Many stores are now accepting Just Can’t Wait cards, which is a huge improvement to a few years ago! I have been one of those affected by not being allowed to use toilets in stores before AND after having my stoma. Many have suffered much worse where they have been refused with a very full ostomy bag, resulting in a bag leak and soiled clothing. Bladder and Bowel have made a Just Can’t Wait card for ostomates to show that you need the toilet, in a much more discreet and private way. Perfect if you don’t want to cause a fuss or let anyone else around you know about your stoma.
This week is stoma week, which they have dedicated this week to talk all things stoma!
“We’re always looking for ways in which we can support the community, and this week we have a few little surprises for you! You’ll have to join us on social media to find out exactly what we’re planning.
They will be sharing patients stories, asking for ostomates opinions, running new exciting events and starting conversations and giving support for anyone who lives with a stoma. Below you will find links to their social medias to find out more!
Superdrug is the UK’s first major high street retailer to offer this free service which can be used when you order your NHS repeat prescriptions online with Superdrug. It’s such a fantastic service which I’m sure will benefit so many people!
Each month, your medication is sorted for each day of the week, so you know exactly what to take without forgetting or having to organise it yourself. Their packing is eco-friendly and they have various online services for men and women’s health! This is especially good if you take multiple medications daily. They also offer men and women’s health services via their website such as :
Cough, Cold and Flu
Allergy and Hay fever
Diet and Fitness
Vitamins and Supplements
Stress and Sleep
Home Test Kits for COVID
I have to say that I found their new pouch system for your monthly prescriptions really impressive and helpful, much so for anyone who has medication to take every day. It’s super hard to remember what to take every day! Not having to organise this yourself saves you a lot of time and stress. To look at this service or to find out more information, please click here.
Thankyou to Superdrug for talking to me about this service. It can really benefit so many people out there!
As winter draws in, the nights are getting darker and the cold is creeping in more and more. We also find ourselves in part 2 of the pandemic with the majority of the south of the UK shielding and the days are beginning to merge into one and before you know it, you have no clue what day of the week it is and it is BORING. I’ve been shielding since the first lock down started earlier this year, with the exception of hospital appointments, shopping and getting out for the odd walk here and there, so I know how the lack of activities is beginning to get on my last nerve! Apart from working out, I can’t deny how much I love a good NETFLIX binge especially on the days where it’s too cold to go outside or I’m simply just not well enough to. Looking through NETFLIX and amazon prime, I thought I would get everyone filled in on what you can watch and watch you will be able to watch later during the last of 2020.
Some Amazon Prime films mentioned may cost so do keep on mind do avoid those if you are on a super tight budget like us, as with NETFLIX the monthly fee is as what you pay for it (we don’t pay for ours.)
Emily In Paris : If you love a chick flick you will absolutely DIE and go to chick flick heaven with this series! A girl finds herself getting a job promotion from America, to Paris and her journey there is tough but totally heart fluttering.
The Tiger King : I think by now we have all heard of Carole Baskin! I you haven’t watched this gob stopping documentary about a guy who wanted to live a celeb life whilst raising tigers, lions and whatever else at his animal park, you need to. It all comes to a crashing end with SO much drama.
The Ted Bundy Tapes : If serial killers, murder documentaries and evil people is your thing, you’ll love this. Following Ted Bundy the serial killer in America of the 60’s to late 70’s before being executed in 89′, how his brain worked, his background and how he managed to deceive multiple communities before being caught.
Sex Education : A hilarious comedy featuring a young teenager who’s mum is a sex therapist. Being a not so popular guy in school, love is tricky for him and doing the old tug of the chicken is as non excitant as his love life. He finds the girls of his dreams but will he see it through?
The Witcher : I can’t lie, THIS is my ultimate favourite watch this year! If you love Lord of The Rings and Game of Thrones, this is right up your street. Dragons, Mages, Witches and a Witcher who tackles huge monsters.
Stranger Things : An absolute belter of a series! Based back in to the 70s/80s genre, a group of kids and their parents/guardians tackle the most evil and biggest monster the world has never even dreamt of. Main character Eleven who can open the porthole for all unruly monsters escapes a scientists lab after being kidnapped as a child, finds herself fighting the evil monsters to save her friends, family and the world.
The Last Kingdom : This epic series dated back in the Viking times has so much of a story line I can only sum it up as best I can! Uhtred being an outsider Saxon (a rouge tribe) seeks to make England a better place following the death of the king and doing his best to support the new one leaving his Saxon life partly behind, whilst finding his brother Ragnor and his sister – on the opposing side as Saxons.
The End Of The Fucking World : A dry and dark comedy that sees two young teens with troubled home lives and mental issues, not popular at school, develop a friendship after murdering a podophile in his home after breaking into his home and being caught, thinking nobody was going to be there for a long period of time.. Their love story has many off and ons and during this time, they go on the run together.
The Corpse Bride : A childhood classic! A man dreaming to make his arranged marriage just perfect, ends up married to a corpse bride!
A Cinderella Story : An updated and new version of the classic Disney story, featuring Hilary Duff at high school, working for her evil step mum after her dad passes when she is a little girl. She texts a boy named Justin and is falling for him, but there’s a catch – he doesn’t know who she is.
Easy A : A hilarious film featuring a young teenager in high school who somehow has it spread round she lost her virginity, instead of trying to deny it, she goes with the flow and there is a storm before the calm!
Blades of Glory : An amazing comedy featuring Will Ferrell, known for his active roles in comedies, is a champion ice skater teams up with another after they become disqualified. They hate each others guts but it’s about to get up close and personal…
The Innocent Man : From being charged for a murder he didn’t commit, you see how his life is turned around and he gets justice – a true story how a man is made innocent and set free.
The Chilling Adventures of Sabrina : A new take on Sabrina the Teenage Witch, seeing Sabrina a normal 15 year old at high school (mortal) leading up to her 16th birthday which happens to be on Halloween – her dark baptism. She has to sign her name into the book of the beast, giving the dark lord her soul in exchange for her life as a witch and her powers. So many twists and turns happen and after refusing to sign the book, she is left with no choice at one point. Leaving her mortal life behind and starting her new life a witch and MUCH more. New season coming December 2020.
Riverdale : Ah, the charming Archie Andrews. Living in a small community things get rocky when drugs, murders and gangs start to rival in his small town. He has a mission to stop who is leading these terrible crimes and is confronted with his lovers father. Can he stop him and save his friends, family and town?
Shadow Hunters : A young Clarissa finds herself bumping into someone who usually can’t be seen by anyone, unless he wants them to. She soon finds out that she was born with abilities, wiped from her memory as a young child to protect her from her real father, who seeks to avenge her mother and the community that banished him.
American Horror Story : If you love horror films, this series is perfect. Each season see’s the same actors playing different roles as each season has a different story line. (My personal favourite is Season 3 – The Asylum.)
The Lovely Bones : Only available on Amazon Prime at £5, this chilling docufilm follows the life of a young 14 year old Suzie who is lured and killed by their neighbour. It shows her watching her friends and family in the “in-between” which is the place between Earth and Heaven. Will they get justice for Suzie? I can only say that the ending gives me great happiness.
Knocked Up : A comedy featuring a E star employee who finds herself getting a promotion to be on the TV screen interviewing celebs, has a one night stand and ends up getting pregnant – with not the guys she initially anticipated to have a baby with.
The Invention of Lying : Featuring comedy actor and writer Ricky Gervais, our world is full of honesty without one person ever lying. Harsh and critical honesty, turned around when he invents lying for the first time!
These are all my favourites to watch! Hope you enjoy them as much as I do!
Found this old blog post just one week after receiving my stoma in 2015! I thought it would be great to get it published for any new or upcoming ostomates can have a read!
So as all of you are aware, I received surgery a week ago and now have a permanent stoma (ileostomy.) I have recovered so well so quickly! I was walking the next morning and was off my PCA pump on Saturday morning! I am on regular pain relief and got home on the following Wednesday! It’s great being able to eat foods I couldn’t before and not feel so ill with constant toilet trips! I am settling in at home great too! The only thing I am struggling with is doing the housework and sleeping.
The operation went extremely well and was done via keyhole. The doctors, surgeon and nurses are amazed at how quickly I have recovered from this, as are my family and friends. I am still sore and weak, I also get tired so easily but being able to do my own washing and have the comfort of my own tv and sofa is amazing! Spending time with family and friends isn’t spent in the hospital for once! My scars are still quite purple and sore to touch but I am so thankful to be alive, writing this blog right now. I know that if I didn’t have the surgery, I would be dead, the sepsis and infection in my large bowel was really bad, my surgeon said during removing it, my large bowel was disintegrating inside me.
A bag on my side is such a small price to pay for my life. There is still so much that I want to do and achieve in my life! When I have healed completely which will be in 3 months time from now, I hope to be getting the house finished and get my passport sent away and start saving up for my first holiday! A brilliant Facebook page I am a member of has changed my life completely, called #GetYourBellyOut. Everyone has been so supportive to me and my mum and I have made some AMAZING friends there! I couldn’t have went through the surgery without my friends on #GYBO, friends, family and my amazing doctors. I really want to say thankyou to every single one of you and I have so much love for you all! This blog is dedicated to all of you! One friend in particular who is more of a sister to me called Levi has been there day and night and we have so much in common! I love her to bits and wouldn’t be where I am without her!!! So I now leave the end of this blog as my takeaway is being delivered to my door and away to put on a DVD!
Super sweet to read back on this blog piece and to remember exactly how I felt that night too. As for my friend Levi, that still goes! Crazy to think that had I not met her when I was newly diagnosed at 17, I wouldn’t have come across GetYourBellyOut when I did. Since then, just recently, I raised £100 pounds for the charity to say thankyou for all that they have done for not only me, but the entire IBD and Ostomy Community.
During 2004 I suffered with abdominal pain, leading to bleeding and weight loss. This went undiagnosed for months and the belief was that it was due to something as simple as haemorrhoids. After significant weight loss and bleeding I was taken in for further testing (colonoscopy, blood tests and scans) and was admitted to hospital in November. They diagnosed me with a form of Inflammatory Bowel Disease, Ulcerative Colitis. I was put on various medications to try and treat the Colitis and was sent home. I started to see some recovery, but during some very cold weather in December my health deteriorated again. I was admitted early Jan and remained in hospital until March, this time I had surgery for an Ileostomy, only weighing 6st.
My recovery was very slow and I had no support groups or advice around me at the time. After 6 – 8 months I took it upon myself to go down my own fitness route and try and build my own mental and physical strength. The medication was holding the Colitis at bay in what remained of my large bowel, but it was still a daily struggle. After approximately 18 months, I requested a different surgical team. This was due to me wanting the remaining bowel removed and the current surgical teams reluctance to do so. My reasons for wanting this was due to being so young and I had no children etc and the surgery would or could reduce the chance of me being able to have a family, but it was a risk I was willing to take to be better with my health.
My care was transferred to the RVI in Newcastle and I met with a surgeon who immediately agreed to perform the surgery at my request, as he believed my reasoning to be good enough as it was all about my health and wellbeing moving forward. The Colitis was slowing and hindering progress. So, in April 2007 the surgery was scheduled and took place! I was discharged within days. My recovery was only hindered by an MRSA infection in the wound, which has left additional scarring but still gave me no regrets.
By August 2007, I was back on my fitness journey, through gym training, running & Jujitsu training. In 2008 I gained 3 grades in Jujitsu and moved onto different forms of self defence and Martial arts, as well as boxing. In 2010 I ran the Great North Run (half marathon) and continued to push my limits. Again in 2011 but with added weight. For the next few years I started focusing on weight training and did sustain various injuries along the way, my outlook was trial and error to learn about my body. To start trying new things but to understand what was good/bad for me. I rarely had any issues and rarely suffered from flare ups. But when I did they were quite severe, forcing me to stop training and at times seek further medical help via my GP or even A&E. I learned that some training aids such as proteins powders were affecting me. So again I started to consider what or how I was taking these supplements and worked out what was the right balance for me.
2014 was when I first reached out to the IBD and Ostomy community, this was due to an incident in the local gym. I had always been reserved and quiet about my stoma, never discussing openly or letting anyone outside my close circle even know it existed. One evening my sparring partner heel kicked me in the stoma and I dropped, this was the first time I had shown pain and he had no idea, so when I showed him, he took a picture and it ended up online and then contact was made with various people. Some of which are great friends of mine now! Since then I have been much more open, showed a lot of awareness of the disease and my stoma. I even posted a picture of myself the year before to now on the anniversary of my surgery (stomaversary.) In 2016 I competed in a 13 mile Tough Mudder in aid of Crohn’s & Colitis UK. I continue to support and show awareness to this day.
My training now is different and I have pushed so many different boundaries that I feel able to do, I also help and even advise/create training plans for anyone wanting to learn various techniques or goals with or without chronic illness/ostomy. My current programme is for size and strength and have safely gained almost 2 stone in 2020 as well as dropping 8% body fat. I was asked to be part of a local calendar this year and have recently taken part in the photo shoot with all profits going to charity, one being an ostomy related charity called The Purple Wings Charity (you can information about them here.) I have a much higher social following and will reach out to anyone I see struggling and speak to many in the same boat as me daily. I have made a lot of friends for life and will continue to do so.
Since surgery to put it in perspective, I have climbed the professional ladder, I have done a variety of roles, both external and internal and continue to climb. But most importantly to me, I have 3 beautiful children, all of whom know and understand my illness and support me every day. My eldest daughter Ruby (12) always shows support for me on occasions via her Instagram page. I am divorced, however my ex wife remains my best friend and biggest supporter to this day.
Isn’t Dan’s story absolutely outstanding?! A huge thankyou to Dan for sharing his story.
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.)
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.
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.
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 ❤
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!