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

Weekly Vlog Content – That Crohns Chick Youtube Channel

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At That Crohns Chick Youtube Channel, we have some exciting content coming your way! In my new role as co-host to the channel, I thought it would be good to let you know  about what is new and what we plan on doing!

Live streams are 9:30pm UK time (me) / 6:30am South Australian time (Sharnii) where we talk about all things related to various types of Chronic Illnesses. We have covered topics such as :

  • Dating with a Chronic Illness.
  • Fibromyalgia.
  • Inflammatory Bowel Disease.
  • Ostomies (Colostomy, Ileostomy, Urostomy.)
  • World IBD day.
  • Irritable Bowel Syndrome.
  • Thyroid Awareness Week.
  • Autoimmune Hepatitis.
  • PSC / Liver Transplant.

In a few weeks, we will be expanding the channel and bringing you weekly blogs ” The Day in the Life of A Crohns Chick” which will show you an insight to how we live our daily lives, on the good and bad days, ostomy related, eating out with IBD or a stoma and much, much more! This is a good opportunity for us to let people who are not chronically sick, have a view of what it could be like which therefore can help them support those they know that are chronically ill. We will also be highlighting medications and what mental health can look like and also bringing you some positivity and laughter. This is also a chance for you to know us a that little bit more and what we enjoy.

We are looking at having more people on the channel with various Chronic Illnesses, so if you are interested please message  Glitteryguts or That Crohns Chick! We want to raise as much awareness of any type of Chronic Illness out there and look really forward to what is yet to come!

 

 

 

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Awareness, Life With A Stoma

Flying With A Stoma

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One thing that ostomates may find difficult to arrange is a holiday via flying and aren’t sure what to do with their ostomy supplies and medication.

Before flying , I like to get everything organised at least two weeks prior to flying so nothing is left last minute and I end up forgetting something. It’s important to check the regulations of the air service you are flying with on what you can and can’t take in hand luggage. Many ostomates don’t know that you can actually take your supplies with you in hand luggage but you must have either a doctors letter or you can call the air service and let them know, they then put this on your flight reservation notes. This avoids having to leave them behind as I almost had my stoma stuff put in the bin at security in 2017 when I flew to London.

So what did I take in hand luggage?

  • Hand sanitizer 100ml
  • Phone charger
  • IPad
  • Purse
  • Medication
  • Doctors letter
  • Stoma supplies
  • Walking stick

I also took my dressing gown as I couldn’t fit it in my suitcase (woopsy!) My doctor’s letter was required as the type of medication I am on has had new laws put in place which means it is a controlled substance. The letter cost £10 for my GP to do and although it may seem a bit odd to pay for a letter for medication however had I not had my letter and something went wrong, I could end up with no medication and go into withdrawal which believe me it is the WORST thing to ever go through.

Just before going through security I went to the assistance desk and asked for a lanyard after seeing some ostomates in the Colostomy UK Facebook group with one when flying. When I called prior they also put assistance with walking and boarding the aircraft incase my joints lock. You must be wondering what is a lanyard? A lanyard looks familiar to a USB stick neck holder except it has a purpose. It represents hidden disabilities which has the aim to make travelling more friendly and accessible for everyone. Aberdeen Airport also offer a service prior to flying which gives you a tour of the airport and travel plans so you are more familiar with your surroundings and on where to go. The Airport launched their new hidden disabilities lanyards in partnership with Friendly Access in 2017.

The lanyard helps those with a hidden disability to enjoy their travel experience and to make your time travelling as stress free as possible in a hectic environment. They act as a discreet indicator that the person flying has a disability to airport staff to easily spot who may be in need of support. They are very useful for when you are going through security search areas of the airport. I think this is a brilliant scheme put in place for all people who suffer with an invisible illness and it also means that they don’t have to write or say all that they suffer from to anyone in public. Lanyards can be requested at assistance areas of any airport if you go to the desk and ask for one.

When on the plane, your ostomy bag may balloon as it fills with air due to the air pressure so always make sure your ostomy bag is empty prior to boarding the plane as it does make a bit of difference. The aircraft has a toilet so if the ballooning concerns you, you can let it out in there. Many people with anxiety find flying quite a nerving experience and as someone who hates flying, my anxiety does suffer. I used to get a relaxant from the doctor but now I like to distract myself with a book, music or a film on my iPad.

The next airport I go to is Birmingham Airport.

The assistance desk was great as I asked for a lanyard. I was then asked if I needed any help and if I did just to ask. Taking my stoma supplies through security was no problem at all. As I walked through the scanner, it went off due to my lanyard having metal so I was taken to a very cool X-ray machine which showed where my bag was! A female member off staff gave me a pat down which was gentle and her and her college were really polite so it made me completely at ease. I also noticed whilst at the assistance desk, a screen which let people know that they have other services available to help people with autism, their family and carers. Prior to boarding the plane, I stopped by Costa and had a chicken fajita, egg sandwich and a bag of my favourite crisps – Pom Bears!

During the flight my stoma bag made quite a lot of noise but I don’t think anyone noticed! I emptied my bag in the very small toilet and it was no problem at all, I even managed a nap!

I wanted to know other ostomates experiences when flying, good and bad. This is what they told me:

Julie: “I have a urostomy and had my very first flight last year. I took 10 bags, adhesive remover wipes , dry wipes, black disposable bags, I had a card signed by my nurse at the doctors saying I am carrying scissors all in my hand luggage. I kept spare sprays in my hold luggage. I had no problems through security and even though I was so scared of my bag leaking nothing happened all was a good experience for me.”

Linda:I have a colostomy and a urostomy, and have had no problems at all, carried what I might need in hand luggage and the rest of my supplies spread between our suitcases. I did worry a bit about coming back and connecting my ‘night bag ‘ to my urostomy for 12 hour flight back to the UK but didn’t do it as I cant really sleep on a plane so just got up to empty as I normally do. My stoma nurse did a letter for me to take.”

AJ: “I have never had any ballooning whilst flying and the only issue had with stoma supplies in hand luggage was when I never put spray in the plastic liquids bag. They just said to make sure I did in future. I didn’t take a doctor’s letter with me.”

Jennie: “I had to change my bag on a plane about 4 months after my surgery. I had started to leak and had to change! The toilet was tiny so it was a bit awkward! I’d pre cut my bags (about 3/4) for the plane so I didn’t need my scissors in hand luggage and they let me take my spray in a clear bag in my hand luggage. I topped up my travel insurance though to make sure I was covered as it had only been a short time since surgery but a doctors note never even crossed my mind. I went through security okay I was nervous but I was just honest with them I knew they’d feel it so I told them about it before I went through to save any embarrassment.”

Samantha: “I have had my bag 11 years and been on holiday probably every year since with no issues. I have never taken any travel documents but I did have an extra search before but as soon as i showed them the bag they were fine!”

Roxanne:I’ve flown a few times with my bag, it’s for a fistula so less issues with output etc than a stoma, always been fine, at Amsterdam airport, it obviously showed up on the body scanner thing, so when I told them what it was, they took me to a wee cubicle to show them in private and it was fine once they and seen it, not had that anywhere else with body scanners.”

Graham: “I always carried my supplies in hand luggage and spares in hold luggage, spread out with my parents cases just in case one case went missing. I had letter from gp explaining my supplies and had it copied into the language of the country I was going to which was spain. I never had problems at security, I just told them I was wearing a medical appliance and had a letter if they needed to see it.”

Rosie: “First time I flew with mine, I didn’t pre cut bags which could have been messy if I’d have had a leak, luckily I noticed before the return flight! The ballooning was a surprise I wish I had been warned about!!”

Sheila: “I have flown several times, and never had a ballooning problem as long as the filter is clear, and I carry a weeks supply of everything I use on a daily basis, in my hand luggage, plus the same again in hold suitcase, if your luggage goes missing, you still have 1 week of essentials at hand,, all pouches are pre -cut. It’s handy to get a medic passport from your supplier, signed by your care nurse as it’s in several languages and explains the holder wears a stoma pouch “

Lauren: “At Belfast International airport I got an extensive search and I was made to raise my top, which I obviously was nervous about as there was a queue of people waiting to come through the bleeper machine. They all just staring at me and my stoma bag and I didn’t want everyone seeing so I tried to say discreetly that the bulge under my top was in-fact a stoma bag. I was completely ignored and I felt so embarrassed that I had to continue letting the person search me repeatedly as well with the hand held machine. I wasn’t best pleased. I took my stoma supplies in my hand luggage and some in my handbag. I declared the adhesive remover but this was a massive problem in Gatwick Airport several times, even with a doctors letter explaining this and my medications.”

Lisa: “I’ve my stoma 4 years now and I’ve flown a good few times since I’ve had it. Even flew 6 months post op too, now that was more so nerve wrecking for me as I was on my own and didn’t know what to expect at first. But since then I’ve been on And off planes a lot with no issues at all. Most times when I go away I’ll change my bag the Night before so it’s nice and fresh, I’ll pack extra bags depending how long I’ll be away for. Lucky for me all my bags are pre cut so no need for scissors. I pack bags in my suitcase, along with my barrier rings,wipes, pads etc and more in my hand-luggage Incase my case goes missing. As for the sprays they go in the little clear liquid bag. I do carry a letter with me from my GP stating what’s wrong with me health wise and I’ve a little stoma passport I got from my stoma nurse a while back. I’ve been patted down a few times when I was going through security and some have asked what the bump under my top was and others haven’t noticed. They have asked to see it when I told them what it was and they’ve just swabbed it and I was off I went. When I’ve flown my bag has been fine, I make sure to empty it before I fly. I’ve only had one leak when I got off the plane but that was when I had my bag first.”

Kizzy: “I always split my ostomy supplies between my luggage, and I always pack at least double the amount of supplies needed, if not more (you can never guarantee that your not going to end up with an iffy tummy with all that foreign food). In my main suitcase I would put 1 box of ostomy bags, waste bags, my adhesive remover, barrier spray, a pack of conti wipes, a pack of wet wipes and my scissors. I would also put 20 pre-cut ostomy bags, waste bags and conti wipes in my hand luggage. I remember only one instance where I was stopped, and that was on my way back from Ireland and it never went further than a pat down. In 2015, I was taking a fair few more medications than I ever had previously so before I booked a holiday to Turkey, I looked into whether the airline I’d be going with allowed extra hand luggage for medical items. There was and I required and got a letter from my gp (this varies in price depending on your gp… I think the first time I got one it cost me £5, then when I needed one a couple of years later, it cost £20) They would allow up to 5kg of medical items in separate hand luggage bag. I had no issues on the flight out, on the way back a member of the airline staff approached me and told me I could only have 1 piece of hand luggage. All i had to do was show her the letter from my Gp and I had no further issues.

Hanna: “I make sure I change in the loo before flying so I’m fresh. Also don’t take my scissors in my hand luggage, I pre cut. As long as your potions are in a clear bag, they’re fine. I didn’t take all my supplies in hand luggage the first time, I had some in my suitcase and some in my hand luggage. In February, I only had hand luggage so everything was in there. No problems. I didn’t have a letter or anything, the only problem if you can call it that, was my oramorph had to be tested. The airline Ryanair advised me to ring them before I fly next time because I can get an extra baggage allowance because it’s a medical need.”

Abigail ” Flying with a stoma is OKAY! It’s EASY! Too many people panic, believing the horror stories of that the bag is going to inflate and explode! I’ve been flying full time as long haul cabin crew for British Airways for 2 years with Polly! My top tips are; Put your scissors in liquids bag Sprays in liquids bag Half your trip supplies in hand luggage and half in hold luggage If needing to change mid flight use the baby change toilet (there is always one on every airline if you can’t find it ask the crew) and lay everything you need out in front of you, we all know toilets on aircraft aren’t the biggest but this gives you so much more organisation and space Your bag doesn’t inflate with “pressure” Stay well hydrated Hidden disability lanyards are great if you’re nervous about security My main tip is if you EVER need any help on board ASK YOUR CREW! We have been trained so intensely including medical, we can support you be there for you and we can do whatever it takes so we look after you, never be embarrassed to ask for help as it’s our job to look after you!”

There are mixed experiences and my best advice is always carry some documentation such as a travel certificate from a stoma supplier or a letter from your GP, it’s better to be safe than sorry! If you are an ostomate and anxious about flying due to having a stoma, I hope this information helps you as much as it has helped me.

Life With A Stoma

Finding Love With A Stoma

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One thing that has been such a positive impact in my life is finding love with a stoma. Many people think “well weren’t you in love before you had a stoma?” and of course, I had relationships and loved people whilst suffering from Crohn’s Disease and Ulcerative Colitis, however all relationships lacked that understanding and support that I needed and I was never given that love back. I was often misunderstood if I was unable to part take in things like clubbing, meals, day trips those types of things and if I lay in bed or called in sick at work, I was told I was lazy. That’s how every relationship mostly went until late 2017 when I had a request follow on Instagram from an old friend whom I used to talk to about Crohn’s Disease back when I was 17 and newly diagnosed! We had lost touch over the years due to an abusive relationship and reconnected as friends at first. As time went by, he became single and we decided to meet up for the first time playing a computer game called League of Legends as my laptop had broke and it was away being repaired, he let me borrow his for the night.

We would talk about having stoma’s and him having a ken butt and myself having a barbie butt (where the rectum is removed and sewn up), about our journeys with illness and failed relationships, lost friendships and family. That first night we met, the hours flew by and before we knew it, it was 3am and time for him to go home! Two days later we met up again and have been inseparable since! We connected in a way that we didn’t have to sit and explain why we were sore or why we kept farting when our stoma’s were active, instead we just giggled! We got engaged 3 months later and it was was our year anniversary last November! Jaimie looks after me mentally and physically and since we got together my health has declined and I always keep telling him that if he wants to leave then he has the chance to, to which I am told “no chance!”. I have also been able to help Jaimie with his stoma with products and I order his stoma supplies for him, making sure his skin isn’t sore and when we have stoma issues we both help and comfort each other.

We have had some incredible journeys together including The Purple Wings Charity Ball in August 2018 (which is a charity helping ostomates), building our family with my 2 yorkshire terriers and Jaimies Yorkshire Terrier and Puggle, I had surgery in June 2018, many hospital trips/admissions/appointments, road trips, spending new year 2019 in the hot tub and seeing The Enchanted Forest Exhibition here in Scotland! Having a stoma has brought me more life and love than I ever could have imagined and has given me the freedom to be able to do things when I am well enough. Being completely honest we both have seen many ostomates worry about finding love because of having a stoma or a Chronic Illness. There are so many options available to hiding your stoma bag if that’s something that you are better suited to such as support wear from Comfizz or finding high waisted briefs for the ladies. At the ball Jaimie wore the unisex boxers and they really are great for keeping your clothes flush for special occasions! I wore my Jasmine Stacey Collection Royal Blue Set. Otherwise we don’t care about seeing each other’s stoma’s in fact now I think it would be weird if we didn’t see each others bags! Most of all Jaimie has helped me gain some confidence back that I had lost due to past mental abuse and thinking I was never good enough, sometimes I still have those days and it’s so heart warming to know that even with my hair scrunched up, my pyjamas on and feeling really fatigued with eye bags that someone does love me, someone does care.

We have so much planned for 2019 such as the Get Your Belly Out ball on the 6th of April, The Purple Wings Charity Ball and hopefully a holiday outside the UK with my best friends Levi and Steph. We also have a lot of hospital appointments this year such as MRI scans for me, surgery for Jaimie, new consultant appointments for me in new departments and infusions. I recently got a new tattoo above my stoma with the IBD ribbon, the date I got my ileostomy and survived sepsis and the Sepsis ribbon. Jaimie gets his next tattoo tomorrow then I am next again in May!

Never did I think that I would find someone like Jaimie – someone who gets me, over looks my flaws and loves me for the weirdo, short fused and crazy person that I am, someone who wants to start a family and wants the best for us. I look so forward to getting married one day, being able to move in together and be a family.

Having a stoma is not the end of life, it is an entire new chapter in life.

-Alannah.

Awareness, Life With A Stoma, Uncategorized

Colostomy UK Events!

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The Colostomy UK charity supports and empowers people living with a stoma. This year they have some fantastic events for ostomates to attend and the best part…? for FREE! Yes you read that correct! Ostomates can gain confidence and be active without the worry of funding it themselves.

A little more about Colostomy UK;

As mentioned above, they are a charity who help and support people with stomas. They also have a support group on Facebook with over 7,000 people, which you can find by clicking here and is run by volunteers. They also have volunteers on a 24 hour phone line which is 0800 328 4257 if you would like to talk to someone.  Their website which is linked at the top of this blog has so many resources such as a blog which shares people’s stories, to view my story on their blog please click Alannah’s Story, The Tidings Magazinea link to your local Colostomy UK support group, Open days and films!

So what events is available to take part in this year?

For Swimming Locations and Dates:

Rugby League Matches: 

Bigger chair yoga activity Locations and Dates:

  • Chester hospital open day April 24
  • Stoke Mandeville hospital open day June 8th
  • Bristol Ostomy support open day June 1st

 

The activities are run through a project called Active Ostomates and carried out through support groups. You don’t need to be a member of the support groups to take part but it means that people are carrying out these activities with people they know, in an environment they know.

Hopefully you are close by and can take part!

 

 

Life With A Stoma

Stoma Products Review: Pelican Vitamin E Bags

Today I am sampling the Pelican Platinum vitamin E ostomy convex bag, after seeing these on social media and knowing @crohnsfighting and how well the bags have been for her, I wanted to sample these bags to see if they would also be good for me!

They arrived this morning (13th March) and I received a lovely letter informing me about the product, that they are available on prescription and should I have any issues or questions to contact them with the contact details!

My first thoughts were great! The bottoms of the bags were already closed up so there was no issues with all the bags sticking together inside the packaging. The only thing I was a bit unsure about was that there is no measuring guide on the actual flange itself, to know how big you are cutting. As I don’t have a stoma template I have had to guess how to cut it. However this is perfect for a newbie ostomate, if your stoma is still changing size.

The ostomy bag is a lovely nude/skin colour and works really well with the skin and it is much less visible than most other ostomy bags out there when on the stomach. It is also very light and the shape is great! For me it’s also another benefit that the shape isn’t too different to my current bags because I can still wear my stoma bag covers.

The aim of the vitamin E range ostomy bags are designed to do:

  • Moisturize – To help nourish the delicate skin around the stoma and prevent dryness. It also hydrates the skin and helps to prevent water loss.
  • Faster Healing – To help improve the skin condition by repairing skin that has been damaged through skin stripping.
  • Kinder To Skin – To help reduce skin damage and skin redness with antioxidant properties.
  • Anti-Inflammatory – To help minimise skin irritation caused by pouch application and removal.

 

So what is the product like when on?

Putting the bag on was extremely easy and the wafer flange stuck instantly without any peeling at all. As you can see in the pictures above and below, the colour really blends in well! I also love how small the velcro and sides at the bottom are. I have had the bag on for over an hour and still there is no peeling at all and my stoma feels safe and secure. I will be using this bag again!

The convex is also perfect for me because there is no pressure or pain when wearing this ostomy bag. It also ensures that I don’t have a leak. I really love how even without a bag cover on, I cannot feel the bag at all unless Lola decides to trump! I highly recommend this product for new ostomates!

To  order a sample from the Pelican Healthcare range, please click here.

Life With A Stoma

Stoma Product Review: Trio Pearls

Having high output can be difficult to deal with. During the day you are emptying more than normal or if this is normal for you then it’s the case of emptying all day, every day. At night you are up and down from the toilet. You get leaks because of the nights and days running back and forth and have sore skin from the leakage.

Some days I get high output too (although my usual is constipation) with my Ileostomy and it can be a nightmare when Immodium doesn’t work like you want or need it to. I was scrolling through my newsfeed on Instagram and seen that Trio Healthcare Ltd (instagram name trioostomycare) do absorbing agents called pearls. I read that when inside your bag, they absorb the liquid inside! Instantly I knew I needed some as that day was a high output day.

I recieved them in the post really quickly! I had been waiting for another high output day to try these and a few days ago I had a day of high output of water and was able to finally try them out!

I opened the packet and yep you guessed it – I spilt some all over the place! I am quite clumsy! (I then read on the website you put the sachet in your bag and the packet dissolves whilst the product absorbs!) Anyway, I opened the bottom of my bag and gave it a good clean then put half of the packet of pearls inside. When I next needed to empty my bag, I noticed that my ouput was thicker and pretty much normal!

I then left my bag to fill up again after just to make sure it was the pearls and not my output changing. It stayed like water! I wish I had put a full packet in as I think the outcome would have been much better. If liquid output or should i say – water ouput is something you have problems with then definitely give these pearls a try!

To order your sample click here.

Life With A Stoma

Stoma Product Review: Trio Siltac Ostomy Seal

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Trio Siltac Silicone – Ostomy Seal

Making the change to try different ostomy seals, I was apprehensive. I kept having leaks and my skin was burning daily!

I ordered some samples from the Trio Healthcare Ltd website and these beautifully packaged seals arrived by post in just a few days. When it came to bag change day, I took them out the packaging and wasn’t sure how to apply at first. I then realised they expand so easily and once placed around the stoma, the seal doesn’t lose shape. So the silicone is definitely easier to apply than most I have tried.

I also found that they are nice and slim which ensures the ostomy bag to stick well and flush to the skin. The size of my stoma is around the 20mm mark so I used the 20mm – 28mm and they are on my prescription list now! I also use the adhesive remover and skin barrier sprays with these ostomy seals which you can find here.

On a personal preference, I like to air out my skin after cleaning before applying anything onto the skin and drying the stoma first before putting the ostomy seal onto the skin to ensure it sticks well. If I have a bad leak, I use calamine lotion but on all good and bad days I stick to these go-to products!

Life With A Stoma

My First Time Swimming With A Stoma!

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Today I went swimming for the first time with my stoma and it was GREAT!

I got up early today and walked one of Jaimie’s dogs then came home and did some washing – the usual household chores and finally decided (after weeks of bleeding and being unable to go swimming) that today was the day I was going swimming. I had my shower and popped on my swimming costume under my clothes and took my stoma supplies with me incase I needed them, a large towel, toiletries and some change for a locker and to use the hairdryer to dry my bag afterwards. As I walked into the swimming pool, my auntie who works there let me know that due to being on PIP and ESA, you get 60% off!  After setting this up and paying which only cost me £2 to swim today! , I went through to the changing facilities and put my stuff into a locker and went into the showers before entering the pool.

The first thing that got me excited to swim was the amazing smell of the chlorine and how much memories came flooding back to me from my childhood swimming with friends and family. I put on a swimming cap and goggles and dipped into the water, it felt luke warm so just perfect! As I haven’t been swimming since I was diagnosed with Crohn’s Disease at 17 in 2012 I was a tad nervous that I had forgotten on how to swim! However I put my right foot on the side of the pool and pushed myself and off I went! I was grinning from side to side of my mouth with pure joy, the feeling of pushing through the water was truly amazing. It felt so great and although my joints in my legs did hurt a little, I know it will help them in the long run as it has been recommended by many healthcare professionals to try to help them.

I managed to swim in there for around 45 minutes taking breaks in between and then decided it was time to set off home. I went into the showers and freshened up then dried myself with my big fluffy towel and got dressed then set off home. Once home I felt so relaxed and my joints were a little swollen but nothing compared to what they usually swell up to when I go for a walk! My ileostomy bag and Astoa Adhesive Flange Extender stuck really quite well with only a little peeling at the top where the skin would normally tighten and pull when doing day-to-day tasks or sleeping. Mentally this has been really rewarding for me in the aspects of my mental health with feeling more positive and then being proud of myself for doing something like this!

I highly recommend swimming but please do make sure you get permission from your surgeon or IBD Team first as if you have wound or fistula issues then it may not be a good idea. My advice to anyone wondering about your bag leaking – with the right products this will not happen! You can also get ostomy swim wear at Vanilla Blush (to view womens click womens and to view mens please click mens) or Respond Healhcare to view their range please click here.

Wishing you all the best of luck if you decide to give swimming a chance again!

 

-Alannah A.K.A Glitterygutsx