Personal Blogs

The Enchanted Forest Cosmos

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Last year we went to The Enchanted Forest event to celebrate our first year anniversary of being together. This year we wanted to do the same and make it a yearly thing! This years theme was Cosmos with lots of outer space sounds and visuals.

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This event is held in Pitlochry, a scottish town near Perth. As we are in the North East of Scotland it takes is around 3 hours to get there depending if traffic is OK so this year we left early to get there during the afternoon and explore the town as last year we didn’t have time. We had a little walk around the town and went to a little candy store that had lots! We also had to make a stop into the hardware store as silly me forgot the memory card for my camera! Once we got that sorted we headed back to the hotel where the coaches picked up people for the event, had our complimentary tickets scanned and our hands stamped.

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Once we got onto the coach, they had a recording with cute music playing alongside a voice over, to let everyone know the rules such as not to litter and explaining to children to be careful etc. It took around 5-10 minutes to get to the forest where the event is held and we stepped off and headed towards the beautiful coloured lights. The weather wasn’t exactly on our side but the trees sheltered out most of the rain! Firstly, we went for a bite to eat at the burger stall. Jaimie had a cheese burger meal and I had a hot dog with chips and cheese (my favourite!) The chips were just as amazing as last year but sadly we were both quite disappointed with the hot dog as when tasted, it was just two normal sausages with herbs in them which didn’t taste too nice, I didn’t care too much as the chips were so so good!

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We walked around the lake and viewed all the beautiful displays such as the water light show and these beams that lit up and played music when we touched them! We then got some hot chocolate (just me as Jaimie doesn’t like chocolate) and headed back to the coach. By this time it was really, really cold so we headed back to the car after getting off and put the heated seats and warm air conditioning on!

 

Down below are some photos from the event ;

 

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Personal Blogs

Halloween Tag 2019

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It is Blogtober and that means many wonderful blogs! After being tagged by the lovely @thespooniemummy who has an awesome blog raising awareness on all things chronic illness and parenting.

I thought I would join in on the Halloween Tag 2019, here are the questions!

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1.What’s your favourite non scary Halloween Film?

Casper!! I have loved Casper since I was a little girl and how they intertwine the physic side of life into an epic kids halloween film.

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2. And your scary film to watch is?

I absolutely love scary/horror films.. but of course I can only pick one! So it has to be The Nun. It is simply terrifying and even though it is the last of the Insidious Saga of films, it is actually the first one. It was released after the last Insidious film. I won’t ruin it for you if you are yet to watch it.. if you like a good scare! What I will say is it will definitely leave you sleeping with the light on or destroying a whole multipack of crisps or tub of ice cream without realising!

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3. Do you have any Halloween traditions?

We always have a night in watching scary films or gaming, however last year we had a little switch up and bought the dogs Halloween costumes! When the trick or treaters knocked on the door, we greet them with dressed up doggies and the kids totally love the animals joining in! This year however one of my friends who owns his own bar locally is having a Halloween party on November the 1st so we will be dressing up and attending that, I’m also doing the photography for that so it will be really fun!

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4. What is your favourite season of American Horror Story?

That is such a tough decision to make as each season is bloody amazing! I’m 50/50 with The Asylum and The Hotel! I love the Asylum because it highlights such important factors within the mental healthcare system back in that time and also how in those days mixed racial relationships had to be kept hidden and if anyone knew, these couple received such awful back lash not only from the community but also their own families. The nazi doctor who did experiments at the mental asylum was also crazy, infact wacko! It was so well put together showing how each patient was mentally unwell/unstable but they were all affected differently.

There is no question as to why I love The Hotel… it has Lady Gaga as the main character! If you love vampires then this season is definitely for you. The glamour, the mystery and the deaths inside the hotel that trap their souls forever is so interesting.

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5. Favourite thing about Halloween?

E.V.E.R.Y.T.H.I.N.G! What isn’t to love about Halloween?! It gives me the excuse to snack on absolute crap for one ha ha! In all seriousness though, I love the creativity that flows within people – the makeup, home made or bought costumes, families coming together and taking the little ones trick or treating and all the fun Halloween games such as dookin’ for apples!

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6. What Halloween costume will you or your children be wearing this year?

This year I’m breaking my Zombie Nurse costume that I used to wear every year and I’m going for an eco-friendly costume that I bought from Ebay which is a Skeleton bodysuit and skeleton tights. Halloween costumes are so great and the less plastic we use for costumes each year, the better. I don’t have any children as of yet however the dogs have a variety of costumes to choose from such as a shark, jester, pikachu and much more!

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7. Has anything spooky ever happened to you?

Yes, quite a list but I won’t bore you with the entire list! I always have to remember that not everyone shares the same views or beliefs however, the scariest thing that happened to me was when I was 17 when I was newly diagnosed with my illness- Crohns Disease. At this time I stayed with my mum and was very unwell. One night I woke up to people standing around my bed and it was so terrifying, I screamed and cried. I eventually cried myself back to sleep and when I woke up there was noone there.. I later discovered the people I saw were passed over. Since then, I have seen a lot of non living people and have had dreams where my Granda and another person I knew called Gav who visit me.

It is quite terrifying to  be able to see the unliving and I try to ignore it as much as possible as I’m not quite ready to live my life being comfortable with it and having them around me more.

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8. Who is your favourite fictional serial killer?

Damn, just fictional! It definitely has to be A from Pretty Little Liars! As it was originally a book. It first starts off as Mona then as the series goes on, it turns into CC being A!

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9. What’s on your Halloween playlist?

I actually don’t have a playlist dedicated to halloween as my music taste is full of variety! Mostly Ozzy Osbourne, Metallica, Disturbed, Slipknot, Nirvana etc. But if I had to pick some then they would definitely be The Cranberries – Zombie, Blue Oyster Cult – Don’t Fear The Reaper and Bad Wolves – Killing Me Softly.

Now I have to tag other bloggers to continue the Halloween tag 2019! I have chosen;

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crohnsfighting 

Colitis and Me

Have a lovely Halloween and make sure to give these bloggers a follow!

 

 

 

Life With A Stoma, Personal Blogs

5 Years Today I Was No Longer Homeless!

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Today, five years ago I finally got the keys to my permanent home after being in homeless accommodation for 7 months. Aberdeenshire Council were so helpful in finding me a permanent home and I am still to this day very grateful. The rent was crazy expensive at almost £90 per week in homeless accommodation, so by the time it was time to move I was in quite a bit of debt.

I moved in on the 16 of October 2014 and had no idea just what was about to happen just a few months later. By January 2015 I fell gravely ill and was hospitalised with the biggest Crohn’s flare I had ever had from contracting a bacteria called Campylobacter. From January until June 2015 I spent those months in and out of hospital and at the beginning of June, I had surgery to have a stoma placed and my entire large bowel removed due to sepsis. It was stressful as I wasn’t in my new home for very long at periods of time and when I was able to go home, I spent some weekends at my mums just to avoid having to do anything tiring like changing my bed or lifting a kettle. Again this repeated in September where my rectal stump had become septic and I needed that removed too. The operation was the easiest one I have had and I got home just three days later.. until the wound got infected.

For a few years I struggled with the infections, losing blood, vomiting, pain and fatigue. My home changed over the years from colour, furniture, flooring etc but I really struggled to have a feel of the house being ‘home’. I struggled financially and was never happy with what I had because it was all I could afford at the time and I wasn’t able to upcycle anything due to being so poorly. However now sitting here in my comfy, cosy bed on a lovely Autumn night I am really beginning to love what I have achieved. Most things have been left to break before replacing them such as kitchen essentials. Slowly I have been replacing the old with the new and making it fresh and bright. All I have to replace now is the dressing table! As it is fast approaching to winter the garden will have to be redone nearer summer time.

I have paid all my debts off that I had from back then but of course we know that life is not cheap!

I have also learnt that you really don’t have to spend a lot of money to enjoy things in life. A wedding doesn’t need to be so expensive that you spend the rest of your life paying it off or for a honeymoon that will really break the bank. Special days, memories and moments can be priceless and cost not one penny. When you are chronically ill, the littlest things can mean the most and we appreciate life as it is.

Being in a happy home that feels like home is something not everyone is so lucky to have and I think that makes us appreciate it even more.

Chronic Illness Blogs, Personal Blogs

Self Care

Self care is so important especially to those who are chronically ill. Looking after you can be hard when you struggle just to do basic tasks from fatigue.

When able, take some time out for you. Do a facemask or have a soak in the bath with your favourite bath bomb. Watch your favourite films or shows and eat the crap you have been craving! Chill out time can also benefit anxiety if you have been feeling on edge or suffering from panic attacks. Working on self care can also help you try to figure out what to do when a panic attack occurs.

For my self care routine (when able) is to sit on my bathroom floor with a basin of warm water, bodywash, netflix on my iPad and shave my leggies. I then wash my face, exfoliate, cleanse, tone and hop in the shower and I come out not looking like a hairy yhetti! Ha ha. I will also change my bag if it is bag change day and apply moisturiser to my legs, all of these combined makes me feel so relaxed. I always worry about my image and I can’t stand having hairy legs but I struggle a lot so by the time I’m able, they look dreadful and my self esteem drops to an all time low.

Pain, fatigue, sickness and all that negatively affects you with an illness can be a struggle. It is not glamorous and it can make you feel shit. A little bit of pampering goes a long way in terms of making you feel better mentally and can help to give you a confidence boost. Nothing beats feeling fresh, getting into clean pyjamas and relaxing in bed even when in pain.

Hoping everyone manages a pamper some time soon and remember to look after yourselves.🖤

Personal Blogs

10 Things You Didn’t Know About Me!

I’ve been blogging for almost 4 years now and I wanted to share some things with you all that you may have not known about me! Of course if you know me IRL then these things will be of no surprise to you!

So here are 10 things you didn’t know

  1. I am a serious gamer and love to play on PC and XboxOne including League of Legends (I have a serious figure collection which has taken up an entire shelf in my bedroom cupboard!), Spyro (remastered), Neverwinter, Gears of War, Diablo, Pokemon and Skyrim.
  2. I have more unicorn things in my home than a child (my bedroom is full of unicorn items such as bedding, lamps, tealight candle holders, teddies, pyjamas, jumpers, onesies, ornaments, evening tea things, slippers, socks, pictures, canvases and hot water bottles. My feature wallpaper is unicorns!)
  3. I absolutely adore hard house music such as The Tidy Boys, Anne Savage, Lisa Lashes, Amber D, Ben Knight, Ben Stevens, JP and Jukesy, Andy Whitby, Mark EG, Paul Maddox, Tony De Vit (a legend who was taken too soon) and technikal.
  4. I LOVE to eat digestive biscuits with dairylea cheese and jam (people think this is strange or weird but it tastes amazing!)
  5. Aside from this blog, I also blog for Comfizz, Ostomy Tips Magazine, Respond Healthcare Ltd and Trio Healthcare!
  6. I can have the worst day possible with health or mental health and fake my pain with a smile.
  7. I worked in the care setting from age 14 up untill surgery and had planned to do my nursing. I thoroughly enjoyed it!
  8. I hate hugs. Period.
  9. I can play various musical instruments, sew and when I was able, my art work made my family proud.
  10. I am super ambitious. When my granda passed, it gave me passion and ambition. Still to this day I strive to do great things and make him proud. His passing taught me that life is too short for the same day in day out things. He always told me I would do great things and had talent.

I bet most of you are questioning what on earth those games are that I play from number 1! So if you feel intrigued about League of Legends, head over to twitch or youtube and head over to Gross Gore‘s channel or Bunny Fu Fu and watch their streams!

But the real question is… do you love to eat digestives with dairylea cheese and jam? What are your weird combinations with food? 😁

Personal Blogs

Where It All Began

For day 7 of the Crohns and Colitis Awareness Week, I saved my journey through life, before diagnosis, during and after till last. The picture above is myself and my auntie when I was just a baby.

As a baby, I look healthy and what most babies look like. When I grew to the age of almost 3 years old, I started to develop unusual bowel habits which had my mum bringing me to the doctors quite often. My problem was severe constipation and it caused me a lot of pain and my mum many sleepless nights! As I grew older my bowel issues settled down and I was as normal of a child as could be (although my obsession with unicorns was HUGE!) At the age of 6 I was sexually abused but I had no idea at that age just how serious that “thing” was that happened to me. At the age of 11 I had opened up to my mum one night after watching a programme where it had happened to young girls and I had clicked that that’s what had happened to me. This is where my issues began again, lasting a few months. A few years passed by and at age 13 my issues had started yet again when I had my first period and loosing my mums partner at the time to suicide.

Looking at these photo’s, again I look like your average 14-17 year old. At each of those ages, I was battling severe constipation or severe diarrhoea, fatigue, infections, pain, night sweats, insomnia, bloating, passing mucous and blood, sickness and weight loss. I also battled every day with doctors, teachers and my mum about how I wasn’t feeling well to be told I had something called IBS (Irrital Bowel Syndrome.) For 4 years I fought these people and symptoms, then during that time my mum soon realised the doctors were wrong after looking up my symptoms, and faught along side me too.

At the age of 17 I was diagnosed with severe active Crohn’s Disease and Ulcerative Colitis after a doctor finally referred me for a Colonoscopy to the Gastroenterology department at Aberdeen Royal Infirmary and I was prescribed oral steroids immediately with a print out of my colonoscopy results. They also took biopsies and sent them away as protocol and that confirmed my diagnosis. In these 4 pictures I had been in and out of hospital admissions but I tried SO hard to continue trying to live my life but that always came with a price – the constant cycle of having to admit defeat of loosing jobs, leaving college twice, loosing friends, exhaustion and then trying again, picking up where I left off. The top right picture is after a long course of steroids where I developed “Moon face” and I was bullied terribly on social media by people who were once my friends because of how my face looked. It completely destroyed me.

By 2015 I had tried every medication available to get my disease under control to no avail. In this photo, my mum took me out from hospital on Day Pass to Cosmos restaurant. For weeks I had been going to the toilet up to as much as 70 times a day passing mucous and blood. During the day pass I had to run to the toilet quite a lot and I was in pain, however I did the best I could to enjoy the day out. The day after I took a terrible turn and felt the worst I had been with pain, sweats and sickness. It was then decided by a consultant in the Gastroenterology ward that I needed surgery within the week and had (my now) surgeon come to see me, which I am extremely grateful for Dr. McKinlay who made that decision. I went under general anaesthetic for a Colonoscopy, Endoscopy and recieved botox injections for 3 fissures in my rectum to try and enable them to heal, this was one of many times I was put under for tests. The injections failed and I became worse and worse untill the point where one day I was so fevered concerns for my health began by nurses and consultants. One of the stoma nurses came to see me and marked two “x’s” on each side of my stomach for where the stoma would go and covered them with see through films and I was given a stoma bag and a very brief leaflet (however it didn’t go into much detail, since then I do believe they have been updated) to look at. Just two days later I had declined in health much more and my surgeon had come to see me after nothing was showing in my bloods or observations (blood pressure and pulse) that anything was wrong but he was sure I had gotten sepsis. I had bloods taken from my wrist which had confirmed this along side him examining my stomach and I was then taken into emergency surgery the next morning to have my stoma done!

Nurses and the anaesthetist struggled to wake me back up after an 8 hour surgery and my mum and dad were brought in. When I woke up my mum had told me she was so worried because my skin was grey and didn’t think I was going to wake up! Since then I have had multiple surgeries, a surgical termination (due to poor health), many scans, further diagnoses of illnesses, defiencies, an iron infusion, supplement drinks, medications, hospital admissions and failed friendships and relationships. However I have also had a great online community support me! I have gained friendships and attended charity balls – the Purple Wings Charity ball in 2016, the Get Your Belly Out ball in 2017 and then the Purple Wings Charity ball in 2018!

2018 has been a year full of ups and downs – worst down being friends turning out to be toxic, violent and threatening and the best ups; that I got engaged to my boyfriend who also has Crohn’s Disease and a permanent Ileostomy and I got a fantastic tattoo! I have been blogging sharing peoples stories, helping people on online support groups, raising awareness in newspapers, blogging for stoma companies, writing in an ostomate’s magazine, raising money for Cure Crohn’s Colitis, raising money for The Purple Wings Charity, raising awareness of local foodbanks and donating to our local foodbank and I will also be gathering supplies for the homeless in Aberdeen, all of which, really keep me going.

As it comes up to Christmas, I reflect on my health, this mostly awful year and just how much I have been through but also what I have over come. I have also had to let family and friends know that due to my health and unpredictability I may not see many of them this year and it will be the first year where I am not able to do that, and it’s hit me hard mentally. Many do not know of what is going on apart from what I choose to share on social media. I am still waiting to see a Urologist, Dietician, Rheumatologist, IBD Consultant, have a pelvic MRI scan and then I also need to have my iron checked regularly as it keeps dropping and have my b12 injection next week which is every 3 months. I’ve also just started new medications such as Pregablin and Quinine which are helping very slowly. My main issues however are mobility due to my feet swelling like balloons and going really hot, sickness, pain, migraines, infections, bloating, my swollen knees, sinus pain and facial swelling to the point I cannot talk and dizziness.

I’m very lucky to have people around me who support me even if some don’t understand. I know that despite the odds of my health, I can still enjoy Christmas watching christmas films with my fiancè and the dogs and be grateful to not be in hospital and just to be alive!

Most importantly, I cannot emphasise enough just how helpful it can be to see a positive in all that is happening. It may only be one positive but that is still something to hold onto and keep you going; to keep you fighting! We may be disabled, but we are still people!

Chronic Illness Blogs, Personal Blogs

You May See Me Struggle, but You Will Never See Me Quit!

Isn’t it weird that you remember one day you woke up and became ill yet you don’t really remember that exact day? You remember starting to gradually feel worse, watch your weight drop, the toilet trips become more frequent followed with more blood loss but again can’t remember the exact day when it got worse? All I remember is my life before being ill then my life after getting ill and no inbetween and it never really occured to me that one day I would ever get unwell. I know what you’re thinking.. every blog you read from a chronically ill person states this, but it really is so true. Noone who gets ill ever did think that they would end up unwell for the rest of their lives and that is certainly how it was and is with me.

I didn’t realise what being strong or brave truly was untill I got poorly. I had no idea about needles, cannulas, scans, stool and urine samples or even what swabs were! (oh boy don’t I know ALL about them now!!) I didn’t know what weight gain drinks were or that weight issues were so important to my journey and how up and down it could go. See, these things have no relevancy to someone who is well/healthy yet has such a huge relevancy to someone who isn’t in such good health or going through the diagnosis part of their life.

At 13 my issues started yet I didn’t know the severity of them untill I was 17 and just what path my life journey was going to take back then. Sometimes I would be going to move my bowels non stop and other times barely at all. This continued untill I was 17 and for 4 years I was at the doctors one or sometimes four times a week just trying to get some relief! As time went on the doctors visits become more and more, my weight dropped more and my pain got worse. Everytime I woke up from the little sleep I got I said to myself “surely this shit cannot be real. It just can’t be.” But it was and it wasn’t a dream, more like a nightmare.

Eventually at 17 I got my final diagnosis after 4 years of not knowing why I was always being sick or on the toilet but how can I even describe the feelings of that day? I felt relief that there was something wrong with me and after all the doubts of doctors and people, I could finally prove to them they were wrong. The other part of me was scared, wondering what this meant for me and my family, our future.. my future.

This is the part that was hardest for me. Medication. Never once did I ever think to myself that i’d have to be on Chemotherapy drugs for a severe disease. Not once. As a chronically ill young woman with no understanding of what these drugs really did, I gulped them down with some milk or injected them into my stomach hoping that the next one and then the next one would finally be my life line. That day was never coming round. My teenage years were spent partying with old friends who I imagine mostly now have full time jobs, children, their own home, a car or are married. I would struggle from time to time but I would push myself to enjoy my weekends at house parties or marquees and even though those days are just but a distant memory, it’s those days I miss. School days were mostly spent in bed or on the toilet or spewing in the toilet nearer the age of 16/17. The days I did make it to school were pretty similar but the worst day I had was when my stomach bloated so much that school kids would joke that I was pregnant and it was humiliating.

At the age of 17 just before my diagnosis I had managed to convince my Mum to let me leave school and move on from that chapter of my life in hope to start a new one.. but I soon found that that was the beginning of my rollercoaster ride with IBD. I tried college twice and I failed to attend most days because I was constantly on the toilet or really unwell with infections which is the main side affect of these Chemotherapy drugs. I was gutted and again I never thought college was something I couldn’t do. Mentally I was motivated to do nursing and help others who suffered all bowel related issues, physically it was impossible. The journey there was just over an hour and the same on the way back. College days were spent in the female toilets shitting for my life, it just kept coming and coming out till I was horrified as to how much could still be inside my tiny little body!

The second worst thing that I never thought would happen to me? Being a target for bullies or loosing friends due to being ill. Still to this day people think it’s acceptable to treat me like dirt because I am disabled and i’m an easy target. Shame on those who have and do it now. The ‘friends’ that left or treated me like garbage because I was vulnerable. When I was young I never thought people would disappear because I would be unwell. I never once thought people were so cruel to disabled people with sly comments or digs at you for using a disabled toilet. Social media used to be the worst and it still can be for all chronically ill and disabled people. You wouldn’t believe some things you read about stomas or having IBD. One guy i rejected at a place I used to work at as a bar maid one time, before my surgery, even wrote on twitter that my picture of me with my stoma bag sunbathing “put him off his food and was disgusting” HEY SORRY MAN NOT LIKE PEOPLE ASK FOR YOUR UNNEEDED OPINION, JERK!😁. That’s what it hardest for chronically ill people and ostomates. Acceptance. Let me tell you now, acceptance comes from within you. Not anyone else. You! You don’t need anyone else to accept you for you to feel accepted in life or to tell you who you are or who you cannot be!

I am so certain of one thing though. That’s my inner strength. I’ll never give up and yes I do struggle even if I do look well via facebook or snapchat pictures. Yes I am in pain every single day even if I smile. Being ill with multiple conditions has really taught me that you should never expect respect from other people and not everyone wants to understand or treat you well. So, that taught me to be grateful for all the support and respect I do recieve unexpectedly and it’s nice. I feel free of all the negativity I had from people in the past. I am still struggling with people such as neighbours or family or people I know that just don’t understand and can be really disrespectful to me.

They say that until you get it, you don’t get it. It’s such a true statement because you will never truly know about struggling to do the basic of tasks untill you become that person who is struggling.

Illness will never win even when i’m knocked down. It’s gonna be one hell of a ride but i’m already halfway there and still ready for the road ahead.🖤

Chronic Illness Blogs, Personal Blogs

3 Years Since Rectum Removal!

Hi everyone! I finally have some good news to share on my open perineal wound from where my Barbie Butt is! (Which if you don’t know what this is; it’s where my boozum used to be!)

Ever since the rectal stump removal, I had been having recurrent infections in the open wound, making the healing process next to none. For a while now it’s been really sore and bleeding often however these last few times it’s been without any puss. I thought it was due to another infection brewing however after examination, the wound is no longer a firey red and seems to be coming closer together to a nice fine line! Obviously it’s extremely slow but to me the littlest of progress is a HUGE stepping stone for me, it actually kind of feels like an achievement as I have a constant battle war with my body.

I also wonder due to the amount of antibiotics I have been on this year for numerous infections such as tonsillitis (8 times so far, and with the condition is have that is Chronic Sinusitis I get constant sinus infections) that they have enabled to keep infection away which is handy!

I still have a number of sinuses in there (little channels or openings that grow due to pockets of fluid needing to escape the body or crohns disease) which still leak and that can be quite painful when that happens. These sinuses make the healing process 100 times slower than what it should be due to that leakage.

I know many IBD sufferers receive the operation to make their stoma’s permanent and find not only the operation it’s self terrifying but also the life long journey of no long having a rectum hard to come to terms with. Many of my followers and members of the IBD community know that having my rectal stump removal was due to having sepsis for the second time that year, due to severe Crohns Disease and Ulcerative Colitis. Therefore it wasn’t really a choice as such. BUT.. and a big BUT… I wouldn’t change it!

The thought of having a reversal after what I went through with active disease in the stump is a straight up no chance! I couldn’t and wouldn’t ever go through that ever again. Many people suffer the pain of active disease in their rectal stump due to fear of the operation and never having the chance of a reversal. I can tell you that from my experience, it’s the best thing that ever happened to me, along side my ileostomy. I no longer have to run to the toilet or spend hours being forced to push out blood and mucous by my body and sit with a sick bowl spewing at the same time as the horrid fluids passed into the toilet.

Life with a Barbie Butt does have it’s down’s but certainly more up’s! You will spend most of your money on sanitary towels as you go through the healing process and multiple shopping trips throughout the years for new underwear but isn’t that a good excuse to buy new underwear?! (Usually I always end up in the pyjamas section afterwards..🤫)

My tips on recovery;

  1. Buy lots of sanitary pads.
  2. Have an ice pack available to wrap up and place on the wound.
  3. Have a hot water bottle at hand to help ease the pain (donot put onto the wound under clothing!)
  4. Make sure to take pain relief.
  5. Have dioralyte to keep hydrated.
  6. Rest plenty and don’t lift anything heavier than a kettle (recommended by the surgical team.)
  7. Don’t use ANY products of any sort on your open perineal wound unless it has been prescribed by your surgeon or stoma nurse.
  8. Have baths every few weeks or months with salt.
  9. Only rinse the wound with water in the shower once a day (a saline rinse with a cannula works just as good.)
  10. Do not, I repeat, DONOT use a piles donut cushion on your toilet or at all!
  11. If you are in full or part time job, take atleast 3 months to recover before going back.

I hope my tips can help you or someone you know. Please remember that the healing process really is different for everyone and many heal really quickly, others can take years to heal. Pace yourself and rest!

Any questions about the surgery or life with a Barbie Butt please leave a comment and I will get back to you!

Personal Blogs

Crossing my fingers.

Hello all! What a crazy couple of weeks it has been! What have I been upto? What news do I have to share? Possibly something positive?! Continue to read to find out!

Firstly I was admitted into hospital a couple of weeks ago with a vasculitis flare and crohns disease flare along side arthritis making walking and basic movements extremely difficult. It was a very long night and we got home about 4/5am (yay! My bed is my faaaaavourite place!)

A week and a bit later I had my appointment with my consultant (yep my actual consultant and not someone else woohoo!) As always he was fantastic and we discussed everything that has been happening and how we progress as a team, getting things looked at and a plan in place. If you lovely peeps follow my blogs or my Instagram and/or Facebook page @glitterygutsx you will already know whats been happening with my health. If not, go ahead and check them out! But I do suggest a bag of crisps or a cuppa whilst reading!

So what’s the current situation with me? I’ll put it simply- active crohns disease, active Behcets disease (vasculitis), arthritis and mobility issues, bowel motility issues, extreme weight loss, horrendous pain, bleeding, an incisional hernia and fatigue. It’s a long list huh? You must wonder how I cope, i know I do. Be assured I am not full of magic where I’m magically able to cope every day and never be sad, frustrated or fed up. However I do like to think of myself strong like a superhero in the sense that I can fight what comes my way on the OK days!

The current plan: shit loads of tests, needles and all that comes along with being chronically ill. Many of you who suffer know the drill! Barium Small Bowel MRI, blood tests, Calprotectin tests, Pill Camera etc. I have been referred to several other clinics to see consultants about my weight, Behcets Disease and Arthritis/Mobility issues. I have had some blood tests come back with some things not being OK so that’s something I need to discuss with my consultant when he is able to as with some illness in my family history it has me and my family quite concerned. However usually it’s never anything too serious so hoping that’s the same for this time.

Now this is the good part (I guess?!) If these tests show signs of e.g active small bowel crohns or anything else wrong with my small bowel then I can go onto chemotherapy drugs such as Stelera or trial drugs which will have been approved and more on the horizon! Obviously I’m shit scared of injections but to think that I could hit remission with not only my Crohns but also Behcets and Arthritis; it’s like a miracle! Obviously there are side affects but not every person gets them and they do vary. I have already decided that if I even get into a place where I can manage these conditions, that the first thing I want to do is go to a festival such as T in the park or even a small festival! Within the UK of course. I also imagine what it’s going to be like if my perineal wound where my rectum used to be heals- when I go swimming for the first time! The smell of chlorine and the feeling of warm water and being able to stretch my muscles and get fit again.. there are just no words that can really describe how amazing just the thought is!

So, now I wait for my appointment dates whilst starting to raise awareness and sharing people’s stories through my Facebook page @glitterygutsx with videos of people doing intravenous and introvascular medications (subcut.) I’m hoping personal and inspirational videos of people injecting medication at home or people documenting their time having IV medication can help others who in future may have to go onto that medication, people who are in the middle of the medication and need more confidence and support to do either of them. It also gives me great joy in sharing these stories with the world to let everyone see these brave people!

Wishing everyone well and if you would like to share your story, all information is on my Facebook Page and Instagram @glitterygutsx ! 😁

Personal Blogs

Thankyou.

I wanted to write a blog thanking people individually for all the support, love and advice I have had over a very hard few months. I didn’t know when it was the right time or how to word it. After last night’s scare of suspected sepsis it hit home just how much of a burden I can feel whilst in hospital. Possibly that I take the little things people do for me, for granted.

My first thankyou is to my Mum and Dad.

The endless nights over the past 10 years of sitting in hospital for hours on end till early hours of the morning. For taking me to hospital and attending appointments with me. For helping to fight my corner when so many health professionals have not listened. For fighting with me to get my diagnosis for 4 years. Holding my hand when I get injections or struggle with pain emotionally and physically. For financially supporting me through hospital admissions and surgery or when my clothes have gotten too big and I need pyjamas (still on going with weight loss and lack of clothes that fit just now!) For being there for all the times I’ve had a broken heart from friendships that broke me and relationships with men who left me at times of need, but there you were always there. For the hugs that sometimes I don’t like ( I don’t like to hug really lol) and holding me when I cry. For taking me out of the house from time to time or looking after the dogs and the house when I’m not here to do so. Most importantly for always being at the end of the phone when I need you.

My next thankyou is to my fiancé Jaimie.

Thankyou for coming into my life and showing me love and support. For breaking through the wall I built so high from all the hurt I’ve been through and to see that wall should never have been there. For helping me get dressed or making me cups of tea! Or when I am unable to walk to the toilet, you carry me there. For taking me places on really dark days and making sure I’m always okay even if I’m not. For being a great daddy to the doggies and taking care of them when I need to nap or shower. For sitting by my side during hospital stays and surgery till the early hours of the morning when you have had very little sleep and worked that day and have work the next day. Thankyou for loving me every day when I cannot love myself. For the surprise flowers and my favourite treats. Thankyou for holding my hair back when I vomit through silly hours of the morning and taking me to hospital appointments. Thankyou for showing me that a future is possible for us. But mostly I am thankful just for you being you.

To Louise and Rachel.

Thankyou for coming into my life and giving me that kick into blogging again. For supporting me through the most difficult time I have ever experienced in my life and always checking up on me and being there for me. For the advice and information you pass onto me about stomas and life in general. For guiding me into the right path when my anxiety had left me kafuzzled! For having me be a guest on your show and giving me a purpose again. For the girly chats about random sh!t. For being like another mother and auntie to me in one.

To IBDSupheros, The Colostomy Association, The Behcets Syndrome Society, Chronic Superstars, Chronically Successful, IBD Road to Remission, F.I.S.H.Y.S, IBD and Autoimmune Warriors.

Thankyou for being great Facebook groups where all sufferers can talk to each other, make new friendships, get advice, support and everything else inbetween! For supporting my blog and myself through a very rough time and giving me feedback on topics and taking part in my blogs. For fundraising, events, blogs and posting random funny crap that I am positive makes many people laugh!

To all friends.

Thankyou for always checking in on me and making sure I’m ok. To listening to my moaning and speaking crap at stupid o clock when I can’t sleep. For taking up that space in my life that was empty, when ‘friends’ from my past had left. For standing up for me when appropriate and supporting me through awful break ups. For the advice, love and random chats about poop or what it would be like to fart again! For cheering me up on bad days and for helping me fight through days where it just felt dark.

To my babies.

Thankyou for being portable hot water bottles and breathing dog breath in my face! For the kisses and cuddles I get daily and the spooning on the sofa or in bed. For the days when I am unwell and you never leave my side and watch over me. For the little stories you tell me whilst I am on the toilet (you always pick that time to do it!!) And reply to me when I say things in reply to the little groanings and squeaks! For making me feel like a mum, because even though you have fur and waggy tails the love i have for you is as if you came from me.

To my GP’s, Doctors, Surgeons, Nurses and Specialists that understand my conditions and complex issues.

Thankyou for seeing me at short notice or for calling me back on the same day and don’t judge me. Thankyou for not being all the same and not presuming like many health professionals that just because I look OK means that I am OK. For saving my life multiple times, had it not been for many of you I would simply not be here today. For helping me medically and emotionally with needles, pain, sickness, swelling, blood loss, fainting and all that comes along with my conditions. For giving me appropriate medications when I need them. For giving me advice and explaining things to my family. For holding my hand whilst being put to sleep or having a sore injection in my butt or stomach. The most important thankyou is for helping me get my diagnosis’.

To all others who I meet in support groups, through my blog or my Twitter.

Thankyou for helping and advising me when I have no idea what to do or what to expect etc. For sharing your stories and experiences to help others. For being brave and despite your own issues, being there for me and others who are unwell.

To my best friends who I have met through gaming in the Discord cult Gameplay Church #GPB.

Thankyou for the long talks about random crap and mostly about League of Legends and bands and all sorts! For trying to understand my illnesses and showing compassion and support. For making me laugh when I’m down in the dumps. For the funny moments of toxicity in a game and saying funny sh!t. For supporting me and jaimie through a hard time and keeping us going! For making us all in there feel like family. For the nickname Moana because it is my favourite film and always playing the songs from it and singing along! And thankyou for giving me friendships which give me the chance to get away every once in a while to visit!

To all other people who help in many other ways.

Thankyou. Thankyou for a roof over my head, running water, being able to buy food, keep my dogs healthy and emotional support. For the financial and all other types of support. Thankyou to the NHS that I am able to get stoma supplies and medications, scans and tests, doctors nurses and all medical professionals (even if some are not understanding!).

And to all the people who hurt me, left or made life harder for me.

Thankyou. Thankyou for breaking my heart. Thankyou for leaving and showing/revealing the good people. For letting me see that life is better without you. For giving me life experience and lessons and to learn from my mistakes. For the times that any one of you were helpful at one time. For shaping my life into how it is now and making me who I am. For treating me the way you did which has left me strong and able to not put up with crap from anyone. For giving me a back bone and to be open and honest. For giving me daily reminders why I am glad you left. Thankyou for taking your negativity elsewhere and making me free from it.

Thankyou to all my readers who continue to follow and read my blogs!

And thankyou to those who share their stories on my blog and for taking part in stories!