Awareness, Life With A Stoma

Purple Wings Ostomy Calendar

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

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

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

Here are a few of my favourites from the photoshoot;

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

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Uncategorized

I Have Been Nominated For The WEGO Health Awards!

As a chronic illness patient and sufferer, blogging my journey has really helped not only me but many people in various online communities. Being nominated for the WEGO Health Awards is amazing!

There are so many great bloggers and support groups such as GetYourBellyOut, within different communities who also have been nominated which is fantastic. I am so honoured for the support from each and every one of you and thankyou so much, thankyou to those who nominate me in advance too.

It’s so important to make chronic illness awareness in a positive light but also to let people know that it is OK not to be OK. We have more bad days than good but making the best of the good stuff can really help. It’s also important to remind other chronically ill patients that you DO have a choice in your care and who cares for you. It’s also important to find support, friendships and a doctor that you have built trust with.

If you would like to nominate me please click here!

Uncategorized

Stoma Products Review: Confidence Be Soft Convex Stoma Bag

Today is Wednesday the 3rd of July and I have finally received the Confidence Be Soft Convex black drainable bags in the post! As today is bag change day, I am going to be trying the bag sample out!

First impressions of the bags are great! Very soft, lightweight and aesthetically pleasing! Putting the bag on was very easy and being completely honest, it doesn’t feel like I’m wearing a bag! It doesn’t crinkle on the skin or rustle like most bags do when there is movement. The flange sticks very well and it feels soft and light with no indications of leakage from the product itself.

However, after emptying the bag I found that when I went back to empty each time, there was leakage of the contents of the bag at the opening at the bottom. No matter how much I tried to clean and put tissue inside the bottom, the same thing kept happening. I also found that it was messy and it made emptying the bag quite difficult due to mess and getting well basically, poop on my hand. The type of fabric that is used also makes it difficult to slide your hand down when in the process of emptying.

I think this range of bags are more for late ostomates rather than new because of the leakage issue when emptying. If you are a new ostomate with this bag on in hospital and on pain relief, tired and learning about having a stoma, the mess is going to make accepting of the stoma a bit more difficult and also very messy. For us more older ostomates (those who have had their stoma longer than 6 months) it isn’t so bad as we know what to expect and how to deal with the mess as such.

That being said, if you don’t mind a little bit of mess which is easily cleaned up and want a bag that will give you that confidence boost with the colour range, making the bag blend in with your clothing, then this is absolutely the bag for you!

Mental Health Blogs, People's Stories!, Uncategorized

What’s Your Story? Meet Lisa!

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Lisa (37) was diagnosed at age 21 with Crohn’s Disease.

During Lisa’s time with Crohn’s Disease, she has had to endure 7 surgeries, 3 abscesses, 1 drain, numerous hospital stays (longest one being 5 months) and many complications, infections and procedures all whilst working full time as a nurse. For the past 10 years Lisa has not been able to work but spends her time doing her favourite hobbies such as art. After 2 years of taking a medication called Humira which suppresses the immune system, Lisa still suffers from active fistulas from her stomach which leak out the abdomen!Lisa was also diagnosed with Anxiety, a mental health condition which can be quite commonly ‘hand-in-hand’ with a Chronic Illness, which has been getting worse for her over the years. Lisa said “I personally think unless you’ve actually experienced anxiety, on any level, you have no idea what it feels like!”

“I felt so alone, I honestly didn’t know how strong I was until I had to go through this roller coaster.”

During her first hospital admission, Lisa had an Appendectomy which confirmed she had Crohn’s Disease and this came to no surprise as being a nurse meant she had already studied Inflammatory Bowel Disease in the nursing programme. It still left her with feeling scared, alone and worried. Lisa had a good life until the age of 19, where luck was always on her side with a bright future ahead but this changed after her diagnosis which meant she was no longer in charge of her life or ahead of the game. For the next ten years, Lisa tried to live her life as normal as possible doing things she loved such as partying, going to concerts and working hard and hid her suffering from all those around her. One positive that has come from having Crohn’s Disease and the experiences surrounding being chronically ill is that it had benefited Lisa in her career as a nurse which meant she had more empathy and was able to be patient with people.

“The craziest part is that I’m the happiest human all the time…constantly trying to do anything to make others smile.”

Relationships were a big worry for her, due to severity of the disease and how unpredictable it can be, accidents can happen and dashing to the toilet becomes the ‘norm’. “I was going for the broken type of guys (the ones who needed ‘fixed’) The broken guy who needs to rescuing, aka the single dad or the guy with no job.” Luckily, Lisa soon realised that relationships like that just don’t work, it isn’t anyone’s job to fix someone else. During Lisa’s time being poorly, her mum was a huge support to her.

“I’d never have thought that my mom would be helping my sick, limp, malnourished body from a wheelchair to the bathroom chair in the hospital, and washing my hair for me when in my early 30’s. My mom was right there beside me, rubbing my back and helping me with getting me a clean basin for being sick.”

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Albert (8) in picture above

The next part any Chronically Ill person gets quite often is the dreaded question of “when are you having kids?” Due to having treatment for Crohn’s Disease, Lisa was never in a position where she was well enough to try for children then the issue of most medications being used to treat IBD, you cannot get pregnant whilst on them. Now at 37 years old and on Humira again it is advised that you don’t get pregnant on this medication so it is very difficult. For Lisa, her dog Alfie is her kid! Albert short for Albert, is an eight year old Shihtzu. “It’s a cute little story how we got put together, I wasn’t looking to buy a dog!…. When I first saw Albert, he was about 3 months old. I was supposed to take care of him while friends of mine went for a tropical holiday for a week over the winter holidays. When they returned, I knew they saw how much albert and I were meant to be! I still remember my friend yelling “Merry Christmas!” as she left my place! My favourite Christmas gift of all time!” The joy, love and laughter that Albert brings to Lisa daily, keeps her fighting through and continues to give her strength.

Stoma Products Reviews

Stoma Products Review: Salts Adhesive Remover Spray and Wipes

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When I first had surgery for my Ileostomy in 2015, one of the first products I had at home was the Salts Adhesive Remover Spray. Over the years I have tried many different ones and then at The Purple Wings Charity Photoshoot in March this year, I ran out and my friend Annie gave me a spare bottle that she had which was the Salts one.

 I went onto the Salts website and ordered another sample so I could use it more than once and review it so other ostomates can read about the different products that are available. After calling Salts they also asked if I would like sample of the Adhesive Remover Wipes which also smell of peppermint and of course I said yes!

So now I will talk about using the products. Salts recommend using the Adhesive Remover Spray to peel the edges of the flange and then to use the Adhesive Remover Wipes to remove the pouch itself. The first thing I noticed about the product was the lovely smell of peppermint! Usually when changing my stoma bag there is always a slight smell which is totally normal but with this spray, there was no smell present at all. After using my other stoma products, I put them all into my stoma wash bag and tied up the disposable bag and put it in the bin, usually after changing my bag a smell lingers for a while. However when I went into the bathroom afterwards, the only smell was of peppermint!

Throughout the day, my skin felt so refreshed from the peppermint and it was really pleasant. I even have gotten my partner who also has an Ileostomy to try it and he absolutely loves it! I asked him what he thought about it and this is what he said:

“It is really refreshing and made my skin around my stoma feel really fresh. It made taking off my pouch really easy and quick, whilst being pain free with no irritation to my skin.”

The wipes took off any left over adhesive from the skin completely pain free and quickly too. I would highly recommend these products and if you would like to order a sample or take a look at their products, then please click here. You can also follow them via Instagram @saltshealthcare and twitter @SaltsHealthcare.

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.

 

 

 

 

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!