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)

Untitled (1)

 

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

image

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!

Mental Health Blogs, Personal Blogs

I’m Coming Out.

88253710_635738193843988_190646764976472064_n

This last week has been absolutely awful. My mental health took a huge blow and I have hid away in bed for almost an entire week straight with the exception of sitting in the living room for a little while yesterday evening.

So last week I went through something I hope nobody has to go through. Someone who I was once with and then had a friendship with decided to do a public live stream and announce my sexuality near the end, without my permission. As only that person, a few close friends and my partner knew about it, I was in so much shock. I didn’t cry but mentally I broke down – I was ashamed of who I was, embarrassed that such personal information was shared about me without me having a chance to tell anyone myself, when I was ready. I’ll admit, I don’t think I would have ever of been ready to share my sexuality with the world but when that choice is taken away from you and it is made public with people in similar communities as myself watching, there isn’t much else you can do but address it and try to move forward.

I. Am. Bisexual. I said it, so I must feel great about this weight off my shoulders, right? In a way yes I am glad to have released that burden and that weight from my shoulders. In another way no it doesn’t because it didn’t come from me first. Am I angry that this happened? I mean I was and who wouldn’t be! It gave me the push I needed to be true to myself and everyone around me but being 100% honest, I would have liked to of waited a little longer.

That being said, I have had amazing support from my close friends, my partner and my Mum. I want to thank you all straight from my heart because you honestly have NO idea just how much your support has helped me.

 

This week is going to be a good one with some exciting news to share too, so keep an eye on my social medias!  To watch my video, please click here.

So much love to everyone who has shown me kindness and support and if you are struggling with something similar please don’t hesitate to contact me on my social medias:

https://www.facebook.com/glitterygutsx/

https://www.instagram.com/glitterygutsx/

twitter- @glitterygutsx

Personal Blogs

Health Update 5th February

img_20200202_162052_6392417417350520260767.jpg

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

20190406181931_IMG_0452

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.

78792609_618050882335648_5547343594274509669_n(1)

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.

82852962_749460718915897_2491240366376747008_o

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.”

83395735_2809630929082749_4052863661721518080_n

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.

82226785_187096959084963_5580879206361359626_n(1)

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.

EPMSdtGW4AItZbk

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.

80739187_1931926146952114_7489151721621253376_n

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!)

82131255_2502142836740305_5359608563831924130_n

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!

Chronic Illness Blogs

My Top 5 Skincare Products

IMG_1177

Having a chronic illness, looking after your skin or having a skin routine can seem like an impossible task. Some of the medications can cause you to develop acne, dry or oily skin. The list of medications that can affect our skin that we may take daily is a long list that I won’t bore you with and save you worrying over!

So here’s the thing – you DON’T need to spend a fortune on beauty products to get nice skin! If you have skin like me which is dry and oily, it’s hard to find products that compliment both of these skin types in one.

Here are my top 5 skincare products :

  1. The Body Shop Vitamin E Gentle Face Wash – Excellent for keeping your skin hydrated, which cleans gently, so gentle for sensitive skin and suitable for all skin types.
  2. The Body Shop Drops of Brightening Day Cream – If you suffer with combination skin then this is perfect. This helps brighten my skin under my eyes as I suffer from dark circles, it dries non sticky, is so light weight and perfect for using before priming!
  3. NovAge Skin Renewing Peel by Oriflame – this is a gentle cream exfoliator that gets rid of dead skin without causing any irritation or redness, it leaves my skin super soft and plump!
  4. The Body Shop Himalayan Charcoal Face Mask – this product is FAB for oily skin, spot/acne prone skin and if you suffer from blackheads.  It has tea tree oil in it as well as himalayan charcoal and tea leaves so zaps those spots pronto, leaving my skin with a subtle healthy glow.
  5. The Body Shop Vitamin E Hydrating Toner – a hydrating toner which hydrates and soothes skin and works so well with the face wash.

All these products really aren’t expensive, with the face mask starting as little as £6. They also last a really long time due to only needing to use very little that goes a long way!

Look out for my next blog at my favourite bath bombs and body products!

 

 

 

 

People's Stories!

Whats Your Story? Meet Double BagginIt!

baggin it

Danielle Gulden and Joe Teeters are IBD warriors and both have permanent ileostomies. They’re comedians, speakers and advocates for other ostomates and chronically ill people! 

Danielle has had Ulcerative Colitis (a form of Inflammatory Bowel Disease which affects the large bowel) for over twenty-six years, diagnosed at 23 years old (She was originally misdiagnosed with a gluten intolerance for 6 years prior to her UC diagnosis) After going through about every IBD medication available, going to the bathroom upto twenty-five times per day, she finally kicked her diseased colon to the curb in 2007. Upon high-fiving every nurse, doctor, and surgeon on the way to the operating room, she had a full proctocolectomy with end ileostomy. Her ostomy which she has named Stella, saved her life and gave her back her life! Danielle is very passionate about performing in theatre, travelling, being outdoors and eating cheese!

Joe has been living with Crohn’s Disease since he was just 19 years of age (a form of Inflammatory Bowel Disease which can affect the entire digestive tract) Like Danielle, he has run the gamut of medical treatments and medications. He has had a total of four intestinal surgeries and two resections. In 2012, he underwent a total proctocolectomy with end ileostomy. That surgery landed him a spot alongside Danielle in the “Barbie Butt” (this is what people without a rectum call their once bums!) Due to Joe’s extensive and several surgeries, he has lost all but approximately five feet of his small intestine and has Short Bowel Syndrome (where only a small part of the small bowel is left.) Joe is also passionate about theatre but improv! He also loves spending time with family and friends.

Joe and Danielle met through an ostomy support group and realized that they not only had a similar health journey, but also shared the same sense of humor and positive outlook on life.  They became best friends, and soon after, Double Baggin’ It was born!  

Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease!  They believe in the power of humor, advocacy and awareness! They have recently done two podcasts with Healthevoices and Ostomy Guy. Danielle and Joe also won an award with The WEGO Health Awards for the category Hilarious Patient Leaders!

Doublebaggin It are available for speaking engagements worldwide!

You can find their social medias here:

Instagram- @doublebagginit

Facebook-Double Baggin It 

Healthe Voices Radio

Ostomy Guy

Personal Blogs, Stoma Products Reviews, Stoma Wear Brands

New Blog Content!

Hi all! As you know, I love to recommend products, services and companies here on my blog.

After thinking about a few ideas over the last few months, I am ready to add new content to my blog! There is always room for more, but what might that be? Well, there are two things I am actively ready to add :

  1. A newsletter
  2. Advertisements

Sponsors and advertisements will be featured in blog posts, social media platforms and via my YouTube channel. This will include myself demonstrating how your products work and including information about your company, services and products. I will also include your relevant links and an optional review.

It would be absolutely fantastic content to add to you all! The benefits for a sponsor or advertisements are also fantastic. Getting the word out about what you do and the products you offer, discounts and more! Any future sponsors will be able to use any blog posts and videos for their own advertising.

I cannot wait to get this content up and running for you all!

If you are interested, please email alannahjaynesblog@hotmail.com.