This Crohnie can exercise!

Recently I have been on an exercise mission. It all began when I entered a competition to win a PT for a month, then went on to actually win.

I have never been a fan of exercise and usually lack motivation/energy to even reach 10 000 steps a day but that is slowly changing. Since having my rotting intestine out I have found a new lease of life (cliché or what?!) so with the help of iron infusions, b12 jags and Michael (my PT) here I am reaching goals I never even thought was possible for a lazy tattie like me.

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To ease myself in to getting my heart rate up I joined a dance class. This was so much fun! I used to dance a few times a week pre-Crohn’s. Although, my dad still questions where the money went as I have no rhythm at all. Every week we would learn a new routine along with a new style of dance. Unfortunately for us ‘dancers’ the class is no more at the moment as the teacher was snapped up by a cruise ship to dance all over the world! Amazing! That might be me one day if I keep this up….. Ha!

Then I signed my cousin and myself up to an early morning boot camp. Sorry Gemma! In this class I realised I had no coordination and have returned home not once, but twice with skint knees. The boot camp takes place at 6am in a field behind my flat. I leave my house at 5:57am to take part in circuits, running and weights. Sometimes it is fun. Sometimes I want to cry, faint or spew.

Russell loves rugby so when I seen Tartan Touch I thought I would give that a go too. One little head knock later and a good few bruises, I have to say it is my favourite form of exercise (even if I don’t really know the rules). Ice poles appeared at the end once, but that was the time I banged my head so maybe I imagined that…

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Now onto my running. I recently watched my best friend run the Edinburgh Marathon – I have never been in such awe in my 26 years on earth. Not saying I will be running a marathon anytime soon, but thanks to Hope I have downloaded the Strava app and now running up and down Linlithgow High Street. With a few 5Ks under my belt I can see the addiction to running. To start with I did want to throw myself in front of every moving vehicle that passed but that feeling soon vanished as I became more confident. I got a band for my waist too, this stops my insides from jiggling about. I also got new trainers and even fancy socks the support my arches or something high-tec like that (who knew high-tec socks were a thing). Russell dragged me round the loch once and I got eaten alive by midges – I was hating him, and the stupid little midges for the whole 36 minute run. I have now cut down my time to 34 minutes – go me!

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Oh and there was a week of rollerblading too.

What exercise should I take up next?

 

 

 

 

 

 

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One year on…

It has been a fast year considering the first half of 2018 seemed like it went on forever and ever and ever.

This time last year I was theatre prepped and ready to go through with the biggest thing in my life. To this day I am still in disbelief I went through with it. Adult milestones such as babies, weddings, new houses are nothing to in comparison to loosing an intestine.

Ok, ok, of course I am kidding (or am I??). Anyone could get married if they wanted to – Not many people can say they have had a large portion of their insides out! 

So to celebrate this anniversary – One whole year since saying bye to Crohn’s – I thought I would share some of my most embarrassing moments while recovering from surgery. I have had this post saved for a while now, but I think now is the perfect time to publish.

Here goes…

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After surgery selfie!

Good old morphine turned me into a looney tune… the first night after surgery I must of beeped the nurse umpteen times to tell her someone has been in and moved my catheter to my bum. Bless her as she reassured me every time. I was in such a panic I even text Russell ‘my catheter is up my bum help’ a few times through the night too.

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I also thought I had clapped a llama and missed out on a round of ginger biscuits.

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My cousins popped into see me and I was telling them all the crazy thoughts I had been having. One of which did actually happen – My surgeon had danced out the rooms pretending to play castanets. Thankfully Russell had been a witness to that!

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Having work on your bowels means everyone (not quite everyone, family and docs) wait for you to move your bowels. Mine just happened to move in front of a room full of people… I was in the bathroom but they could definitely hear and cheered along. YAY.

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My first steps ended up with me blacking out in a corridor. I literally thought everything inside me was going to fall out then nearly hit the deck. The poor physiotherapist got such a fright. It is not like me to cause a scene (ha). Staff poured out from everywhere, placed me in bed and I didn’t go anywhere for the next day or two.

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The catheter caused lots of problems too, which I have shared before. It kept blocking so I had to have it removed a few days early. My brain had got used to having a tube in my bladder that I had no control of my water works. I peed all over my mums drive, my shoes and front porch. Visitors arrived minutes later following a trial of my pee into the house.

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As well as no control of my bladder, I didn’t really have control of my bowels. In hospital big square pads are placed everywhere your bum would touch. So, we covered my mums house in puppy pads (when I say we, I mean her, I was still lying horizontal) To this day I am sure my mum would of preferred a puppy rather than an incontinent daughter for 2 weeks.

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Wearing cool t-shirt nighties was not so cool when I flashed every one of my visitors. Would totally opt for longer granny-esk style ones. Sorry everyone!

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There was an Angel Delight situation… I have never looked at it again. Mouth thrush, lots of very big pants, a leaking belly button (boke) and lots of over the top dramatic tears (when I had the energy). Looking back now it was a very funny experience but at the time I was in a very dark tunnel with no aircon.

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Happy to be able to eat… pain free.

I am happy to be living life with no active Crohn’s and I hope to do it for many more years to come (and maybe tick off some of those adulting milestones…)

But for now, the sun is out and I have a bottle of prosecco chilling in the fridge to celebrate my little anniversary along with a table booked for Mexican food (certainly beats my mum spoon feeding me macaroni from my bedside)

Ps. Note to card companies, a ‘congrats on not sh*tting yourself for a whole year’ card would be a hit in the IBD community.

x

 

 

Long time no post!

Well hello again!

Sorry I have been lacking on the updates, posts and basically all Crohn’s engagement. I have to admit I have been kind of busy just living my life – pain free I may add. Yes I have had a crazy reaction to B12 jags, a few iron infusions to keep me bouncing about and some nausea with my medicine but I am all good. It is great to be able to say that!

This time last year I was waiting for the unknown. Just living (well not really what you would actually call living) day to day. Bowel movement to bowel movement.

Now I have been jetting about the place. Hello Mexico! Hello New York! (credit carding the travel insurance – shh!) Drinking probably too much prosecco for my consultant to know about and eating everything under the sun. YES FOR VEGGIES.

I am enjoying being able to get out my bed, jammies then on a train to work with no tears.

I won a personal trainer – ha – so I am ‘working’ on my fitness. I am reading books, cooking from scratch, joining in on a local dance class. I was even on the radio talking poo, again. Just living my best life. Who would have thought? It really is the little things in life that give me the biggest thrill.

Anyways, I am going to get back into this blogging malarkey. Just right after I get back from camping… or glamping should I say – I am still working on my fear of toilets!

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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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