The past eighteen weeks

Since the last time I've spoken to you, so much has happened. I've been admitted to hospital, received my GCSE results, changed consultants, moved wards, started my A Levels, fished both physio and psychology, dropped an A Level, started a different A Level and changed my drug routine all in the space of 18 weeks.

Lets start with the 'being admitted to hospital' thing. In my last blog post, I was explaining how I was being put on two weeks of Flucloxacillin, safe to say, that didn't work. I was taken to A&E at 19:45 on Thursday 28th of July. I was seen by a gynecologist at 23:00 and again at 00:50. I was in hospital for four days before they drained the cyst, not being able to move the bottom half of body due to the excruciating pain. Anyway, they drained it and I was out of hospital less than half an hour of coming round from the anesthetic.

My GCSE results weren't too bad. I got 4 C's, 4 B's and 2 A's  which was enough to get me in to the sixth form college at my local secondary school. I decided to take Art, ICT and History in the first instance but after some complications, I dropped History at school and changed it for English Literature with Oxford Home Learning. They are all so helpful and I would highly recommend them if you are looking to do distance learning.

As I am now seventeen, I am no longer classed as a pediatric. That means that my consultant team has changed and I now have m infusions on the adult ward. I get seen my Miles Parkes instead of Mary Brennan. I haven't yet had a "proper" meeting with Dr Parkes as I have previously been in transition, but hopefully, my appointment on the 2nd of December will go smoothly. The ward is very different to what I am used to. Everyone is very close together: where you would have 3 people on peds, you get 7 on adults. Very different. The staff are lovely, always rushed off of their feet, but lovely. My fist encounter was pretty terrible but I'm hoping that it works out and I don't panic every time I have to have an infusion. Another thing with adults that is different, is that you receive the drug in half the time, they used to take 2 hours but now I get it in 1 as well not having to wait around for an hour afterwards.

All in all, it's been a very strange experience. I'm praying that it all calms down soon so I can be calm and collected before my first A Level exam in ICT on the 9th of January.

I will keep you up to date when I get the chance.

A week in and out of hospital

So another week is over and I've had a physio appointment, an infusion, a psychology appointment and an unexpected visit to the doctor.

My physio appointment on Monday turned out abut different to usual. I have had some back pain over the last few years but it has gotten considerably worse since January of this year. I normally go to physio and do some exercises or go in the hospital gym but this time, I got told I have over strained he muscles on either side of my spine. As a result of this, I got a deep tissue massage and even more simple exercises.

On Tuesday when I had a regular infusion. It should have taken three and a half hours- which isn't too bad; except, I was there for EIGHT HOURS. In my opinion, that is a ridiculous amount of time. A and E patients are important but so is my infusion. There was three 'emergency' patients or before me on treatment, which resulted in me becomes very, very irritated. Apparently, there was only one doctor that could prescribe in the entire hospital which rather annoyed me. I sat there for three hours with a cannula in my arm before he (the doctor) even came to talk to me. He asked me how my bowels had been and if I had been ill in the last four days and then just walked away and I then waited another half hour to actually start the treatment.

Friday was my psychology appointment. It ran a little bit longer than expected but it was worth while. I always seem happier when I see Neena, which you may have read in a previous post. We spoke about how my exams had finished, my anxiety levels had lowered and my stress wasn't too bad anymore. All the appointments and conversations we've had over the last few months have obviously helped a lot.

My 'emergency' appointment to the local doctors surgery wasn't long but it needed to be done. Two years ago, I had a Barthalins Abscess and I felt the same discomfort as I did two years ago. I went to the doctors to have it checked out and got told that the gland inflammation had returned and I got two weeks worth of Flucloxacillin.

So all in all, it's been an exciting week. I'll catch you up on my upcoming appointments when they happen.

Fatigue

I don't think many people understand the meaning of chronic fatigue. Sure I can get a bit tired, but I'm fine to carry on with my day and the activities ahead, but other days, I can hardly manage to get out of bed. I've come to notice that my fatigue hits worse when I am highly stressed or feel really ill. My pain and lack of enthusiasm puts my days, sometimes even weeks, on hold.

There are days when the pain gets to me but I take 60mg of Codine and go on my way. Other days I have to use a walking stick, which is known by the name of Kevin in my local community. I often just grin and bare it, getting on with my 'normal' life.

What many people don't understand is how much of your time is wasted by fatigue. I, for one, believe in living every moment like it's your last as you don't know what the future has in store; however, sometimes, that's just impossible. I can ache so much at whatever time of the day and not be able to move it's so painful. I don't know why. The physio therapists believe that it might be a muscle problem that links to Crown's disease, I'm not sure of the technical terms for it, all I know is that it can bloody hurt.

My fatigue seems to come around at the most inconvenient times. For instance, I was getting ready to attend my friend's sixteen birthday party when all of a sudden I couldn't couldn't life my hand about my head to brush my hair. I hadn't had a stroke- the hospital checked! My muscles just refused to work. They had promptly crashed out on me and I couldn't show up to a really important occasion for one of my best friends. It was heartbreaking having to tell her I couldn't make it, we had been planning it together for months.

Anyway, back to the point: fatigue is a bitch.

Nobody should have to go through the agony of not having the energy to do anything. Their minds and their bodies are capable, just not at certain times of the day. It's difficult to go through, I'm still trying to manage it: with monthly hospital infusions and fortnightly physio trips, we are hopefully on the mend and my 'chronic fatigue' issue will die it's long, awaited death.

GCSEs, Crohn's and the loss of our Karla. What more can we deal with?

I've found that sitting exams is not the best way to try and keep your mind off of your illness.

GCSEs are hard at the best of times, never mind what the last three weeks has thrown at me. I've been physically ill, mentally drained and overall just under the weather. I've wanted to just pack it all up and run from everything but I knew, deep down, that wasn't the way to go around the situation.

The first week of exams wasn't as bad as I got told. I had three exams and they weren't too bad- AQA Biology wasn't the best exam that was sat, but the entire population of year 11s over the country would tell you that! The other two didn't shake my brain as much as I was expecting. The after math of the first week affected my second week pretty badly. I found that only having two days to recover isn't great for a Crohn's sufferer. I didn't want to wake up on the Monday. My body was having none of it.

To make the whole experience even better, we came back after a week off for half term to a line up of nine exams in the space of four days. On top of that, on Wednesday, we were made aware of the death of our good friend Karla due to brain cancer. We all knew the inevitable but it hit us all, the whole year, like a truck. We love her and miss her every second of everyday. Doing our exams on top of all this grief is painfully traumatizing I don't quite know how to feel about the whole situation.

Once the overall shock had settled in, I thought i was going to be alright with everything. I had my exams to focus on and tske my mind off of things but the pain kept coming back. I tried to ignore it and it just kept returning in all of it's hideous gloating. Should I want to hide it? Or should I accept the fact that this is life, and it hurts?

Neena

I saw the newest member of my team today. Neena is her name. My dad calls her 'nee naw' because he's the most juvenile person I've ever come across! She's the pediatric psychologist at Addenbrookes- well the current one anyway, she's standing in for the one on maternity leave. She's really nice and she's helping me try and see over my pile of 'what if' questions.
Over the last couple of years I've tended to ask myself a heck of a lot of questions about my future and where I want to go in life. If I'm being completely honest, I have no idea, but what I do know is, I have to chose my A Level subjects and that's confusing me as well as the exam stress from my current GCSEs.
All of these little stresses cause a major hole in my universe. The rip my mind to shreds and I have no idea how to sew it back together. There are days that I just want to scream but then I also know that I don't really have a valid reason to, people have it so much worse than me and anyway, I hate being centre of attention. I hate being judged by people who are utterly clueless and people who think you're worthless are even worse.
These are all of the things Neena and myself talk about and we're slowly but surely gathering up all of the torn fabric of my brain and sewing it together piece by tiny piece.

Inflectra

The year was 2015 and my Crohn's went tits up essentially. I was really ill and being sick almost every other day (the other end was far less pleasant) so I went for a consultant meeting. That is where the decision was made to put me on the infusion drug Infliximab in the form of Inflectra™.
I'm not going to lie, it sucks. They push this through me currently: every eight weeks but I have an extremely strong feeling that will get reduced to every six weeks. The infusion it's self is two hours but I normally end up on wars for about 5 maybe 5 and a half, depending how quick the nursing staff are to put the canula in!
I recently learnt that the hospital that I go to is one of very few places that let children use this form on infliximab which I thought was pretty awesome. The more people taking this drug, the better everyone feels... or so I thought. Inflecta isn't doing me any favours. I'm still throwing everything I eat back up, I'm still consistently tired and my sleeping pattern is utterly shot. It's gotten to the point that I sleep for an average of 10 hours every 3 days which is horrendous. (I'm a HUGE fan of sleep, so this fact is very upsetting.)
I started Inflectra in December and the first time I had it done, I physically couldn't get out if my bed. The cramps were over whelming and the headaches were out of this world. It got better the second time around but the spring in my step only lasted for 10 days and it gradually went down hill. I started going dizzy every time I stood up, I felt sick all of the time, I didn't enjoy that time of my life.
I've had the Inflectra infusion four times now and it seems to be controlling my crohn's but everything else such as: the sickening feeling, headaches, cramps and dizziness are still recurring factors in my life and I have no idea if I will every get my old life back.

IS CROHN'S RECOGNISED?-no

Did you know that people with Crohn's and/or Colitis get tired super easily? It's the same with Cancer patients, just we don't get all the publicity. Don't get me wrong, cancer is a terrible thing and I wouldn't wish it upon my word enemy, but everyone knows about cancer. Out of all of the people I've told about my Crohn's, only a handful of them had even heard of it, but if I turned around and said "hey, I have cancer" I'd have people jumping through hoops for me. But I don't. Instead I have people asking me: " why are ill?" "you don't look ill," "you're so pale, are you ok?"


I'M FINE.
I JUST HAVE A CHRONIC ILLNESS NONE OF YOU PEOPLE ARE AWARE OF. IT'S COOL.
I'M FINE.
NOT EVEN THE GOVERNMENT KNOW THE DIFFERENCE BETWEEN IBS AND IBD.
I don't usually rant about this sort of thing because illness, no matter it's form is horrific but for the three hours I've been sat here watching the TV with my dad, I've seen at least six adverts about raising money and awareness for Cancer Research and MacMillan ect. Nothing, and I mean NOTHING about any other disease. Nothing about the deaf or the blind, arthritis, liver, kidney and heart diseases. Nothing. Squat all. I under stand that cancer is killing people and most lives are on a time frame that may not be very long but other deadly diseases exist too.


I know, have known, people who lived with the awful 'C' word and a lot of those people will never be forgotten and will always be in my heart. One of my class mates is currently battling through an inoperable brain tumor and it's horrible. I wish nothing like it on anyone. We're doing all we can to keep her in the loop of things going on at school and we love her so much. It just frustrates me how everyone's energy goes in to that one illness.


I'm not trying to sound selfish, and I deeply apologise if I am; however, people with Crohn's have to live until they're 80/90 (optimum life expectancy) going in and out if hospital, on drug treatments and consultant appointments for around 80 years. Cancer patients have their tumor period and then the odd check up here and there once they are proven to be cancer free. in my opinion, it's just unfair on the patients who suffer the same amount of pain stress and boredom staring at the pale grey walls that surround them all day whilst in hospital. The same goes for every chronic illness.

ANEMIA

Okay, so from what I can remember, the moths between the second set of steroids and March were vile. I was violently sick at least three times which was strange because I was never a 'sicky' child. I was overly fatigued and couldn't find the energy if my life depended on it. So Mary decided to order me an Iron Infusion.

Turns out, I had a pretty bad case of Anemia which is caused by iron deficiency. The 10th of March was the day that I went to F3 to have my first ever infusion. The first of many I might add... It wasn't all that bad, I mean, the infusion itself only lasted half an hour and I got a day off school for it so I was happy. The infusion was this bright orange liquid and it felt rather 'gloopy' for use of a better word. I don't know if that was just me and how I reacted to it or Iron is just 'gloopy'?

While I was sat in the bed having a half hour infusion surrounded by my parents and nurses from left, right and center, I noticed a girl- roughly of a similar age to me sat on the bed in the corner by herself. I asked if she was okay trying desperately to draw the attention away from me for a while. She said a simple, "I'm fine thank you. I'm just waiting for my mum to get back". I smiled at her and nodded my head. Her mum who I later found out was call Sarah, had gone to get Chloe a coffee and a packet of crisps. She had a majorly long and tiresome day, bless her, It just so happened that she had Ulcerative Colitis and was on the ward for four hours before I even showed up. She was still on her infusion when I left the ward three hours later. It's days like that one that make me think about how ill I actually feel. I might wake up in the morning and give the day a solid NO, but I'm happy, I'm surrounded y people who love me and understand my situation and I'm not in hospital for weeks at a time like some people I know with exactly the same illness as myself.

Anyway, my infusion went well and I'm no longer anemic but I do have to take one multi-vitamin everyday and two/three tablets  of calcium with vitamin D; which, if you think about, isn't too bad. So out of a four hour trip to the hospital (including a coffee run), a pity party for the lone girl in the oppostite bed, and having a bright orange substance which could have been Iron Bru for all I know, I am anemia free a slightly more healthy as I was before, as well as slightly more understanding towards others.

CLINIC 6

Clinic was the first time I met my team. Dr Rob and Nurse Mary. The two people who I had to give my life to. My clinical nurse and my consultant. Two complete strangers that have my health resting on their shoulders. To say I was terrified is an understatement.

I know I shouldn't have been but I was only 15 and had to spill my heart out to these two doctors who I didn't know from Adam. We sat and spoke about all of my symptoms, how I was feeling myself and then we started to talk about the medication that is available for me to take to calm my situation down. The list of possible drugs is endless but due to me having Polycystic Kidney Disease, that list decreased rapidly. Turns out, there's only about six that I can take. So, that made me feel better- NOT.

To start off with, they put me on a nine week course of steroids starting at eight tablets a day for two weeks, then seven a day for the next week, weening me off them slowly. This made me gain so much weight, going from a size 10 in jeans to a 14. This lowered my self esteem by a lot. All of my friends are size 6 so me having to go up in sizes made me feel really upset and 'alone from the group' in a way. That sounds really stupid but I felt like I missed out because they would all go shopping together and talk about clothes all of the time but I would try and avoid the subject because I was just too embarrassed.

I got to the fourth week of steroids feeling a lot better and really excited that they had worked but the week after, I got really ill. I started to have stomach cramps that made me roll in to a ball and I physically couldn't straighten myself out again. It hurt so much. There are no amount of words to describe the pain.

After I finished that course of steroids the inflammation markers in my blood had gone down slightly but were still too high not to notice. Your inflammation markers are meant to be around 10-12, mine were off the carts at a major 110. Yeah, so that wasn't the best thing that's ever happened. No wonder the camera couldn't make it's way through my digestive system! However, two weeks of not eing n any medication, the clinic still weren't happy with where I was and how little progress I was making so they put me on another course of steroids just like the last set and while doing that, they started me on a drug called Azathioprine which I will have to take until they decide to drop me off of them. The Azathioprine is currently my life long remedy to not feeling as dreadful as I was back in the months of August-December 2014.

THE START

Okay. So to start off, Crohn's disease is a chronic inflammatory disease of the intestines, especially the colon and ileum. I'm lucky you see, I have this inflammation trough out the whole of the left side in my large intestine and then all through my terminal ileum. Sounds fun doesn't it!

Now that you're all caught up with what this strange disease is, I can start my story. Are we sitting comfortably?

It was August 2014. I was on holiday wit my family for a week in Yorkshire when I first started feeling really ill. Not 'sick' ill, but something else. I started sleeping for long periods of time though out the day, and for someone who slept for a maximum of 9 hours a night, was very unusual, So it had been about two days in to my holiday when I started developing a Barthalins Abscess- which made me violently sick in the end. I was put on painkillers after seeing the town's minor injuries unit and carried on with my holiday. (Which DID NOT feel like a holiday, more like a week of extreme pain and restless nights) but this by no means stopped me.

When we got home from Whitby- which is roughly a four hour journey by car, I started having respiratory issues. My lungs felt like they were getting tighter and I found it harder and more painful too breathe. Safe to say but I didn't sleep that night!

Te next morning I went to the doctors to see if they could help with the pain of my abscess, to pop it or something. Turns out, the doctor couldn't do anything so they transferred me to Hinchingbrooke Hospital as I was to been seen by the pediatric gynecology team. Don't get me wrong, all of the staff were really nice and the trainees were supportive, but IT WAS SO AWKWARD. I guess it's like talking about anything in that region of your body but for a 14 year old girl... it defiantly wasn't increasing my self confidence.

Anyway, to save you the gory story, the abscess popped on it's own and the team of hospital staff just helped all the gross stuff out of it. And to this day I haven't ad another one- Thank the lord.

So you're probably wondering why I'm talking about an abscess when I stared off about Crohn's. Well the reason is, the abscess is what started all of my symptoms. First I had the deathly cold sweats, the my temperature flew off the roof. Next came the stomach cramps, pains, aches and all of that exciting stuff, and by December of 2014 I was diagnosed with Crohn's disease after being poked and had cameras both up and down me in surgery.

Fun fact about day surgery- if you're the oldest child in the pediatric ward, you go in to surgery last because you're meant to be able t starve yourself for longer. I went in for surgery at 17:30. I had been starving myself for a month. Not purposefully of course, just whatever I ate came straight back out again, and surgery requires you to have an empty digestive system. What I'm trying to get at is, it was a really long day and I spent a good 10 hours at Addenbrookes hospital that day.

While I was in recovery, my parents got told that I had Crohn's disease. I had old scaring in my oesophagus, which is a sign of colitis, ulcers in the bottom on my stomach and so much inflammation in my large intestine that the surgeons couldn't get the camera through.

This basically meant that I got 15 years of easy life then it went down the toilet, literally! Having a chronic illness means monthly hospital appointments, infusions, new drug and medications. All of this was yet to be discovered.