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! đź’ś

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Awareness, Chronic Illness Blogs

Poop Emoji Things that IBD Sufferers Can Relate To!

Today is the beginning of the Crohn’s and Colitis awareness week so, I thought about writing a blog about poop emoji items which may find IBD sufferers some comfort and positivity, in viewing these items! Don’t get me wrong, I love looking at them and all the different things there is out there, but for me I like the little poop cushion and that’s fine for me!

So, whilst looking around social media, I noticed many sufferers posting about poop emoji cushions and clothing and many of us were able to find the positive side to suffering from an incurable illness that has seen so many of us spending hours on the toilet and many hospital admissions. I have noticed it has also brought acceptance to having Inflammatory Bowel Disease. One of the most heart warming things about the poop emoji cushion is how it has brought love and support to sufferers from family members and friends, making poo not such a taboo subject!

During my longest hospital stay in 2015, I got a poop cushion from Ebay to cuddle into whilst I was on strong medications. During the painful days and sleepless nights I somehow got comfort from my little ol’ poop. It made the nurses laugh at how it’s eyes were so big and googlie! So it also brought positivity to such a terrible time. Before I was rushed into emergency surgery for a stoma to be formed, I asked my mum to look after my little poop and being so dosey on pain relief I said to it “see you on the other side!”

Members from the Crohn’s and Colitis forum via facebook wanted to take part and show what poo emoji items they owned!

Krysta with a hot chocolate and cream in her poop emoji cup from Asda!

Eleanor shared a sign from her local pound shop with a poop emoji sign – totally relatable when you need the toilet and people in the household don’t understand the concept of time!

Emily shares her poop emoji pyjamas, slippers and collection! Again so many of us can relate to enjoying comfy pyjamas and slippers especially at this time of year! My favourite is the unicorn poop emoji tshirt!

Charlotte snuggles into her rainbow poop cushion at night to keep her company!

Members of IBD Supheros also shared some items they have!

Leelo shares her badges for her work bag and eraser which are super cute! I am absolutely loving the stoma bag covers too!

Ian has a poop cushion and little keychain!

Fiona has a poop cushion and a soft stuffed poop keychain!

Stacy shows off her poop cushion too looking fabulous!

James from the Colostomy UK Support Group shows his stoma supplies with the poop emoji!

And Shauna from IBD & Me shares her little walking poop emoji that poops out little sweets!

And Emma from the Bellies Clothes Swap or Donate group shows some interesting items and the realness of trying to wrap presents with our little furry friends!

If you would like to get yourself something with the poop emoji, here’s some things that i found online!

These are all suitable for any gender and even children! Which is perfect for christmas gift or a gift to someone you know. I hope this has brought some positivity to you today! Of course, not everyone enjoys the poop emoji items so please don’t get them an item as it may offend! Another great thing however is the interaction it brings within children and how a parent who suffers can explain things in a fun and positive way!

I look forward to seeing all the wonderful awareness posts this week an if you would like to feature on my blog please message my instagram page @glitterygutsx.

Awareness, Chronic Illness Blogs

What is Chronic Sinusitis?

Chronic Sinusitis is a condition that affects the nasal sinuses which become inflamed and swollen that also causes issues with your ears, nose, throat and head.

Long term issues can happen from a sinus infection that reoccurrs and medications such as antihistamines are given and sprays to help clear this up. Antibiotics are also given when infection is present.

So what are the symptoms?

  • Thick, discolored discharge from the nose or drainage down the back of the throat (postnasal drainage)
  • Nasal obstruction or congestion (causing difficulty breathing through your nose)
  • Pain, tenderness and swelling around your eyes, cheeks, nose or forehead
  • Reduced sense of smell and taste
  • Ear pain
  • Pain in your upper jaw and teeth
  • Sore throat
  • Bad breath (halitosis)
  • Fatigue or irritability
  • Nausea
  • Nausea

Chronic sinusitis and acute sinusitis are similar with signs and symptoms but are much different. Acute sinusitis is a temporary infection which last upto 1 to 3 weeks. Chronic Sinusitis is an infection that lasts longer and often cause more fatigue and a fever isn’t a common sign of chronic sinusitis whereas acute sinusitis, a fever is.

What are the causes?

  • Nasal polyps – tissue growths can block the nasal passages or sinuses.
  • Deviated nasal septum – crooked septum where the wall between the nostrils restrict or block sinus passages.
  • Other medical conditions – the complications of cystic fibrosis, gastroesophageal reflux, or HIV and other immune system-related diseases can result in nasal blockage.
  • Respiratory tract infections – infections in your respiratory tract, most commonly colds, can inflame and thicken your sinus membranes and block mucus drainage. These infections can be viral, bacterial or fungal.
  • Allergies such as hay fever – occurs with allergies that can block your sinuses.

If you suffer from reoccurring sinus infections then see your GP for a referral to your nearest ENT clinic. For normal sinus infections, salt rinse sprays work really well to clean the nasal passages along side a spray recommended by your GP. I have found only one medication that helps me durinf the night called Chlopheramine which is an antihistamine.

There are also support groups via Facebook you can join however ALWAYS consult your GP or ENT consultant before changing or trying anything.

Awareness, Chronic Illness Blogs

What Is an A.C.E Tube?

Meg has had an A.C.E tube since the age of 6 after being born with an imperforated anus (a rare abnormality in which there is absence or abnormal localization of the anus. The rectum or the colon may be connected to the vagina or the bladder by a tunnel known as a fistula) after trying a reversal of the original colostomy, which didn’t work. Many people including myself have never heard of an A.C.E tube so i wanted to write a blog to raise awareness of one and to share this incredible journey this young woman has been on since birth.

What Is An A.C.E Tube?

An A.C.E has the characterisations like a button hole, which is a channel (usually using the appendix) into the large bowel at a point called the caecum. This is where the end of the appendix is opened up to form a channel from the tummy wall to the large bowel. This is called a stoma (artificial opening). Fluid is used to wash out the bowel and can then be inserted easily. This fluid flushes the faeces out through the rectum in the usual way. If the patient has had their appendix removed, the surgeon may need to use another method to create the passage.

After the Operation:

The stoma and surrounding area needs to be treated as a wound for the first five days. The patient should keep the stoma clean by washing it once a day and then pat it dry with a towel. Using a skin barrier spray or skin barrier wipe can be used to protect the skin once healed.

How Does it Work?

A connector is attached to the A.C.E tube every day that is connected to a saline solution and laxative (in a container) which flushes out the bowel. It takes approximately an hour a day.

At the time when Meg had the operation for the A.C.E Tube, she was the first patient to have it done in the hospital she was admitted to, which was 10 years ago. When Meg is an inpatient in present time, the tube brings a lot of medical attention from nurses who are very interested in what it is and does! However this does have a downside for Meg, where GP’s and local nurses aren’t so “clued up” on the A.C.E tube and this can result in poor care when issues occur. Many people can have this issue with stoma’s where due to lack of knowledge unspecialised nurses and doctor’s really have no clue and treatment is limited and difficult.

The Positives of an A.C.E Tube for Meg;

You can’t see the ACE button and it is hidden really well. Sometimes Meg has complications where the stoma tube can leak and the skin becomes sore but apart form that, she has described it as being “fab”!

One day, Meg hopes to be a nurse. As a very bubbly, confident, chatty young women and the medical experience and knowledge she has gained i think she will be a brilliant nurse!. In her spare time Meg loves make up, clothes, movies and love island the TV show.

Awareness

Why It Is Important To Donate To Your Local Foodbank.

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Hello all! Hope you are all well. This blog is about donating to Food Banks and why it is important to support your community. As the colder weather creeps in (can’t believe it’s October already!!) it get’s closer to Christmas, being the most expensive time of the year. Many families or people living alone are on a low income and this makes Christmas extremely difficult, so when an unexpected bill comes along or a house hold appliance breaks, getting money for food just isn’t an option.

The Trussell Trust’s network of 428 foodbanks works to tackle food poverty and hunger in our local communities, as well as across the UK. The Foodbank Network was founded in 2004 after four years of developing the original foodbank based in Salisbury.

“In 2017/18, The Trussell Trust’s Foodbank Network provided 1,332,952 three-day emergency food supplies and support to UK people in crisis. Of these, 484,026 went to children. As a network, we want to see more people helped out of crisis and fewer people needing foodbanks in the future. That’s why The Trussell Trust and local foodbanks are working together to develop new ways to help people out of crisis through programmes like More Than Food.”

Local Food Banks provide 3 days of food for the people or person referred to them in need of one. But how are the donations of in-date food obtained? The answer is easy.. YOU!  Many supermarkets such as ASDA and Tesco have a collection point where you can donate food and important essentials. After the food is collected volunteers then sort it out into packages for the person who is going to receive the Food Bank package.

But how can we identify a person or family in need? Professionals such as doctors, health visitors, district nurses, social workers and police can refer them to the Food Bank programme and issue them with vouchers. Not only can they help but if you are a neighbour, friend or family member you can also make a difference. Pop round and see they have plenty food to eat this winter, go round and visit with some coffee, tea and biscuits and some milk. Have a chat and make sure they are doing OK and know that you are there for them. If you see an elderly person who is struggling, pop round with a box of supplies; they will be extremely grateful. Volunteers meet clients over a warm drink or free hot meal and are able to signpost people to agencies able to solve the longer-term problem.

After doing the weekly shop today, I realised I had things I could donate that I hadn’t even opened! It gave me inspiration to spread the word and get us all to work together and help each other. As someone who struggled a few years ago, I received a few Food Bank parcels and I will forever be grateful to the people who worked long hours in all weathers to provide me with food and deliver it to me because that got me back on my feet at a very difficult time where i was battling not only physical illness but also mental illness from the stress. The Food Bank is only existing because people in the community donate, without the donations the charity simply wouldn’t exist and to me, that’s pretty incredible. 

So I ask those of you who have supplies that haven’t been opened and have been sitting for a while that still have a good few months of date left on them to donate and help others in need. Or if you are doing your weekly shop buy a few little things to pop into your local collection point. To find your local Food Bank please click here. Let’s help those in need, but not just once. Donations are received all year round so donate when you can!

If you need help please contact via Contact Us – The Trussell Trust.

Take care all and remember; you are NOT alone. Don’t be embarrassed by something out of your control!

Please also keep warm this winter.

Alannah.

 

Awareness

World Ostomy Day 2018

World Ostomy Day is a day of each year that is dedicated to Ostomates worldwide to help raise awareness about ostomies i.e Urostomies, Colostomies and Ileostomies. Also know as a stoma, the word Stoma is a Greek word meaning ‘mouth’ or ‘opening’ and it is estimated that over 13,500 people undergo Stoma surgery each year!

It is a very important day to those with a Stoma because it is a great way of not only raising awareness but to share their journey on how they got a Stoma and life with an Ostomy. But what i really want to emphasise about Ostomie’s is the illnesses that may opportune someone to become an Ostomate. So what illnesses or factors may result in a person having a life changing operation for an Ostomy? Here are a number of them; Colorectal Cancer, Bladder Cancer, Ulcerative Colitis, Crohn’s Disease, Bowel Cancer, Chronic Constipation, Ehler Danlos Syndrome, Familial Adenomatous Polyposis, Bowel Obstruction, Diverticulitis, Fecal incontinence, imperforated anus or other birth defects and other factors such as infection, injury and polyps.

As an Ostomate, it’s important to me to raise awareness but also to support others who have a Ostomy or people who are waiting to receive one. I am also lucky that i met my partner through having Crohn’s Disease and Ulcerative Colitis as he also suffers from Crohn’s Disease. Not only did I meet him but I also have made life long friends who i consider as family and have made my life awesome!

There are charities who support Ostomates such as A Bear Named Buttony who makes bears with a button as stoma to help children and adults after surgery (who gave me a bear after my surgery in 2015!), The Purple Wings Charity, Get Your Belly Out (also known as GYBO), The Purple Wings Charity, Crohns and Colitis UK and The Colostomy and Ileostomy Association. There is also a research charity called Cure Crohn’s Colitis who raise money purely into researching for a cure for IBD.

So how did i become and Ostomate? A long and painful journey cut short, i started suffering from bowel issues when i was 13 and after 4 years of going back and forth to the doctors with extreme pain, constant infections, vomiting, weight loss, numerous toilet trips a day, severe constipation, bleeding, rectal pain and tears, blood tests and rectal examinations and scopes, i was finally referred to have a Colonoscopy. I was diagnosed with Crohn’s Disease and Ulcerative colitis during the Colonscopy in August 2012 and this was then 100% confirmed when biopsy results returned from the laboratory. I was given a steroid course to start on the day of the Colonoscopy but unfortunately the disease was already too severe and i was admitted into hospital for the very first time. I was given IV steroids and started on treatments for IBD called Pentasa Granules and Azothioprine however i took an allergic reaction to both so i was then given Asacol. During that stay i was also diagnosed with a large bowel blockage after an X-Ray showed this, so i was given laxatives and during a flare you can imagine how much i was going to the toilet and the pain was immense and crippling. For years i tried numerous medications such as Methotrexate, Infliximab, Mecaptipurine, Oral Steroids, Suppositories, Humira and then other medicines to counter act the side affects such as antibiotics, nutritional drinks and supplements, iron supplements, vitamin supplements, dehydration sachets, Solidifying Agents for Excessive Diarrhoea, Anti Sickness, Pain relief, Menstrual Cycle issues and Heart and Migraine problems. At age 20 i was in hospital (2015) and had contracted a bacteria called Campylobacter whilst in a severe flare, both leading to completely rotting my large bowl which then led to me to develop Sepsis (blood poisoning.) I was rushed into emergency surgery within 2 days and was given an Ileostomy. A few months later (September 2015) i was rushed into theatre again after getting sepsis for the second time due to the Disease rotting my rectal stump. Two weeks after that surgery i was rushed into hospital with a severe infection in the wound where my rectal stump were and was put onto IV Antibiotics and took a reaction to them and almost died, that reaction was more horrific than having sepsis and surgery. All this combined lead me to be diagnosed with Anxiety, Depression, OCD and PTSD. I have also since then been diagnosed with Behcets Disease (a rare form of Vasculitis), a rare form of Crohn’s Disease, Sciatica, Fibromyalgia, Pernicious Anemia, Hyper Mobility Syndrome, Arthritis, Asthma and Nerve Damage, an Incisional Hernia, Adhesions, Chronic Sinusitis and a twist and narrowing in my Small Bowel.

Life now is still very hard as i suffer with these multiple illnesses with no cure and no medication i am able to take for pain from bowel complications. I’m waiting to have 4 wisdom teeth and my Tonsils removed due to having recurrent Tonsillitis. I love having my stoma and not having to sit on the toilet 70 times a day is great however the problems i have now sometimes seem just as bad as before i had surgery. I experience pain every single day, most tablets i cannot absorb so i take ones that melt and i am under investigation for other issues in my small bowel which is suspected as Small Bowel Crohn’s. I also get b12 injections every 3 months. I am waiting to see a dietitian for my weight loss as i currently weight 48kg. If the tests show Small Bowel Crohn’s Disease then i finally qualify for the last treatment i haven’t tried called Stelera.

So many people suffer from debilitating diseases and many do manage a much better if not normal quality of life after stoma surgery, however many donot. Many people who are chronically ill also suffer from family and friends being un-compassionate and don’t understand their condition therefore become ignorant and sometimes rude or nasty. I asked people about this and 90% said that their partner was very understanding of their condition(s) and with family 100% of people said their family members were not understanding. By raising awareness the aim is to help people gain knowledge of conditions in hope that they are able to support those who suffer. However we also have to remember that many donot want to gain knowledge and understand and would rather concentrate on their own life as illness doesn’t affect them then they think in the sense of why should they care? My own most recent experience is with a family member who got married and i had posted pictures of us together in her wedding dress and i was messaged about it that i should have known not to do that following a post a bridesmaid had posted on facebook, who i didn’t know, didn’t have as a friend and due to the fact that i was bed ridden for months from Chronic Sinusitis and not knowing that i was pregnant at the time. After explaining as to why i didn’t see this post the response i got was “it’s not all about you Alannah” which led me to tears. I couldn’t understand how explaining why i had no idea somehow made it all about me, and i still don’t. It still upsets me to this day that family could be so unsympathetic towards me and the illnesses that i suffer from. The reality is that no matter who we think highly of or love or care about, that some people just cannot sympathise or understand what we go through. So many people who suffer from illness loose friends who for example have been their friend since childhood.

I am so grateful for my illnesses giving me life long friends and an amazing partner! It has also given me great opportunities to take part in raising awareness for illnesses and it gave me the inspiration to start my blog and my instagram page and facebook page. Illness has taken so much from me including 4 babies and at times my own self but has given me purpose to help others who suffer and courage to be brave and fight, not many people can say they have been on their death bed 6 times and still live to tell the experience!

 

My message to those who are struggling, please give it time. Some days it feels like you don’t want to wait but it truly is worth it for some better days.

Happy World Ostomy Day and have fun in raising awareness!

 

 

 

 

Awareness, Mental Health Blogs

What It’s Like To Be With Someone Who Has OCD/ What it’s Like To Be With Someone Who Doesn’t!

It’s no secret that I have OCD nor am I ashamed of it or embarrassed. I actually have, over time, loved having OCD. Why? You may ask; It gives me some peace of mind when I am able to get things done such as the ironing, having a clean washed sofa or a freshly cleaned floor. It gives me real satisfaction emotionally. When people use the phrase “I’m bored of waiting it’s like watching paint dry”, I literally could sit and stare at a freshly painted wall and have so much peace and happiness. It’s not something easily explained but it feels great looking at something that’s so fresh and clean.

One thing I do wonder however, is what it is like being in a relationship with someone who has OCD. I have never discussed this with my partner before. I sit here on the sofa whilst he is gaming and I am watching The Notebook on Netflix and away to ask him what it is like for him. Hopefully it’s not all bad answers!

“How do you find it with me having OCD?”

“Honestly, it doesn’t really bother me. Sometimes it can be frustrating when I help to do things when I’m over e.g hanging out the washing- you like it a certain way and I always forget and you take it all down and hang it all up again.”

“Or when I do the dishes in the sink and you hate dishes being done in the sink and like them done in a basin so I have to take them all out and put them in a basin otherwise you get really unwell.”

“But really it isn’t so bad. The house always looks so clean and tidy except when you are more ill some days and infections, the Crohn’s Flare or fatigue makes it hard for you to even walk, but even then it’s never bad.”

I think I’m quite glad that my partner isn’t too badly affected by my OCD however being with someone who doesn’t have OCD can be extremely difficult for me;

I have to do things a certain way and in routine. Certain days for certain things. If I’m unable to do things I get extremely stressed or if I’m really unwell the littlest of mess will aggravate me and I get really moody and stressy!! I find it infuriating with myself that because things have to be done a certain way that when my partner does help me that if it isn’t done my way then I have to feel the need to correct him and re do it. I get annoyed at myself.

Sometimes I have had panic attacks because my anxiety kicks in from the OCD and the days I feel like I’ve failed to do even the simplest of tasks. Many days I get so caught up in cleaning that I make myself unwell for days because I try to get as much done as I can to the point where I’m crawling and crippled by pain- baring in mind that even doing a load of washing and then taking it out or hanging it up causes me extreme pain.

I always make sure to de weed the garden when it needs done and I do my best to make my garden pretty so if I need air from being sick or feeling sick that is relaxing and helps me calm down. But again my OCD makes me seriously ill and unable to cope with the pain I have most days that even finding a cigarette tab in my garden sends me into a fluster. At the moment I am constantly finding them littered in my garden and I spent 30 minutes just picking them all up a few days ago resulting in me not being able to cope with the pain and I’ve lost sleep. Over the past few days I’ve had around 11 hours of sleep possibly even less, meaning each day is a real struggle with pain being intensified by fatigue which then brings on sickness.

When I do have panic/anxiety attacks triggered by OCD or not I have extreme insomnia that can last for days sometimes weeks. So it is a vicious circle if it isn’t a good spell of OCD. I think that, really, the best thing is knowing other people who have OCD. So many of us mostly suffer from the mental health condition but I also believe that it brings great joy to people’s lives too. It’s a love hate condition and I found that accepting it and dealing with it each day was a much better option for me rather than continuing antidepressants. Due to suffering from anxiety and depression over the years, I have been on many and the only time I have benefited from them was when I was in a bad depression which led me to self harm. I’ve been free of that dark place for just little over a year now too which I think OCD has helped me out of on top of the treatment.

If I could sum up OCD I would say it’s taking the good from a bad situation and taking the bad from a good situation- there are always going to be pro’s and con’s. You can’t always garuntee it to be a good day but you can try to deal with as best as you can.

Awareness, Chronic Illness Blogs, Personal Blogs

6 Years Ago I Was Diagnosed! My “Crohnsaversary”!

It has been 6 years today, that I had my first colonoscopy and I was diagnosed with Crohn’s Disease. It was the 15th of August 2012, at age 17.

The picture above is me just a few months into Steroid treatment and I had Moon Face. I was away to a fancy dress party and trying to live my life as normal as possible, but little did anyone know I wasn’t living- I was existing. I spent 98% of my time on the toilet or vomiting in the sink. I was constantly passing blood and mucous and passing out on the toilet where my mum would find me early in the morning when she would get up to get ready for work.

4 years previously to this is when my issues began. I would have severe constipation or severe diarrhoea and vomit from time to time whilst experiencing the worst stomach cramps I had ever had. These issues would be worse when I was on my time of the month but I just put it down to that, and so did my doctors. As time went by, my cramps, vomiting and bowel issues got worse and worse. Each GP I seen told me I had IBS, bad periods or Piles. My mum and I knew it was much more than this but no-one wanted to listen. After 4 years they finally took some blood tests and one blood category called CRP came up high, which indicates inflammation in the body. I was referred for a colonoscopy and had to sit tight and wait for my appointment to come through. Months went by and I continued to try at life- applying for college, trying to work (missing loads of shifts and being sent home being unwell) and trying to maintain friendships. I continued to live on the toilet and vomiting constantly, having constant tonsillitis and glandular fever, ear infections, urine infections and sinus infections. Months of being on and off antibiotics and going back and forth to the GP practice.

The day finally came that I got an appointment for a Colonoscopy and I was absolutely terrified. I previously had a telescope with a light on the end of it inserted into my rectum by a GP who was so rough and forceful that she had made me bleed and scream in pain- but she didn’t care, she continued against my own will. I thought to myself “What if that happens again? ” “What if the pain is too much for me to handle?”. I spent every day leading up to the Colonoscopy in tears. The night before I had to drink a powder dissolved in water called Picolax which was in preparation for the procedure, so the bowel was clear. It was absolute hell, the first drink nothing happened and I had decided to eat 1 pringle- BAD MISTAKE! I was running back and forth to toilet even more than usual, the pain and the sweating was intensified. I made it through the night and the day of my colonoscopy arrived. My Mum and Dad accompanied me in the waiting room, with a hot water bottle on my tummy crying due to pain and fear of what was awaiting me.

“Alannah Simpson please” a nurse shouted, I looked at my Dad and I was terrified, i hugged him and then asked my Mum to come in with me. As my Mum and I went into the consultation room I was asked several questions and then asked to change into a hospital gown. I was then taken into a room with lots of equipment and machines surrounded by nurses in green uniforms. I felt like I couldn’t breathe and the tears streamed down my face. I kept thinking about blood and pain, the cramps intensified as I lay down on the bed. The nurses put a needle in my arm and gave me pain relief along with sedation and I felt quite groggy and fuzzy, like when you have drank too much on a night out! I begged for my mum to stay but she wasn’t able to stay, however the nurses were so lovely and really looked after me. They held my hand and then the consultant came in and began to insert the long camera into my rectum. Being completely honest I didn’t really feel it, it was more uncomfortable. As he went further in I had asked where it was, so he pushed it onto my tummy and said to put my finger there and I could feel the camera- I was completely fascinated! As I lay there I watched the screen and the consultant and nurses were talking about the findings and took biopsies. I didn’t really understand what they were saying, but what I did understand was what I was seeing on the screen. My large bowel was red raw, ulcerated and full of puss! I was horrified and asked what the hell this was. The consultant told me it was positively Crohn’s Disease and they were giving me an emergency supply of steroids to try and take the inflammation down.

I spent an hour or two in recovery and then I was able to go home. I was given a print summary of the procedure and report of their findings with me. A few days went by and I took the steroids and felt no different, if anything I was starting to feel worse. I went to the GP and was admitted into Aberdeen Royal Infirmary when the old wards were there- 13 and 14 which were for each gender. I had never had a cannula in my life, I had doctors and nurses coming round asking me questions and saying things I didn’t understand. That day was a blur. The next day I had an x-ray and an MRI and I was told I had a blockage. The treatment for this was more laxatives and stool softening tablets- it was hell. The ward was awful, being only 3 toilets for all patients in the entire ward. I spent most of my time either crying in pain in bed or crying in pain on the toilet, when I could get one! I seen things no 17 year old girl should see. I seen old women who were hooked up to IV bags of blood, some connected to heart monitors, many who were incontinent and had tried to get out of bed and covered the floor in bowel movements. Due to me being over 16, the children’s hospital wasn’t an option and I was months away from turning 18.

I was lucky that my Mum and Dad visited me daily on the evenings but when they left it felt like my world was crashing down. I couldn’t stop crying, I felt so alone with no-one to talk to in the ward who knew what condition I had or who was even close to my age. I was started on two treatments called Pentasa and Aziothioprine and had an allergic reaction so I was then moved onto Mecaptipurine which I was OK with. After that week in hospital I was able to return home and tried to go back to college but it was far from easy. Previous to the admission I spent most of my time in the college toilets. The other students in my class would make fun of me and say I was ditching class. They would say this to the tutors and they would ask where I had been and I explained that I had a colonoscopy soon. When I returned I provided them with the letter and they gave me so much support. The students in my class were still constant at keeping up with making time hard for me and my friends in the class- writing things on Twitter about us. Eventually I had to leave. The stress of being il, having insomnia from the steroids, the work I had to do at home to try and catch up and the stress these people caused for me. I hit depression and saw no way out. Things at home were bad too, I was in a seriously bad and toxic relationship where I was mentally and physically abused. I was too exhausted to fight back, I was too scared to tell anyone or walk away in fear that I would be even more alone. I could only see one way out and that was to be dead. I took a box of paracetamol and downed them with alcohol and curled myself up into bed and hoped it would work. It didn’t. I woke up and vomited into the toilet for hours. I told nobody. I felt so much guilt so much grief for the life I couldn’t have and I had no idea what the future held for me. I felt like a burden to my family and friends. I then lost friends and had to deal with a miscarriage- I felt useless that I couldn’t even carry a child so I told people I got rid of it to save myself the embarrassment and shame.

Time went by and more and more people left, I tried college again the following year but I was in and out of hospital admissions and had to leave. I decided to try and work but that didn’t work out either. My boss and the people I worked with weren’t understanding at all. I went to see the people head of the care home and gave them my notice and left. I gave myself time and tried another job but that too ended up with me being fired and not given the pay I was due for the work I had done. So I moved onto another job and then became homeless and slept on my dad’s floor for a while untill homeless accommodation was available for me. Once I moved into the homeless accommodation bungalow, I got a job at a local hotel as a barmaid and waitress. I then applied for a second job at another local bar for the weekends to earn more money as the rent for homeless accommodation was ÂŁ90 per week. I was instantly fired from the hotel because they had issues with the owner from the other bar. I then applied for a job as a carer at another local care home and I loved it!

My health continued to be a burden to me and caused me pain but after loosing the job as a carer from my crohns flaring again and a few months course of steroids I hit remission. I was then working weekends at the bar and actively looking for work anywhere but nothing came up. I was determined to catch up on lost time being a teenager and experiencing nights out with friends. I went to house parties and went to a night club where my friend Chris was dj-ing with hits from my favourite djs – The Tidy Boys. In October that year I was given a permanent home from the council and began to settle in whilst working as a bar maid and life seemed to be OK. I met someone who I really liked and over time we spent more time together.

Little did I know what was brewing inside of me at the beginning of the next year.. I had become seriously ill and after a few weeks I was rushed into hospital via ambulance and later found out I had contracted a bacteria called Campylobactor also associated with food poisoning, however this type from my stool samples was more common from abroad and they had asked if I had recently been on holiday. I have never left the UK so still to this day I have no idea where it came from! I was asked to take part in a study at Robert Gordon University in Aberdeen where they conducted studies into that. The Campylobactor bacteria then led me into developing Sepsis, where my large bowel had become infected and I was severely unwell. At that point they offered me two options.. 1. To trial a drug called Vedolizumab or 2. Surgery for a stoma. Option 1 meant I would have to travel to Dundee back and forth for months for a drug that they didn’t know it’s success rates and if it would work for me, the second option felt more appropriate for me.

In a few days I had seen a surgeon and it was agreed that my entire large bowel would be removed and I would have an ileostomy formed. There was talk about a loop ileostomy or a colostomy however they wouldn’t have benefited me for the extent and severity of my disease. The sepsis got worse and one morning my surgeon came to see me and felt my stomach and was gravely concerned. My bloods didn’t show anything- no raised CRP no raised White Bloodcell Count, only my organ functions weren’t normal. I was sweating non stop and my windows were constantly wide open, when the doctors and nurses came in they were shivering! Again this didn’t show on the Thermometer. So, as my surgeon examined me I was rushed in for emergency surgery instead of the planned surgery for a few weeks later. A stoma nurse came to see me that day and marked me up and I was fasted in preparation for surgery. She gave me a booklet and a bag to look at so I could show family or friends. The booklet explained quite a lot. But it didn’t comfort me. I was scared but I was also excited. I couldn’t decided which feeling I felt more of.

After surgery I was sore of course but I felt much better. The cramps and burning were gone, the vomiting stopped and although I was groggy from pain relief I instantly knew it was the right decision I had made. After a week I was able to go home. But when I got home I also got dumped. I was told he couldn’t handle what had happened with me and he couldn’t deal with my illness anymore. I was distraught and instantly felt alone again. My health started to decline again as I was at home and I was constantly on the toilet and vomiting again. I couldn’t understand why after surgery I was like this again. I was infuriated! I was just so frustrated and in pain. A few months went on and I was in and out of hospital again and the last time I was rushed into hospital via ambulance. I was passing mucous the colour of a cup of tea which I then learned was puss, along with blood and chunks of skin.

I then had surgery to remove my rectal stump and I was given what we IBD sufferers call a Barbie Bum. The surgery was a little 3 hours and when I woke up it was AMAZING! The morning after I walked round HDU 7 times and had my drain removed on the third day and I was able to go home. When I got home I was so emotional and then I started to feel unwell again. At this point I was spewing again so I went to my GP practice and given oral antibiotics for a wound infection. They didn’t work and I felt gravely worse. I was then admitted again and given IV antibiotics. My lips and throat started to swell and I kept blackening out. I rang my buzzer and the nurses face worried me. I blacked out and woke up to so many people around me with the curtains closed. I was given adrenaline through my cannula every 5-10 minutes, had an ecg on, a blood pressure cuff on my arm and a heart monitor clip on my finger. Eventually I came round and it was decided to put me on another IV antibiotic that wasn’t penicillin based. I almost died that night.

Since that time I have been in and out with constant wound infections from where my rectum used to be. I also had an infection under my stoma and it healed up with steroid and antibiotic creams. I’ve suffered with liver issues where I got an autoimmune hepatitis (non infectious) and it then went away, anaemia, other numerous infections, more sepsis, b12 defiency, diagnosis of other auto immune conditions such as Behcets Disease which is a rare form of Vasculitis, Arthritis, Fibromyalgia, Pelvic/Vaginal/Perineal/Reproductive Crohn’s Disease, Asthma and have had 3 misscarries and a surgical termination due to being so ill.

But what has these illnesses and tough times really taught me?

They have taught me that no matter what shit you have going on that not everyone is as understanding of illness. Its taught me that even though we all suffer from the same conditions, that we are not all under one category and we are NOT all the same! It’s taught me so much on medications, understanding procedures, stoma products, IV medications, surgery and recovery. But what it has really taught me more than anything is that there are others out there just like me- who suffer from illnesses with pain and all that comes along with it.

I am also thankful for having Crohn’s Disease because if I didn’t have it, I wouldn’t have the most important people in my life. I wouldn’t have strength or passion in raising awareness and advocating for people just like me. I wouldn’t know pain or weakness or knowing how much it means when you have help from when I help someone. I also wouldn’t have met my amazing partner Jaimie who looks after me on the days I can’t get our of bed.

My illnesses have also made me realise that just because I am ill and have these diseases, that I am me and not the illnesses that I suffer from. That just because I don’t work doesn’t mean I am lazy anymore. I appreciate the little things that I once took for granted, that many people who have good health take for granted daily.

I have been able to attend charity events such as The Purple Wings Charity balls and the GYBO ball. Where we all come together and celebrate our strength in numbers and share our stories. We make new friendships and manage to keep eachother on our toes and keep up the fight! đź’ś

Awareness, Personal Blogs

IBD – Pregnancy/Termination

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Hey everyone! The past few months as people know have been pretty difficult for me as i have been battling with my Crohn’s Disease, Bechets Disease, Ileostomy Blockages, Arthritis, Sciatica and then obviously with pain and anxiety. About 3 weeks ago i found out after going to A+E with terrible pain (after finding out a few days before that i have a hernia), that i was pregnant. They thought it was an Ectopic Pregnancy and i was told to make my way to Aberdeen Maternity Hospital for an internal Ultra Sound Scan, blood tests and examination. I arrived around 11pm at night and then returned home around 5am after they confirmed it was not an Ectopic Pregnancy and i was in fact 6 weeks. They also confirmed that i was very ill with my Crohn’s Disease etc and we debated whether i was well enough to continue the pregnancy. I spoke to my GP and then i also spoke to a Gynaecologist who works at Aberdeen Health Village and we all decided that i was too poorly to continue as i was in so much pain, losing weight and being very sick and that continuing could be very risky for me as i have miscarried 3 times before hand and the risks to the baby and myself. Obviously it’s something i discussed with my partner first and then we both discussed it with my mum and she also felt that my health was to come first and that it was important to make the right decision.

Now obviously many know that my consultant and surgeon both told me i would never be able to get pregnant so this came as quite a shock for me mostly. My care has been terrible to say the least but that’s for another day as i would really like to help other women who may be in the situation i was in or who have been told they cannot get pregnant, before i go into that i would like to explain the procedure in case it is something that you may opt for one day for either the same reasons or simply because pregnancy isn’t for you. There are many choices that they give you in a booklet for Termination and it’s important to read them all before seeing a nurse or midwife etc, so that you can ask any questions when you see them and discuss the options with them to make sure it’s the best one for you. I chose the last option which is Surgical Termination;

Dilatation and evacuation (D&E)

Used from around 15 weeks of pregnancy. It involves inserting special instruments called forceps through the cervix and into the womb to remove the pregnancy.

The cervix is gently dilated for several hours or up to a day before the surgery to allow the forceps to be inserted.

D&E is carried out with conscious sedation or general anaesthetic. It normally takes about 10 to 20 minutes and you might be able to go home the same day.

I arrived for my appointment time to the ward at Aberdeen Royal Infirmary at 11:00am where i was admitted and asked the normal questions about allergies, alcohol intake, smoker or non smoker (happy to say i’ve been stopped smoking for almost 3 weeks now!) and about your next of kin. I was given a gown, some pain killers, an anti sickness melt and then the tablets that soften your womb for the operation which i had to put under my tongue. They had no horrible taste and looked like two little pentagon shaped white tablets so nothing big or scary or fowl tasting, if you suffer from sickness from bad tastes (which is reassuring for you.) The tablet takes about 20 minutes to work and whether you bleed straight away, hours later or not at all is all person dependant. For me, i didn’t bleed until between 2-5pm in the afternoon, i passed a little when i went to pass urine but only a little. The doctor then came to see me who was doing the procedure before the Anaesthetist just to confirm i was still giving my consent and that my own surgeon also wanted to come down and do some examinations and surgery if required and if i was also ok to give my consent to that too, in which i said yes and signed the form. She also explained to my mum and partner what happens in the procedure, how long it takes and the recovery and what to expect afterwards. We also decided for me to have the implant put into my arm to prevent this happening again. I have to say we really appreciated talking with her and i cannot thank her enough for being so kind and looking after me. The Anesthetist came to see me not long afterwards and she too was lovely, and continued to use the plan i had made with the pre op assessment nurse back in April for my original surgery with my surgeon, which was to kick start me to sleep with the gas before popping a cannula in to put through the General Anaesthetic.

At 5pm just before i was taken to theatre (after being wrapped up in a heated blanket as i was really cold all day and my veins weren’t coming up at all!), i went to the toilet as they asked me if i needed to go before hand and i started to pass large blood clots and bled on the floor and pretty much everywhere, but it wasn’t any more sore than a heavy period. In Theatre, the Anaesthetist popped me to sleep by the mask and got a cannula in my right wrist, which wasn’t sore at all when i woke up with it! She described my veins as “like a babies veins, so incredibly tiny!” which i expected as they have been getting worse over time with the Vasculitis (Bechet’s.) When i woke up in recovery, i was given 4 different types of antisickness through IV, pain killers and fluids which was great as i was really dehydrated from being sick the two days previous and being NBM all day. The nurses were great and explained everything to me as soon as was ‘with it’ and that the termination was successful however my surgeon had done two other surgeries in the time i was asleep and that the wound i have, had been flushed out, scraped, examined with forceps and refashioned and the same with my fistula which in his words was “absolutely huge” and he couldn’t manage to fit a seton stitch in there (A seton is a piece of surgical thread that is left in the fistula for several weeks to keep it open. This allows it to drain and helps it heal. Loose setons allow fistulas to drain, but don’t cure them.) I had a big dressing in my wound which was extremely painful i couldn’t move from the trolley to my bed, they used a slide sheet and i had to get help to the toilet. When i sat on the toilet i just passed lots of blood which was horrible and quite painful from my lady parts, but this time i did have some pelvic pain a bit worse than periods which faded after a while.

I was offered something to eat and drink but i wasn’t hungry at all so i had a cup of tea which the nurse made PERFECT, which if anyone knows me is a rare statement from me! lol. Another more senior nurse came to see me and said that my surgeon was supposed to come and speak to me about everything and the future plan but all she knew was that the fistula needed another operation at some point. He didn’t show which i expected to happen late on a friday evening, instead another surgical professional came to see me and had said that she would get day staff on Saturday morning to make sure a letter is sent to my GP for future plan and popped onto my discharge letter that if i required more pain relief that they were to give me an injection at my local (due to complications i can’t have oral strong pain relief!)

So the point of me writing about this journey i have went through?;

I want to help other women out there who have been told they cannot have children from a health professional, without having a Fertility Test first to confirm this. As if it is only told to you or someone you know verbally then it is a simple state of opinion and not fact! If you also suffer from irregular periods, that also doesn’t mean that you can’t get pregnant so please be aware of this too! This journey has been very traumatic for me and my anxiety has been terrible and physically it’s made me very, very ill. If you are reading this and you have been told you cannot get pregnant PLEASE ask for a fertility test to be 100% on this before having any physical contact with someone without contraception. I also strongly recommend that you talk to someone about a preventative if you don’t want to get pregnant or if you haven’t had a fertility test to stand by being told verbally that it isn’t possible. Talking to a GP or your nearest Sexual Health Clinic (which you can search your nearest one by clicking the link) will really help you know which one is best for you. The only option i had was the implant due to medical problems, which may be different for you! I would also like to state that any information used via links in this blog is directly from the NHS website only, which is here if you need help with searching anything medical.

I’d really like to put out there that anyone who needs advice please send me an email to alannahjaynesimpson@hotmail.co.uk if you would like to be kept anonymous and i will do my best to help you.

I really hope this can help someone from ever getting into the situation i was in and also to help people understand the importance between fact and fiction.

-Alannah.

Awareness

IBD Facebook Group Donating and Swapping items to fellow sufferers.

Hi there! I have a great Facebook Group to share with you all that could benefit those with IBD!

“Bellies Clothes Donate Or Swap” is a facebook group founded by a lady Brenda Meakin to help sufferers in the community donate or swap clothes/items they no longer want! I am a member of this amazing group and a very well known group called #GetYourBellyOut which is an online support group to help those who suffer themselves or family and friends who know of someone who suffers. This inspired Brenda to do something great out of a terrible illness, in which it makes us come together as one. There has been so many lovely items donated and we are all truly so grateful to one another having received such nice things, which make us feel great and boost our confidence! There truly is no better feeling than having a new pair of trousers to wear, as many of us simply cannot afford to buy brand new. I myself have had many nice items from members in the group and love them! I also put up items regularly into the group which has helped other members.

The group is run by Brenda and head admin, Sarah Young which works incredibly well! Hats off to these ladies for creating something so great for all of us who suffer, it takes time and patience to run a group and being online sometimes takes it out of us. IBD really has some lows but the highs are so remarkable. The generosity from each individual really shows that these illnesses really do affect the most kind hearted people. We are always looking for new members to join and anyone is welcome! Brenda and Sarah hope to have many more members join and cannot express enough how much the #GetYourBellyOut campaign has not only been an inspiration but a huge support too, in which we have all made friends for life. One thing for certain is that no matter how hard times may be, that we will always have someone at the other end of the phone or in online support groups.

To join the “Bellies Clothes Donate or Swap, please click here.

It really is the littlest things that go a long way, which make so much difference to a sufferers day!

-Alannah