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.