So I had a flare-up of my IBD last month so as I usually do during a flare-up I went to the doctors and they prescribed me the 6 week 30mg a day tapering dose of Prednisolone (steroids – glucocorticoids).

Week 1 – FLARE

I was still flaring and uncomfortable in week one but did not have any side effects nor did I feel better. Towards the end of week 1 I felt more hyper an slept less and less. I normally have a very small appetite but towards the end of the week it increased slightly.m

Week 2 – NO SLEEP

IBD symptoms starting to improve. Appetite has improved. I’m feeling really good! Apart from I CANT SLEEP. Some days during this week I only got a few hours a night. I felt constantly on the rush like I was having a massive adrenaline rush… Constantly.
My pupils even became huge all the time and I was always shaking and I couldn’t unwind or relax. It was like being tortured.

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Week 3 – EMOTIONAL

IBD symptoms very much better but I’m becoming increasingly agitated by the change in my personality. At this point, I got really manic and happy. And then I’d have a major mood swing and start hysterically crying for no reason and then laughing my head off. I think it may have been combined with the lack of sleep. This was a confusing week.

Week 4 – CHICKENPOX

So towards the end of week 3 I had a little rash. A few spots all over but I just thought OK it’s heat rash or just spots. But I was naive in thinking I wouldn’t get chicken pox as I am 20 years old. Baring in mind I look after babies for a living and for the past 5 weeks they’ve all been coming down one by one with the chicken pox! Chicken pox was spreading like wildfire amongst the children in my workplace! But I’ve worked in my workplace for 2 years and chicken pox has gone around plenty of times and myself nor any of my colleagues have ever caught it. Well I caught the chicken pox didn’t I!

I felt unwell on the Monday evening and I was concerned about the rash as I am on the steroid treatment so I made myself a doctors appointment for Tuesday morning. I had no idea it was chicken pox and my GP informed me I had chicken pox and I wasn’t to go to work. This led to the rest of the week spent on the sofa covered in Calamine lotion watching American Horror Story. Chicken pox is not fun 😦

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Week 5 – CHEST INFECTION

I was told I had the chicken pox on the Tuesday. Saturday morning I sent myself down to the hospital as my chest felt full of rubbish. Coughing up green stuff and that. After having to wait outside the hospital for an hour as they would not let me in the waiting room, I finally got to see a doctor. I got told well done for coming in and that I was very lucky I have come down and caught the beginnings of pneumonia early before it developed further and made me very poorly. I’m now on Amoxicillin for the next week which isn’t great but pneumonia is a killer and a very dangerous and possibly fatal complication of the chicken pox (especially in adults!)

This was a real eye opener for me on how serious steroids can be and what major effects they can have on the body. I treated steroid treatment so casually as I have taken them 3 times before and suffered no problems. Prednisolone is a very scary drug but also very effective (works brilliant for my IBD). I’m glad I had researched and read the leaflets before and during taking this medicine because before I was unaware of my susesptibility to developing infections and how serious they could become.

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Phillip the polyp

So after an ultrasound on 2 weeks ago they have discovered a fair sized polyp in my gallbladder!
A definition:
Polyp
“any growth or mass protruding from a mucous membrane. Polyps may be attached to a membrane by a thin stalk, or they may have a broad base. They are usually an overgrowth of normal tissue, but sometimes they are true tumors (masses of new tissue separate from the supporting membrane). Usually benign, they may lead to complications or eventually become malignant. They can occur wherever there is mucous membrane.”

Phillip the polyp. Hopefully he does not grow to be any bigger. I haven’t seen the doctor yet so I have no idea what to make of any of this! I wonder if any other young IBD patients have discovered a gallbladder polyp…

Trying to explain my IBD…

I’m going to try and explain my IBD but I’m still getting to grips with it all (it’s almost been 3 years and I’m still confused!)

I believe I’ve had IBD throughout most of my life. Symptoms first started getting bad at age 13 but I kept it to myself for a long time. Because I didn’t share it with anyone I got intense anxiety which probably didn’t help the IBD. After I sought help the doctors made me believe I caused the symptoms in my own head. “The mind is very powerful” they said and so on so forth being fobbed off for years…

As the years went by I struggled more and more. Some people used to think I had an eating disorder but the truth is that I don’t like or enjoy eating because it causes me pain. I am OK with this now but before when I was undiagnosed I was terrified of eating and what it was doing to my body. Also not eating terrified me. So it was hard. Being a teenager it was confusing because I had a mind that wanted to understand everything and not understanding what was happening to me was making me go crazy.

After continually bothering the doctors and being fobbed off with “period pains”, “anxiety”, “IBS”, etc. I finally got referred to a gastroenterology consultant. I went to the appointment. The doctor touched my tummy and did a few blood tests and sent me away telling me “I’m too young to have anything wrong with me.” This managed to convince me I was fine and I was being over-dramatic so from then on I just ignored the symptoms as best as I could and tried to get on with my life.

Maybe my IBD wasn’t so bad at this point but I was still suffering. I had a stomach ache every single day. I couldn’t concentrate at school. Food often made me sick and gave me pain and I had blood loss everyday. I had convinced myself that there was nothing wrong with me and that these were symptoms of stress from the other things going on in my life.

Then it all got bad a month after I turned 18… I remember getting increasingly bloated. It was not unusual for me but this was something else. It was as if someone had stuck an inflated balloon up my t-shirt. My bowels had swelled from all the inflammation. It became really hard for me to eat and I didn’t go to school so I could sleep for 20 hours a day. I was practically bed bound. I had to sleep up-right because I would awake screaming randomly with pain in my chest. This went on for months. I had such severe indigestion and heartburn.

I ended up in A&E a few times sobbing on a chair waiting to be seen with my exhausted mum who was woken by me every night. I was always sent away from A&E for being “stable”. One night in A&E a doctor examined me and he said “I think I know what you need. You need an investigation for Inflammatory Bowel Disease. But we can’t do it here as long as your blood pressure and heart rate is OK you’re not severe enough to be treated in A&E and need to see your GP.”

Like I hadn’t already tried that.

So back I go to the GP and he discovers my bowel obstruction… Finally it’s not in my head! We tried every medication we could and nothing worked. I endured a few weeks of agony and sickness and eventually it worked itself out. And I had my referal to Gastroenterology…!

I knew IBD was a possibility but I never thought I’d actually have it. I have heard about it from people and online/in the paper and felt so sorry for people suffering with what sounding like such an awful illness. I still do 💗. First up I had my camera test under sedation. Not fun but needs must. (Don’t worry it’s 2015 and I’m now a pro.) I remember being high as a kite but watching my insides on the screen and hearing the doctors talk to each other. I asked “is that me! Is there something wrong with me?” A nurse replied, “Yes but we’ll explain to you when you’ve come round!” I laughed – the drugs.

I laid on my bed coming round from the sensation. I would of been going home shortly but had to stick round a few more hours because I went quiet, closed my eyes and my blood pressure dropped dangerously. It just felt like going to sleep! A nurse came round and gave me a sheet explaining my results. I had biopsies taken of my insides to be sent away for testing but they revealed what they found. They found proctitis, inflammation and ulceration of the large bowel and an area called the ileum in my small bowel. I felt a massive relief! I was diagnosed with Indeterminate Colitis … Which means my guts are inflamed but they’re not sure whether Ulcerative Colitis or Crohn’s Disease is to blame… But the culprit should reveal itself over time.

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Then came the treatments. I tried everything I was offered at first! I got some weird rashes and everything I seemed to take made my symptoms worse… Especially the bleeding. Nothing made me better the only thing that didn’t make me worse was Asacol (mesalazine). I tried 2.4grams a day which is 6 tablets. This did nothing so went up to 12 tablets/4.8grams. I tried this for probably 2 moths but I just wasn’t happy and didn’t see any improvement. I think my nurse was a bit disappointed that it wasn’t working and so was I. I was trying to finish my A-Levels and figuring out what I wanted to do with my future but the IBD was making it stressful.

My nurse and consultant decided I give steroids a go. Prednisolone. Prednisolone has some nasty side-effects but is also a life saver. I have a love-hate relationship with Prednisolone. Whilst I hate the side-effects, I knew there is a light at the end of the six-week tunnel… Remission. My past 3 steroid courses have put my relapse into remission and I am currently on my 4 round in almost 3 years – which I think is pretty good going. I will write another post all about my adventures with Prednisolone.

After being diagnosed in Spring 2013 I managed to get my first job in July 2013. The job is full-time and the first few months were hard adjusting and visiting the doctors when I could and even A&E in the evenings after work to manage my disease as best as I could. I’ve had a lot of ups and downs trying to manage IBD and a job but over 2 years later I am still working in my first ever job full time and about to start my Degree with the Open University.

Bambi x

Get to know me

a little bit about myself…

Info

Name: Amber

Age: 20

Gender: Female.

A Selfie

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Favorites:

Food: I like sweet potato. I tend to eat plain and bland because of my IBD.

Drink: Water 😍

Book: the only books I read are to children so … Guess how much I love you!

Song: Rhiannon by Fleetwood Mac

Movie: Studio Ghibli’s Spirited Away

Band: Fleetwood Mac

Solo Artist: Kanye West 🙈 sorry not sorry

Place: Bed. Cancun is good too.
Subject: oh good Lordy. I probably enjoyed music performance the most.

Sport: figure skating!

Male actor: Joseph Gordon-Levitt

Female actor: Jessica Lange!

Life:

Schooling: I attended Jupiter Drive School until age 11 (decent) and then Astley Cooper School until age 18. (Shithole)

BF: I don’t have a single best friend I have a few good friends and that’s all I need.

Religion: I don’t identify with a religion but I agree with many Christian morals.

Tattoos: a hummingbird and lily flower on my stomach and a lotus flower on my upper back.

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Piercings: I have my ears pierced 3 times each in both lobes and my right helix, tragus and conch. But I haven’t worn any ear jewellery since my mid-teens.

I have my left nipple and my belly button pierced and always wear these piercings.

Languages: Just English

Reason behind your blog’s name: my disease + my nickname

Why you blog: to share my experiences with IBD and reach out to other fighters

First post … About me

My name is Amber and I am 20 years old from Hertfordshire in the United Kingdom. I will be 21 in less than 2 months… I was diagnosed with Inflammatory Bowel Disease when I was 18 years old! My past isn’t so much Bowel Disease related and most of my back story is dealing with a neurological condition so I’ll just explain a bit of that first…

I had a good childhood. I was relatively healthy as a child. I had some stomach complaints as a toddler but my mum put this down to me being a fussy eater. Throughout my childhood and teenage years I was very skinny and scrawny. I was often ill with colds and sickness bugs and my hair was very thin. I was made fun of in primary school for my thin figure but this never bothered me as when everyone got into their teenage years they wanted to be skinny like me. I felt guilty that people were envious of my figure – I still do now sometimes!

I had some other issues as a teen including scoliosis and dystonia.

Scoliosis –

“Scoliosis is the abnormal twisting and curvature of the spine.
It is usually first noticed by a change in appearance of the back.”

Scoliosis

I was diagnosed with scoliosis at about age 15 (it’s hard for me to remember now … Thanks Prednisolone!) I was treated at the Royal National Orthopaedic Hospital in Stanmore, London.

I was a figure skater as a young child until my early teens. My posture was changing and when I was performing my coach noticed I slouched to one side. I hated this but no matter how hard I tried I couldn’t stand up straight. I was so self conscious about my posture and being really skinny it was really obvious. Although nobody realised I had scoliosis… Until I got back pain.

I went to the GP having back pain thinking I had just strained something or had a bad bladder infection. I wasn’t worried. I was confused when my doctor asked me to take my top off and bend over. I could never bend far and was miles away from touching my toes. My GP saw it straight away and sat me down and told me and my mum. My mum got upset and said she felt so guilty for not noticing but I wasn’t too bothered because I could think of much worse things I could have wrong with me.

My scoliosis story is a 1 in 3 million story. Doctors believe I suffered from the very common condition IDIOPATHIC SCOLIOSIS. This was until it was later discovered I had the neurological condition…

Dopa-Responsive Dystonia –

Ok, so Dopa-Responsive Dystonia is a bit confusing to understand. Basically, back when I was going to the hospital for my scoliosis check-ups and x-rays the doctor noticed my muscles didn’t function normally. He did the little reflex test with the hammer and  discovered I had abnormal reflexes (hyperreflexia – which means exaggerated reflexes). This is a big give away that someone has something going wrong in their brain. If this doctor hadn’t of noticed this I would of gone ahead with a spinal fusion surgery I didn’t need, be in pain for the rest of my life and possibly a wheelchair.

Let me TRY and explain Dopa-responsive Dystonia (DRD)…

DRD is very similar to Parkinson’s disease in terms of what is going on in the brain. Patients with DRD do not produce the essential brain chemical Dopamine properly.

“Dopa-responsive dystonia is a disorder that involves involuntary muscle contractions, tremors, and other uncontrolled movements (dystonia). The features of this condition range from mild to severe. This form of dystonia is called dopa-responsive dystonia because the signs and symptoms typically improve with sustained use of a medication known as L-Dopa.”

Long story short … Physiotherapy and a drug therapy changed my life! (Thank you RNOH Stanmore, UCL NHS, NHNN Queens Square and Levodopa-Carbidopa!)

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It is now 2015 and my spine is still going strong. I have my bad days and when I am tired my posture sucks a little but we’re doing ok.

Without the treatment I got I’d never be doing the things I’m doing today like working full-time with children and driving a car!