I’m Back… Minus an Organ and a Half!

I don’t really know how to quickly recap the last 6 months. It has been slow, sore and miserable. Between Russell and I there has been roughly 1 MRI scan, 1 CT scan, 1 (failed)Colonoscopy, 1 Flexible Cystoscopy, 1 cancelled surgery, 2 Surgeries, countless blood tests, urine samples, a couple dozen X-rays and weekly physio appointments but here we both are… out of the tunnel, still together and very grateful for the NHS.

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When we weren’t at hospital appointments – shout out to Ninewells and Forth Valley Royal Hospital – I was sat on the toilet, usually in tears, going through loo roll like we were made of money. It was not a fun time. In all honesty I had been feeling like shit (I am not one for swearing but there is no other word to describe it – sorry mum!) way before I made it known. I had been running on 30% for as long as I can remember but would put a smile on my face, go to work and grin through the pain. Yes, I am stubborn.

Now as the title suggests, some of me was surgically removed. Me… who is petrified of needles and blood had to get surgery. FANTASTIC. It was sprung on me last minute though so never had time to end up in panic. The docs went from surgery to no surgery, to radio silence to HELLO COME IN FOR SURGERY NEXT WEEK. Ah.

It turns out I never had just one fistula. I had two (1x bowel to bladder & 1 x bowel to bowel), along with a stricture and abscess on my bladder.

I had every right to be in tears all along.

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Anyway, it is good news – my amazing surgeon, Mr Jabber, removed most of my large intestine, a wee bit of my small intestine and removed the abscess all in 2 hours. I was pretty out of it for the week after but I was on less pain meds after major surgery than dealing with my Crohn’s before so I was pretty positive. All was well minus a blocked catheter that made my bladder grow to the size of the moon. That was painful – this happened every 8 hours for 3 days! I NEED to apologize to the district nurses that had to deal with me then. I was not in a good mood/way/emotionally stable. If anyone ever comes at me with a catheter again, I am running for the hills.

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And more good news…

Russell is the most positive person I know. He kept my spirits up even when dealing with his own shit (sorry again mum!) situation and second surgery. His surgery was cancelled, then rescheduled for 5 days after mine. Eeeek. Our flat resembled a pharmacy for a while; stocked with the good stuff. I wish I was as strong as him, he did it ALL with no tears and now back at work. AMAZING!!!

And to think this year wasn’t going to be about me – read this post (drama queen forEVER)!!!

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I promise I will get round thanking everyone for their help eventually – sorry auntie B, I ate your ‘thank you’ macaroni pie! x

 

 

 

 

 

 

 

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January’s Fistula Diary

As I type this I am out my nut on painkillers so apologies for oversharing and maybe ruining a love of Super Noodles!

I am off work at the mo due to a bladder fistula and it sucks. However looking back over the past 3 weeks, I have found myself in some situations that I am now embracing and finding quite amusing.

Here are little diary inputs from January…

 

Toilet roll
*** Love a loo roll delivery ***

 

Day One: While celebrating Russell’s birthday in Edinburgh my fistula symptoms reappeared with a vengeance. What was meant to be a lovely night away consisted of me crying my eyes out all night on the toilet, while peeing out poo. Ouch!

Day Three: A visit to the GP resulted in a surprise smear test for me. They are never fun but surprise ones are much worse – you don’t have time to groom, put on nice pants and have a decent pep talk with yourself *Cries reliving the moment* The surprise smear took place with my boyfriend in the room. YES CRINGE! Thank goodness for curtains and naïve other half.

Day Four: Side effects of my antibiotics and painkillers kicked in. Hello diarrhoea! Food started to pass through me at lightening speed. While eating Super Noodles, I needed a toilet break. Only for me to come out screaming that I have worms… nope, only noodles.

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*** Just a wee bit spaced out ***

Day Ten: ASOS are getting the blame for this one as they emailed me a voucher. I needed a pair of dungarees, also a beret, a new dress (make that 3), jacket and skirt. However when the order arrived, I popped the dungarees on, looked super cool and I was feeling great (I am running out of clean jammies) That was until I needed the toilet. Dungarees are fiddly and my bladder has no patience at the moment… you can imagine the rest!

Day Twelve: Ventured to Aldi for some ready made mash potato in my jammies. Of course I bumped into my mum and auntie… I hadn’t even brushed my hair that day. Shameful.

 

cry 1
*** I want to cry about the double chin here ***

 

Day Sixteen: I jammed my finger in the door when going to collect another ASOS delivery. I started crying and couldn’t stop. The tears would not stop pouring out my eyes. Russell then told me I was his best friend and happy tears over took sad tears but still tears none the less. Probably why I was dehydrated at the docs the following day…

Day Seventeen PM: For a change of scenery, bed and toilet we went to St Andrews for the night. As a treat we decided to go for a posh steak meal. I have no appetite unless it is for mash tatties or scampi (weird combo, I know!) Russell came out stuffed after 2 steak dinners while I tucked into bowl of posh creamy mash in the fanciest place I have ever dined. Classy.

 

Sleep 2
*** Feeling oh so sorry for myself ***

 

Now what is in store for February? Well I am getting a camera up my pee hole, I have been signed off work for another 2 weeks and I am hoping for a solid bowel movement.

Wish me luck! x

 

 

 

 

 

2018 – The year I realise the world doesn’t revolve around me!

*GASP* I know it is shocking really that it has taking me to 24 years old to realise that actually the world isn’t revolving around me. Is it because I am an only child? Who knows…  I am just used to getting my own way most of the time. I am not the best at compromising and I can be ever so slightly selfish as it is usually my way or the highway but now, oh how the tables have turned for the next few months or so (then I can return to my normal needy self – sorry Russ)!

If you follow me on Instagram or Twitter (sorry, little plug there) you will know my more emotionally stronger other half found himself in an accident which was pretty serious. Ambulances, surgery, stitches etc…. Real life episode of Casualty.

This is when for the first time EVER my adulting (is that a word?) instincts kicked in and I wasn’t top of my list. Russell was… oh I am soppy.

Funnily enough, more than one person has questioned how I will cope… and so far so good, I think. What I lack in normal household jobs I make up for with hospital knowledge and teaching Russell the Spoonie way of life BUT I haven’t gave Russell food poisoning, the washing is still getting done and I am reading more than ever due to the Rugby matches that are taking over the telly – it is only fair as I usually subject Russell to hours of RuPaul when I’m not feeling too good.

Russell has been so brave, it puts me to shame. He has held himself together like an absolute trooper, both emotionally and physically. I have been crying tears for him, sparked by a lasagne not warming up fast enough. Drama queen eh!

Anyway, this is just a little post to get me back into the swing of things as I have been majorly neglecting my blogging life which I am starting to miss. I just am using my energy, or lack off, to keep Russell smiling – and luckily for him, it is birthday this week. Five Guys here we come (I know how to treat him ha!)

Russell, We will be high fiving before you know it. Love you lots x

 

Russ Hand 1

 

Dining with a Crohnie

I love food, I really do, but reading this post you are going to think are you sure? You seem like a barrel of laughs to go out for a meal with… I promise it’s all good if the rules in my head are stuck to!

If not I usually grin and bare it so you would probably never know I am on the edge of break down (ha!)

I try and go out for dinner as much as possible. It’s something I have loved to do since I was little. Anything from a bar lunch to something more formal I am always willing to give it a try – as long as there is bread rolls on the table as back up.

So what are my fears, rules and weirdness when it comes to dining out with me? Well…

  1. I always read the menu before I go anywhere. I don’t do being spontaneous when it comes to eating. I will usually have a first, second and pudding option picked out and ready to fire to the waiter. I don’t do waiting as it gives me time to overthink!
  2. Sharing food gives me the fear. I am a bit like Joey from friends, although it’s not because I am greedy I just don’t want your germs. I will share with Russell, close friends and family but that is pushing it.
  3. I like to distract myself while eating. I have to either be talking, watching TV or in a deep thought about something – I tend to glaze over. If not I end up focusing on what I am eating the end up in pain.
  4. My stomach is always making noises. It is not necessarily because I am hungry. It can sound like a whale calling… It can be embarrassing when it grumbles in the office.

Food

  1. Majority of the time I am full after 2 bites. I have had to train myself again to eat more. It is kind of like mind of matter. I am continually telling myself ‘I CAN do this!’
  2. I will ALWAYS find something wrong with a meal. I use this as an excuse to not have to finish it. Russell is always on hand to eat my leftovers though.
  3. I don’t cope well if my food is touching or if someone else (Russell) mushes their food together.
  4. I would happily live on puddings for the rest of my life.
  5. If going out for a meal I like to know every detail as my anxiety goes through the roof – Who is going, what are they eating, do they share food, do they do starters, where will we be sitting, are we staying for pudding, will they comment on my eating habits, do they know I am this weird (hahaha), is the toilet near by, will they judge me if I don’t eat my vegetables….
  6. I will only eat things made my certain people (although I am working on this one). For example, I will only eat my dads omelettes or my mums sandwiches.

Now please don’t let this list put you off inviting me out. If I don’t eat I am quite happy enjoying your company… maybe even with a glass of gin in my hand!

Chaophraya

Festivaling with a Crohnie

So, after watching Glastonbury over the weekend, I got proper festival envy. I spent Sunday watching George Ezra on TV feeling sorry for myself. T in the Park was my summer holiday for a few years but sadly that is no more!

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I have been lucky to attend my local festival, Party at the Palace and had great fun. They were great with my invisible illness and let me use the ‘posh’ loos instead of the smelly ones. For it being held in my little town, some big names have been at it. The Proclaimers, Nile Rogers (Chic), The Feeling and many more. This year we have The Kaiser Chiefs who I LOVED back in the day. Yay. Fingers crossed they have the same great staff as before, and I can sneak to the posh loos – maybe bump into Gok Wan on the way? Festival 1You can camp at PATP but as I have a flat near by I don’t need to. Although I would say the camp site has always been the best part of T in the Park.

Now when I told people I was camping at T in the Park, many looked at me with confusion and fear. “No way will you manage”, “Have you seen the toilets???”, “You will hate it!”

To be honest – I was fine. Yes the toilets where stinking but that could easily be blocked by stuffing baby wipes up your nose. Hand sanitizer was a god send and I was really one too many ciders drunk (sorry mum!) to care.

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The first year I camped, I upgraded to the VIP toilets and showers. I put fresh make up every day and flowers in my hair. I was looking for that perfect Instagram festival photo but by my second year I just walked around like a minger and had a baby wipe shower in the morning (you can never back to many wipes!) My make up was limited and I never even used dry shampoo. I was a total tink but had the best time! The clothes I packed where a lot less than the first time too – I took a suitcase on my first TITP trip. It was packed with outfit options, pot noodles, ham sandwiches and enough loo roll to tee pee the whole campsite (when in reality I was keeping it for my poor bum). After the trek I learnt very quickly less is more AND you can live on chips, cheese & curry sauce without getting a pain.

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As Crohnie what are my top tips for keeping up with the festival goers?

  1. Pack baby wipes – they are handy for everything! Also, don’t feel guilty about not sharing.
  2. Keep hydrated (boring I know, I would much rather keep drinking vodka) this will help your insides, especially kidneys if on azathioprine.
  3. You will probably look like a drug dealer with all your meds but take them! Store them in a safe place and if you forget a dose (due to cider brain) don’t panic – Just remember to take them at your next normal time.
  4. Know where the first aid tent is… in case of emergency!
  5. Don’t feel bad if you end up missing an artist and have to stay at the campsite. That is where all the real fun is.

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PS Crohnies – Another bonus about using the toilets at festivals are that they are already  bad, that no matter what you added to the pan it never really makes a difference (TMI? sorry!) SO be brave, be bold and go dance the soles of your wellies off…

You can get Party at the Palace tickets here

 

 

Drinking with a Crohnie – Linlithgow Marches

HIP HIP?! HOORAY!

I get asked a lot if I am ok to drink alcohol, and the answer is yes! (woo) I tend to drink spirits – gin being my favourite – but every Crohnie is different. I struggle with cider and beer which is a shame, as there is nothing better than on a hot day (rare occurrence in Scotland) than to crack open a fruit cider and burn my ginger skin.

Anyway, Tuesday was Linlithgow Marches. A historic event where the boundaries of my little town are checked and declared safe with lots of pipe bands, floats and celebrated with a few alcoholic beverages. You can read more here about the ins and outs – A lot of planning goes into running the day smoothly so thanks to everyone involved!

My family celebrate the Marches by doing a pub crawl along the high street, which Linlithgow has plenty of. We start at the West port and head along to the Low port hitting every pub along the way.

It is an early start on the Marches with pubs opening at 7am – we held off until 10am… This year we were sensible though and lined our stomach with morning rolls cooked by Russell (unlike previous years… oops!)Marches 1 .jpgThe first procession along the high street starts at 5am but I was still sound asleep (I did walk it last year) so I was glad to see the 11am one. This years floats included Beauty and the Beast, Baby Boss and Ghostbusters to name a few.

Marches 2

As the pubs are busier than usual toilet queues are very likely. This is the one time having Crohn’s can come in very handy as I have a ‘Can’t Wait’ card. I do use this to my advantage – naughty, I know! A BIG shout out though to Ellie’s Cellar who let me quickly pop in. I did return the favour by purchasing a mini Edinburgh Gin to top up the hip flask. It is great to see so many people out celebrating together and having a laugh. I always end up bumping into people I haven’t seen in ages. It is a great excuse to catch up!

Marches 4

Being the kids Russell and I think we are, we headed along to the shows that are set up in the Tesco car park. After a few spins on the waltzers I decided I was hungry so went to get pizza. Which unfortunately ended up all down my white dress. I am hoping Vanish will be able to remove the cheese stains.

We met back up with the family and next thing I knew I was up on stage in the local hall singing along with a band to the Proclaimers. Sorry for anyone who had to hear!!!Marches 5

After a little dancing Russell and I decided to call it a night and get some chips and cheese for the walk home.

Definitely one of my favourite days of the year and you will be glad to know I woke up hangover free unlike someone else I know (Russell).

Long live the Marches! 

 

Chained to the Toilet – Day 2

Day 2 of this flare and I am onto toilet roll number 4, season 2 of RuPaul’s drag race and my 3rd pair of clean jammies – so far so good I would say (all considering that is!)

I am currently off sick from work which I HATE doing due to my Crohn’s but I think my colleagues will be thanking me on this occasion. I am extra moany, extra whiney and extra smelly… but I feel like when I phone in sick I don’t sound sick. I don’t even look sick.

SO what is wrong with me this time?

I am peeing poo – yip – that is happening. l also have blood in my poo and severe stomach cramps. The thought of leaving the house with no access to a toilet is giving me the FEAR! Thank goodness for painkillers, antibiotics and hot water bottles.

I am not even attempting to push on today . I am admitting defeat to this flare by curling up in my new bed (it eventually arrived) and working my way through a pack of Andrex wet wipes – Sometimes you just have to treat yourself and your bum.

Fingers crossed I will be back at work soon. Doing what I do best and pestering my colleagues with my how to be an adult questions!

Toilet RollP.S. Not looking for sympathy here. Just keeping it real with all you lovely readers.