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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Chronic Illness Blogs, Mental Health Blogs

Nurse VS GP: which is more beneficial?

NURSE VS GP

For approximately four years, I have seen a variety of health professionals but never really knew which each individual one actually does. After seeing my Nurse Practitioner at the beginning of the week, I asked her what the difference was between her job and my GP’s in terms of what they specialize in and their roles when it comes to providing care for their patients. It is just as beneficial to see a Practice Nurse as it would be seeing a GP. Here’s why;

A Practice Nurse – 

Practice Nurses are registered nurses that work in GP surgeries. They provide care in the following aspects:

  • Collecting blood samples
  • ECG’s
  • Wound management
  • Health advice and vaccinations
  • Child immunisations and advice
  • Womens and Mens health including sexual health
  • Swabs
  • Blood pressure
  • Urine samples

A practice nurse will have more specific jobs within the practice. They can help and advice within minor illnesses however they cannot diagnose or prescribe medications, however you may find that some can. They also run clinics for long term conditions such as Diabetes and Asthma.

A nurse Practitioner is a nurse who has advanced in their nursing with additional training and skills who are usually able to prescribe medications and have more knowledge with chronic or long term illnesses.

Both have access to your medical notes and care plan if you have one put in place. Many Practice Nurses/Nurse Practitioners specialise in different areas of health which can be very helpful.

GP’s – 

GP’s (General Practice) provides care in all common medical conditions, refer patients to specialist hospitals and focus on the patients health in all aspects such as :

  • Physical
  • Psychological
  • Social

This also includes community, home and care in hospital. GP’s who care for patients with chronic illness have the aim to enable them to stay at home and keep them as well as can be. GP’s can also work in different aspects of the hospital such as A and E centres, Discharge planning and may run clinics. They look at the patient’s medical history and the symptoms that they present with at the time of the consultation. If you have a phone consultation they can also give a patient advice via telephone or organise for them to come in for example a blood or urine test.

 

 

Chronic Illness Blogs

Diets For Different Illnesses

I wanted to do a blog to help those with diet issues with different illnesses and some easy go-to foods. I have done a lot of research into this on various websites such as Crohns and Colitis UK, Colostomy UK, NHS Top Diets Review, The British Dietetic Association, GIFT UK and various social media platforms.

The First Diet that I was really interested in after reading is the Blood Type Diet. From the research that I have done, it has shown to be a diet specified to your blood type. Peter. J D’Adamo suggests that the foods you eat reacts chemically with your blood type, so following a diet to your blood type may help you to digest food more efficiently and to help you lose weight, have more energy and help prevent disease;

Blood Type O: High protein diet especially lean meats (such as chicken and turkey), Fish, Vegetables. You also want to be light on foods such as grains, beans and dairy. It is said that people in the Blood Type O category suffer from tummy troubles and should take supplements.

Blood Type A: A meat free diet is recommended for this blood type, eating lots of fruits and vegetables, whole grains. It is also said that people in the Blood Type A category suffer from a weakened sensitive system.

Blood Type B: A diet avoiding corn, wheats, lentils, tomatoes, peanuts and sesame seeds. Chicken can be troublesome for those in the Blood Type B category too so eating things like eggs, green veg, other meats and low fat dairy.

Blood Type AB: This diet is more focused on tofu, seafood, dairy and green vegetables. People in the Blood Type AB category tend to have low stomach acids so it’s important to avoid caffeine, alcohol and smoked meats.

It is important that if you have an illness/disease that may prevent you from eating some of these specific blood type diets.

So let’s look at another diet that could be possible such as the Low Sugar Diet.

This diet focuses on certain food groups such as :

  • Fruits and vegetables.
  • Bread, rice, potatoes, pasta and cereals.
  • Meat, fresh fish, eggs and beans.
  • Milk and dairy foods.

Avoiding sugar is very crucial when you are a diabetic so always check the label of the food you are going to be buying. Ideally, you want a fat content of less than 100g, sugar content less than 5g per 100g and salt content of 0.3g per 100g. On occasion you can have the following:

  • fat content at 17.5g per 100g or more.
  • sugar content at 22.5g per 100g or more.
  • salt content 1.5g per 100g or more.

Advice from the British Dietetic Association is to try and snack when you are hungry, in between meals, and not just due to food being there. Try to drink something first before eating and sometimes we often mistake hunger for thirst. Also try not to buy things during your food shop which you know is your ‘danger foods’ that exceed the contents limits.

Diet advice on the Crohns and Colitis Uk website for people who suffer from Inflammatory Bowel Disease; by specialist Lisa Macleman.

“Excess calories can result in weight gain however if underweight then this is positive thing. If you are overweight it is important to avoid excess calories. Weight gain and loss is a huge problem for people who suffer from IBD, due to remission and flares. When in a flare people with IBD tend to eat easy go-to foods because it is needed for energy. When in a flare it is important to eat small portions frequently which is around 6 or 7 little meals per day.”

Many people claim that certain diets or foods can cure Crohns Disease and Ulcerative Colitis however there is no scientific evidence to support this, however diets can help someone achieve remission but never a cure, as for many illnesses. It can be helpful to recognise your trigger foods such as high fibre foods, spicy foods or other foods.

A Low Residue Diet can help when a IBD sufferer is experiencing a flare up of their disease, which many dieticians do recommend to try.

So What is a Low Residue Diet?

  • Bread, cereal and nuts – sweet plain biscuits such as rich teas, gingernut and NICE biscuits. Plain cake made from white flour. Plain crackers such as cream crackers. Smooth peanut butter.
  • Fruit and vegetables – Tinned or ripe fresh fruit that contain no seeds and have no skins on (only 2 portions of fruit per day), fruit juices and smooth coconut milk. Vegetables without skins, smooth or sieved tomatoes, strained vegetable juices, mashed potato and baked potato without eating the skin.
  • Desserts – Custard, ice cream, milk puddings, clear jelly and plain cakes.
  • Dairy – Milk (low fat is recommended), low fat cream, sour cream, creme fraiche, smooth yoghurt and cheese.
  • Drinks – Fruit, vegetable juices, milk, water, dioralyte (rehydration), soft drinks, decaffeinated tea and coffee and herbal tea.
  • Meat and meat alternatives for vegans – all meats and fish (less fat are better.)
  • Miscellaneous – eggs, tofu, soup, honey, jelly, jam, crisps and plain pretzels.

The Specific Carbohydrate Diet (SCD.)

This diet specifically is restricting you intake of carbs, by eliminating certain food types such as grains, starches, dairy and sugar. The benefits to this diet are good for someone who suffers from digestive inflammation, eating foods that require minimal digestion which can reduce inflammation. It is said that following this diet can also cause some nutritional deficiencies so always ask your doctor first. Investing in supplements and vitamins is really important on this diet.

Foods that are allowed on this diet:

  • Fresh vegetables.
  • Poultry, fish and eggs.
  • Natural cheeses.
  • Home made yoghurt.
  • Fruit and fruit juices without additives.
  • Coconut oil, olive oil and corn oil.
  • Weak tea and coffee
  • Unflavoured gelatin.
  • Mustard and vinegar.

This diet still needs more research into it but if you have tried it, I would love to hear your feedback – good or bad!

I think it is really interesting to see what research there is out there when it comes to diets and what may be able to help you but as I have said, ALWAYS consult your doctor first!

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!

 

 

 

Chronic Illness Blogs

Top 10 Chronic Illness Related Films

13413661_10208882577449309_7060998761965754705_nSometimes it is nice to watch a film with your feet up and to snuggle into a blanket. If you are in the mood to watch a film that could be relatable to you. Although this is not for everyone!

So here are a list of Chronic Illness related films:

  1. 50/50 – Inspired by a true story, a comedy centered around a 27 year old guy who learns of his cancer diagnosis and struggle beating the disease.
  2. My Sister’s Keeper – Anna Fitzgerald looks to earn medical emancipation from her parents who until now have relied on their youngest child to help their leukemia-stricken daughter Kate remain alive.
  3. Brain On Fire -Susannah Cahalan, an up and coming journalist at the New York Post becomes plagued by voices in her head and suffers seizures. As weeks progress, Susannah quickly moves deeper into insanity. Her behaviours shift from violence to catatonia. After a series of tantrums, misdiagnosis and a lengthy hospital stay, a doctors last minute intervention enables hi to give her a diagnosis and a chance to rebuild her life.
  4. It’s Kind of a Funny Story – A clinically depressed teenager gets a new start after he checks himself into an adult psychiatric ward.
  5. Split – Three girls are kidnapped by a man with a diagnosed 23 distinct personalities. They must try to escape before the apparent emergence of a frightful new 24th.
  6. The Fault In Our Stars – Two teenage cancer patients begin a life changing journey to visit a reclusive author in Amsterdam.
  7. Forrest Gump – Forrest learns that Jenny is sick from an unknown virus (either HIV or Hepatitis C) which has no known cure.
  8. 50 First Dates -Henry Roth is a man afraid of commitment up until he meets the beautiful Lucy. They hit it off and Henry thinks he’s finally found the girl of his dreams, until he discovers she has short-term memory loss and forgets him the next day.
  9. The Vow – A car accident puts Paige in a coma, when she wakes up she has severe memory loss. Her husband Leo works to win her heart all over again.
  10. Walk The Line – A chronicle of the country music legend Johnny Cash’s life, from his early days before fame on an Arkansas cotton farm to his rise to fame with Sun Records in Memphis whilst battling depression and drug addiction.

These are some of my personal favourites ranging from romantic, horror, music related and comedy! You can watch most of these via Netflix, NOW TV, Sky Movies or Amazon Prime (or you can buy the DVD’S for cheap!)

I’d love to know some of you recommended chronic illness related films!

Chronic Illness Blogs, Mental Health Blogs

Mental Health

I have been struggling with my mental health for a long time, due to illness and things happening in my personal life. After being off of antidepressants for almost two years, my GP and I decided that it was best to go back on them as the problems I’ve been having are very complicated and I am in the process of working through them.

After my surgical termination last June it was really difficult having that procedure done itself but also coming to terms with loosing my baby and last month would have been my due date. When problems started happening at home I began to have frequent mental break downs and found it so hard to cope with life. I would lay in bed all day in the dark and try to not to talk to anyone. I would barely eat and I couldn’t see much point in being alive with the stress of everything and being chronically ill.

After months struggling with the mental breakdowns and thoughts of not wanting to be here or deal with the physical and mental pain, I went to my GP and told him that I thought it was time because everything I had tried such as medtitation and anxiety apps on my phone just weren’t helping. My GP had been asking for a while for me to go on medication for my depression and I refused because I was terrified of the side affects.

At the start of taking Prozac, I was also given Pregablin to help manage my pain. At the same time starting these medications, I caught a sickness bug and was extremely ill so they weren’t able to kick in as well as they should have so they took a little longer to kick in! I felt a little tired for the first week but nothing more than the usual tiredness I get.

Slowly those bad thoughts went away and I felt so much more motivated with my life and wanted to not only live but to accomplish goals and dreams, doing more for charities and also taking care of me more. After a few months the dosage was put up because I felt the affects were wearing off a little. Since then I do still struggle some days but not as bad as before. My Anxiety and PTSD isn’t great but I’m working on those by distracting myself when I feel anxious by watching films or cuddling my 2 yorkies.

Just recently, I had an iron infusion as my ferratin levels were below 50 again. As my iron was dropping, I felt my mood dropping too. After talking to my IBD nurse and another GP it was said that when your iron drops it can also affect your Depression which I didn’t know! So in 2-4 weeks my iron should hopefully be back on track!

When you suffer from mental health, it is really difficult to open up to anyone but also to admit when you need help. Taking antidepressants is nothing to be ashamed or embarrassed about because the way I see it – you are helping to help yourself get better. Finding a GP or someone close to talk to can really help let out some pain of feeling alone in the battle inside your head. There are a few things you can try with mental health but I really strongly recommend talking to your doctor and making sure they are happy for you to try other things first.

There are apps you can download for Anxiety such as Headspace and learning meditation. Many people find that seeing a councillor helps but the waiting list for one is very long on the NHS. You can also read books on coping with anxiety and many various mental health conditions from amazon or local book stores. Colouring in books can also be very relaxing and handy when you want to go somewhere quiet and colour. Animals can also really help to comfort you and knowing a little furbaby loves you unconditionally is one of the best feelings in the world!

I have heard people refer to antidepressants as “wacky pills” and “loopy tablets” and I just think that is completely unfair for those who suffer. Taking antidepressants does not define you! For anyone who does not walk a day in our shoes they have absolutely no right to judge what they do not know or understand. Be proud for taking that step in talking to someone or swallowing your dose of antidepressants for the day, each day. To fight those relentless demons day in, day out makes you fucking strong.

And if nobody has told you, I’m proud of you.

Chronic Illness Blogs, People's Stories!

Funny Stories With A Chronic Illness

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Brenda and myself wanted to a blog about the funny things of being chronically ill, to make others laugh. You never know when someone may be feeling a little down and need a good laugh!

In various chronic illness groups via Facebook, I asked people if they would like to share their funny moments with me. Enjoy!

Shannon:  ” I was in the A and E once and the nurse came in and asked what the problem was. I said “I’m pretty sure I’m dehydrated. I have a rare autoimmune disease called Behcet’s are you familiar with it?” She looked at me like I’m stupid and says THE SHITS? Yeah it’s not that rare.. I looked down and said no BEHCET’S but my husband was in the corner cracking up and trying not to let the nurse see. She eventually said to us when we got our survey at home about our experience to say her name was phoebe bushé and not her actual Name. She was mortified we would tell in the evaluation about her and THE Shits Tale.”

Nick: ” I feel sorry for the poor sods who have go on nights out and have to crap on toilets that has no lock on the door. All while i’m still boogying and having a cheeky crap in my bag!”

Claire: “My funniest is when I sat down for a breather on the edge of a freezer in Tesco… of course I fell in didn’t I and couldn’t get back out again. Spent a good 20 mins sitting in the frozen sausages!”

Perry: “After my operation when I could finally stand up and I needed to go toilet, I stood up and went for a wee in the sample bottle. The curtains around my bed were shut but as I finished, I pulled my bottoms up I turned around and realised my windows blinds were up and everyone in the cafe could see my bum cheeks through the window..”

Tina: “When I was teaching and the time came for a stick, so I invested in one that had fairies on as the children used to call me mrs fairy instead of Ferrie. Even had one child ask if the reason i worked in school was to see which children had lost teeth! They also asked if I got tired collecting the teeth and took me a while to click they thought I was the tooth fairy.”

Josh: “I was getting a scrotum ultrasound with a male ultrasound technician as Behcets can cause pain there for males. Anyway we were having small talk about where I was from and talking about how I had moved back to town from a place that has a bad name for crime.  I said I’d never had a problem in the 2 years I was there but that I had read in the newspaper that a man was killed for money in front of the pawn shop just 2 weeks after I had left, the same pawn shop that I used to visit all the time a few times a week. The ultrasound technician was just about finished scanning my sack with the ultrasound and he said “the guy must’ve been wanting money for porno’s” but I didn’t quite hear him so I just said “mmm.” He was finished and I left. I then realised later what he had said and I felt so stupid this guy had his hands near my man parts scanning me with the ultrasound machine the whole time thinking I was talking about a adult shop “porn shop” but in reality I was talking about a pawn shop “second hand trader!”

Val: ” I took my mum along to a seminar (she had a colostomy called Arthur) well he blew off all through one of the speeches my mum, me and my husband (who by the way has an ileostomy) set off giggling and didn’t stop. My step dad did not see the funny side and at the end a lady came up to us and said I knew that was you Sheila, as they was in hospital together.”

Shirley: “When I was out shopping one day I had nerve spasms, so I decided to look in a shop window and do breathing exercises til they passed. Someone inside was waving at me and I waved back! I didn’t recognise the person but when the spasms eased, I looked again and realised I’d been waving at a MANNEQUIN!!!”

Em: ” I was meant to be collecting a sample for the Doctor. I felt an urgent need to go and nipped to the loo. Thought “ooh this will be a good one, I’ll just grab that bowl” (located about 2m from toilet). In the time it took to travel across the bathroom for the sample bowl, I couldn’t hold it and pooped everywhere. I definitely saw the funny side but this really is toilet humour!”

Jennifer: ” My 2nd symptom was going blind in the left eye for a few weeks. I got sent to ophthalmology and they said “cover your left eye and read the board on the wall” so I obliged. Then they said “now cover your right eye and read the board on the wall”, I said “what board?” then the ophthalmologist said ‘”the one there on the wall. I said “yeah, what board?” Again they said “the one on the wall, starts with E at the top!”which went on for another couple of minutes before they realised that I couldn’t see anything out of that eye, even though I told them that to start with!”

John: ” I went for a job interview and thought it was best to tell them I had MS. They said “that’s good, being well versed in Microsoft programs is just what we need!”

Ceri: “My very first relapse, before diagnosis, I had double vision so the eye specialist gave me an eyepatch. After the hospital visit my sister took me to the coffee shop and all I could hear was a little boy telling his mum.. “mum” mum there’s a pirate over there, over there Mum” The poor mum was so apologetic but all we could do was just laugh.”

Kevin: “I was at a routine hospital appointment and went to pharmacy. They said “do you pay for your prescriptions mr Childs?” I mumbled something about permanent colostomy and that I have medical exemption certificate. I then patted my abdomen to indicate where bag was. I sit down and 10 minutes later called back up. “Thank you mr Childs my colleague says you don’t pay for prescriptions because you’re pregnant..”

Jo: ” I’ve always been quite a good mimic and so when I had a huge facial weakness a good few years back, with my short hair and glasses, for nearly two months I was a very popular Anne Robinson (from the TV show You Are The Weakest Link) ‘look alike’!”

Victoria: “When my muscles spasm they can be rather violent. So one night I was sat watching telly and hubby gives me a Magnum ice cream, cue a violent spasm and my ice cream goes flying across the room and the bloody dogs think it’s Christmas!”

Helen: “My GP was explaining my CT scan results and that I had a fistula from my bowel to my bladder. So not funny, but she said “Basically Helen, you are farting into your bladder.” For some reason, that set us both off and we giggled through the rest of the appointment!”

Megan: “So my dog willow had an itchy annoying butt so we got an appointment at the vets. The vet told me it was probably her glands that needed emptying and that he would do it just now. So there he is sticking his fingers up my doggies butt when i awkwardly say “oh me willow its normally me we fingers up my bum!”The sudden realisation that this guy has no idea I have bowel disease and thinks Im a dirty mare who needs locked up. I didn’t know where to look. I was just trying to lighten the mood and make my dog feel better!”

Stephanie: “There is nothing more satisfying than having a poo in marks and Spencers food hall…. It’s not just a poo but a marks and Spencers poo!”

Colleen: ” I have a LOT of difficulty sleeping. SO, there’s no telling when I will have a sleep ATTACK! So, one Sunday morning I went to Church, sitting next to my husband and fell asleep HARD! My neck fell back, and a GIANT SNORE came shooting out of my nose. If you picture that, you can imagine the sound. It was LOUD and although I was with Church folk, I did feel a bit judged, so I tried to keep from laughing as I slithered out of the door!!!”

Libby: “I took my daughter to the ER because she had a bad migraine from Behcets and the doctor came in to check her. She said ” I have Behcets” and he said “oh I know what that is…you get lesions on your penis!” haha shes female..”

Callum: “Every time it farts it feels like someone is blowing raspberries on my stomach!”

Joseph: “I once was at the casino playing poker, and the person next to me thought it was my way of wishing good luck on my cards by shaking the cards a little. It’s actually bc I have a bad tremor in my left arm right now.”

John W: “When I first told my now partner I had a colostomy bag she sed so u are a real living shit bag!I found it funny don’t know if others will but 7 years on we are still together.”

Robin: “I was at my 1st appointment at an MS Clinic and in the midst of my first really bad flare-up. All the nurses were incredibly nice and I had asked them what their favorite treats are (so I could bring them something at my next appt). I got no answer at the time of my question…but about an hour later, as we were preparing to leave the office and head to the infusion clinic – one nurse says “jolly ranchers”…I thought to myself – You can have any treat you want and it’s Jolly Ranchers, weird – but okay- looked at her with a smile and said, “Awesome, I’ll bring you a huge bag of them tomorrow ” she laughed and says, “NO, bring Jolly Ranchers to your IV steroid infusion, they are the only candy that will get the metallic taste out of your mouth!”

Helen M: ” My recently installed bag is called Louie, I’ve never been able to afford an original Louis Vuitton bag but he is my sure my own original!”

Jessica: “I still laugh about my enema being put in the wrong hole by the student nurse. I had to tell her it was the wrong hole before she squirted it.. She was very embarrassed. Then afterwards, she was like do you want privacy … yes but instead she was in asking bloody questions and doing obs!”

Anonymous: “There is this funny thing that always makes me laugh! I have dual mental health diagnosis and other crap like chronic IBS. I get very very down in this life. One of my fond memories is when I was living with my now passed away Grandmother, she had slight bowel issues also. Each step she took up the stairs to the loo, she farted! She was all like “Ooooh these stairs are creaky today!” It’s even more amusing as she was all prim & proper!!!”

Nuala: “When i was very ill and hospital told my family I have to have colostomy our young James said to his mum “she said it’s bag and you can’t poo only in a bag” he thought about it and said “oh will she have to have big hood like max?” who is the dog so he couldn’t bite his bum after his operation! I thought that’s great made me laugh!”

Brenda: “My first funny story happened in 2015 after surgery for an abscess on my surgical scar. I was fitted with a vacuum dressing and pump then discharged. I got home and settled for a bit then at bedtime went to the loo to discover that the nurse who discharged me had put the vacuum dressing completely over my bag which had leaked output and blood. I couldn’t deal with the bag because it was trapped under the dressing which I couldn’t do myself. After a few calls an ambulance was sent and a paramedic was dealing with me in our tiny toilet. Now when I change or empty my bag I pull my top right up and fold it up. Paramedic stands me up to take me to the ambulance and asks if I feel comfortable. Totally forgetting I’m in my pjs with no bra up goes my top and that poor bloke got an unexpected eyeful particularly as my boobies have gone a bit south. All the way back to the hospital I kept avoiding his eyes!”

“My second funny story was when the hospital the nurse took me into the patient toilet to sort the bag out and as I sat on the loo she crouched and balanced in front of me till she lost her balance and fell forward on to me. I fell back onto the flush sensor and had what I can only call an unexpected bidet. We both laughed so much it happened again and decided I’d better stand up!”

“My third one is from a couple of months later. My daughter was taking me to Birmingham on the train for the gybo first party. The train pulled up, doors opened and I got one leg on but didn’t have the strength to get the other leg on. Two lads who were on the train came forward and grabbed a hand each and started pulling me on and my daughter put her shoulder under my bum whilst explaining to the people in the queue behind me that I’d been poorly. We did have a good laugh about that one I won’t mention going to Earl’s Court to see George Michael with my daughter when I was newly diagnosed. Seats up about as high as you can go and three guesses who was just coming back from the toilet as the lights went down and George walked on the stage. I think I spoiled the moment for the people in our row who had to stand up and let me through.”

Justin E: “Best I have done is I was putting stock away in shop and just fell asleep on floor with packets of nut and bolts and I was found by a customer who woke me up as he thought I had fallen and knocked myself out!”

Nan: ” i sat on the loo for ages couldn’t feel the wee but could hear it. I sat thinking god that’s a long wee till i realized i wasn’t weeing at all and it was the cistern filling up!”

 

Hope you have enjoyed these funny stories as much as I have! I have had tears in my eyes reading them with laughter! Thank you so much to all who took part and to Brenda for the idea and inspiration of this blog!

-Alannah

Chronic Illness Blogs

Preparing For A Colonoscopy

 

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Many people who are diagnosed or undiagnosed may go through preparation for a procedure such as a Colonoscopy. This is where a thin tube with a camera on the end is inserted into the rectum and travels into your intestines.

Before I begin on the preparation drink information etc, I want to let you know that this procedure can save lives and can help get a diagnosis of what is happening. Usually the drinks they give you are either Picolax or Moviprep and sometimes Kleanprep which are laxatives to clear out the bowels to get a clear look inside. When I had prep, I found Moviprep easier to handle than Picolax however if constipation is something you suffer from Picolax can be a better option but it really does depend on what your consultant or appropriate person doing the scope wants you to have.

The first drink isn’t pleasant and I’m not going to sugar coat it and say “it tastes divine like a cocktail” because it doesn’t but you can make it taste better by adding diluting juice that you like to it, which can help make it more bearable for you. You can also put it in the fridge. With Picolax make sure you stir it and leave it to sit for a minute as it can be sore on your lips when newly mixed (just from my experience.)

A few hours later your letter or information sheet will tell you to drink the next sachet. Many people find that even after taking both, a few hours later nothing happens and are left wondering why it was even important to drink them.. that is until you feel the sudden need to run to the loo! It’s not pleasant but it does the job it needs to which is essential for your scope. If you are allowed sedation they will put an IV line (cannula) in a vein for direct access for the sedation, this is to help you relax.

There are some thing you can do to make preparation easier for you:

  • Have some heat pads or a hot water bottle close by if you have pain/cramps.
  • Keep a blanket in the bathroom near the toilet.
  • Keep a bottle of water in the bathroom and by your bedside.
  • Take some paracetamol to help with pain and sweating if going to the loo is making you sweat.
  • Pads incase you don’t make it in time.
  • DON’T plan to go anywhere!
  • Keep your medication close by so if needed it is there.
  • As said above, diluting juice.
  • Comfy clothing that isn’t tight as you may bloat.
  • For the 24 hours leading up and waiting, only drink clear fluids.
  • Avoid taking iron tablets a week before your procedure.
  • Drinking plenty makes the bowel prep work better.
  • Using a straw to drink the prep.

My first Colonoscopy was back in 2012 when I was 17 and I was diagnosed with Crohn’s Disease and Ulcerative Colitis. The prep wasn’t as bad as I thought it would be, I found not being able to eat the hardest part! At the time I finished my second drink my mum was eating a tub of my favourite kind of pringles and I cried (ha ha.) I was terrified when I got to the hospital, clutching my hot water bottle whilst crippled over with pain, not knowing what was wrong with me.

I was given sedation and pain relief through my cannula and I felt quite tired and drunk! They first inserted a long tube which puts air into your intestines and then the flexible colonoscope with the camera and a light at the top. I found that the air was more uncomfortable than the procedure itself. Before I knew it, I had to fart and I didn’t know what to do. I lay there squeezing my cheeks and I couldn’t do it any longer. I said to the nurses in the room that I really had to fart and could I be excused, I was told to go ahead as it wasn’t anything unusual! So thinking only air would come out I went for it and I messed everywhere and felt terrible for everyone in the room and I was so embarrassed. I was so surprised that the nurses didn’t care, they’d seen it all before me! They completely put me at ease and held my hand through the tears of anxiety and embarrassment.

At the side there is a screen so the doctor or endoscopist can see from the camera inside you, if you are squeamish then don’t look. The endoscopist or doctor may also take biopsies to send away to the lab. Recovery took a few hours as I slept off the Sedation then I was allowed to go home, stopping at McDonalds first of course! Eating my entire body weight in fries and chicken! My rectum was quite sensitive for the next few days due to the wiping from frequent toilet trips. It can take a few days for your bowels to calm down and usually you do experience bloating from the air that is put inside your bowel so drinking plenty and walking around can help shift it. Taking paracetamol can help too.

I hope this helps you with your first time having a Colonoscopy.

-Alannah A.K.A Glitterygutsx

Awareness, Life With A Stoma

Flying With A Stoma

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

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

So what did I take in hand luggage?

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

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

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

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

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

The next airport I go to is Birmingham Airport.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life With A Stoma

Finding Love With A Stoma

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

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

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

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

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

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

-Alannah.