Thursday 21 January 2016

Birthday Booze

Hey guys! 

One whole week being 18! Never imagined actually being this age, and looking back at everything I have been through I never thought I could have a better time than I'm having now with my health. 

For starters, I could enjoy a massive Cantonese meal out with my friends and family last Thursday evening...I ate my whole body weight in food that just 3 months ago I daren't go near! 

I had the biggest cake and enjoyed several slices; not to mention the amount of alcohol I consumed over the weekend after hitting two clubs in a row on the Friday and Saturday! 
If I had drunk that much and still been on the Azathioprine then I would probably have tonsillitis right now and be completely bed-bound. But as my immune system is getting back together finally, and I am still taking the Chinese medicine, I have not suffered at all! I mean, I've got a minor cold but hadn't everyone atm with this weather! 

I have had an amazing 18th birthday and can't thank my friends and family enough! 


Bring on the rest of 2016!! 


Love Joelle xoxo

P.s. I'm thinking of starting a YouTube channel about me and my recovery..let me know what you think! 

Tuesday 12 January 2016

(Don't) Go West! (Part 2)

Hiya,

Carrying on from my last post...

 In September 2015 i had hit rock bottom (again). I had finished my well over-due course of steriods and i was just taking a couple Mezavant pills a day and iron tablets to sort out my on-going anemia.

Although i was feeling crap all the time, i thought my colitis was sort of under control; i hadn't had much pain and to be honest i was trying to not think about it if anything, especially as i was starting back at school and was actually looking forward to trying to have a normal school year and attempting to do really well in my A2 exams.

I had a check-up appointment with my consultant at Basildon Hospital where i told him even though i didnt feel 100% it was definietly an improvement from before, however, when i told him i was still sufereing from mild tummy pains and consistent blood he told me "you have no choice but to go BACK on steriods as if i don't i WILL be in hopsital for a third time this year, as my body was still suffering and the Mezvant wasn't going to hold out much longer."
As you can imagine i was distrought by this comment, i broke down and told him i couldnt bear another steriods course, espeically as i was already told i wouldnt be allowed a third steriod course as it would be too dangerous- my immune system was already next to non-existent and i just couldnt cope with more depression, anxiety and weight gain.

He told me the only other option before surgery would be to take a new drug called Azathioprine. Another immune-surpressant that has a list as long as my arm of side effects which included Limphoma and skin cancer- whilst taking i wouldnt be allowed in sun light hardly at all.
I came away with my prescription and i was reluctant to start the course (which could have me on it for the next 3-5 years, with only a small chance of it actually putting me into remission.)

I felt like i had no other choice unless i went through with an ileostomy which would leave me with a bag for 7 months- something i couldn't bear the thought of during my 18th year with a girls summer holiday booked where i would have to stay in the shade, not drink and have a bag hanging off my body. It wasn't an option.

After taking the Azathioprine for 12 weeks i experienced NO change whatsoever, if anything it made things worse, but i wont go into too many grim details!

Azathiprine surpressed my immune system so much more that i was getting severe colds and tonsilitus out breaks almost every other week, which the antibiotics for upset my tummy and i would have more time off school- so much for getting my head down at school and getting good grades! 

 Long story short, i was suffering, a lot. Again.

One day in late November i was crying on the sofa to my mum, hardly able to talk with such swollen tonsils asking her is there anything else i can try instead without having the surgery.

This is when things got interesting...

At the beginning of the year whilst researching alternative medicines to help to put me into remission we came across Doctor Mazin Al-Khafaji, a leading doctor in Chinese Medicine who has a clinic in Brighton. We visited him in March and with his upmost faith in being able to put me into a long-term remission from his years of experience in helping people with the same condition as me, i started a course of chinese medicine where i noticed changes very quickly. However, as i was admitted back into hopsital with dehydration in March, i was unable to continue the course and sort of forgot about it for 6 months.

I said to my mum "please can i try the chinese medicine again, it is my only hope now?"

With a lot of talking and discussing whether we should go down this expensive, yet possibly life-changing route, my mum took me back to Doctor Mazin where i told him all about what had been going on since i last saw him. When i told him i was on Azathioprine he shook his head and told me this is not the way to go and he has had patients in the same positions that had suffered terrible, almost fatal side effects from this drug and i could tell (though he couldn't legally tell me to stop the prescription) that it wasn't going to help me.

He took my hand and told me this can all be a thing of the past if i just take a 3 month course with his medicine, that he has a 90% sucess rate and cannot stand seeing me in so much pain any longer.

So, since December i have been taking Chinese herbal drinks, tablets and other things that he prescribed me. I chose to stop the Azathioprine once and for all.

I have never felt better.

My immune system is almost up and running again. I havent had a tummy ache in weeks nor have i bled or felt weak and suffered depressing mood swings or feelings. I have been told by my friends and family that i am back to my normal self; bubbly, happy and full of energy, and i really do feel it. I have been eating what i want, doing what i want, and not worrying about the consequences!

I have been keeping in contact with Doctor Mazin as he is one of the most supportive, positive and passionate people i have ever met and i trust him now with my well-being and life entirely.

Of course i am not cured, we all know there isnt a cure, but i feel as if i'm getting into a remission and i am so glad i thought of contacting him again, i don't know where i would be now if i hadn't.

I know Chinese medicine is a controversial topic, and not everyone has success with it, or just doesn't believe in it enough to try it but i swear i am i different person since i have been taking it.
I would strongly suggest anyone suffering with Ulcerative Colitis to look into alternative medicines, because sometimes Western medicine just doesnt get it right, and i hate to read online about others suffering and going through the mill with all this NHS prescribed stuff that at the end of the day is likely to just result in surgery. IT IS NOT ALWAYS THE ANSWER. Do research and realise the potential of these other methods.

I will continue to do my 3 month course with Doctor Mazin and am so positive that when my course is over in a month or so's time that i will be in a full remission i can put 2015 behind me. 

If you have any questions please ask me, i feel i have to spread the word about this as i mean it when i say that Western medicine isn't always the be all and end all to this horrible condition.


Thanks for reading! 
Joelle xoxo


Thursday 7 January 2016

Water, drugs, and a really hairy face (Part 1)

Hey everyone,

I think it's time to have another post about my journey and what 2015 was like for me! 
After a bad start last January and finally getting diagnosed with left-sided Ulcerative Colitis I was put on all sorts of medication by the hospital so 'treat' the condition...I was told that there was so no cure as of yet but there were steps we could take to get into a remission (and hopefully stay there!) 

So the first (evil) drug I was put on was prednisone steroids...I had to take 6 tablets a day (30mg). Ideally, a person of my age should only be on this high a dose for a few months at a push, however, the hospital kept me on them for 6 months, at some point putting me up to 8 tablets a day! 
It seemed whenever I emailed the nurses saying I still feel crap they just replied "oh, just increase your steroids then"..naively I did whatever they said and ended up on 40mg every day...I got so podgy and hairy I felt like a boy! Hardly left the house, didn't go to school and couldn't stop the want to eat!! It was such a horrific time and I hated my body and everything about what the steroids were doing to me but I was given no alternative and so was taking them until July 2015. 

During the 6 months I was on the steroids I developed an infection in my oesophagus (whoopie!) because I stopped taking my Lanzaprasole tablets as I was not told that I needed to take them with the steroids...just thought they were stopping me vomit after every meal. So when I ran out I didn't get a chance to get a new prescription, so within the week of not taking them I developed this infection. Basically my oesophagus was heavily infected with bacteria and other rubbish where every time I ate, before it even got to my stomach it was just being through back up again. This horrible ordeal lasted about 3 days where I actually lasted 3 days with no food nor water due to not being able to hold anything down! 

So, of course, I ended up back in A&E (for the 5th time) with severe dehydration where I was on a drip of fluids for 96 hours straight! This amount of upset and stress caused me to have a flare up whilst admitted...surprise surprise! 
Once rehydrated, I spent a further week in hospital treating my flare up where I missed some of my AS exams which i was really annoyed about as I had revised so much and the doctors discharged me an hour after my exam but made me wait 3 hours more for my medicine to take home! 

Off I went home, exhausted from spending a second time in 3 months in hospital..back on steroids and other medicines and it all seemed like i just went back to square one...



I'll finish this blog in another post as don't want to exhaust you with massive posts!!! 

Thanks for reading! 
(and your gonna wanna know what happens next!) 

Joelle xoxo