Thursday
Nurses Nurse Nurses …
First nurse of the day is Monica the Stoma nurse. Where I used to see Lisa and Nav in the hospital, Monica and Debbie will be my out patient Nurses. My uncle also sees Debbie and tells me ‘she’s alright’ which is actually very high praise 🤣.
Monica checks my stoma for me and answers my questions …
- Spots of bleeding around from the stitches that attach my bowel to my skin – normal for a while yet I am told.
- Swelling of the stoma not settling as quickly as the rest of stomach – not a hernia, Monica is happy this is just swelling and will reduce in time.
- Angry red skin around the stoma is beginning to settle down – Monica is happy that changing from a 2 piece that is changed every other day, to the 1 piece that is changed every day will help to keep on top of the soreness as I will be able to clean and apply the barrier cream/moisturiser everyday.
The 1 piece that Monica suggests is a Large Hollister which is the same style I used in the hospital to start with, but I swear it is so big that thing needs wheels 🤣 Noooope! No thank you, not for me.
I have been doing my own research and now with some more information and the go ahead from Monica I will continue requesting samples and look for the best fit for me – literally and figuratively. (Samples arrive on Saturday.)
For anyone interested, I have included a video of a) the bag that I think I want b) how the bag is changed. For the more intrigued of you, it does show you what the stoma/bit of bowel in the stomach looks like 🤣
Please note, 99% bag changes made by me are remarkably less Disney … there is a lot of shouting, usually an amount of swearing and in times of immense pressure ‘Bring me a higher love, ooo!’ it is just how I roll. Also, in videos like this, I often wonder how many takes it took to get this video …
Fun fact – the stoma/bowel that is pulled to the outside of the stomach is prior to human control … basically once waste has passed through your bowel, it hits the muscles that tell us we need to go for a poo and then we have the control to chose whether to ‘release’ or not … as the stoma is before these muscles, there is no human control and that little bastard volcano can erupt at any given moment … and believe me the little fucker scientific wonder, will!
So basically, don’t expect this video from me, ever! 😂👇
Any recommendations for a soft, convex, drainable, medium, waterproof, non transparent little number would be gratefully appreciated 🥰
Next up is the District Nurse to check out my operation wound … nurses now come once a week as I have been deemed capable of managing my own wound and it is now ‘doing well.’
The swelling continues to go down … it could hurry up and go 🙄
The hole at the bottom is still open wound, within that wound are 3 deeper holes. Daily it needs to be flushed with saline, filled with a fancy gel and then a wound dressing applied.
Nurse is happy with how we are going and is happy to leave me to it … they will be back next week to review again. This will continue until it either heals or I see Mr Sagar on 7th September.
!! Questions I have not had an answer to yet … many questions actually 😂
- Where is my belly button? Do I have one? Will I have one? What’s going on? I am not the person who would be walking about with my tummy out but still forget everyone else, I want it to look somewhat normal for me.
- Will it stay lumpy bumpy or will it flatten out as the swelling continues to go down? The first 2 operations were emergency but in the same wound, so a re open rather than a second cut … but the 3rd, surely it could have been tidied then? 🤔
- How much would either of the above cost to fix?
As soon as both nurses have been and gone, I remove the newly installed suitcase from my abdomen and put the 2 piece style Poochi bag that I have now got used to back on 😂 I have until early next week to decide what I want to order to use for the next month – so I am 100% in sample mode to figure it out!
Adventure time … we are in the process of decorating the hallway and need a couple of bits from B&Q and I am coming too 🥳 Leaving the house is so exciting! I lasted about 10/15 minutes before seeking a perch but that’s good, progress is progress! 💪
After about 10 minutes of standing in the same spot, I’m getting over it all very quickly, I find a perch and then decide to wait in the car 😂 Most annoying is that B&Q used to have vending machines by the tills but don’t anymore and I am super thirsty!
* There was a vending machine right by the exit … £2.40 for a bottle of coke?! I ain’t that thirsty 😂
We get back around 2pm but I am spent 🤣 too much DIY fun for me! I potter around a bit aimlessly and then offer to ‘cook’ dinner – my cooking needs two ingredients, a phone and a debit card so KFC it is 😉
Top tip, KFC delivered at 5pm on a Thursday is amazing! 🍗🍟🥤
Friday
My morning is slow motion … I have intent but in reality I do nothing 😂 Everything I do takes a long time – motivation = zero. I think it’s around 14:00 by the time I am dressed. To be fair. Trying to find clothes that work with my new attachments AND I feel nice in is tough. Even down to bras, I have lost weight everywhere, I was born a larger cup size than I am today 😂
Today I have dressed myself as a balding Ancient Greek …
I then make the mistake of going onto Instagram … insta is usually a positive space for me, an inspiration … but not today. Today I see multiple posts but two particularly stood out to me …
1) a girl 4 weeks after her stoma op, getting ready to go out for dinner looking stunning, hair done, make up nice, cute little dress … my brain started in its usual insta inspired state of wow, look at her. Then it quickly turned into, why can’t I be doing that 😞 … my hair has big patches missing in the most obvious of places – on top, there is no hiding it, my skin is dry and flakey and all of my clothes are too big as I am skeletor.
2) a guy 5 weeks and going to the cinema … dude, if I could sit anywhere comfortably for that long I would be happy!! Jeeeez my bony arse would not be allowing for that! Plus, just to stay awake for that long would be huge!
I am 5 week post final op (I ended up having 3 operations in 2 weeks), and 7 weeks post the first operation and stoma day – 20th June. I am done, I want to look and feel normal and go and do some normal things 😬😬😬 After grumping for a little while I did appreciate that putting myself down and being hard on myself based on what other people are doing is just stupid … but it is human nature and so easy to do, I vow to try harder to concentrate on myself and not what others are doing!
I am tired and in lazy mode but I need something busy to do with my hands not my brain, I sit at the garden table in the shade and paint a couple of pieces of wood Blue ready to be used in the new hallway.
I chill for a while, have some dinner … bask in the glory that I can now eat dairy!! That part of my body that made me lactose intolerant has gone 🥰 Life is a cheese fest!!
At 8pm I decide to give myself a little win and me and dad take our 4 legged furry pal into the woods across the road ❤️ It was a quick walk for her and only 30 or so steps from my front door. It was so hot in the day, she has been cooped up more than she is used to and has been very good about it but as soon as there is a break in the heat, Springers Gotta Spring!
Saturday
Again slow … Again I am slow getting moving …
I had a long chat with Papa O about stoma life plus all the bastards (if you know, you know 😂). You wouldn’t ‘wish’ stoma life on anyone but it is bloody good to have company! People try and are doing an incredible job at not being grossed out by anything but unless you have walked a mile with my Poochi Handbag, you just do not know. This is where my Instagram obsession has come from #crohns 🤘
Come down stairs to boxes of samples … when you are released from the hospital with a stoma, you are released not really knowing what type of bag you will need. Your body is still settling into its new shape and then you and your life style … all these things help to determine what accessories you need.
My mate Mo*, I can only describe as living life on a hill … basically a swollen part of my stomach with a stoma at the top.
*… my stoma is called Mo. Several reasons. When it runs, it runs fast and when I change bags I refer to it as you Motherf****r – shorthand MOFO, shorter hand Mo. Also for any old school Eastenders fans, a stoma is not just ‘a size’ it changes size throughout the day so I have Big Mo and Little Mo.
So because of the shape of Mo and the surrounding skin, he needs a particular style of base that will fix itself to him/my skin securely … no but wants an insecure Ostomy bag – oh no!
The base that I am currently using of my fancy little two piece is pretty much it, it is mouldable to what it needs to attach to. Minimal issues, life is good (well 🤣 could be worse!)
I now have the options from Monica … let’s not rule anything out (but hell no!) and 3 other samples based on the base plate that Monica has recommended – soft convex … 🤔 Not sure about that one Monica …
These are the Pelican ModaVi which I was so sure that I wanted – the Thursday video … a Salts Confidence BE and a Coloplast Sensura Mio, all different options from different manufacturers … all are wrong and to quote ‘Meghan Trainer’ it is in fact all about the base … or the flange (😂🤣 Mutley laugh!) The base of all 3 options are huge and go straight over my still healing operation wound and are inflexible. They would work if my stoma was in a ditch, rather than on a hill … all 3 options are the same and none of them fit 😕 Maybe they will in the future when everything has returned to its final position but not today.
I will catch up with Monica this week, randomly I have just received another order of the two piece which I wasn’t expecting, this will see me another 4 weeks so there is no rush at all to find the one to move onto – this style is doing just fine.
Again, anyone with any suggestions please let me know!
Paddling pool is out … puppy dog is delighted!
I wrap up the day by getting ready for bed before putting on the movie ‘Unhinged’ 👈 Recomended BTW.
1st step is to change my Ostomy Bag … relatively stress free, there are still some red lumps and bumps around my stomach site but they are remarkably less sore now.
2nd step is to change my wound dressing … I get all of my medical supplies ready … gloves, saline, nugel and a new dressing … as soon as I take the old dressing off I am not sure … 🤔 I call for reinforcements in the shape of my dad, obviously, I cannot see very clearly from my angle – ‘what do you think?’ He isn’t sure … is it infected? Seems a bit gunky to me … obviously I am not cleaning it as well as the nurses are – even thinking the words are making me squirmish but I am not getting ‘in there’ 🤮 in the same way they would!
The district nurses are contactable 24/7 so I call and just ask what they think. The lady on the phone asked ‘is that Leanne?’ When I started talking, apparently I have a recognisable ‘chirpy tone’. It is about 10:15pm, she asks me to take my temperature and asks if I am well in myself, not feeling unwell in anyway … as I am fine, she suggests to book a nurse in for the next day and if I do feel unwell, call 111 or go to the hospital.
I then watch ‘Unhinged’ 😳 recommended if you like a gruesome murder! 🤣
As we watch Unhinged, a mouse casually saunters in through the patio window. Naturally I shout ‘there is a mouse in the house’ whilst moving a little too quickly to stand on the sofa. Papa McC locates a stick and goes on a mouse hunt, as he pokes a stick in the last seen area, and with that the mouse casually walks back out of the patio window … Dad shuts the door behind the cheeky little trespasser and with a shudder I climb back off of the sofa. That is the first mouse I have seen in/around the house, in the past I have seen a frog in the living room and a bird in the kitchen plus the foxes and bats that are regularly in/around the garden.
I think I was really brave about it! 💪 If it wasn’t for Drs orders to rest, I would have taken him out myself of course.
Sunday
Mum has a doctors appointment (yes on a Sunday!) so today I am left unattended as Dad takes her … before they go they make sure I am fed and watered, fill the kettle with exactly one cups worth of water because I am not allowed to lift more and put a splash of milk in a jug so I don’t have to lift the whole bottle 🤣
They are only gone about an hour and I did nothing different to what I would have done if they were here but hey, still a little milestone 🤣
I ask mum to go back to washing my hair in the sink … the shower head is too powerful (words I never thought I’d say!) and it feels too hard on my balding head and my flakey body!
The hair continues to fall out … everyday a brush full come out and even more with a hair wash. You can positive thoughts it as much as you like but soon enough I will be back in the world and back to work with hair that continues to thin and clothes that don’t sit right over my Stoma Mo. I have done EVERYTHING that has been asked of me, I stopped smoking and am sticking to the Low res/fibre diet as instructed, I am resting and not lifting and blah blah … life has been shit for 3 solid months … when will it let up?! FFS!! 🤬😭
The nurse came to look at my wound. She cleaned and dressed the area and seemed unworried. She has changed my visits to every other day once again so that they can keep a close eye on what it does next.
This nurse is really good, she takes the time to really talk to me and is a little worried about my anxiety levels – lol TBF it has been a rough couple of months! 🤣 She has ordered me a topper for my bed to make lying down less uncomfortable, hopefully this will improve my sleep and have a ripple effect into my mood and how I feel.
The final moment of note of the day is performed by Miss Cassie as per the below … she really can put on a show that little spaniel!
Monday
I wake up to a phone call from my nephew 😂 my sisters have been on Kelly Bs hen weekend, so with his mum having been away for the weekend and he is extra soppy today ❤️
We agree they should pop round for lunch.
I start moving to get ready for life when Lou messages me a voucher for Harry Potter studio tour for Friday … one cancelled ticket. It’s obvious really that she would still go as she got a ticket for her step son for Christmas also … but it just didn’t occur to me. As always, it doesn’t take much to set off and all I can think is the usual – life sucks, it’s not fair – I am readying myself for another week of everyone enjoying their summer, enjoying life and I am not.
I have been up and down since this saga began, I feel like I am constantly more down now as I am just fed up! I am bored, I am uncomfortable, I am frustrated and everytime I look ahead the universe is working against me.
Time is passing and the year is ticking by and I am sitting still … It is almost September and I remember in June saying ‘oh yea, it will be fine by September…’ will it? When will I get back to work? What will even be there when I get back, surely they would have figured everything out by now making me surplus to requirements now? I am supposed to be travelling to Sweden in October, will I? Can I? I won’t even be able to lift my own bag by then, I really want to go and I will do everything in my power to be there but what has actually been in my control so far and if I can’t even lift my bag … ? 🤷♀️
Lisa, Jaxon and Millie come round for lunch and we have ‘Burger Shop’ aka McDonald’s because the little boy has been so good.
I have made a point of having my bag in display and the Buttony Bear near by and Jaxon always comes in with a new question. ❤️
Todays question is about my button – where is it and can he see it? Today in not wearing an appropriate ‘piece’ for this but next time I will wear my see through bag and show him the whole shabang! Knowledge is power, if there is ever a kid in his class or anyone in his life with a stoma – this kid is going to understand enough to not be a dick about it!
He quickly moves on to helping nanny pick potatoes in the veg patch and offering to share his drink with Cassie 😂
They leave around 16:00ish and I love that kid but he is exhausting 🤣 as I sit and start typing, Alexa on my phone rings, it is Jaxon just checking in as he does. He learnt very young what ‘Alexa ring Auntie Yan’ does 🤣 When I was in hospital, I had the wound specialist looking at my stomachs, trying to figure out why the damn thing wasn’t healing and my phone kept ringing, ‘Do you need to get that?’ … ‘No it’s just my 4 year old nephew calling to say hi’ I did put it on silent though 😂
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My unwilling journey with Crohn’s Disease 
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