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 £90 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! 💜
