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.

 

 

 

 

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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! 

 

 

 

Awareness

Chemo Isn’t Just For Cancer!

For day 4 of the Crohn’s and Colitis Awareness Week this blog is about medications used to treat IBD. These include Chemotherapy drugs which many think is only associated with Cancer. I am here to tell you that just simply isn’t true.

So the main reason IBD patients are put onto medication is to reduce inflammation in the bowel and to maintain remission and prevent future flares. Many people go through many medications when one does not work.

 

Steroids are used to reduce inflammation by lowering the immune system, stopping the immune system attacking healthy tissues. Some of the other medicines that are long term, are also know as Immunosuppressants, which work by lowering the immune system in order to stop the immune system attacking your bowel – resulting in reducing inflammation. The negative side to this is that due to your immune system being lowered, you are susceptible to infections and may need antibiotics to treat them from time to time, everyone is affected differently. Many people have no infections at all where others get many. The same goes for the actual treatment used too, where it will work for some patients but not another. It is important that before you start a treatment that you read the side affects or ask your consultant what they are, so that you know what to expect and if this is normal or not.

Crohn’s Disease or Ulcerative Colitis is just but few of the many conditions where chemotherapy is used. Most invisible illnesses sufferers deal with the issues along side chemotherapy such as hospital admissions, hair loss, weight loss, extreme sickness, extreme tiredness and so much more.

Even though in terms of most illnesses where we receive the form of chemotherapy that is a different dosage that what is used in treating cancer, however we too suffer the nasty side affects. We can only have but a slight bit of experience what many have to go through on strong doses and have so much empathy and respect for other chronically ill people with invisible illnesses. If you suffer from the side affects of a treatment for your IBD or any illness whilst on chemotherapy drugs, this is a shout out to all who suffer from any illness going through the treatments and similar issues! It can be a really difficult time full of questions.

For any treatment(s) information, CCUK’s free information leaflets on medication is here.

Awareness, Chronic Illness Blogs

What We Want Our Partner/Family/Friends To Understand.

For day 3 of the Crohn’s and Colitis Awareness Week, I thought it would be appropriate to write about what we (IBD Sufferers) want the important people in our lives to understand because we love them and want them to know that even through illness that still remains. Except we may need a little more support and understanding at times.

So here is what we want you to know:

  1. We go through the frustrations of financial stress too. Infact its so frustrating that we cannot contribute as much as others, be it in a household or when it comes to gifts that it can make us even more unwell.
  2. We don’t have the choice of not being able to work. For many, the choice has been taken away. It is not a luxurious life style where we sit at home and enjoy life getting money for nothing! Being unwell is a full time job its self – taking medications regularly, trying to eat something each day, trying to keep hydrated, spending hours multiple times a day either sitting on the toilet and passing blood or vomiting. Others who have stomas can have multiple bag leaks, wound leaks, bleeding, blockages and active disease causing side affects such as fatigue, anemia and struggles with weight.
  3. This disease can make us feel isolated because many of us are house or bed bound. We rarely see the outside world unless it is to attend procedures, hospital admissions or hospital appointments.
  4. Because we look “OK” on the outside does not mean that we are! Some days it feels like we are dying because the pain is so intense. Can you look through the layers of our skin and muscles and see the inflammation or ulceration? NO.
  5. IBD is just as serious as Cancer, Heart Disease and other health conditions than cause life or death situations. We are at risk of just as much issues!
  6. IBD is NOT the same as IBS!! IBD stands for Inflammatory Bowel Disease which is disease of the organ or organs the disease affects causing inflammation, ulceration, anemia, weight loss, bloating, fissures, fistulas, abscesses and sickness, which is a life long illness. IBS stands for Irrital Bowel Syndrome and it is a syndrome of which the bowel is prone to cramping or trapped wind which goes away in a few hours or days.
  7. Those us who do work really struggle due to pain, sickness, fatigue, issues from medication such as insomnia, moon face, infections and weight gain or loss. Many also suffer from mental health issues and it’s a vicious circle of one setting off the other.
  8. We don’t love you or like you any less when we cancel last minute. Our health is so unpredictable! The symptoms can come on within such a quick amount of time that before we know it, it’s time to run to the toilet with severe cramps or having to vomit. The pain can come within a matter of minutes or when we are in pain daily, it can become worse in such a small amount of time.
  9. We miss the old life we had. We don’t expect you to know how this feels, we simply just need your understanding. We struggle to see friends and family moving on in life, having a family, buying a house or having a steady job. It is so frustrating that we can’t be there to share that with you or we are unable to see you. We cannot explain how it feels to loose who we once were and sometimes that may never go away so please know we find it hard to accept this too.
  10. We don’t deliberately miss nights out, parties or celebrations because we “can’t be bothered” it may just be that that day was one of our worst and a little understanding goes a long way!
  11. When we don’t message or call back – we are not ignoring you! Many of us have to take naps during the day and other times it’s because we are too sick to look at our phones.
  12. Just because we post photo’s on social media with makeup on doesn’t mean we haven’t had a bad day. A photo can hide so much.
  13. When you see us out of the house and we look “OK” it doesn’t mean we are. When people say “you look well so you must be doing better” is one of the worst thing you can say. We constantly battle with doctor’s who tell us that because we look OK, we somehow are.
  14. The smallest of things mean the most! When you hold our hand, when you give us a hug, the cup of tea made for us, getting a hot water bottle for the pain or a message to say you are there for us. That’s what we respect the most. We don’t want showered with sympathy or feeling sorry for us!
  15. Pyjamas are the most comfortable things to wear because of the bloating or pain. So we are sorry if we don’t look the part – you will have to accept it.
  16. Accept that we cannot change our illness, if we could then we would be better and do everything on our own.
  17. Even the strongest of us who suffer can struggle and so, we may not look like we need help but doing something small or offering means a lot!
  18. We are just as entilted to use disabled facilities as someone in a wheelchair or crutches. The judgement and embarrassment or upset we recieve when using facilities available to us is awful. We get “tutted” at and questioned as to why we are using them!
  19. Anxiety and Depression can cause our flares to be worse but it can also be a struggle for us to cope. Its a daily battle with physical and mental pain. We mat disappear for a few days socially and that’s because we need time out from time to time.
  20. Fatigue isn’t just being a bit tired – it’s consuming exhaustion that you can’t shake off. It affects your body and also the mind, where we get “brain fog” meaning we can’t concentrate or remember things.
  21. It isn’t “all in our heads”. The mental health stigma can mean that sometimes doctors will question if we are really unwell or if it’s our mental health when it is NOT.
  22. There is no cure. Juice plus will not cure us, using illegal substances will not cure us and dieting pills or certain diets will not cure!!
  23. At times it can be hard for us to only exist and not live our lives – if we get up and shower then we are trying to do our best.
  24. Travelling can be difficult when we have to go somewhere. Please understand that we don’t want to have to keep making pit stops for the toilet. We would rather be the person waiting for the toilet than the person who has to go so many times!
  25. Many of us have to recieve operations and temporary or permanent stomas. If we have any of these, please respect our recovery process. We may have leaks and when we do please don’t freak out and make us feel bad for something out of our control. The anxiety after a bag leak will always linger – “when will the next one be?”
  26. For those us who have had Ulcerative Colitis and no colon does not mean that because we have no active disease present does not mean we do not have other side effects that come hand in hand with IBD!

It can be difficult for others who do not suffer to understand where we are coming from. Raising awareness, talking to your close ones and showing them is a much better approach than getting frustrated however when we do this we want you to listen and try to understand we are explaining to help you help us. To be a team. So many of us loose friends, family and partners due to lack of understanding and judgement and the affects are devastating. Before you judge or question our illness, please make sure you know the facts. Those of you who stay with us through the bad days will enjoy the good ones with us if and when we ever get one! 😁
It takes just a few minutes to read up about Inflammatory Bowel Disease. It takes a kind heart and good person to try to understand and for that we are thankful.

Awareness

There Is More To Us Than Meets The Eye!

This is an incredible piece for Crohn’s and Colitis Awareness Week. Within the IBD community I wondered if anyone would like to show a selfie or photo of their stomach to represent the meaning of “there’s more to us than meets the eye.” You must be thinking “Alannah what on earth are you rambling on about?” Well, the reason I wanted and I am sharing this is to show non sufferers that just because a person who is suffering with an invisible illness looks “fine” on the outside, this isn’t the case on the inside. In fact, it is one of the biggest struggles IBD sufferers struggle with most. Our condition is not visible on the outside apart from past surgical scars, iron deficiencies causing discolouration under the eyes or the bloated stomachs we suffer (which people often mistaken women as pregnant, yes, it really does happen!)

The response I got was phenomenal! So many sufferers got in contact and shared their photo’s of their tummies, being such brave and inspirational warriors (if I do say so myself!) I want to share with non sufferers just how severe this condition can be, and so here is a little part about Inflammatory Bowel Disease: It is a life long illness that causes ulceration and inflammation of the digestive system, however both condition affects differently; Crohn’s Disease can affect anywhere from “gum to bum”, whereas Ulcerative Colitis only affects the large bowel and rectum. The awful symptoms that IBD patients suffer are: Diarrhoea, cramping and pain, fatigue, nausea and being sick, weight loss, mouth ulcers and anaemia. Where this doesn’t really sound like much in writing, in person it can be absolutely devastating to go through. There are also other things that come along side IBD such as fistulas which is an abnormal passage that grows between the bowel (or where the disease is present) to another organ in the body or to the surface of the skin. It can also cause eye inflammation, arthritis, constipation, slowing in healing, hair loss, dehydration, infections, bone thinning and mental health conditions.

Many people who suffer from IBD go through treatments to control the disease and the side affects of that can also be truly terrible, the biggest being infection. Those who have suffered infection can develop Sepsis which is infection going into the blood stream which can lead to a matter of life and death, resulting in having to have surgery for a stoma in cases where antibiotics don’t work. Many go through multiple types of medications that simply just don’t work and the condition doesn’t get any better where surgery is the only option left. Some people find that after having parts of their bowel removed or have a stoma formed that they regain their life again and can move on and live a “normal” life. There are also many just like me where that just doesn’t happen and we still are unwell and can develop the disease else where.

None the less, we all do our best to remain positive and stay in high spirit! I must remind you that we do have down days and that’s OK. Mental health is closely linked to IBD and it can be a serious challenge to deal with both. Anxiety and Depression are most common however other mental health conditions can arise too. It’s important than when you know someone with mental health conditions that even the happiest of people can suffer in silence, and so, it’s so important to help someone when you know something isn’t right. The best medicine for those who suffer is support, love and laughter (if you are an IBD sufferer then you know we wish this was an option!)

Now the best part of the blog! Are you ready?! I certainly am! The beautiful and brave people shared their photo’s to help raise awareness and little did I know whilst we were all sharing, it was also helping people gain confidence and acceptance with their scars, stoma bags and health conditions! That was the best part for me; helping those gain confidence again. One lady in particular thanked me for helping her do this and another had shared that in 13 years she had never shown her stomach to anyone until yesterday and also thanked me for giving her courage! To me this is extremely rewarding and being honest all the photo’s and responses has completely melted my heart and I am so glad and proud of helping other sufferers achieve something so great in life.

I hope you look forward to seeing the photo’s and those who took part enjoy them too!

For those who are struggling with self confidence, I hope that all of us who have shared our tummy selfies have helped you! Thankyou so much to all who took part! 💜