Catching up with my Consultant

The last time I seen my consultant was in March when he arranged a colonoscopy for me, so it was nice to see him face to face with less teary version of myself.  Also NOT in pain.

I don’t think not being in pain is ever going to get old. I want to cartwheel everywhere with bells and lights on, letting everyone know that I have NO ACTIVE CROHN’S DISEASE in me. Yip, no sign of any Crohn’s. Apparently when I was on the surgery table they fed a camera through the walls of my bowel or something fancy yet gross like that. They can also judge the future of Crohn’s based on a very solid stool sample I handed in. How clever!

My ever so lovely consultant was happy with my progress. He did state that my insides were a mess (which I knew already). I had 30cm of large intestine removed and 18cm of small. There was also another fistula developing onto the skin so they removed that too while they were already in the area. Makes sense I suppose.

The bad news (yet good news in the long run) is I am back on medication. I wasn’t too happy about that but nothing a wee cry into a pizza couldn’t fix. I am on a daily dose of Azathioprine or Aza for short. They are immunosuppressive so if you have colds, flu, chicken pox or worse please stay out my way if you don’t want skooshed in Detol. The only side effects I have experience so far have been bright yellow pee – I am talking glow in the dark yellow, loss of appetite and feeling sick. I will take them any day over fistulas and strictures!

As Aza is quite a strong drug, I am on fortnightly blood tests (yay for needles – *sarcasm*). This will monitor my liver and kidneys, and also make sure my Crohn’s isn’t creeping back in.

Even though I have NO CROHN’S IN ME (eeek) right now, it does not mean I am cured. It can reappear at any point and anywhere from my mouth to bum hole.

For the time being though I feel fantastic. I can’t stress that enough!! Do you know how good it is to leave the house without the risk of sh*tting yourself? The energy I have to live my life and not be too exhausted to tolerate people. I don’t have to feel guilty about cancelling plans because I am not chained to the loo, or turning up moany because I have no reason to moan! I can poo like a normal person, I can eat veggies (how good are veggies!) and I can be spontaneous.

However, I still can’t handle sambuca…. Sorry Hannah and Anne!
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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

 

 

 

 

 

 

 

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…

 

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*** 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.

 

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*** 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.

 

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*** 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

 

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Zombie Pub Crawl // Halloween 2017

Over the weekend I took part in a zombie pub crawl through Edinburgh’s Old Town. Covered in fake blood both Russell and I looked like reject zombies, compared to our friends Robyn and Graeme who looked like they had walked straight out of a thriller movie. EEEEK!

We ventured to 7 pubs, had 5 free shots and a few too many vodkas to get us through the night. It was definitely an adult version of trick or treating!

Highlights of the night include the live band at Dropkick Murphy’s, the chocolate shot at Vodka Rev and me forgetting I had fake blood on and nearly having a fit shouting ‘Help, help, I’m bleeding!!!’

…and not forgetting the munch while in the taxi queue. Every night has to end with food of course.

The night was organised perfectly by Edinburgh Pub Crawl and tickets were £10 which covered VIP entry, shots and discounted drinks.

You can see how much fun we had in the photos below, but by the last one all I wanted was chips and cheese!

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HAPPY HALLOWEEN!

 

 

Meats & Beats Festival

If you love food, music and of course a wee drink or two – this is the festival for you!

Located at the Assembly Roxy, food and drink vendors set up camp for the weekend. On offer were a range of different street foods such as steak, lobster, dirty fries and cakes. A food lovers heaven.

Surprise, surprise, Russell and I were the first 2 through the door of the Sunday afternoon session.

We focused mainly on the alcohol. Russell was manly with his pints of lager from Stewart’s Brewery and Fyne Ales while I drowned in prosecco cocktails and champagne (thanks to JoJo!) One of the cocktails I drank for the Pop Up Cocktail Kitchen had a ham crisp floating in which was weirdly nice!

 

To line our stomachs we munched on black pudding and smoked potato pakora from Bruadair, which was amazing. For £5 it was a generous portion and had the perfect amount of heat for someone who usually avoids anything with a bit of spice. I have actually been craving these since.

Throughout the sessions (4 in total) games such as Blind Date and Catch Phrase were running. Russell and I took part in a pub quiz ran by Goose’s Quizes – we came last. To be fair the questions were tricky. I shall be scrubbing up on my general knowledge before taking part next time. Why couldn’t there have been a Mcfly round? Russell was also entered into a chicken wing contest. Sadly he never won and missed the opportunity of a free pint!

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Classic movies where also being shown and music was played in the main hall which changed decade every hour. When buying your ticket you could request a song or tweet the DJ on the day. I asked for ‘Call Me Al’ by Paul Simons as that usually guarantees a boogie.

 

Tickets started at £5 with food and drinks not included. Fancy dress was encouraged and so was dancing to warm you up.

It was a great day for foodies and I have everything crossed it runs again next year!

 

 

Should you be doing that?

I get asked variations of that question a lot. Can you do that? Are you allowed to do that? What would your doctor say? Will that not make you worse? Is that the best idea? …

… and my least favourite statement EVER “You are burning the candle from both ends” –  I don’t know why but it makes my skin crawl and I will throw a major eye roll in your direction.

As a 24 year old, my favourite things are socialising with coffee, cocktails, gin, food, dancing. Everything in that list I probably shouldn’t do but I do. Quite often in fact (which you will see from my previous posts.)

For someone with a few chronic illnesses I am very much about living in the moment. If I feel up to it I will do it. Some days I don’t, which is fine by me. I spend those days in my jammies, on the loo, crying. As I haven’t been blogging about those dark days recently it doesn’t mean I haven’t been having them.

Russell sees me at my worst nearly every day. From 7:30am onwards I have an endless battle on how I am going to tackle the day. I can either give into my symptoms or give myself a pep talk and leave the flat. Again, you don’t see that. You don’t see me weighing up every thing that could go wrong, will food be served, what would I eat, are toilets on route, are they going to be clean, is my stomach going to start making uncontrollable noises, will I last the whole day, would what this person think if I started crying, can I lie down anywhere…. the list goes on!

^ that is just about my commute to work.

So, when I go out out (like proper out) I like to make the most of it. I will drink an extra cocktail, indulge on extra cheesy macaroni and of course have extra vanilla in my latte because it has taken a lot of energy to get here. I deserve it!

So the point of this post is really to say NO I shouldn’t be doing that – but I’m not going to let me Crohn’s stop me… unless it is completely necessary. Now, where is my Friday cocktail?

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