Awareness, Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs, People's Stories!

Trilogy of Chronic Illness Stories Part 2

Ashley’s Story

I grew up in Skye and then moved to Norfolk in 2002. I had a really normal childhood without any health problems until 2011 when I was diagnosed with Crohn’s Disease. I then had major surgery for a stoma in 2016 which was a huge shock to me but I am really glad I had this done. As well as being Chronically Ill I am also known as Genderfluid. Being genderfluid is really hard to explain, in simple terms I am me, both sides of ash are equally me, I hid this part of me of many years and it really affected my mental heath and I hated my body. This led to self harming and Depression. If you aren’t sure what Genderfluid means, it means that a person who is Genderfluid doesn’t go by a fixed gender so being male or female, they can be both hence the “fluid”.

I have had many challenges thrown at me during my life, the biggest challenge going through all the symptoms that comes along with Crohns Disease. The weight gain is the worst.. before Crohn’s I was 7 stone, steroids soon changed that! I’ve never been able to lose it and I’m 14 stone now. I haven’t always had the best care from doctor’s which I am sure many people with a Chronic Illness have experienced! I was on steroids for two years straight before a doctor mentioned Osteoporosis so a bone scan was booked and the results had shown that I had developed it in my back and hip from being on steroids too long. Another hurdle I’ve had to face is pain killer addiction due to the severity of the pain I was in daily, taking 50 pills per day just to get me through and attempt to help with everything I had going on. This wasn’t helped due to being handed stronger and stronger pain medication without any questions asked or a real pain management plan/checkup.

If I wasn’t Chronically Ill I would be making plans to follow in my fathers footsteps of a career in the army. I’m now 30 and luckily I have been blessed to have a daughter and I have a partner now who accepts me being genderfluid and we have been together since 2008. My girlfriend Helen has been there the most for me, everything that I have gone through, Helen has been there. I love to travel to my favourite places and so far I have travelled to Edinburgh and Lowestoft. I love nature, nothing beats the feeling and buzz of being truly lost in a forest surrounded by gorgeous trees and scenery. I am also a Christian which has helped me throughout life. Being Christian and Genderfluid is not a big thing to me, god made me as I am.

If you are struggling with any of the issues talked about in this blog please visit the LGBT Foundation, IBD Superheros or speak to your doctor who can offer support and advice. You can find Ashley on his instagram here.

Product Reviews

Bath Salts Review – Elysium Spa Coconut and Lime

It has been almost 4 months since we moved into our new home which was an absolute dream when viewing as it has a lovely bath! I absolutely love my bath bombs but due to a nasty perineal infection, I have been in a lot of pain in my Barbie Butt. I decided to start trying salt baths as I’ve never been able to do that as my last houses I have stayed in only had walk in showers.

After trying the Himalayan Salts by Westlab (which are pretty good!) I decided to try a different scent as I really am a sucker for a nice smelling bath! In the middle of running my bath is when I put some of the salts in and the smell is OUT OF THIS WORLD. They dissolved really good, whereas the Himalayan Salts didn’t really dissolve so well so when sitting in the bath you feel the gritty salt. My local chemist sells them at £1 but due to shielding I bought mine from amazon at around £3 more. I try to have a bath with salts at least twice a week if I can and health allows me.

I have to say that it was money very well spent and as well as drawing horrid stuff out of my wound, as it is Epsom Salts, they really helped my aching muscles. I would highly recommend this product! (this isn’t an ad or sponsor.)

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

Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs

We Have Moved!

Baux and myself settled in!

It’s been a while since I gave you all an update! My laptop got completely rebooted by my friend John who used to work in a computer shop and now fixes computers etc in his spare time. So even though my laptop has been fixed you’re probably wondering why I haven’t been blogging! For the past few months we had been preparing to move so we had to clear out E.V.E.R.Y.T.H.I.N.G because I had way too much stuff!

We have been in our new place a week past Sunday and we are absolutely loving it! What had drawn us to this place the most was that there was a bath and shower separate in the bathroom and there is no big garden so we hadn’t the need to to cut grass as we struggled with that at the last place. To start with at the new house I really struggled as just three days before moving I had dislocated my knee cap twice so I had this awful leg brace on and I couldn’t walk properly (it’s still causing me pain.) The bath has been absolutely lush and I have been using my bath bombs! We had another few hurdles to bypass whilst moving which included my huge bedroom wardrobe having to be taken to bits and rebuilt and other minor little things. The dogs have settled in so much better than we expected too which has been great. The best part though is not living under temporary accommodation anymore and having anyone with issues living above and also not having a party animal living above making my life an absolute hell anymore.

My health is up and down at the moment.. stomach pain has been quite intense, my reflux hasn’t been great with frequent heartburn and feeling sick, my headaches have returned again, joints are not so well and I am super exhausted. Stoma wise I have been having A LOT of bag leaks. Luckily I haven’t needed to visit the doctors since my knee dislocation but who knows how long that will last – all chronically ill people know the drill with that! Emotionally it has been a really rough ride through 2020 so far and I got to a really bad place where I really was not coping after loosing my Aunt Nina, and old school friend and an old work friend. Hopefully though this is the start of a better period of time with two friends expecting baby girls I am super excited for them to arrive!!

So for now, my time is spent playing Animal Crossing, trying to sort out the new house, resting and catching up with Family and Friends. I have been told due to my Hyper Mobility Syndrome that dislocations are very common and it will more than likely happen again (but im going to hope NOT! Its so painful.) Today it is SUPER cold so I had a shower, got back into my P+J’s, put on harry potter and my partner and his sister are baking some goodies including my favourite – chocolate sponge cake with cream!! I hope you enjoy your day ❤

Awareness, Chronic Illness Blogs, Life With A Stoma, Personal Blogs

World IBD Day 2020

Today is #worldibdday! This will be a brief post as I am writing this on my phone (my laptop broke after 3 faithful years!)

Today we celebrate world IBD Day all around the world and raise awareness of Inflammatory Bowel Disease. You will see many posts today of people sharing their story/journey or sharing about their loved ones who suffer from IBD! Share the love, ask any questions you are interested to know the answer to and share!

Many amazing charities now exist to help those with IBD or ostomates! The three charities that have helped me SO much with support over the years is: GetYourBellyOut, The Purple Wings Charity and IBD Superheros – all of which have various social medias and facebook groups.

Today for me, I celebrate the friends/family I have met due to sharing our illnesses in common – including my fiance! There are SO many that I could not live without and life really would not be the same without them. So this is a shout out to all my IBD besties who make life worth living, the bad days better and the littlest of things the funniest even when they have been so unwell and in pain themselves!

Chronic Illness Blogs, Mental Health Blogs

Entertainment At Home (LockDown)

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This past little while has been difficult for many people healthy and chronically ill. Now the next little while is going to be a little bit more tough at home with trying to find things to do to keep you and your family entertained! We won’t talk about the shopping item crisis or anything negatively related to why we have to stay home as those who have to know why.

I was thinking earlier today it would be great to share some great online games you and most teens can play during the lockdown period. These are some games I love (some that are popular) and also many that are free to play through Xbox One, PS4, PC/Laptop and on the Nintendo Switch. I will also share some links on where you can get games straight to download through codes instead of having to wait however long for the game to arrive in the post!

  1. RuneScape – this is a great game to play on your computer or laptop! It does have a monthly fee of £6.99 but with great rewards. You can do a wide variety of things such as quests, scrolls, gaining XP in many skills and the game itself is beautiful. To view a beginners guide, you can watch ProtoxxGaming on youtube.
  2. League of Legends – this game is free to download on your computer, laptop or on your mobile (mobile is Team Fight Tactics only.) This is a PVP game with loads of champions to play! To start, you go through the training and then slowly unlock more champions. To watch some League of Legends game play, you can visit GrossGore who plays this ALOT or you can visit the Twitch website.
  3. Animal Crossing – this game can be played on various nintendo devices and on your mobile, however the mobile app is a slightly different version. You can get this on CDkeys.com for £8 less than it is on sale at anywhere else and the bonus is you don’t have to wait for the game to arrive in the post! Simply purchase through the website and it will send you a download code through to your email address!
  4. World of Warcraft – for this game, it works the same as RuneScape in how you pay monthly to access the game and it’s rewards. The download is free.
  5. Cards Against Humanity (online addition) – everyone has heard of this game and it started out as a board game, however now you can play it online with your friends or family for free by clicking here.
  6. Apex Legends – this is a multiplatform game that can be downloaded for free on Xbox One, PS4 and on you computer/laptop (through Origin.)
  7. Fortnite (similar to the game above) – another game that is free to download on multiple gaming devices.
  8. Neverwinter – again another free game to download on multi game devices which is very much like a mixture between Diablo and Skyrim and is great!
  9. SMITE – this game is also free on multi gaming platforms and I suppose you could say it is like a form of a League of Legends game but much more child friendly.

To view all free games to download for your gaming device, click each one below:

Hoping that one or some of these games are of use for your kids, teens or yourself!

Chronic Illness Blogs, Mental Health Blogs

Covid-19 With Chronic Illnesses

With recent news and articles left, right and centre, those of us who are chronically ill are in a state of panic, anxiety and fear.

The World Health Organisation and the NHS are the two BEST and most RELIABLE sources of information regarding the coronavirus also known as covid-19. There are many newspapers and online articles publishing unreliable information to the public through social media world wide.

So what is the advice given?

  • Avoid close contact with people out of your home
  • Wash your hands after touching anything even in your home
  • Using hand sanitizer in between washing your hands
  • If you are to cough or sneeze then please do so in a tissue
  • Wearing a mask doesn’t protect you 100% as these germs live in your nose but you can still wear one
  • If you have a high fever and/or cough with breathing difficulty then you MUST self isolate for 7 days
  • DO NOT go to your GP practice if you are experiencing a high fever and/or cough
  • Stay calm and keep in contact with friends and family through your phone and social media
  • If you are mentally struggling to call someone who can help over the phone.
  • Only go to A and E in the case of an emergency

It is so difficult for all of us who are chronically ill at the moment, more so because of how the media and people are reacting. It’s normal to feel scared and anxious as we do with any virus or bugs.

It is also difficult for all of the NHS staff who also have the fear and anxiety even in situations similar to this with treating patients with TB, HIV, AIDS and other infectious diseases. This is why we MUST follow their advice – they do this day in, day out throughout their training, placements and career to protect themselves from viruses and diseases on a daily basis.

I cannot emphasise just how important it is not to pay attention to click bait articles online. As stated at the start of this blog post – World Health Organisation and the NHS are the most important organisations for advice and updates.

If you are struggling mentally take some time to unfollow news article pages on your social media, if you find people on your social media are posting too much then take a break and some time out away from social media, you can speak to people through facebook messenger as normal or there is also whatsapp, Skype, facetime, discord and various other apps that are free to download onto many mobile devices and computers/tablets/iPads.

I hope anyone that has been affected directly by covid-19 recover and those that have been indirectly affected are OK and know that you are not alone.

Awareness, Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs, Uncategorized

The Blue Badge Scheme

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The Blue Badge scheme is a disabled parking permit but more commonly known as a disabled badge. This is where a blue badge is visible in your vehicle window to allow you or the person transporting you to park in disabled parking spaces.

How to qualify?

I’m asked this question quite frequently, as recent as just last month. It’s difficult to know if you are eligible and how to get one so I gathered my information and will pop it down below (please note that some councils policies on your eligibility can differ so always consult them):

  • If you are under the age of 16 and have a letter confirming your eligibility from your visual impairment team (eye care specialists.)
  • if you are 16 or over and you are registered as visually impaired.
  • if you are receiving the higher rate of mobility component from DLA (Disability Living Allowance.)
  • if you are receiving PIP (Personal Independence Payment) and have scored 8 or more points in the ‘moving around’ in the assessment.
  • if you are receiving PIP (Personal Independence Payment) and have scored 12 points or more for the ‘planning and following a journey’ in the assessment.
  • If you are receiving ‘war pensioners’ mobility supplement.
  • if you have gotten a ‘lump sum payment’ from tariffs 1-8 of the Armed Forces Compensation Scheme.

If you have any of the above then you automatically qualify for a Blue Badge! If you don’t then click here where you can do an eligibility assessment online. You will need your national insurance number for this if you have one.

How to apply?

You can apply directly through the link up above or you can call your local council and request this to be done on your behalf over the phone and then visit your local council with documents to prove your identity, address and proof of benefits you are currently receiving such as :

  • a utility bill
  • passport
  • drivers license
  •  birth certificate
  • council tax bill or government letter
  • letters from DWP of your current benefits
  • a recent passport sized photograph (for the badge)

Once you have done this, the process time is usually 12 weeks but depending on your local council it could be a little longer, they will email you to let you know! How you pay and how much you pay also depends on who and where is your council for example in Scotland it is £20 and in England it is £10 and for wales its completely free.

What are the benefits of having a Blue Badge?

Having a Blue Badge can be very beneficial if you are disabled such as parking at on street parking meters, parking in pay and displays, parking at disabled parking spaces and on single and double yellow lines if there are no loading restrictions (all of these are completely free!) This does not apply when parking at shopping centre car parks, hospital car parks (if they charge) and super markets (if they charge.) You can also use your badge all over the UK and abroad, in England and Wales you must use a parking clock.

Displaying your Blue Badge

It is important to display your Blue Badge so that when near your vehicle, someone can see it clearly from outside the vehicle and the front of the badge must be facing upwards showing the name of your local council.

If you have any issues with losing your badge or it has been stolen please contact your local council ASAP to get this resolved. Please also note that giving your Blue Badge to someone who is not entitled to one or is not helping you can be charged with committing a blue badge fraud and fined up to £1000 EVEN if they are family or friends. DO NOT buy your blue badge anywhere online where it states the price is £49 as there are SO many fraud websites scamming people and are fake. If you get a fake blue badge you are also at risk of being fined up to £1000.

I hope you found this useful in answering your questions about the Blue Badge Scheme!

Personal Blogs

Health Update 5th February

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Hello! It’s been a while since I updated you all on my health situation and to be honest I didn’t really know everything myself!

Today I had an appointment with my IBD Consultant in Aberdeen Royal Infirmary, he’s very good and always on point with helping me and has done since I was diagnosed. My barbie butt wound has been causing me issues for quite some time and I can’t lie about that. Don’t get me wrong, having that operation done was the BEST decision my surgeon ever made because all I was doing was sitting on the toilet passing pus, blood and mucus constantly all day, some days upto 60 times. Anyway, this wound has been bleeding a lot and I was doing OK for a little while with the discharge as it seemed to go away and I didn’t need to constantly wear pads every day and keep changing them.. now it has gone back to how it was prior and it’s a pain in the butt – pun intended. My wound has also split open and is bigger than what it was before *sigh*. I have also had issues with my stoma retracting which is a whole new kettle of fish! It was never a problem until these past 6 months.

After examining me, my consultant has decided I need to go for another Pelvic MRI scan as he fears there may be another pelvic fluid collection due to the pelvic and wound pain and if it comes back with fluid then I will need more surgery to have this drained. He has also decided that I will start a new treatment (new to me as I have tried everything else) called Stelara which the first dose is an infusion and then injected every 8 weeks. Obviously there are side effects and that’s what I am more nervous about but at this point I really don’t have anything else to try because I’ve been on everything else and steroids are not an option due being immune to them. My Rheumatologist also wants me on the Stelara and both my Consultant and my Rheumatologist have said that this medication has the potential to help both my Crohn’s Disease, Behcets Disease and my Inflammatory Arthritis and Bursitis! I was given the information about the Stelara home with me today to read over and see the side effects, how it works – just everything I need to know.

In preparation for the biologic drug, I had a TB (Tuberculosis) check and another set of bloods that is routine for someone away to be put on a biological drug and they got the butterfly in first try today! The sugary tea this morning must have helped so a small win for me today, small victories! So when they come back I will more than likely get a call. I’m also still waiting to have my small bowel looked at via the Capsule Camera, Tonsillectomy and my four wisdom teeth removed, which we hope all of which will be done before I start the new medication, so one can only hope! I am super nervous as I mentioned before but I really won’t know until I have tried and I am really keen to try and get some of my Chronic Illnesses under some sort of control. My pain relief has also been changed as the codeine was giving me the worst constipation and blockages I have ever had and making my Chronic Migraines worse. I know it’s a lot to read and if you have read all through this then thank you, truly!

Hope this keeps all my followers up to date and any friends or family who read this. It’s been a day of mixed emotions but time will only tell how things will go.

I also want to say a big thank you for all the support I have received – It has been awesome!!

Lots of love

Glitteryguts and Lola Stoma. x

Awareness, Chronic Illness Blogs, Life With A Stoma, ostomy fashion, Stoma Wear Brands

Ostomy Fashion – Best Buys

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Many ostomates dress differently due to two things; fear of the bag showing and losing confidence. I asked some ostomates their favourite pieces of clothing to wear when dressing with a stoma, at an affordable price, as let’s face it – we aren’t made of money! (Picture above, I got my dress from SHEIN for £15!)

I admit, when I first became an ostomate back in 2015, it was summer and I had no clue what to wear (I was just 20 years young at that time.) I was fearful of my bag showing, my scars being visible and I lacked all that confidence I once had before I got severely  unwell. I am here to tell you that you CAN wear whatever you want or feel like wearing – whether you want your bag to be concealed or on show! There are two of my favourite ostomy wear companies that you can get briefs that hold your bag in place such as Vanilla Blush which focuses on being sexy at the same time, and for hernia support there is Comfizz which are more practical than sexy but work excellent!

If you are a new ostomate reading this, welcome! Here you will find some great buys from fellow ostomates and hope that this helps you. Feel free to get in touch should you need any more advice! It is a lot to take in, but take it day by day and relax, cus’ we got you covered in the clothing department <3.

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First up we have the lovely Amy also known as the IBDWarriorPrincess who is also my friend and a blogger for Comfizz! “My Style since getting a stoma has changed, but for the better. Now because I can maintain my weight and actually go out. I look forward to going clothes shopping and dressing in the clothes that I love! I swear by high waisted garments because they don’t restrict my ostomy or stop it from it’s normal functions. My favourite go-to outfit is a tight top and a skater skirt, especially on the days where my stoma is more active!” This Jumpsuit was just £12 from Newlook.

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Nicola also known as Beauty and The Bag, is not afraid to have her own sense of style with her ostomy! As a mum of 7 she looks fantastic! “I get pretty much all of my clothes from boohoo and absolutely love the styles I can create! I don’t dress around my stoma or try to hide it.. I wear whatever I feel good in and I like to look a little unique and stand out.”

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Lisa who has her own ostomy fashion instagram account lisakateostomate, sharing other ostomy fashion and bargain buys! Lisa has really struggled recently due to being on steroids to try and help her Chronic Illnesses with her weight, but doesn’t she look amazing! ” Always have shopped at primark, quiz and new look. My go to shops for my clothes and they’re all true to size. I’m usually a 12-14.” We think you look lovely whatever size you are Lisa.

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Jess is no stranger to an ostomy as this isn’t her first once after a failed J-Pouch! Jess finally got the chance to dress up for new year this year after being in hospital on and off for the past few months. This dress is from I Saw It First retailer at £25. She also has an instagram account that you can follow her – jessgoldstraw.

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Sandie loves her comfy trousers which she bought from TK Maxx at just £19.99! “I have made many purchases but I am so glad (more so) on the purchase of these trousers which got me through the first few weeks after surgery.” And I agree definitely a bargain buy!  You can follow Sandie on twitter – sandicookartist.

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Sophie who is a mother of one and is the face behind the ostomy clothing brand I Am Denim London models her own jeans here. Now these are on the higher range of ostomy wear so these do cost a little bit more. These jeans I would really recommend for those of you have a higher stoma! This includes men too! These are currently on sale at £75. Perfect for keeping you ostomy concealed if you are self conscious too (they have a waistband inside that is adapted so you can still empty your pouch without having to undress!)

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Last of all is my bargain buy! These ex Zara jeans I got on ebay for £6.99! I have a low stoma so these cause me no issues on rubbing on the stoma or when my bag fills up. They are super stretchy and soft. I have no issues having my stoma on show or hidden, however when wearing jumpsuits or dresses, I do wear my Vanilla Blush briefs to keep everything in place!  You can follow my instagram – glitterygutsx 

Let me know what your bargain buys are OR your favourite outfit with a stoma! Feel free to tag me on social media so I can share with the rest of my followers!

Thank You to the girls who participated in this blog piece, in hope to help new and old ostomates!