Personal Blogs

My Complex Health

I’ve had chronic health conditions for just under ten years now and as time has went by, I’ve been able to sit and reflect on my experiences and journey as a patient with complex health.

My journey started in 2012 when I was diagnosed with Crohns Disease and Ulcerative Colitis. When getting a diagnosis for a chronic illness, you will have different tests done to determine the outcome of diagnosis and the usual standard practice tests will be blood tests and typically a scan of some sort. So what is the issue?

You’ve gotten the tests done so surely this good, right? Wrong. Many patients who are complex first find out this issue when they are really, really unwell and somehow bloods come back within normal ranges and tests such as an ultrasound imaging comes back clear. They have all the symptoms of something being wrong but cannot seem to get the right answers. This was very much the case for me until I had my first Colonoscopy and was diagnosed with Crohns Disease and Ulcerative colitis as well as biopsies being taken during the colonscopy and sent away to the lab for analysis. I also have had numerous MRI scans and CAT scans and they can be a hit or a miss with accurate results. This leads to extreme frustration as you know you are getting worse by the day but health professionals say “your bloods are looking good so thats very reassuring!” When in reality it isn’t!

So, where do you go or what do you do? That’s the next part of your journey and certainly what I have had with mine. You go back to basics by writing down your symptoms, some doctors may trial you on medications to see if your symptoms lessen, worse or stay the same or organise a scope to look inside your bowel. Of course it isn’t always so simple with many complex patients getting doctors who plain blank refuse to take any illnesses into consideration and send you on your way. I havent had that often but I have had some doctors be this way with me, especially old GP’s in the past.

The only advice I can give is to request to see another GP or consultant – as a patient you are entitled and within your rights to do so! Dont give up trying for help for a diagnosis or help with your disease after a diagnosis because of normal results. My other advice would be that when you are an in patient or seeing someone at an appointment, to make them aware that you are complex and that you are unfortunately, not easy to care for.

Today I seen a consultant I have not seen in years since he had discharged me with good bloods 8 years ago. Its important that when health professionals say your bloods don’t show anything that you let them know that this is actually very normal for you due to being a complex patient and you must advocate for yourself. This helps them, help you. That’s exactly what happened today and he was so lovely and understanding. As I have dealt with normal test results for years, I have always made it my priority to try and remember my own health in ways that many of us would not. This means trying to remember what tests show best results, what medications I respond well to, what tests I have had done and the results of them and in what year they took place. Trying to remember what my levels of blood tests usually come back with and also to remember the cut off number for my iron to hit to be able to have an iron infusion. This is particularly handy when you are in A&E or with out of hours services.

I also have problems with my veins and so have fought plenty with people in hospitals who try to take my bloods in places I know will not give them blood due to scar tissue from a condition that I suffer from known as Bechets Disease. This means I also need particular colours of butterflies (the colours reflect what size they are) and cannula’s due to how small my veins are. Many health professionals become very cocky thinking I am giving them a challenge that they will take on and win when in reality it is to actually make it easier for them and also less painful and traumatising for me!

There are many people out there just like me who go through this, some even worse and don’t have any care at all. Support groups has been the number 1 place for me to connect with others just like me who go through this! Over the years I’ve been able to chat and relate to them but also pick up great advice and know I am not alone. It also helps when I do get difficult doctors from time to time, letting them know that this does happen to many people.

I would love to hear more from people with this same issue and so please feel free to get in touch if this has affected you!

People's Stories!

What’s Your Story? Meet Abbie!

My name is Abbie Louise Crystal, I’m 26 and I live in South Wales. I’m a model influencer and blogger. I live at home with my mum and dad and we have a beautiful little blue staffy called Nico, he is 5 almost 6 and I wouldn’t be without him! He’s been there through thick and thin with me and is my little baby! It’s mad how something so special can change your life for the better. I studied at the University of Cambridge for professional dance and my favourite food is Chinese. Dancing is my passion especially choreographing, I also love to chill out by having a pamper with face masks, tanning and skin care. My hobbies are mainly reading ,running and working out when I’m well enough to! Here is my journey with Inflammatory Bowel disease;


I was diagnosed Crohns Disease and Ulcerative Colitis two years ago, I also have Depression and Anxiety, Vitamin b12 Deficiency and bouts of really low blood pressure which is making me faint often. Being a dancer, I was active multiple times a day and so that’s when I knew something was wrong with me because my body started lacking energy and although I would eat, I still would pass out! My dance teacher was terrified along with the dance girls in my team. In 2019, I was training for the world championships in Blackpool when I started experiencing stabbing pains in the bottom half of my stomach and my back. I thought it was just a stomach bug and so I told my mum not to worry and continued doing my dancing and carried on as normal as I could. It wasn’t causing me any problems until I ate and that’s when it would get really bad for me. I couldn’t hold anything in, it was just going right through me and when I went to the loo, I was bleeding a lot from my back passage. This is when I started to worry especially one night when it started to get worse, so I got rushed in to hospital. Little did I know it was really serious and I was about to enter the most terrifying months of my life.. Months went on where they did so many tests including cameras to look inside me ( Endscocopy, Colonoscopy and Laparoscopy) I had so many biopsies that I wasn’t able to get out of bed for over four weeks at a time. It came August 2019 and I was admitted to hospital for the first time to have an emergency camera and that’s when they found out that my colon was so inflamed and had lesions the size of a 50p coin! My bowel was also covered in thousands of little ulcers. It was a week later that I was diagnosed with Ulcerative Colitis after the result came back. I thought all was well and took the medications I was prescribed and got on with it! Something started to feel not right again and then found out that I wasn’t quite out of the woods just yet. 2020 was just around the corner and I started getting weaker and weaker, the weight started to come off rapidly and quickly and a lot of my family and friends were noticing. My parents got so worried as I was hardly keeping anything down and I was passing out all the time so I rang my doctor. They came did some more tests to see what was going on and to figure out what was causing the bleeding and decided to start me on steroid enemas 6 times a day to control my bleeding and 11 oral steroids to control the inflammation in my bowel.

I then got admitted again (the 7th time in a couple of months) to have another emergency camera where more biopsy’s were taken which involved more cutting, more prodding and more emergency incisions. This is when they found Crohns Disease on the left upper side of my colon and so now I was dealing with not one but two forms of Inflammatory Bowel Disease. Hospital was my second home for a long time and still is from time to time when I am unable to keep things stable at home. I cannot thank my doctors enough for being there at my time of need especially through the covid restrictions due to the pandemic that we were all in! To this day, I experience many many flares and different injections, medications and enemas every single day of my life but that’s part of my life now and I’ve learnt to accept it is part of me! Illnesses do not define you as a person, they only make you stronger. I am constantly in pain 24/7 and it can be draining. This disease has affected my social life in a big way because I can’t eat out without needing to go to the loo. My family have been so supportive with the whole diagnosis and I’m so lucky to not had major surgeries just yet but I do know that it is part of my future. It has also knocked my confidence and my ability to deal with being Chronically Ill and has also been hard adapting to a new life as before, I was such an active girl and it’s so hard for me not to do what I’m used to like my fitness and dancing. The most annoying part for me at the moment is that I can’t lead a normal life like I used to, due to being ill with no energy and not going out of the house due to the affect it has had. I now lack the ability to socialise with people at events and have found that people attitudes are sometimes not the best as they don’t really know about the illness and what it entails.


The positives that I have found out of having Crohns Disease and Ulcerative Colitis is how it’s learnt me how to love myself again, to look after my self and do self care. I am also overwhelmed by the support I have had on this journey and my biggest lesson I have learnt is to not abuse your body and to look after it! You never know what’s around the corner. I’ve now started my new injections called adalimumab and have only been on them for a month, the side effects are mental but hoping it will keep me in remission longer than I have been previously!

Thankyou so much for reading my story and continuing to support me. Please always check the signs of bad tummy’s and bleeding as it could be something really serious, if left and it’s not tested and treated it can be fatal. You can follow Abbie’s journey through her instagram here.

Life With A Stoma, Product Reviews

ModaVi Bag Review

This week I was sent samples of the new ModaVi bags to try from Pelican Healthcare! As promised, I would try them and write my review on my blog as well as sending feedback through the feedback link.

How do they feel?

Honestly the fabric feels amazing and soft, like suede! The flange is also super nice on the skin and very comfortable. They feel very light on the stomach when the bag is full too and the adhesive caused no issues and in fact, felt so lovely to wear around my stoma and on my paristomal skin. They are also fantastic to look at and definitely gives you a lot more confidence!

Flaws?

So for me, I found a few flaws with this bag (this is personal opinion and not the same for everyone!) I really do not like how the opening for drainage is at the bottom. Its really messy and fiddly because in order to clean it fully you have to open it at the bottom then stick tissue all inside a good few times before you can roll it back up again, a similar opening design as the Salts bags. When unrolled to go and empty, there was poo everywhere and leaking out the sides so my fingers got covered every time. I also didn’t like the flappy part at the top of the bag which is used to view the stoma underneath as it dangled around a lot. Super handy though, I admit, for being able to get a good clear look at your stoma and it also folds up for when wearing a Bikini or something similar! I also found that after showering, it peeled away but that could purely be because I am pregnant and have a lot more curve on my paristomal skin and may not be due to the actual flange itself so do bare that in mind when you have read this!

Over all the aesthetic of the bag is perfect and I couldnt fault that at all but practically it just didn’t work for me. The flange is the best part, due to how healthy it made my skin and it just felt so good whilst on!

I still definitely prefer the opening draining design on the sensura mio bags by Coloplast as they have an extra part where the poo runs down and its so easily wipeable and takes a lot less time, toilet roll and no fiddling about what so ever. As always, different bags work differently on every ostomate so please do not be put off from trying them!

Thankyou so much Pelican Healthcare for sending me them and so quickly too! The bags I have left over will be donated to The Jacobs Well Appeal.

Personal Blogs

Words Can Hurt But Also Heal

Lately, I’ve had some negative comments about my pregnancy and it has been really hurtful. I wanted to be open about how many pregnant woman can often come across these situations and how to cope and deal with them as best as possible and to put yourself first.

Sometimes when people don’t know you, they often judge without knowing your struggles and the journey it has taken for you to get you to where you are. I am always very open and honest about my journey and the struggles I’ve faced but it is apparent that many don’t take the time to read that and make assumptions. They also forget that it doesn’t only just affect myself, but it also affects my family and my partner.

Just some of the things I’ve had is “she only got pregnant to get attention” “she is a pitty party” “she always goes woe is me” “she just did it to get likes on social media”. I’ve also seen comments about other woman, too such as “she doesn’t deserve a baby” etc. Some women get pregnant easily, some dont. It is not for others to decide how or why we got pregnant!

I have struggled with fertility since the age of 17 and in 2017 was told I would never have children. Fast forward to now after 5 misscarries and a surgical termination, I am 6 months pregnant that is an absolute miracle and blessing to my partner and I! We have had amazing support from family and friends even through these awful comments and this is where I am healing.

If you are struggling through hard times with hateful comments, find your healing in the supportive calls and messages from friends and family. It can be hard to see through it but never loose focus on what is to come – a beautiful baby completing your family. Don’t loose sight of what obstacles you got through and the journey you have faced! You are stronger than you know and we have all got this!!

Personal Blogs

The Highs And Lows In Pregnancy

Pregnancy is one of those experiences that unless you experience it, you don’t REALLY understand it. The good and bad thing is that it is different for so many!

Many women find that falling pregnant doesn’t ‘just happen’ and it can take a few tries and losses to finally get far along enough to feel that “safe zone”. If you are high risk and have lost before, you will find that each milestone feels like a huge achievement. As each day, week and month goes by you still feel anxious, scared, nervous, excited and have a sense of wonder for what the future holds for you as a first time mum.

For me, the first milestone was 12 weeks because I have never, ever gotten that far before. Then came 20 weeks where we also found out the gender of our baby and had the babies weight and organs checked, all of which came back 100%!! It was a huge shock for us due to us both being chronically ill, we worried something would happen or be passed onto the baby so we were super chuffed to hear all is well and a VERY strong heartbeat! Now, at 21 weeks my next milestone is going to be 24 weeks and I feel that at that one I can fully breathe and relax a little bit better without so much worry.

So what have the highs and lows been for me? There has been so many, just to list a few:

  • Losing friends – it is true what they say that when you become pregnant, you realise who is really there for you. One of my friends of years completely blocked and removed me over night. It still hurts to this day but you do learn to come to terms with losses of friendships over time!
  • Feeling the baby kick – it feels bizarre! But it is SO lovely to wake up in the morning by little baby kicking away letting me know they are awake!
  • The hot flushes – oh. my. goodness. They come out of nowhere and can last upto a few hours!! The room can be freezing due to windows open and the fan on the highest setting and I will still feel too hot! Eventually it does settle with some paracetamol and an ice pack.
  • The hunger – this is a funny one! You eat and eat and EAT and you still don’t feel full, only when you feel the indigestion pain starting and the sick burps from your body letting you know that “girl you have to stop!!”
  • The amazing support – you connect with your friends and family in a much different way than before. Especially those who have had children of their own as its nice to have something in common. For friends who haven’t had kids yet, its nice to be able to share this experience with them!
  • The fatigue – this part is probably the worst. As I have said previously, 10 years of chronic illnesses has not prepared me for how tired you become when pregnant. Before I would laugh it off when people would tell me how tired you get when carrying! Naps have become my daily routine and really do help.
  • Looking at baby clothes/items!! – looking at all the cute items and clothing you can get for your baby is the best feeling ever! Everything is so dinky and cute! It makes you that more excited for the arrival of your baby.
  • Blockages/constipation – this has been super difficult! Just a few days ago, I had a really bad blockage and was vomiting real hard. I was super close to going to hospital but eventually after sipping on diluted laxatives from 6am, it eventually did clear. The constipation makes my stoma quite swollen so sometimes it can be painful however having an Ileostomy means there are now nerve endings so you really don’t feel much apart from pressure and swelling which is like a tightness.
  • Lastly (this one is very dependant on you and your pregnancy) the pain – luckily my crohns hasn’t been too bad but everything else has not been so kind on my body! I was diagnosed with PGP (pelvic girdle pain) which is super painful along side having Hyper Mobility Syndrome – my joints dislocate and pop back into place almost daily, sometimes multiple times per day. So I have to rest quite a lot! All it takes is a sneeze or cough and my hip clicks and pops.

It’s been really lovely to document my pregnancy journey not only here, but over at Trio Healthcare too where I talk about how pregnancy has been with a stoma. When I first became an ostomate, there was no blogs or information available about pregnancy with an ostomy and so, I never knew what to expect or any advice on how to cope with things! I hope by sharing my experiences, that it helps anyone out there with an ostomy feel reassured and have some advice on becoming an ostomy mum! To start with, I was so worried about how it would affects my stoma and my chronic illnesses but in time like with most things, you learn to adapt and cope with what your body throws at you. You learn to grow through your pain and bad experiences and turn them into something good! My number 1 advice would be is to listen to your body, so often we push ourselves to do that bit of housework or go for a walk when our body feels ready to collapse with tiredness! Rest is so important.

Personal Blogs

Pregnancy At 19 Weeks

I can’t believe I have reached 19 weeks already! Time whizzes by! Only feels like yesterday that we announced our rainbow baby.

Firstly, pregnancy is HARD guys! Not even 10 years of chronic illness, surgeries etc has prepared me for this whirlwind. Having said that, I am getting really excited! Last week, I started to feels kicks after having felt butterflies from around 16 weeks. Let me tell you – it’s a bizarre feeling! The baby likes to kick right where my butt used to be! (Not even outside my belly and it’s causing trouble already!) We have started to gather baby items too which makes it that even bit more exciting to see everything in the babies room.

Yesterday, we went to Cullen Beach with my in-laws and their dog Zak, it was SO lovely! There was a fab wind so even though it was warm, the wind kept me cool enough to enjoy a walk on the beach – watching the dogs play and paddle in the water. Biggie took a plunge and even went for a little swim!! We also enjoyed a lovely ice cream and then went back to my in-laws place where a big box of baby stuff was waiting for me!! I could have cried as it was such a lovely gesture and jaimie’s mum got me the most beautiful Disney baby changing bag, pictured down below! I am obsessed with Disney!

Last week I went past to visit my mum who got me these gorgeous aristo cat pyjamas that I had spyed in primark just 2 weeks prior when I had my Blood Pressure attacks in Primark and had to leave as I could barely walk from passing out! The baby also got a little comfort blanket attached to a cute little sheep! I have had some lovely gifts from other people too, which I will be doing a video on at my virtual baby shower, to thank everyone on.

We have our gender scan on the 15th of June and so, have been asking what people think it may be! To my surprise, it’s totally 50/50 on the votes! So we will just have to wait and see. My Pelvic Girdle Pain is beginning to get worse as the physiotherapists had said would happen however I am relying less on antisickness some days and my migraines aren’t as severe but I do unfortunately get them daily. My blood pressure drops are also beginning to happen almost every day but I am not letting any of these things stop me from trying to continue my daily life, some days I am bed bound but totally make up for it on the days I am able, like yesterday.

A few things I have noticed so far are ; increase in thirst, heart palpitations, restless and sometimes very little sleep, fatigue, feeling of a small dog being carried on my stomach!, breathlessness, dizziness and increased hunger. My hair also seems to be in better condition and my nails grow like no tomorrow! My skin is also doing really great and my weight hasn’t done too bad either as I try to keep a balanced diet and my cravings are mostly healthy stuff too! (Weird.)

So at this point, I am 50/50 of enjoying pregnancy but also still finding it super tough! So hopefully it keeps going on up from here and next time I update you all will be after my 20 week/gender scan! Lots of love from bump and I x

Personal Blogs

We Are Expecting!

Proud Big Brother To Be! Mr.Biggles!

Super late in updating my blog on all the news and changes we have had the past few months! As you can see in the picture of our proud boy Biggie, we are expecting our rainbow baby in October this year! This week I am 16 weeks (12/05) and I’m not going to lie, pregnancy has been REALLY tough for my body. The morning sickness that doesn’t just occur in the mornings (weird, right?) has been all day every day, relying on antisickness meds just so I am able to keep water down and be able to eat. Prior to us finding out at 6 weeks, life was really tough and my mental health wasn’t doing so well with a lot of stress around where we were and that in turn was making me super unwell. Just a few weeks before taking my first pregnancy test, we had went to view a house out in the country and had been accepted for it! It was SO meant to be! Thanks to family and friends, we got moved in a couple of hours about a month ago. We still have to paint our bedroom, the babies room and hallway but we have plenty time!

So for my pregnancy, I have a consultant and midwife with a planned C Section under General Aesthetic for my birth plan at approx 39 weeks, all being well. I know on my social medias I answer everyone’s questions there but just on the off chance that you didn’t see the posts, here are some questions I have been asked quite a few times:

  • “What advice do you have for other ostomates or chronically ill people who want to have a family?” – My first most encouraging advice is DON’T have the stress of trying, don’t try. Now this may seem a weird thing to say but continue reading and you’ll see what I mean! My partner Jaimie also has a permanent stoma and ken butt so you would think our odds would have been made very difficult! We had been trying for a while but I had a miscarry last November and I lost all hope and we stopped trying. The one advice I’ve always been given is not to try, it will happen when it is meant to – and that’s exactly what happened. I always found that saying so cliché but it proved me wrong! PLEASE note that this does NOT apply to those with fertility issues. If you are concerned about this being an issue I really do advise to see your GP or specialists for the appropriate referral to have a consultation and tests done to determine this.
  • ” How did you meet our partner and is he excited to be a dad?!” – Jaimie and I met actually when I was just 17 after I was newly diagnosed with Crohn’s Disease via Facebook when I had made a group for those local here with IBD because I knew nobody with it and felt very alone. We spoke for a little while then lost contact as I was in a very toxic and abusive relationship. Then at the end of 2017, we met again on Instagram and Jaimie had not long had surgery for his permanent stoma and needed advice and just someone to talk to who could relate! He was in a relationship at the time so I thought nothing more of it as helping someone who was new to stoma life, as did he! After a while, the relationship came to an end and we were both gamers, now at this time my laptop was away being repaired AGAIN (lol) and so he offered for me to borrow his! So sweet! After that, we have been inseparable. This year in November will mark our 4 years together. Has it been easy? No! We have had many obstacles to pass, a miscarry, failing to become pregnant, past people, current people, normal daily stresses, hospital stays, surgeries, moving house twice, mental health, pain and grief. But we got through it! It helps that we both have permanent stomas because we understand each other. Jaimie is super excited to be a dad but we are both absolutely shitting it too! life is by far perfect but we make the most of what we have and tackle what comes our way as a team.
  • “Why can you not have a natural labour for the birth of the baby?” – I have a permanent stoma with a barbie butt that has not healed, I had the operation 6 years ago (no nothing you advise me will work as I’ve probably already tried it!) Because of this being one of my complications from Crohn’s Disease, the wound area is full of blood vessels which if too much pressure was to be had there it wouldn’t be pretty and exposes me to some real dangers. Due to having my permanent stoma, fistulas and abscesses and the surgeries for those, I have a build up of scar tissue. I am a high risk pregnancy which means that they have decided a C Section at 39 weeks is best to avoid any complications that may occur during labour and avoid any danger to myself and/or the baby. I have severe PTSD when in hospital environments or busy and panic provoking environments which leaves me frantic, spewing, shaking, unable to stand from shaking, dizzy and sets of my asthma and I have a panic attack and asthma attack at the same time. I have nerve damage in my back as a result from my stoma and barbie butt surgeries meaning an epidural is not an option and would make my long term chronic back pain and sciatica much more worse. I have a rare type of Crohn’s Disease which is all below my belly button so inside my pelvis, my vagina and inside the perineal wound where my butt used to be. This means I have SO much fistulas all inside my pelvis going from here to there so they in themselves cause a few complications. I also have a fluid collection where my rectum used to be, this drains through my sinuses and main large fistula. As far as I know these can be prone to infection etc however I’m not 100% on what would happen with this in a natural labour but I can imagine nothing good!

Many people CAN have a natural birth with a permanent ostomy so don’t let this put you off if you are an ostomy mum to be or plan on having kids and you have an ostomy. This is the result of my birth plan that has been made for me and my baby by a consultant and 2 midwifes! Always some positives with the less positive!

The plan until the C Section is regular growth scans, monthly appointments with my consultant, check ups with my Midwife and remaining on antisickness unless that changes and the sickness goes away, which I am REALLY hoping for! I had my physio appointment this week so I have some light exercises to do which includes pelvic floor muscles, try to go for walks when I can (which isn’t often due to being so sick and in pain) and resting as much as possible. We have our gender scan booked for next month too which will be nice! I have my first face to face appointment with my midwife this week too. I am really nervous but excited too! I’ve also joined some Facebook groups that are for mums with IBD and an Ostomy which has helped me massively – there are other women there that I can relate to that has not enjoyed pregnancy either and been really unwell during. The only downside I have found is sadly that a lot of my family haven’t bothered to congratulate me, message me to see how I am or interact with me or just to see if I need anything or any help. It was stressing me out and upsetting me so much seeing them all interact with each others posts, going out together etc and I couldn’t even get one message or a congratulations so for my own mental wellbeing and eliminating stress, I deleted them out of my life. The very close family that we do have, have been amazing!! Friends too! Always messaging to check up on me, video calls, phone calls and supporting me really well. Super grateful for those that have stuck by me and continue to join me on the journey to parenthood!

Please feel free to message me on my social media for a chat if you are going through the same, need advice on pregnancy or if you have any questions that I haven’t already answered! ❤

Personal Blogs

The Many Uses For Coconut Oil

Lately, I have noticed that coconut oil has been used by some friends for different things. I also use it and thought it would be handy to share what you can do!

So what can you use it for?

  • As an additive to your animals meal – melt and pour into rubber moulds and leave to set. This is fantastic for dogs who have very dry coats and skin.
  • A hair treatment – Saturate and soak your hair for a few hours or leave over night then shampoo twice afterwards, it leaves your hair silky soft and brilliant for those natural curls
  • Cooking – instead of normal oil for frying onions and cooking meats for certain dishes such as Thai or Indian curries
  • To treat dry feet – lather onto your feet and then put on socks and leave over night, repairing your dry, cracked skin and leaving your skin super soft
  • Moisturiser for babies – if your baby has super sensitive skin and baby oil is too harsh, coconut oil is super gentle and moisturises the babies skin
  • Leaving onto split ends – put a small amount on the very ends of your hair to condition and help those split ends

Coconut oil can also be used when making natural hair and body products but not something I have ventured into! The smell is absolutely gorgeous. If you have bleached hair, I recommend you do a coconut treatment at least 1-3 months as it also a natural lightener so you get the benefit of conditioning and lightening at the same time!

You can buy Pure Raw Coconut Oil from any stores such as supermarkets like ALDI, B and M, Home Bargains and other chain stores without breaking the bank. You can also buy big jars on Amazon for £9.

What uses do you have for coconut oil that isn’t mentioned? I’d love to know!

Chronic Illness Blogs, Mental Health Blogs, Personal Blogs

Goodbye 2020!

Ahh, a day that felt so long away.. Hogmanay!

As we sit and think about the year 2020, it’s safe to say that we are all glad to see it go behind us. It has been a challenging year for most but even more so for those who have had to isolate, fight the virus or shield. Many loved ones have passed on, many changes have happened, friendships lost and gained and lots of laughter and tears has been shared with each and every one of us! The start of 2021 certainly isn’t going to be easy, with restrictions and tiers still in place to keep us safe. Video calls and speaking to loved ones over the internet has hit a peak that many never had really interacted with before!

I, for one, am so glad to wave goodbye to 2020 and the negative people, bullies, trolls and fake people with it! Welcoming all new great things that wait for me in 2021! I hope for more than anything, to see friends I haven’t been able to see and hug for so, so long. To make lovely memories, watch people grow and also see their loved ones! Maybe even a holiday with my better half and taking lots of pictures. I am wishing all my readers, friends, family, fellow ostomates and chronically ill peeps better health for next year however unpredictable illness and life can be! For anyone who has been suffering with their mental health, I hope you find that little bit of something that keeps you hanging on and pushing forward through the daily challenges you face. I also hope for people to treat others kindly with more compassion and to be more understanding that mental health affects so many people, whether you like them or not! Being kind, less rude and less negative towards others makes so much of a difference. You don’t have to be someone’s friend to be kind!

This is also a good time for you to reflect on who has really been there for you, kind to you and supported you. If people have been unsupportive, rude, unkind and horrible to you, cut them out and really pay them no notice! This doesn’t mean to treat them the same way back though!! Look after yourselves and however you are spending the last day of 2020, I hope that it is being safe by following covid restrictions from your tier and full of happiness! Ours will be spent with chinese food, a bubble bath and gaming with friends!

I will continue to do the same raising awareness, talking about taboo subjects, highlighting areas that need light and making vlogs, blogs and tiktoks in 2021, too!

Lots of love and best wishes for 2021, Alannah.

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

Trilogy of Chronic Illness stories Part 1

Hey, My names Aron and what you see is what you get! I’m a happy fun loving going person but that’s just on the outside, on the inside it’s a different story…….if you are a frequent reader of this blog then you will understand about what I’m going to say next. I have Crohns Disease which is a form of Inflammatory Bowel Disease. In short some foods I eat give me a great deal of pain. I have another hidden condition called CSS – Centralise Sensitivity Syndrome.

CSS makes a selective group of nerves in your body over sensitive so its just really unlucky that CSS has chosen my bowels to attack, so this means anything that passes through my bowel e.g. food, liquid and wind gives me the most pain I have ever experienced but as always it will get better in time doctors say. However I will always be in some sort of pain as it is a life long condition.. Yes I’m always In pain and it sucks, I wake up in shock every morning it is slowly getting better with the new neurotic pain killers I have been prescribed. CSS & CD  work hand in hand unfortunately, so if I have a flair up it will cause me a lot more pain than the average person and it will last longer than a ‘normal’ day of pain. I feel embarrassed when I have to walk around with a walking stick, I know I shouldn’t but I do. I am young (24) so walking around with a walking stick at my age in public is hard. One day soon I will be able to walk without it, if not then I’m hopeful I wont feel embarrassed in the future.

I have a lot of support around me! My cousins have made a real effort to keep me company. Kai and me started playing the PS2 to pass the time, oh yeah sorry I forgot to mention I’m under home rest for the next 4 months! So this should be fun! The game we are working through is Lord Of The Rings Return Of The King. I’ve been playing some old school PS1 games like Bugs Bunny Lost in Time & Bugs and Taz Time Busters, too. Keep yourself busy they say! I have also got a PC/xbox one/Ipad/PS2 so I’m never going to be bored. I also will be doing a lot of researching on a editing software called Hitfilm – this will be taking a lot of my time up due to the fact I want to create a Platform or social media presents/group by making videos on my conditions. I’ll be doing a series of me telling peoples stories about the incurable conditions.

I haven’t suffered from CSS for long so what I’m going to talk about mainly comes from having Crohns. Being a male and having Crohns is challenging! In this day and age yes it’s okay to be male and sensitive but only online or in a support group. What about people like me who’s friends hold ‘banta’ to a high standard? They are ‘lads’ but that doesn’t mean they don’t care! They are my boys. Sometimes though there will be a comment made and I would have to bite my tongue because I’m a ‘LAD’ and get told to stop being so sensitive sometimes. Also shitting myself now THAT is not easy (well it’s easy enough to do it without knowing!) The worst time this happened believe it or not was when I was in bed in a nice apartment I was renting with a beautiful girl. Luckily she helped me clean it up and it only gets brought up when we want a laugh now. As time went on I think being a male and having this condition gets easier, well it did for me because I just accepted that no matter what gender we are, we are all going through something that can’t be cured and I shouldn’t feel embarrassed about anything. I can now laugh about me shitting myself with the boys due to their support. They are also really understanding if I’m on the toilet too long!

Just before I finish up here, I want to say that support is a massive thing no matter what you are going through. The one/two people who make it worth it wakening up everyday is my Mum and my Auntie, the support from these two is what I will always need but my Mum is the real rock star! She is the main reason I’m still fighting. She’s the most caring person (when it comes to family) and I’m so lucky that I have her to help me.

Arons Social Medias:

Twitterhttps://twitter.com/azzahodge

YouTubeDealing With It