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

BBC Radio Brain waves

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After talking with the lovely Pennie from BBC Radio Scotland, we had a cuppa at my home and recorded some conversations on topics for the Brainwaves Podcast edition for Series 7 in 2020.

In Pennie’s Brainwaves series, she explores the science behind our everyday experiences and shares this with scientists who work in Scotland. The first series which started in 2014, covers topics such as Edinburgh Science Festival, Obesity Figures in Scotland. Series 2 covers topics such as how sounds affect people, meeting and talking with scientists and professors and meeting Karen Vousden, director of Cancer Research. Series 3 covers topics such as Biometrics, The Psychology of Cheating, Donating your body to science and The Flu virus. Series 4 covers topics such as The Northern Lights, Antimicrobial Resistance and the Anatomy of a stroke. Series 5 covers topics such as The problem with plastic, The Invisible Disease and Child Tissue Donation. Series 6 which covers various topics such as Food For Thought, Street Drugs and Pain.

Series 7 which is set to be released early 2020, is currently being recorded. Subjects include a shocking insight into the prevalence of perinatal PTSD, a real eye opener on what might be the next big environmental pollution issue plus a few good, bad and ugly facts about fat.

I am VERY excited for you all to hear our one which covers many subjects! When it is published, I will make sure to update you all!

 

 

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

The Mental Health Taboo With Pregnancy

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After watching Loose Women, a celeb dating star Anna Williamson talked about her mental health before pregnancy, during and after the birth of her first child. Anna was extremely brave in talking about something that society has a set perspective on when it comes to pregnancy and having a family which is that pregnancy should be the most exciting and amazing time of your life. But that isn’t how it is for many who suffer from mental health conditions.

In my blog IBD – Pregnancy/Termination I talked about my situation when I became pregnant after being told I would never be able to get pregnant and to help other women in the same situation I was in which was that I was told this information based on opinion and through no fertility testing. However I never talked about the emotional impact this had and STILL has on me. It’s hard, and that’s putting it lightly. Since then I have had another miscarry and I am desperate to be a mum. They say to look at that silver lining and for us, it’s that I know I can get pregnant now!

I spoke to women and men who also felt that mental health had a big role to play prior, during and after pregnancy;

 

Kellie

“It felt like I was going to fail as a mom. When I was pregnant over three years ago, four months before falling pregnant I had my stoma operation. My surgeon was very concerned which made me concerned and panic. There were regular what ifs and what if this baby didn’t make it  as I had had 5 miscarriages. At ten weeks, my whole life was on pause as they didn’t know if I would survive, they diagnosed me with a brain condition and I went blind for three months. I was in such a dark place I didn’t know if I was going to make it, I kept asking myself was my baby going to make it, or if we did pull through how would I cope being a mom with a new illness on top of the illnesses I already have!”

“Pregnancy was no walk in the park for me, and I couldn’t be alone. I was scared to be left alone so my partner would come to the hospital everyday and be with me from 7am that morning till 11pm at night. I had to stay on the phone to him all night just to try and stay as calm as possible. I was also on different types of medication as they didn’t know if the baby would come out addicted to the medications or not. I wasn’t on medication by choice, I was on medications to try and survive and for the baby to survive. I had open brain surgery at 20 weeks pregnant and I honestly thought when I was being put to sleep that it would be the last time I would see my family. I didn’t bond with my son for a few months and unfortunately, it took longer for me to bond with him as all I did was sleep and eat. My partner actually had him the majority of the time after major bowel surgery, being ill, open brain surgery and being a new first time mom. Delivering conor I was all over the place between hormones. I really didn’t know if I was coming or going. When I got better and when I was allowed to go home, I was close to my due date and I kept having panic attacks thinking something was going to happen to the baby or myself. I couldn’t sleep, I was restless, I was alone.”

Laura

“I’ve been on maximum dose antidepressants for depression and anxiety since the age of 14. When I became pregnant in 2010, I was seen at the hospital regarding my medication. They advised me to either come off my medication or to switch to one that would have less effects on the baby. My anxiety told me to stop my medication completely, I couldn’t bare the thought of any medication having a negative impact on this little person I was growing. The first few weeks weren’t too bad, I found myself either feeling on cloud 9 and the happiest person alive or I then felt myself pushing everyone away and isolating myself. I kept blaming it on pregnancy hormones and carried on as I was. My baby was born prematurely in April 2011 via emergency caesarean. Nothing prepared me for that, and especially for what was to follow. I blamed myself entirely. I blamed myself for my tiny baby being in high dependency. I felt like I had failed him, my body had failed him, and for weeks I bottled these feelings up and tried my hardest to embrace my new role as a mother.”

“When I finally brought my baby home, I made sure he was clean, fed, loved and my god did I love him. But there was always this overwhelming feeling inside that I wasn’t good enough. I truly believed that I didn’t deserve this baby and didn’t deserve to feel happy. I told myself I didn’t love him enough. I struggled in silence for 6 months before admitting that I needed help. I openly told my doctor “I can’t do this” and the GP put me back on to antidepressants. It has taken me so long to accept that I need these tablets to function and to stabilise my emotions. It has taken me so long to accept that I was and am worthy of this special boy. I am no longer ashamed of my mental health issues and I need to take these tablets to make life easier for me and keep those intrusive thoughts at bay then I do! I was also so in love with him but I remember those unwanted and intrusive thoughts creeping in, telling me I wasn’t good enough for this and that I didn’t deserve this beautiful baby boy.”

 

Danielle

“Before I fell pregnant, apart from the desperation and obsession with becoming pregnant, my mental health was quite good. I was always able to control it and get on top of it myself. Never felt I needed to seek much help and always dealt with life’s shit pretty well. But it’s like something changed in me when I became pregnant, I was petrified of losing my unborn baby! SO petrified that I was adamant it was going to happen.
I didn’t really enjoy pregnancy much until 20 weeks. I don’t know why but that 20 week scan made me feel like I could breathe a bit and my unborn baby boy was healthy and he was actually going to be OK. But that horrible anxious feeling never fully went away, I think that’s because I didn’t have a lot of trust in my body, seen as though it had thrown a chronic illness at me out of the blue. Despite all my concerns and issues, besides initial worries from labour, he was a healthy baby boy. I don’t know if my pregnancy anxiety is to blame for my mental health declining once I had him. He had Cmpa ( a food allergy caused by the baby’s immune system reacting to proteins in cow’s milk) from birth so we had our issues and battles which was never easy. He wasn’t diagnosed for weeks and I felt like I was losing an uphill battle with medical professionals. I struggled so much from early on because he screamed, a lot, and wasn’t a happy baby. I felt so stressed and angry All. The. Time, A time that I was meant to be enjoying my new baby boy it was awful some days.”

“Even though I wasn’t alone I felt very alone, very scared, both judged and a very bad mum! I was petrified to talk to anyone about how I really felt incase I was judged! I was so scared someone would take my baby off me and think he would be better off with someone else. I did go to the Drs a few times, trying to explain how I felt but I kept getting dismissed and I lost faith in them. Eventually, nearly 2 years after having him! 2 whole years, I felt like I was losing my mind and I wasn’t a very nice person to be around. I couldn’t control my anger or my emotions. I felt so lost and so far from myself it was unreal! I took my sister to the Drs with me who thankfully listened. I self referred from there advice to try CBT. I give it a good go, I tried a few appointments and stuck to it, but still felt myself sinking. My son was well over 2 now and he deserved so much more than what I was giving him! So I went against everything I once believed in, and asked for antidepressants. I was scared of those because I didn’t want to feel numb, I didn’t want to be emotionless towards my son or partner, but I NEEDED something and fast. So 11 months I have been on them now, and my God what a difference!! I’m quite saddened to think I lost myself for so long and got such an important chunk of my little boys life, and I know, which is also proven, that my mental health WOULD of had an effect on him because I left it too long. But I pray and I hope with everything in me, I have time to reverse any damage and soon enough, before the years out, I’ll be medication free and coping OK. Nobody tells you about this part of pregnancy and being a parent, not peppery. You never expect it to happen to you. But it can happen to anyone. And please don’t do what I did, don’t try cope and don’t ignore it. Ask for help, no-one is there to judge you, only to help you.”

Zoe

“My experiences with a newborn – I went into it expecting it to be the most amazing and wonderful experience in the whole world: especially after all the ivf and how longed for our baby was, I thought it would be magical. And don’t get me wrong, it was wonderful, but wow it was so hard too! The physical exhaustion of having a newborn affected me more than anything. I was breastfeeding for the first 2 and a half weeks, and he would feed constantly. And I mean constantly. There was no physical time left in the day for me to sleep. I was beyond exhausted. I was losing control of my mind, I felt like I was ghosting my body, like I wasn’t there. I felt like looking after my baby was a chore. I didn’t feel like I could enjoy even the cuddles. It wasn’t until I started bottle feeding, where Harry actually enjoyed being put down, I could actually sleep, and I got my sanity back. When he was breastfeeding, he would only settle on me, he would only sleep on me. It was relentless. I didn’t want to tell anyone, I felt like I was failing and I had to keep my front.”

Debbie

“I have recently had 3 miscarriages, and during my pregnancies with both my daughters in 2007 and 2008, I had strep B with severe sickness. Due to severe depression which I was diagnosed with in 2009, my two girls were taken away and have been adopted. I found it hard to manage simple things like cooking, couldn’t eat without being sick so ended up being anemic for a while, I couldn’t get much sleep as I was always lay awake worrying. Due to this awful experiences, I have ended up not trusting professionals and I still don’t. I was always worrying something bad was going happen and this has affected my mental health long term.”

(this gentleman is being kept anonymous) 

“I find men don’t know what to expect during pregnancy, and I personally found that when going into the hospital with my partner, I was ignored by the staff. They don’t tell you what to expect or how it’s going to be. When we had my youngest, my partner was on gas and air and I sat there doing nothing until she went into labour, nobody talked to me or said what to do or helped me cope with it all. I think because we aren’t the patient, we are left to it which I think is unfair as it’s an experience to go through together as a couple.”

Amy

I have never been very maternal, yes I wanted children, I wanted one each a boy and girl, but for me I had to be a lot older, successful and married. Obviously fate had a different idea. I fell pregnant 3 months after dating my boyfriend, it was mid Jan 2015 when I found out. I had just landed a full time permanent job and this really put a spanner in the works. It was a shock, this wasn’t planned and I didn’t know my boyfriend that well enough either. Even though my pregnancy was a shock, I knew then and there I was sticking with this pregnancy. My boyfriend however wasn’t so keen on the idea. I broke the news to my parents and apart from an initial shock the next day they both supported me with whatever I decided. My boyfriend took a whole week to tell his parents and they weren’t thrilled either. Back then I think I should of left him as the warning signs were all there.

My pregnancy wasn’t easy at the slightest, I’m 4ft9, I was about 5 and a half stone then, so growing a baby left me in a lot of pain. I was sick constantly and was back and forth in A&E as I was so dehydrated and had constant drips to help with that. I had sickness throughout until I actually went into labour. My boyfriend came to terms with things but wasn’t at all in the slightest encouraging. He came to most of the scans, as did my family but he wasn’t overwhelmed with emotion like we were. Anyway we got prepared and minus the sickness and needing constant growth scans, (as for a while baby was growing quite small) things were fine and dandy. My due date was 4th October 2015. I got told I wouldn’t be on time and would be late, however on the 14th September, I was getting a lot of pain and started bleeding. On the 15th pain was worse and my mum decided to time them and low and behold I was actually starting labour. The labour ward got me in when my contractions were about a minute apart and after a quick sweep and realising I was already 4cm dilated, I had a birth pool running and we were in hospital. 16th September 2015 at 7:56am my daughter was born at a beautiful 6lb4oz. Apart from being a bit blue and mucusy she was fine and after 24 hours we went home. This was when things went bad. My partner moved in with me in my parents house, but they just couldn’t get on. He hardly helped with our daughter and at this point I became quite poorly myself as was having a lot of stomach pain. It got so bad at one point I had to get an ambulance round. No-one could work out what was wrong so was put on some painkillers. Day 5 of my daughter’s life and after a few days of her being jaundice my midwife and health visitor told me to get her to hospital and myself as well as I was running a fever and not being well. So we did. We both got admitted in.

My daughter was poked and prodded with numerous tests and she was rushed straight to NICU as her bilirubin levels were dangerously high. We were told if they continue to rise that she may have brain or organ failure. We were told to expect the worst if things didn’t improve in 24 hours. She was put in all uv lighting. She had tubes going everywhere and the tiniest cannula ever. This was when my mental health went bad. My heart was breaking in so many ways. How can this happen? I’ve only had her in my life for 5 days, you can’t take her away from me now. Will she live? Will she have permanent problems? How am I going to cope? Why the hell has this gotten so bad? I was distraught and worse I was admitted in and until they can figure out what was wrong with me, I wasn’t allowed to be in nicu. I was breastfeeding so I needed to be there so I could do that. They allowed me for that reason but after 2 days my bloods came back saying I had an infection and while that was going on I no longer could be there. So I expressed. But I wasn’t making much sense, which then made me cry my eyes out as I couldn’t even do one simple thing for my daughter. The hospital was amazing. They made sure I was being checked on and keeping me updated constantly about my daughter. I had the mental health team round as my scoring was very bad so they sent the support, but I refused, I just wanted to be with my daughter. Her father hardly went to see her, he was more interested in playing his game or sleep. At one point he saw her for about 10 minutes and then went off with his family to get a pizza, not once asking if I needed anything.

My parents, especially my mum, were there being my support group that they always are, they made sure I was coping and being there with my girl while I couldn’t. They gave me things so I had her smell and she had mine. Regardless though, I still felt alone, so lonely, so lost, so hopeless, so frustrated and so very angry. I just want my baby home and well. Somehow a miracle did happen and after 2 and a half weeks we were home. We had another month of tests to make sure nothing creeped back but she was safe. But even being home my low mood didn’t budge. I instead worried every time she was asleep.

It is incredibly brave for these people to share their stories over the past few months and to share via this blog post. The main aim in sharing these stories is for those who are in similar situations with mental health whilst being a parent’s or parent’s to be to not feel so alone. It’s OK not to be OK at any time in your life! Just make sure to reach out and get the help and support that you need, whether that be in a friend, family member or medical professional.

Awareness, Life With A Stoma

Purple Wings Ostomy Calendar

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Earlier this year, back in March, I took part in a photoshoot with The Purple Wings Charity and some other lovely women for the Ladies Ostomy Calendar for 2020! This photo is of all of together after our individual photos with the lovely women from The Purple Wings Charity, Lauren and Paige.

I flew down from Scotland on the friday and stayed until the sunday and flew back home on the Sunday too. Louise A.K.A Crohnsfighting was a super ostomy Mom and picked me up from the Airport! The weather stayed good too.

It was such a lovely day! All of us ladies got to meet and have a chat and had our makeup done by the lovely Jasmine Stacey (you may remember her from her ostomy underwear line The Jasmine Stacey Collection), beautifully made buffet food which I definitely had too much of! and then we had our photoshoots done by Lisa the photographer who was so relaxed and kept everyone super calm as a lot of us were quite nervous!

Here are a few of my favourites from the photoshoot;

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If you would like to do it for next year or any of the years to come, go for it! It has given us ladies a much needed confidence boost and it’s an opportunity of a life time, full of memories I will never forget!

Awareness, Chronic Illness Blogs, Uncategorized

Where Did HIV and AIDS Come From?

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After watching the documentary about Freddie Mercury and the film Bohemian Rhapsody, I wanted to find out more about where the diseases HIV and AIDS came from. The impact that these two diseases have brought to people in several countries was and has been catastrophic.

Let’s talk about HIV and AIDS – 

HIV broken down is Human Immunodeficiency Virus which attacks the immune system and becomes AIDS, was first discovered in America in the 1980’s. At first people didn’t know what to call the disease and referred to is as ‘gay’ due to the fact that gay men were reporting to have rare diseases such as Kaposi’s Sarcoma and a lung infection called PCP which were linked to this unknown disease.

AIDS broken down is Acquired Immune Deficiency Syndrome and is the most advanced stage of HIV.  Someone with AIDS has both HIV and at least one of a specific list of ‘AIDS-defining’ diseases, which include tuberculosis, pneumonia and some types of cancer.

In 1983 the death rate from HIV was 16,500 which raised in 2006 when the death rate went up to 2,000,000. In 1999 scientists found a strain of SIV in a chimpanzee which was very similar to HIV which affected humans and it was then proven that HIV had come from chimpanzees after contamination from chimpanzee to human. But how did the chimpanzee get SIV? Scientists conducted even more research into how the monkey’s got SIV in the first place and soon realised that a chimpanzee had eaten two other similar and smaller monkey’s, in which each monkey had a different strain of SIV. Due to this chimpanzee eating two monkey’s with a different strain of SIV each, combined this turned into a third virus which can affect humans known as HIV.

So how did humans become contaminated with HIV from chimpanzees?

It’s thought that humans killed and ate the infected chimps or their blood got into contact with a wound or cut. There are 4 different types of HIV which include the groups M,N,O and P, the main strain that has spread throughout the world and is responsible for the highest rate of HIV infections is group M. The earliest that this was detected was back in 1959 where a blood sample was taken from a man in the origin of Congo. From this, we know that HIV first developed in Africa (Kinshasa to be exact) so the next question to answer – how did HIV spread from Africa? In the area of Kinshasa, there are many transport links such as the roads, railways and rivers. It also had an increasing sex trade around the time that HIV was beginning to spread which is believed to have largely contributed to the spread of the disease. This has resulted in racism and discrimination to those who live there.

People only became aware of HIV in the 1980’s when it was officially discovered as a new health condition. In 1983 the disease was given more research by researchers at the Pasteur Institute in France which discovered by the end of 1983 that the unknown disease was finally acknowledged as AIDS and that HIV was the cause of AIDS. It was also concluded that those who were higher risk of the disease were haemophiliacs (a rare condition that affects the blood’s ability to clot) and heroin users. HIV stays in the body for life, however treatment is available and can keep the virus under control and the immune system healthy. Without this  medication people with HIV can develop AIDS and is life threatening. If HIV is caught early and treated with medication, it will not lead to AIDS.

How can you can you get AIDS?

  • Vaginal or anal sex without a condom
  • if your partner has an unknown HIV status, a detectable viral load
  • Sharing injecting drug equipment
  • Oral sex

Treatment for HIV is a medication first started in 1997 which increases a person’s CD4 count and reduces their viral load. This means that those who caught HIV before 1997 developed AIDS and as a result passed away. Treatment is now so effective that it reduces someone’s viral load to undetectable levels within 6 months, maintaining them to have a healthy immune system and this means that they cannot pass on the virus.

 

 

 

 

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!

 

 

 

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.

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!

 

 

Awareness

Man discriminated at Manchester Airport With Stoma

Michael Anderson, 28, was at Manchester Airport travelling with his work when he experienced odd behaviour from a member of the staff at Manchester Airport, who tried to pull off his ostomy bag in a pat down search.

Michaels journey with Crohn’s Disease started in 2012 which resulted in him having surgery for an Ileostomy just 3 years ago. Since then, he has travelled numerous times through this airport and never had any issues except from today (29/01/2019.)

Michael says ” I walked through the body scanner and obviously a heat source was coming from my bag on the scanner. So I get patted down which is fair enough and it happens all the time at airports, but then he starts feeling my ostomy bag through my shirt which again is fair enough and happens every time. The member of staff then starts yanking my bag through my shirt trying to pull whatever he thought it was out! I said ‘woah what are you doing?’ and he replies ‘take it off!’. I was said ‘you want me to take my shirt off?’ and so I lifted my shirt up to reveal my ostomy bag. The member of staff then continues to tell me to ‘take it off.’ I was replied ‘it’s an ostomy bag mate if it comes off you’ll be covered in shit’. With absolutely no apology or anything he then sits me down on a seat and swabs my ostomy bag for drugs and sends me on my way without saying a word. ”

“I totally understand the need to pat me down and even swab it as I’m sure people could smuggle drugs in a ostomy bag, but to yank it and try and remove it from under my shirt is a joke and has damaged my skin! Surely members of staff must get some sort of training to be sensitive to these issues? I mean, even if you didn’t know what an ostomy was it’s clearly a medical device and not a fashion accessory that I’ve just randomly attached to my stomach! They need to realise that it could shatter someone’s confidence to get them to remove their shirt and yank their bag like that. There will definitely be a complaint going in so they can brief their security staff on medical appliances and make sure nobody else has to go through what I did today.”

“I’ve flew probably 7 or 8 times since my surgery and usually they’re spot on, offer to take you in another room or something like that but I have no idea what this guy thought he was doing when he’s asking me to remove it!”

“I’ve been on the phone to several senior managers at the airport who have agreed more training is required. I’ve also offered to give up my own time to share my story with security during the training so they can have more understanding of what it is like traveling with a stoma and be 100% on being positive and educational with the intention of posting publicly was to shown Manchester Airport that clearly this isn’t an isolated incident and many others have had the courage to say its happened to them too. I am trying to force a change!”

If anyone has experienced this type of discrimination and neglect from airport staff, please report it! You can also find help when travelling abroad from stoma delivery company websites. It is also handy to get a letter from your doctor before travelling to explain your medical condition.

Awareness, Uncategorized

The Purple Wings Calendar Photoshoot!

Myself and The Purple Wings charity would be so grateful if you could sponsor me for the 2020 Ostomy Calendar Photoshoot!

This will be my first photoshoot with my Ileostomy also known as a stoma! I have been fundraising for this charity for a short period of time and I really hope I can get sponsors and fundraise, so that ostomates can regain their confidence during and after surgery for a stoma.

About The Charity:

“,17,100 people need stoma surgery each year.

Purple Wings is Here to Help

Recover, Adapt & Overcome

The vision of the charity is to help ostomates regain confidence through our Time for Me Grants. This is a tailor made service and is very much based on a relationship built between the person applying for the grant and all of us here at the charity. It might be that a person really needs some ‘me’ time by relaxing at a spa, going on a shopping trip and attending a photo shoot for example.

Sometimes the service can provide outings for families and couples as we all know how hard it can be on the people around us at a time of illness. The charity has sent people for meals with loved ones to ensure that ‘us’ time is catered for. We have also sent families for days out. Whatever it is we do for you, it really based on your individual needs and proving that you really can ‘live’ not just ‘exist’.”

To sponsor me, please click here! Thankyou in advance to every single person who sponsors me!

– Alannah, A.K.A Glitterygutsx 💜

Awareness

IBD Charities

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For day 6 of the Crohn’s and Colitis Awareness Week, it’s useful and appropriate to let all IBD sufferers, family and friends of those who suffer know about charities that can help you. 

 

Here is a few of the charities that I know of who help IBD sufferers

Cure Crohn’s Colitis – “We are committed to passing on 100% of the money we raise. No administrative costs are recovered from donations. Until the formation of Cure Crohn’s Colitis, no British charity has focused explicitly and solely on funding patient-centric research for Crohn’s and Ulcerative Colitis. There is a pressing need to improve the fairly limited range of inflammatory bowel disease treatment options available and to better understand the mechanisms that cause Crohn’s Disease and Ulcerative Colitis.”

Crohn’s and Colitis UK – “Our mission is to work with all those affected by these conditions to achieve a better quality of life, improve services, and ultimately find a cure. We want to see a world in which people’s lives are not limited by Crohn’s and Colitis.”

The Purple Wings Charity – “Helping  people with a stoma regain confidence and self esteem. The vision of the charity is to help ostomates regain confidence through our Time for Me Grants. This is a tailor made service and is very much based on a relationship built between the person applying for the grant and all of us here at the charity. It might be that a person really needs some ‘me’ time by relaxing at a spa, going on a shopping trip and attending a photo shoot for example. Sometimes the service can provide outings for families and couples as we all know how hard it can be on the people around us at a time of illness. The charity has sent people for meals with loved ones to ensure that ‘us’ time is catered for. We have also sent families for days out. Whatever it is we do for you, it really based on your individual needs and proving that you really can ‘live’ not just ‘exist’.”

IBD Superheros – “Our main goal is to find a cure for Crohn’s Disease and Ulcerative Colitis. We want to raise awareness of Inflammatory Bowel Disease and stamp out the stigma related to it, but we need you to help us to do this! all money raised by #IBDSuperHeroes is invested into patient-centric research, to improve the lives of those with IBD and ultimately, find a cure. We are fundraising on behalf of UK charity, Cure Crohn’s Colitis, who invest 100% of donations to research projects throughout the UK. The charity is voluntarily run and always will be. They work tirelessly, and for free because they have all been affected by IBD in some way; personally, professionally or have watched someone they care about fight this debilitating, and so far incurable disease.”

Everyone chooses a charity that suits to them most, so there is no right or wrong charity to choose! It is completely up to you and of course the people who support you. In Scotland, I know that my IBD Consultants and IBD Team work closely and support Cure Crohn’s and Colitis so that is my reason why myself and my fiance fundraise for them! I am also fundraising for The Purple Wings Charity because of how little charities there are out there supporting people specifically with a stoma. Which ever one you choose, you gain support and finding a cure is the one thing we all desire and need, to get better and have as normal of a life as possible without terrible medications! When that day will come, nobody knows but we can sure as hell keep hoping for it and support each other in the mean time!