Category: Personal Blogs

Awareness, Chronic Illness Blogs, Mental Health Blogs, People's Stories!, Personal Blogs

The Mental Health Taboo With Pregnancy

Glitteryguts

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After watching Loose Women, a celeb dating star Anna Williamson talked about her mental health before pregnancy, during and after the birth of her first child. Anna was extremely brave in talking about something that society has a set perspective on when it comes to pregnancy and having a family which is that pregnancy should be the most exciting and amazing time of your life. But that isn’t how it is for many who suffer from mental health conditions.

In my blog IBD – Pregnancy/Termination I talked about my situation when I became pregnant after being told I would never be able to get pregnant and to help other women in the same situation I was in which was that I was told this information based on opinion and through no fertility testing. However I never talked about the emotional impact this had and STILL has on me. It’s hard, and that’s putting it lightly. Since then I have had another miscarry and I am desperate to be a mum. They say to look at that silver lining and for us, it’s that I know I can get pregnant now!

I spoke to women and men who also felt that mental health had a big role to play prior, during and after pregnancy;

Kellie

“It felt like I was going to fail as a mom. When I was pregnant over three years ago, four months before falling pregnant I had my stoma operation. My surgeon was very concerned which made me concerned and panic. There were regular what ifs and what if this baby didn’t make it as I had had 5 miscarriages. At ten weeks, my whole life was on pause as they didn’t know if I would survive, they diagnosed me with a brain condition and I went blind for three months. I was in such a dark place I didn’t know if I was going to make it, I kept asking myself was my baby going to make it, or if we did pull through how would I cope being a mom with a new illness on top of the illnesses I already have!”

“Pregnancy was no walk in the park for me, and I couldn’t be alone. I was scared to be left alone so my partner would come to the hospital everyday and be with me from 7am that morning till 11pm at night. I had to stay on the phone to him all night just to try and stay as calm as possible. I was also on different types of medication as they didn’t know if the baby would come out addicted to the medications or not. I wasn’t on medication by choice, I was on medications to try and survive and for the baby to survive. I had open brain surgery at 20 weeks pregnant and I honestly thought when I was being put to sleep that it would be the last time I would see my family. I didn’t bond with my son for a few months and unfortunately, it took longer for me to bond with him as all I did was sleep and eat. My partner actually had him the majority of the time after major bowel surgery, being ill, open brain surgery and being a new first time mom. Delivering conor I was all over the place between hormones. I really didn’t know if I was coming or going. When I got better and when I was allowed to go home, I was close to my due date and I kept having panic attacks thinking something was going to happen to the baby or myself. I couldn’t sleep, I was restless, I was alone.”
Laura

“I’ve been on maximum dose antidepressants for depression and anxiety since the age of 14. When I became pregnant in 2010, I was seen at the hospital regarding my medication. They advised me to either come off my medication or to switch to one that would have less effects on the baby. My anxiety told me to stop my medication completely, I couldn’t bare the thought of any medication having a negative impact on this little person I was growing. The first few weeks weren’t too bad, I found myself either feeling on cloud 9 and the happiest person alive or I then felt myself pushing everyone away and isolating myself. I kept blaming it on pregnancy hormones and carried on as I was. My baby was born prematurely in April 2011 via emergency caesarean. Nothing prepared me for that, and especially for what was to follow. I blamed myself entirely. I blamed myself for my tiny baby being in high dependency. I felt like I had failed him, my body had failed him, and for weeks I bottled these feelings up and tried my hardest to embrace my new role as a mother.”

“When I finally brought my baby home, I made sure he was clean, fed, loved and my god did I love him. But there was always this overwhelming feeling inside that I wasn’t good enough. I truly believed that I didn’t deserve this baby and didn’t deserve to feel happy. I told myself I didn’t love him enough. I struggled in silence for 6 months before admitting that I needed help. I openly told my doctor “I can’t do this” and the GP put me back on to antidepressants. It has taken me so long to accept that I need these tablets to function and to stabilise my emotions. It has taken me so long to accept that I was and am worthy of this special boy. I am no longer ashamed of my mental health issues and I need to take these tablets to make life easier for me and keep those intrusive thoughts at bay then I do! I was also so in love with him but I remember those unwanted and intrusive thoughts creeping in, telling me I wasn’t good enough for this and that I didn’t deserve this beautiful baby boy.”

Danielle

“Before I fell pregnant, apart from the desperation and obsession with becoming pregnant, my mental health was quite good. I was always able to control it and get on top of it myself. Never felt I needed to seek much help and always dealt with life’s shit pretty well. But it’s like something changed in me when I became pregnant, I was petrified of losing my unborn baby! SO petrified that I was adamant it was going to happen.
I didn’t really enjoy pregnancy much until 20 weeks. I don’t know why but that 20 week scan made me feel like I could breathe a bit and my unborn baby boy was healthy and he was actually going to be OK. But that horrible anxious feeling never fully went away, I think that’s because I didn’t have a lot of trust in my body, seen as though it had thrown a chronic illness at me out of the blue. Despite all my concerns and issues, besides initial worries from labour, he was a healthy baby boy. I don’t know if my pregnancy anxiety is to blame for my mental health declining once I had him. He had Cmpa ( a food allergy caused by the baby’s immune system reacting to proteins in cow’s milk) from birth so we had our issues and battles which was never easy. He wasn’t diagnosed for weeks and I felt like I was losing an uphill battle with medical professionals. I struggled so much from early on because he screamed, a lot, and wasn’t a happy baby. I felt so stressed and angry All. The. Time, A time that I was meant to be enjoying my new baby boy it was awful some days.”

“Even though I wasn’t alone I felt very alone, very scared, both judged and a very bad mum! I was petrified to talk to anyone about how I really felt incase I was judged! I was so scared someone would take my baby off me and think he would be better off with someone else. I did go to the Drs a few times, trying to explain how I felt but I kept getting dismissed and I lost faith in them. Eventually, nearly 2 years after having him! 2 whole years, I felt like I was losing my mind and I wasn’t a very nice person to be around. I couldn’t control my anger or my emotions. I felt so lost and so far from myself it was unreal! I took my sister to the Drs with me who thankfully listened. I self referred from there advice to try CBT. I give it a good go, I tried a few appointments and stuck to it, but still felt myself sinking. My son was well over 2 now and he deserved so much more than what I was giving him! So I went against everything I once believed in, and asked for antidepressants. I was scared of those because I didn’t want to feel numb, I didn’t want to be emotionless towards my son or partner, but I NEEDED something and fast. So 11 months I have been on them now, and my God what a difference!! I’m quite saddened to think I lost myself for so long and got such an important chunk of my little boys life, and I know, which is also proven, that my mental health WOULD of had an effect on him because I left it too long. But I pray and I hope with everything in me, I have time to reverse any damage and soon enough, before the years out, I’ll be medication free and coping OK. Nobody tells you about this part of pregnancy and being a parent, not peppery. You never expect it to happen to you. But it can happen to anyone. And please don’t do what I did, don’t try cope and don’t ignore it. Ask for help, no-one is there to judge you, only to help you.”
Zoe

“My experiences with a newborn – I went into it expecting it to be the most amazing and wonderful experience in the whole world: especially after all the ivf and how longed for our baby was, I thought it would be magical. And don’t get me wrong, it was wonderful, but wow it was so hard too! The physical exhaustion of having a newborn affected me more than anything. I was breastfeeding for the first 2 and a half weeks, and he would feed constantly. And I mean constantly. There was no physical time left in the day for me to sleep. I was beyond exhausted. I was losing control of my mind, I felt like I was ghosting my body, like I wasn’t there. I felt like looking after my baby was a chore. I didn’t feel like I could enjoy even the cuddles. It wasn’t until I started bottle feeding, where Harry actually enjoyed being put down, I could actually sleep, and I got my sanity back. When he was breastfeeding, he would only settle on me, he would only sleep on me. It was relentless. I didn’t want to tell anyone, I felt like I was failing and I had to keep my front.”
Debbie

“I have recently had 3 miscarriages, and during my pregnancies with both my daughters in 2007 and 2008, I had strep B with severe sickness. Due to severe depression which I was diagnosed with in 2009, my two girls were taken away and have been adopted. I found it hard to manage simple things like cooking, couldn’t eat without being sick so ended up being anemic for a while, I couldn’t get much sleep as I was always lay awake worrying. Due to this awful experiences, I have ended up not trusting professionals and I still don’t. I was always worrying something bad was going happen and this has affected my mental health long term.”

(this gentleman is being kept anonymous)

“I find men don’t know what to expect during pregnancy, and I personally found that when going into the hospital with my partner, I was ignored by the staff. They don’t tell you what to expect or how it’s going to be. When we had my youngest, my partner was on gas and air and I sat there doing nothing until she went into labour, nobody talked to me or said what to do or helped me cope with it all. I think because we aren’t the patient, we are left to it which I think is unfair as it’s an experience to go through together as a couple.”
Amy

I have never been very maternal, yes I wanted children, I wanted one each a boy and girl, but for me I had to be a lot older, successful and married. Obviously fate had a different idea. I fell pregnant 3 months after dating my boyfriend, it was mid Jan 2015 when I found out. I had just landed a full time permanent job and this really put a spanner in the works. It was a shock, this wasn’t planned and I didn’t know my boyfriend that well enough either. Even though my pregnancy was a shock, I knew then and there I was sticking with this pregnancy. My boyfriend however wasn’t so keen on the idea. I broke the news to my parents and apart from an initial shock the next day they both supported me with whatever I decided. My boyfriend took a whole week to tell his parents and they weren’t thrilled either. Back then I think I should of left him as the warning signs were all there.

My pregnancy wasn’t easy at the slightest, I’m 4ft9, I was about 5 and a half stone then, so growing a baby left me in a lot of pain. I was sick constantly and was back and forth in A&E as I was so dehydrated and had constant drips to help with that. I had sickness throughout until I actually went into labour. My boyfriend came to terms with things but wasn’t at all in the slightest encouraging. He came to most of the scans, as did my family but he wasn’t overwhelmed with emotion like we were. Anyway we got prepared and minus the sickness and needing constant growth scans, (as for a while baby was growing quite small) things were fine and dandy. My due date was 4th October 2015. I got told I wouldn’t be on time and would be late, however on the 14th September, I was getting a lot of pain and started bleeding. On the 15th pain was worse and my mum decided to time them and low and behold I was actually starting labour. The labour ward got me in when my contractions were about a minute apart and after a quick sweep and realising I was already 4cm dilated, I had a birth pool running and we were in hospital. 16th September 2015 at 7:56am my daughter was born at a beautiful 6lb4oz. Apart from being a bit blue and mucusy she was fine and after 24 hours we went home. This was when things went bad. My partner moved in with me in my parents house, but they just couldn’t get on. He hardly helped with our daughter and at this point I became quite poorly myself as was having a lot of stomach pain. It got so bad at one point I had to get an ambulance round. No-one could work out what was wrong so was put on some painkillers. Day 5 of my daughter’s life and after a few days of her being jaundice my midwife and health visitor told me to get her to hospital and myself as well as I was running a fever and not being well. So we did. We both got admitted in.

My daughter was poked and prodded with numerous tests and she was rushed straight to NICU as her bilirubin levels were dangerously high. We were told if they continue to rise that she may have brain or organ failure. We were told to expect the worst if things didn’t improve in 24 hours. She was put in all uv lighting. She had tubes going everywhere and the tiniest cannula ever. This was when my mental health went bad. My heart was breaking in so many ways. How can this happen? I’ve only had her in my life for 5 days, you can’t take her away from me now. Will she live? Will she have permanent problems? How am I going to cope? Why the hell has this gotten so bad? I was distraught and worse I was admitted in and until they can figure out what was wrong with me, I wasn’t allowed to be in nicu. I was breastfeeding so I needed to be there so I could do that. They allowed me for that reason but after 2 days my bloods came back saying I had an infection and while that was going on I no longer could be there. So I expressed. But I wasn’t making much sense, which then made me cry my eyes out as I couldn’t even do one simple thing for my daughter. The hospital was amazing. They made sure I was being checked on and keeping me updated constantly about my daughter. I had the mental health team round as my scoring was very bad so they sent the support, but I refused, I just wanted to be with my daughter. Her father hardly went to see her, he was more interested in playing his game or sleep. At one point he saw her for about 10 minutes and then went off with his family to get a pizza, not once asking if I needed anything.

My parents, especially my mum, were there being my support group that they always are, they made sure I was coping and being there with my girl while I couldn’t. They gave me things so I had her smell and she had mine. Regardless though, I still felt alone, so lonely, so lost, so hopeless, so frustrated and so very angry. I just want my baby home and well. Somehow a miracle did happen and after 2 and a half weeks we were home. We had another month of tests to make sure nothing creeped back but she was safe. But even being home my low mood didn’t budge. I instead worried every time she was asleep.

It is incredibly brave for these people to share their stories over the past few months and to share via this blog post. The main aim in sharing these stories is for those who are in similar situations with mental health whilst being a parent’s or parent’s to be to not feel so alone. It’s OK not to be OK at any time in your life! Just make sure to reach out and get the help and support that you need, whether that be in a friend, family member or medical professional.

Life With A Stoma, Personal Blogs, recipes

Stoma Friendly Bread and Butter Pudding

Glitteryguts

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Having a stoma can be difficult when you can no longer eat the foods that you once loved, if that means either you are unsure about eating them or simply you have found you cannot eat it from your trial and errors food list. Bread and butter pudding is my most favourite dish and has been since I was little as my mum used to make me it on a cold winter day.

I found a new way to still enjoy this dish without having to eat sultanas as they make my stoma terribly sore and give me a blockage. Sultanas are what gives this dish the most flavour complimenting the cinnamon and nutmeg, here’s how:

For this recipe, you need;

  • 1 tub of double cream
  • 25g of caster sugar
  • milk
  • 2 eggs
  • sultanas
  • bread
  • butter
  • nutmeg
  • cinnamon
  • one oven dish

After cutting the bread in half, making triangle shapes, butter just the top and put into the dish. Sprinkle with cinnamon and nutmeg and repeat this process until you are happy with the depth of bread.

When combining the cream, milk, sugar, cinnamon and nutmeg, put in the sultanas and warm on the heat setting 4 for 15 minutes then bring to boil on heat setting 6 for 5-10 minutes. This part sounds a little messy however it isn’t so messy! Take a potato masher and squeeze down the sultanas until they are a mushy consistency.

Mix the two eggs with sugar together and whisk until they are a pale colour. Take a sieve and pour the contents of the pan with your sultanas into the sieve over the egg and sugar mix and squash out all the juices with a spoon until no more comes out, then dispose of the sultanas.

Mix these together and pour over your bread triangles in the oven proof dish and leave to sit for 30 minutes. After 30 minutes put into the oven at 180 degrees for another 30 minutes.

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Add some cream or ice cream and enjoy!

Personal Blogs

The Enchanted Forest Cosmos

Glitteryguts

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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

Glitteryguts

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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!

Glitteryguts

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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

Glitteryguts

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

Glitteryguts

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!

Glitteryguts

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!

Glitteryguts

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.

Glitteryguts

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!