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.

surgery1

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.

Surgery4

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.

Surgery5

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)!!!

surgery 6

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

 

 

 

 

 

 

 

Advertisements

Confessions of a Crohnie – Part 3

  • I have gone to the doctors in my jammies more than once – not even ashamed.
  • My granny pants are so big they come up to my belly button.
  • Every time I try and be healthy or go to the gym, my body goes into shock. WHY ARE YOU FEEDING ME VEGETABLES – GO TO MCDONALDS AND ORDER A CHEESEBURGER. (FYI – I tried a pea pod the other day and I lived to tell the tale).
  • My painkillers are the dissolvable kind as I can’t swallow tablets.
  • Sometimes so much poo comes out of me I wonder how it is possible?!

cropped-cropped-poo-emoji.png

  • I get annoyed when people confuse IBD with IBS – it is NOT the same thing.
  • I get frustrated when people assume I am well because I am young and say you look great… nope, help, my insides are red raw. I have about 89 mouth ulcers (exaggeration) and I don’t know the last time I had a solid bowel movement.
  • I am lucky that my work understand my disease. I have worked in retail before where it was a struggle to get them to realise it’s not IBS (see point 1 of this section) Print outs and tears eventually helped me get the point across.
  • I always feel dirty.
  • I go through about 4 rolls of toilet roll a week.

cropped-cropped-poo-emoji.png

  • At the moment I just want to eat quiche and drink Dr Pepper – healthy as ever.
  • My farts smell so bad sometimes, I have actually boked in my mouth (sorry TMI!)
  • Every day for me is a learning day. I love reading about new Crohn’s studies/developments.
  • As you probably are aware, I am very open about my body. I could talk about poo all day, every day.
  • I should be renamed Spotty McSpot face at the moment as I am having a major break out thanks to medication.

cropped-cropped-poo-emoji.png

  • Even when it’s a warm night, I have to go to a bed with a hot water bottle strapped to my back.
  • My pain threshold is pretty impressive.
  • I would love to wear white jeans but I have the FEAR of an accident happening and knowing my luck it would happen in public.
  • I have learnt not to judge. I can’t stress enough the importance of not evil eyeing someone as they come out of a disabled loo – Not every disability is visible!
  • Sometimes I just have to laugh at the situations I get myself into and hope everyone else is as understanding about the smells, tears and regular updates.

 

Confessions of a Crohnie – Part 2

 

cropped-poo-emoji.png

  • I have it drummed into me to check my poo for any changes. When changes occur such as colour, texture or smell I note them down to inform my doc.
  • The relief of making it to the toilet in time is never to be taken for granted.
  • I have looked at adult nappies and thought one day I am going to find them very useful.
  • Stomas are scary to me and living in fear of possibly having to get one is draining.
  • Then I remind myself that it would increase my quality of living and I feel a bit better.

cropped-poo-emoji.png

  • Sometimes my poo comes out blue/green. I know not to panic and it will be from either drinking too many blue WKDs (true story), iron tablets or eating spinach (usually).
  • Cider seems to be the only alcohol that plays havoc with MY Crohn’s but every Crohnie is different.
  • I can look at size 8 in the morning the by lunch time I can look 8 months pregnant.
  • River Island have the comfiest leggings – Good for people who suffer from bloating too!
  • I dread when the doctor tells me I have to go on steroids.

cropped-poo-emoji.png

  • I dread going to the doctor/hospital/nurse in general and I like my dad to come with me. Chances of me passing out when seeing a needle/blood are high!
  • Some (most) toilet trips make me cry in pain.
  • Sudo-cream is a very handy thing to have in the house during a flare!
  • If I eat something spicy, I can guarantee it is going to cause serious damage and upset.
  • ^ Same with pineapple, tomato soup, vegetables, sour cream and popcorn.

cropped-poo-emoji.png

 

  • When I am eating, I sometimes have to think about other things to distract me.
  • I only feel really comfortable eating in front of people I know well.
  • I maybe, sometimes use my Crohn’s as an excuse to get out of things (shhh!) BUT more often that not I push through and end up making myself ill.
  • When in a flare (before diagnosis) my pain had been measured higher than someone in labour.
  • Crushing your painkillers into jam and singing a spoonful of sugar makes the medicine go down will result in tears and being sick into the toilet.

CrohnsIf there is anything you would like to know about please ask – I am happy to answer any poo related questions.

Thanks for reading x

Confessions of a Crohnie – Part 1

cropped-poo-emoji.png

  • The pain never goes away. I can mask the pain with very strong painkillers but it always returns.
  • Taking above painkillers on an empty stomach (not doc advised) will make you loopy and think minions are attacking.
  • I cry in the shower a lot – In fact I cry everywhere a lot!
  • I can be constipated one minute and diarrhoea the next. Every toilet visit is a surprise.
  • Sometimes it hurts to sit down after wiping too much. So much so, I might invest in a rubber ring.

cropped-poo-emoji.png

  • There is an art of getting ready while perched on the loo. I have mastered this – finish my coffee (see pic below)*, teeth brushed, make up applied and dressed.
  • My stomach makes noises that don’t even sound human. They are often mistaken with the engine of a double decker bus outside my work. Lucky colleagues!
  • I often get caught up in the routine of pooing, showering, pooing, showering…
  • Granny pants are not attractive but I own 16 pairs of the floral kind.
  • Accidents do happen. I can laugh about it!

cropped-poo-emoji.png

  • I sit on the toilet for at least 15 minutes, every morning, before I leave for work.
  • I can’t remember what it is like to not have UTI symptoms or to be fully awake.
  • Always take the doc up on the offer of sedatives for a colonoscopy.
  • The prep to get a camera up your bum is much, MUCH, much worse than the procedure itself.
  • Having a fear of needles is not ideal when taking azathioprine.

And last but not least…

  • I can tell you which toilets have the nicest hand soap! (at the moment Tesco is winning)

Coffee shower

^ it is sadly a joke box, but it would make my life 100% if the product did actually exist!