To counteract the poor sleep caused by EVERYTHiNG, I have decided to try and take control.

At the moment I am living between two Options –

• I fall asleep and get a good(ish) night sleep, I sleep too soundly and forget to deal with the stoma bag during the night and deal with the shit-uation that follows.
• I spend the night awake thinking about the possibility of the above.

I decide on my own third option –

• Set an alarm for every 3 hours and sleep in between. It sucks but is better than either option above and hopefully is only temporary while I get to to know how my body works again.

It works and I get more sleep than I have in many many weeks.

I wake up, not feeling grumpy or emotional, again for the first time in many many weeks.

Friday

My new buddy is delivered today today A bear named Buttony, along with the sweetest book explaining the stoma to children. I am excited to have a tea party with Jaxon to talk about it all.

Lana comes to visit 🥰 Loves the Lana!

She comes baring gifts of 1 million Yorkshire Tea bags and lots of coffee, biscuits, eggs from her chickens and McDonald’s 😂

She also has a special delivery of sweets from Sweden – thanks Frida 😘

Lisa calls, it’s on speaker phone and Jaxon pipes up to tell me that he has a present for me and l of course have one for him … not long after, Lisa and the little people appear. I explain to Jaxon that Vera would be leaving us tomorrow. He is disappointed, he quite likes the snot machine. So I give him a very high level overview of the operation and give him a little flash of my stoma bag and introduced him to Buttony Bear 🐻. We have a quick look at the special ‘A Friend Just Like Me’ book and He asks to take it home and promises to bring it back, when me, him and the bear have a tea party and then we can read it together.

Saturday

I wake up around 10:00am and get up with time to drink tea before Nurse Donna appears to try and defeat me once more (spoilers, she did not!) Today we say goodbye to Vera 👋, it was a fond farewell, she has done a great job moving things along but cannot be my companion forever … do you know how long it took to l congeeedbbbbe – clearly fell asleep here. Who even knows what I was going to say 😂

So I am now wireless 🥳 cousin Hannah comes for a visit and keeps the flower game within the house strong 🥰 and we sit in the garden chatting and somehow the whole afternoon has evaporated!

Sunday

Here comes Donna – Donna is now my favourite nurse and my District Nurse visits have gone from every 3 days to everyday. Donna gives me a call 30mins before she gets here to give me a heads up and to allow me bring Maurice to the party at the right time 😬

I must have a high pain threshold – every-time someone is all apologetic, ‘I’m so sorry’, ‘this is going to hurt but I will be quick’, ‘are you ok?’ – I close my eyes and don’t feel anything, I literally go some where else but also I have been lucky to not feel very much after the horror of any dressings being removed – but now I insist they use the adhesive remover spray from my stoma kit so I am skipping that pain too 😉

I mean to be fair, I went over a month with a perforated bowel before someone saw fit to fix it 😂 I think I am pretty tough!

Breakfast then ‘I will get dressed in a minute’ … down an Insta Rabbit hole I go and resurface about an hour later … it will still be another 2/3 hours before I am actually washed and dressed … again – thanks to Instagram 😂

Outside and find my shaded spot in the garden (ginger!) two books, a hat and a bottle of water – ready to go …

I do not open either book.

😂 Even now, I am on the sofa ‘reading’ but writing this instead! Now I am doubley distracted as there is a tv program on about Motor Homes – this guy has converted a double decker bus into an RV to travel the US for 2 years! #TheDream 🤣

Instead of reading in the garden, I became distracted … by Instagram once more 😂 This time I was being creative.

One thing that has been a surprise positive in this whole shitty situation, is the number of people who have reached out and said ‘me too’ or relate as they or someone they love has been through something similar. Which I thought was weird as the first few weeks, I thought in Stoma land was me, my uncle and a friend of mine – it turns out, it is one of those secret things people don’t talk about … ok.

For me, I take the saying misery loves company to heart 😂 I blame my workplace Axis Communications for this! I suffer with anxiety from time to time and I remember not long after I had joined the company having a really rough day and not wanting to really own it or vocalise what was going on. I had a really horrible drive to work, full of dread and feeling sick. Funny how they say ‘the weight of the world on your shoulders’ when anybody who sufferers with anxiety knows it actually sits on your chest! At some point that morning, my lovely Lana asked me if I was ok, and I was comfortable enough to answer truthfully, and the response ‘oh, I suffer too!’ Over time, other people join the conversation and all I can here is ‘me too’ being echoed around the company and thinking, why are we all doing this on our own?! It feels horrible but less so knowing you are not some weirdo on your own! From then on I spoke openly about it. If I was having a high anxiety day, if I needed support or just to talk – I would say so.

So when I was diagnosed with Crohn’s, had a bowel perforation and sepsis that nearly killed me, it never occurred to me to be embarrassed. I didn’t want to deal with it for the first few days, not through embarrassment though. So when family started trying to understand from me, what I wanted to tell people about where I was, what had happened and mostly how I was doing, I had already decided to start this blog and decided to just tell my story, my way.

When I decided to do the blog, I was basically telling the world that I would be open and honest – there are some gorey details along the way that I do not necessarily go into huge amounts of detail about … maybe I will one day … but please feel free to ask me anything 🤷‍♀️ With that honesty in mind, I decided early on, while I was still in hospital that I would do the below reel, I knew what it would look like and the message I wanted to put out.

I was in hospital, listening to Louise’s Spotify because I was enjoying different playlists to those on mine, and there was one line in one song that kept making me smile and giving me a boost of energy ‘I’m Sick but I’m Pretty – Yeaaah’ Alanis Morissette – One Hand in my Pocket – so that had to be the song to use in my little Insta Reel. 👇

View this post on Instagram

A post shared by Leanne McC Blog (@leannesvscrohns_journey)

After creating the two videos, I am tired and grumpy and back to my default position of emotional. This is how quickly these things happen … happy to sad and then back again. Light to Dark. Always tired but cannot get the sleep! It’s exhausting! 🙁

Also – Hannah visiting on Saturday will be blamed for the sunburn I experienced on the top of my legs during the 36 seconds I spent in the sun today as she came round to visit with banging purple hair and brilliantly tanned legs – now the hair is a sensitive subject that I can do very little about right now but maybe I could get a bit of colour on my pastey chicken legs while life is at a standstill … the answer is no, gingers should stay in the shade!

Tomorrow’s plan … read the books I tried and failed to read today. Plus I will spend some time going through some of the samples that I have received, different stoma bags and products.

… or I may end up simply on Instagram again 😬

🌹