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

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!

Awareness, Mental Health Blogs, Personal Blogs

What It’s Like To Be With Someone Who Has OCD/ What it’s Like To Be With Someone Who Doesn’t!

It’s no secret that I have OCD nor am I ashamed of it or embarrassed. I actually have, over time, loved having OCD. Why? You may ask; It gives me some peace of mind when I am able to get things done such as the ironing, having a clean washed sofa or a freshly cleaned floor. It gives me real satisfaction emotionally. When people use the phrase “I’m bored of waiting it’s like watching paint dry”, I literally could sit and stare at a freshly painted wall and have so much peace and happiness. It’s not something easily explained but it feels great looking at something that’s so fresh and clean.

One thing I do wonder however, is what it is like being in a relationship with someone who has OCD. I have never discussed this with my partner before. I sit here on the sofa whilst he is gaming and I am watching The Notebook on Netflix and away to ask him what it is like for him. Hopefully it’s not all bad answers!

“How do you find it with me having OCD?”

“Honestly, it doesn’t really bother me. Sometimes it can be frustrating when I help to do things when I’m over e.g hanging out the washing- you like it a certain way and I always forget and you take it all down and hang it all up again.”

“Or when I do the dishes in the sink and you hate dishes being done in the sink and like them done in a basin so I have to take them all out and put them in a basin otherwise you get really unwell.”

“But really it isn’t so bad. The house always looks so clean and tidy except when you are more ill some days and infections, the Crohn’s Flare or fatigue makes it hard for you to even walk, but even then it’s never bad.”

I think I’m quite glad that my partner isn’t too badly affected by my OCD however being with someone who doesn’t have OCD can be extremely difficult for me;

I have to do things a certain way and in routine. Certain days for certain things. If I’m unable to do things I get extremely stressed or if I’m really unwell the littlest of mess will aggravate me and I get really moody and stressy!! I find it infuriating with myself that because things have to be done a certain way that when my partner does help me that if it isn’t done my way then I have to feel the need to correct him and re do it. I get annoyed at myself.

Sometimes I have had panic attacks because my anxiety kicks in from the OCD and the days I feel like I’ve failed to do even the simplest of tasks. Many days I get so caught up in cleaning that I make myself unwell for days because I try to get as much done as I can to the point where I’m crawling and crippled by pain- baring in mind that even doing a load of washing and then taking it out or hanging it up causes me extreme pain.

I always make sure to de weed the garden when it needs done and I do my best to make my garden pretty so if I need air from being sick or feeling sick that is relaxing and helps me calm down. But again my OCD makes me seriously ill and unable to cope with the pain I have most days that even finding a cigarette tab in my garden sends me into a fluster. At the moment I am constantly finding them littered in my garden and I spent 30 minutes just picking them all up a few days ago resulting in me not being able to cope with the pain and I’ve lost sleep. Over the past few days I’ve had around 11 hours of sleep possibly even less, meaning each day is a real struggle with pain being intensified by fatigue which then brings on sickness.

When I do have panic/anxiety attacks triggered by OCD or not I have extreme insomnia that can last for days sometimes weeks. So it is a vicious circle if it isn’t a good spell of OCD. I think that, really, the best thing is knowing other people who have OCD. So many of us mostly suffer from the mental health condition but I also believe that it brings great joy to people’s lives too. It’s a love hate condition and I found that accepting it and dealing with it each day was a much better option for me rather than continuing antidepressants. Due to suffering from anxiety and depression over the years, I have been on many and the only time I have benefited from them was when I was in a bad depression which led me to self harm. I’ve been free of that dark place for just little over a year now too which I think OCD has helped me out of on top of the treatment.

If I could sum up OCD I would say it’s taking the good from a bad situation and taking the bad from a good situation- there are always going to be pro’s and con’s. You can’t always garuntee it to be a good day but you can try to deal with as best as you can.

Awareness, Chronic Illness Blogs, Personal Blogs

6 Years Ago I Was Diagnosed!

It has been 6 years today, that I had my first colonoscopy and I was diagnosed with Crohn’s Disease. It was the 15th of August 2012, at age 17.

The picture above is me just a few months into Steroid treatment and I had Moon Face. I was away to a fancy dress party and trying to live my life as normal as possible, but little did anyone know I wasn’t living- I was existing. I spent 98% of my time on the toilet or vomiting in the sink. I was constantly passing blood and mucous and passing out on the toilet where my mum would find me early in the morning when she would get up to get ready for work.

4 years previously to this is when my issues began. I would have severe constipation or severe diarrhoea and vomit from time to time whilst experiencing the worst stomach cramps I had ever had. These issues would be worse when I was on my time of the month but I just put it down to that, and so did my doctors. As time went by, my cramps, vomiting and bowel issues got worse and worse. Each GP I seen told me I had IBS, bad periods or Piles. My mum and I knew it was much more than this but no-one wanted to listen. After 4 years they finally took some blood tests and one blood category called CRP came up high, which indicates inflammation in the body. I was referred for a colonoscopy and had to sit tight and wait for my appointment to come through. Months went by and I continued to try at life- applying for college, trying to work (missing loads of shifts and being sent home being unwell) and trying to maintain friendships. I continued to live on the toilet and vomiting constantly, having constant tonsillitis and glandular fever, ear infections, urine infections and sinus infections. Months of being on and off antibiotics and going back and forth to the GP practice.

The day finally came that I got an appointment for a Colonoscopy and I was absolutely terrified. I previously had a telescope with a light on the end of it inserted into my rectum by a GP who was so rough and forceful that she had made me bleed and scream in pain- but she didn’t care, she continued against my own will. I thought to myself “What if that happens again? ” “What if the pain is too much for me to handle?”. I spent every day leading up to the Colonoscopy in tears. The night before I had to drink a powder dissolved in water called Picolax which was in preparation for the procedure, so the bowel was clear. It was absolute hell, the first drink nothing happened and I had decided to eat 1 pringle- BAD MISTAKE! I was running back and forth to toilet even more than usual, the pain and the sweating was intensified. I made it through the night and the day of my colonoscopy arrived. My Mum and Dad accompanied me in the waiting room, with a hot water bottle on my tummy crying due to pain and fear of what was awaiting me.

“Alannah Simpson please” a nurse shouted, I looked at my Dad and I was terrified, i hugged him and then asked my Mum to come in with me. As my Mum and I went into the consultation room I was asked several questions and then asked to change into a hospital gown. I was then taken into a room with lots of equipment and machines surrounded by nurses in green uniforms. I felt like I couldn’t breathe and the tears streamed down my face. I kept thinking about blood and pain, the cramps intensified as I lay down on the bed. The nurses put a needle in my arm and gave me pain relief along with sedation and I felt quite groggy and fuzzy, like when you have drank too much on a night out! I begged for my mum to stay but she wasn’t able to stay, however the nurses were so lovely and really looked after me. They held my hand and then the consultant came in and began to insert the long camera into my rectum. Being completely honest I didn’t really feel it, it was more uncomfortable. As he went further in I had asked where it was, so he pushed it onto my tummy and said to put my finger there and I could feel the camera- I was completely fascinated! As I lay there I watched the screen and the consultant and nurses were talking about the findings and took biopsies. I didn’t really understand what they were saying, but what I did understand was what I was seeing on the screen. My large bowel was red raw, ulcerated and full of puss! I was horrified and asked what the hell this was. The consultant told me it was positively Crohn’s Disease and they were giving me an emergency supply of steroids to try and take the inflammation down.

I spent an hour or two in recovery and then I was able to go home. I was given a print summary of the procedure and report of their findings with me. A few days went by and I took the steroids and felt no different, if anything I was starting to feel worse. I went to the GP and was admitted into Aberdeen Royal Infirmary when the old wards were there- 13 and 14 which were for each gender. I had never had a cannula in my life, I had doctors and nurses coming round asking me questions and saying things I didn’t understand. That day was a blur. The next day I had an x-ray and an MRI and I was told I had a blockage. The treatment for this was more laxatives and stool softening tablets- it was hell. The ward was awful, being only 3 toilets for all patients in the entire ward. I spent most of my time either crying in pain in bed or crying in pain on the toilet, when I could get one! I seen things no 17 year old girl should see. I seen old women who were hooked up to IV bags of blood, some connected to heart monitors, many who were incontinent and had tried to get out of bed and covered the floor in bowel movements. Due to me being over 16, the children’s hospital wasn’t an option and I was months away from turning 18.

I was lucky that my Mum and Dad visited me daily on the evenings but when they left it felt like my world was crashing down. I couldn’t stop crying, I felt so alone with no-one to talk to in the ward who knew what condition I had or who was even close to my age. I was started on two treatments called Pentasa and Aziothioprine and had an allergic reaction so I was then moved onto Mecaptipurine which I was OK with. After that week in hospital I was able to return home and tried to go back to college but it was far from easy. Previous to the admission I spent most of my time in the college toilets. The other students in my class would make fun of me and say I was ditching class. They would say this to the tutors and they would ask where I had been and I explained that I had a colonoscopy soon. When I returned I provided them with the letter and they gave me so much support. The students in my class were still constant at keeping up with making time hard for me and my friends in the class- writing things on Twitter about us. Eventually I had to leave. The stress of being il, having insomnia from the steroids, the work I had to do at home to try and catch up and the stress these people caused for me. I hit depression and saw no way out. Things at home were bad too, I was in a seriously bad and toxic relationship where I was mentally and physically abused. I was too exhausted to fight back, I was too scared to tell anyone or walk away in fear that I would be even more alone. I could only see one way out and that was to be dead. I took a box of paracetamol and downed them with alcohol and curled myself up into bed and hoped it would work. It didn’t. I woke up and vomited into the toilet for hours. I told nobody. I felt so much guilt so much grief for the life I couldn’t have and I had no idea what the future held for me. I felt like a burden to my family and friends. I then lost friends and had to deal with a miscarriage- I felt useless that I couldn’t even carry a child so I told people I got rid of it to save myself the embarrassment and shame.

Time went by and more and more people left, I tried college again the following year but I was in and out of hospital admissions and had to leave. I decided to try and work but that didn’t work out either. My boss and the people I worked with weren’t understanding at all. I went to see the people head of the care home and gave them my notice and left. I gave myself time and tried another job but that too ended up with me being fired and not given the pay I was due for the work I had done. So I moved onto another job and then became homeless and slept on my dad’s floor for a while untill homeless accommodation was available for me. Once I moved into the homeless accommodation bungalow, I got a job at a local hotel as a barmaid and waitress. I then applied for a second job at another local bar for the weekends to earn more money as the rent for homeless accommodation was £90 per week. I was instantly fired from the hotel because they had issues with the owner from the other bar. I then applied for a job as a carer at another local care home and I loved it!

My health continued to be a burden to me and caused me pain but after loosing the job as a carer from my crohns flaring again and a few months course of steroids I hit remission. I was then working weekends at the bar and actively looking for work anywhere but nothing came up. I was determined to catch up on lost time being a teenager and experiencing nights out with friends. I went to house parties and went to a night club where my friend Chris was dj-ing with hits from my favourite djs – The Tidy Boys. In October that year I was given a permanent home from the council and began to settle in whilst working as a bar maid and life seemed to be OK. I met someone who I really liked and over time we spent more time together.

Little did I know what was brewing inside of me at the beginning of the next year.. I had become seriously ill and after a few weeks I was rushed into hospital via ambulance and later found out I had contracted a bacteria called Campylobactor also associated with food poisoning, however this type from my stool samples was more common from abroad and they had asked if I had recently been on holiday. I have never left the UK so still to this day I have no idea where it came from! I was asked to take part in a study at Robert Gordon University in Aberdeen where they conducted studies into that. The Campylobactor bacteria then led me into developing Sepsis, where my large bowel had become infected and I was severely unwell. At that point they offered me two options.. 1. To trial a drug called Vedolizumab or 2. Surgery for a stoma. Option 1 meant I would have to travel to Dundee back and forth for months for a drug that they didn’t know it’s success rates and if it would work for me, the second option felt more appropriate for me.

In a few days I had seen a surgeon and it was agreed that my entire large bowel would be removed and I would have an ileostomy formed. There was talk about a loop ileostomy or a colostomy however they wouldn’t have benefited me for the extent and severity of my disease. The sepsis got worse and one morning my surgeon came to see me and felt my stomach and was gravely concerned. My bloods didn’t show anything- no raised CRP no raised White Bloodcell Count, only my organ functions weren’t normal. I was sweating non stop and my windows were constantly wide open, when the doctors and nurses came in they were shivering! Again this didn’t show on the Thermometer. So, as my surgeon examined me I was rushed in for emergency surgery instead of the planned surgery for a few weeks later. A stoma nurse came to see me that day and marked me up and I was fasted in preparation for surgery. She gave me a booklet and a bag to look at so I could show family or friends. The booklet explained quite a lot. But it didn’t comfort me. I was scared but I was also excited. I couldn’t decided which feeling I felt more of.

After surgery I was sore of course but I felt much better. The cramps and burning were gone, the vomiting stopped and although I was groggy from pain relief I instantly knew it was the right decision I had made. After a week I was able to go home. But when I got home I also got dumped. I was told he couldn’t handle what had happened with me and he couldn’t deal with my illness anymore. I was distraught and instantly felt alone again. My health started to decline again as I was at home and I was constantly on the toilet and vomiting again. I couldn’t understand why after surgery I was like this again. I was infuriated! I was just so frustrated and in pain. A few months went on and I was in and out of hospital again and the last time I was rushed into hospital via ambulance. I was passing mucous the colour of a cup of tea which I then learned was puss, along with blood and chunks of skin.

I then had surgery to remove my rectal stump and I was given what we IBD sufferers call a Barbie Bum. The surgery was a little 3 hours and when I woke up it was AMAZING! The morning after I walked round HDU 7 times and had my drain removed on the third day and I was able to go home. When I got home I was so emotional and then I started to feel unwell again. At this point I was spewing again so I went to my GP practice and given oral antibiotics for a wound infection. They didn’t work and I felt gravely worse. I was then admitted again and given IV antibiotics. My lips and throat started to swell and I kept blackening out. I rang my buzzer and the nurses face worried me. I blacked out and woke up to so many people around me with the curtains closed. I was given adrenaline through my cannula every 5-10 minutes, had an ecg on, a blood pressure cuff on my arm and a heart monitor clip on my finger. Eventually I came round and it was decided to put me on another IV antibiotic that wasn’t penicillin based. I almost died that night.

Since that time I have been in and out with constant wound infections from where my rectum used to be. I also had an infection under my stoma and it healed up with steroid and antibiotic creams. I’ve suffered with liver issues where I got an autoimmune hepatitis (non infectious) and it then went away, anaemia, other numerous infections, more sepsis, b12 defiency, diagnosis of other auto immune conditions such as Behcets Disease which is a rare form of Vasculitis, Arthritis, Fibromyalgia, Pelvic/Vaginal/Perineal/Reproductive Crohn’s Disease, Asthma and have had 3 misscarries and a surgical termination due to being so ill.

But what has these illnesses and tough times really taught me?

They have taught me that no matter what shit you have going on that not everyone is as understanding of illness. Its taught me that even though we all suffer from the same conditions, that we are not all under one category and we are NOT all the same! It’s taught me so much on medications, understanding procedures, stoma products, IV medications, surgery and recovery. But what it has really taught me more than anything is that there are others out there just like me- who suffer from illnesses with pain and all that comes along with it.

I am also thankful for having Crohn’s Disease because if I didn’t have it, I wouldn’t have the most important people in my life. I wouldn’t have strength or passion in raising awareness and advocating for people just like me. I wouldn’t know pain or weakness or knowing how much it means when you have help from when I help someone. I also wouldn’t have met my amazing partner Jaimie who looks after me on the days I can’t get our of bed.

My illnesses have also made me realise that just because I am ill and have these diseases, that I am me and not the illnesses that I suffer from. That just because I don’t work doesn’t mean I am lazy anymore. I appreciate the little things that I once took for granted, that many people who have good health take for granted daily.

I have been able to attend charity events such as The Purple Wings Charity balls and the GYBO ball. Where we all come together and celebrate our strength in numbers and share our stories. We make new friendships and manage to keep eachother on our toes and keep up the fight! 💜