’ and I crack on with it. I know what to do, I just need to do it … ‘Bring me a higher love, ooo’, in the hospital you are taught this in bed as I assume most are recovering from surgeries like mine and it’s the best way to get going, ‘Bring me a higher love, ooo’ but on Insta people are making it look so much easier stood up, I sit down for removal of old, ‘Bring me a higher love, ooo’ but stand up to replace the new one, ‘Bring me a higher love, ooo’. I double check and everything looks and feels good.

‘BRING ME A HIGHER LOVE … OOO’

Triumph! 🥳🤩🥳

I swagger out of the bathroom like I just won gold at the Olympics 😂 Inform the parentals of my victories before updating the two people in my phone book who would get it. My uncle and my friend Sheeran – stoma alumni.

I sat a the kitchen table for dinner and then the first real struggle of really wanting to go for a post dinner cigarette in the garden 🙈🚬 … I decide that if I still want it in an hour I will have it … by an hour later I have forgotten about it! 🥰

Minor snooze on the sofa and then bed. I could not get comfortable and had a very disrupted nights sleep… ☹️

Posted

in

by

Leanne Rose

Tags:

Comments

Leave a comment

Design a site like this with WordPress.com
Get started