Joelle- 1 Colitis- 0

Hello!!

It's 2017 and life has been pretty crazy since I last posted....

I better get the best part out of the way first. --If you follow my Joelle's World Twitter account (@worldofjoelle) then you may already know this--

So this week I received the greatest news yet since being diagnosed with Ulcerative colitis in early 2015.

Even though i haven't touched a hospital-prescribed drug in over a year, my consultant at Basildon Hospital was kind enough to still want to have me as a patient so he could monitor my condition (and probably because he wanted to know how i got on with using alternative medicines!).

When i have a blood test every 6 months or so now, the consultant looks out for my CRP levels- I'm not sure what it stands for but basically means how much inflammation i have inside/how swollen my ulcers are.
Back when things were really bad, my record high reading of inflammation was 47. That was taken almost exactly 2 years ago this month when i was taken into hospital for a second time due to a reaction to the high dose of steroids causing eruption in my esophagus, this condition soon lead to another flare up and i was back in hospital and you know the rest....

So, 47 was my worst. On the screen i could see a table of all my past blood test with all my fluctuating CRP levels, gradually coming down as months went by (the months that correlated with when i started the Chinese herbs i should add) all the way to the latest reading from my recent blood test.

I looked at the reading and i couldn't believe my eyes. My stepdad, Andy had come with me (going back to that hospital always makes me anxious) and he leant forward, squinting his eyes as if he wasn't seeing correctly.
My jaw just jumped and i remember saying out loud "what does that say?", even i was doubting myself now.

One. It just said one.

I then quickly asked what the normal, healthy person's would say.

He just replied "a healthy person's would normally be 5 or below."

My eyes started going puffy and i thought i was about to burst into floods of tears. It was then that the penny dropped for both me and Andy that my body was telling the same story as my mind. I knew i had been better for months now, but i never had the scientific evidence to prove it.

Andy lent over the side of the chair and kissed me on the head and said "we did it, we won."

I still cant believe i can actually tell people and even tell myself that i am officially in remission now. Remission. Me. I never thought it would ever end. I thought i was going to be a weirdo that got tummy aches and ran to the loo for the rest of my life.

My body has been put back to its natural balance. Peace has been restored and the war between my colon and me has been abolished. Just like Dr. Mazin said it would.

The other amazing thing to now know is that if i ever have a flare up in my life, as i'm sure i will, i know my first point of call will be Avicenna and a course of herbs will sort me right out. No nasty drugs with a side effect list as long as my arm, no waiting for weeks just to get a reply from the nurses and no more times of agony, lying in a hospital corridor screaming just because i need a painkiller (aka. Morphine)

I've said it a million times on this blog now, I want my experiences to help others as i do believe in my heart that Ulcerative Colitis can be abolished at it's early stages just with a bit of positivity and open-mindedness. There are so many young people out there who i know are scared because they have just been diagnosed and they're being told they'll have it forever and will have to take 20+ tablets a day for the rest of their lives. It doesn't have to be that way for everyone.

If you would like to check out my YouTube channel I started here's the link! https://www.youtube.com/channel/UCxSRKgpd5lGSszxPPIxNTtg

Share this blog if you know someone who has Colitis, you never know who needs a little bit of optimism in their life.

Thank you for reading xxx

20-something Weeks Later...

Hey everyone!

So it's been super-duper ages since I last posted a blog on here- for which I apologise...

I must admit one of the reasons I didn't blog for a while was due to the fact that everything was going so great health-wise, I didn't see the need to write about any specific! (Plus, being caught up with exam-season dawning on me, I've been at school for 2 hours every day after school and haven't had a chance to actually sit down and blog!)

So what's made me blog now? Well...

It has now been just over 20 weeks since I started back on the Chinese medication- even though we thought I would be done and in remission by March, like everything to do with my condition, there has been some hiccups!

So, yes, on Feb 1st, I visited Dr. Mazin at Avicenna and entered my supposed final stage of medicine...however not everything turned out as planned and the sudden change from one type of remedy to another so quickly, didn't seem to agree with the good-old family of ulcers, whom have taken up permanent accommodation in the left side of my colon. And they aren't paying for their stay to say the least! 

In fact, they were continuing to destroy their new-found premises and I was getting the stick!

So since the end of Feb I have been on two new types of herbs, which meant a big jump back from where I was. As you can imagine I was at a low point, once again. Oh, joy. 

Until 2 weeks ago I was doing good, was feeling normal. Although, I was acting too normal and made the bad Friday-night choice of ordering in a Chinese takeaway. Well, it's safe to say after finding a hair in my chow-mein and finding myself in a relapse less than 2 days later, I will not be phoning them again!

A week followed of painful tummy aches and all the other not-so-fantastic symptoms of my condition that I had gone so long without! I was straight back on the phone to Dr. Mazin who told me the amount of  Monosodium Glutamate (MSG) in the takeaway had most probably irritated my ulcers, causing the symptoms I was having. I was (and still am) really upset about how such an innocent takeaway that could've been avoided had managed to change everything.

I must say that leading up to this event I was also under a lot of stress from sixth form, so it was more than likely to have been supported by my IBS, also! It just wasn't a great week was it?! :( 

Dr. Mazin said that my medicine should be altered slightly and my doses increased, I was very upset as I had managed to get down to just one sachet of herbs a day, and he wanted me to take 3 sachets a day for the rest of the week! At first I was upset, then angry, then very low. But, after a weekend of taking 9 sachets of herbs and other herbal remedies, I found myself feeling 10 times better and my symptoms disappearing! Though not as perfect as before, I still noticed a drastic change in one weekend in comparison to the awfully painful and upsetting week I had just had.

As of today, my new altered herbs have arrived this morning, looking an awful light brown-poo colour, I am ready to embark in a new part of my recovery- who knows how long I'll be on these herbs and how the 'tenants' will react to them... I shall keep you posted on that.

After all this I do often think to myself, maybe this was just meant to happen to me. Like fate. I don't know if it's a morbid outlook on life or just a realistic one. Whilst in the bath earlier, I noticed my birthmark which sits on the left side of my tummy- I hadn't noticed it in a while. This time I saw it in a different way... It sits almost directly above where the doctors told me my ulcers are, and I thought, maybe this was just meant to happen to me.

Wow, I am actually beginning to get emotional whilst writing this bit, such a mess I am these days.

I believe everything happens for a reason, and maybe by getting this condition means I will be lucky enough to not get any other horrible-illnesses or anything for the rest of my life- though I don't want to jinx it! So, I will continue to battle this with the alternative medicine and though I get super low about it sometimes, I just need a few moments each time before I swallow another round of herbs, to tell myself that this wont last forever, because I fundamentally, refuse to let it. 

Thank you for reading.

Love Joelle xoxo

A sprinkle of fairy dust...

Just a small update..

So as you know I blogged 2 days ago about things taking a turn and having to go back a stage on the herbs...

GOOD NEWS! I have been on the new (old) stuff for 24 hours and I have noticed a significant difference and feel better already! I swear this stuff is magic potion! 

Thought I'd do a small post as I know some people were worried following my last post. 

Off for a bit of retail therapy now with mum, I shall keep you all posted! 

Thanks for reading 

Joelle xoxo 

UPDATE

Hey guys...

I have some news. As you know from my last post, from the beginning of the month I have started my third and (supposed to be) final stage of the Chinese medicine. This is called the Tonification stage, where everything is meant to be settled and put right to its natural balance. 

However, all was good until about 10 days ago..I had only been on the new herbs for a few days when I noticed my body changing. 

I didn't have any pain but I started passing blood when going to the toilet. At first I just assumed this was due to a little stress at school as I had a week with 2 Drama exams...I thought little of it. 

Since then the amount of blood has risen and colour gotten darker, like it was coming from further inside..I was petrified that this may be the ulcers beginning to flare again..

At first I was too scared to tell my parents as everyone was in such good spirits about nearly finishing my whole course, but as it got worse I didn't have a choice as it was getting me down; I was afraid it was all too good to be true and that there was no hope...

I emailed Mazin from the Avicenna clinic at the beginning of last week (15th Feb) and soon after had a phone call from him directly where he let me clearly explain what was happening...he suggested to up my doses back to 2 lots of herbal drinks a day and the other medicines. He said it could be due to the quick transition from one stage to the other...due to the excitement of coming to the end. 

He rang me every day for 3 days where I could update him directly- as I have said before at how positive he makes me feel, he assured me this was a minor hiccup and that it could be easily helped. 

Since last week we have been in contact everyday via email and he has prescribed me back to the previous course of medicine that i was taking over Christmas as that's when I felt my best! 

The new (old) herbs come tomorrow and I am hopeful that this was just a little bump in the road for my impending recovery! 

Fingers crossed for me please! I have so much to look forward to this year and the support from friends/family and you is what is keeping me sane. I know I can beat this, everything has it's push backs right? 

Remember to check out my YouTube channel where I have videos about my recovery and entertaining ones with friends and family! https://m.youtube.com/channel/UCxSRKgpd5lGSszxPPIxNTtg

Thanks for reading! 

Joelle xoxo 

aMAZINg!!

Hey guys! 

Had such an amazing day today! Went for a meeting with Dr. Mazin at the clinic in Brighton and received amazing news. I told him how well I've been coping so he assured me I had finally reached the last stage of my herbal medicine treatment and that the end is very nigh! 

I smiled the whole way through and just can't believe how far I have come with my condition- from being in a hospital bed this time last year, scared about what the future would hold, to now where I'm feeling like a normal teenager and like myself again! As I left his room I had to do a little happy dance..was just so over the moon he said I could reduce all my medicine and start to ween off the herbs! 

He told me I was an inspiration to myself and that he is so proud of how strong I have been...which if you had told me that 6 months ago I would've laughed in your face! I must admit I haven't felt strong this whole time, in fact I have had days where I didn't even want to get out of bed to face the world. Just 4 months ago I was about to go on anti-depressants as I was at a very low point, on Azathioprine alongside various other hospital-prescribed medication. I was fed up and so over the thought of having hope with the doctor's prescriptions. 

I don't know where I would be without Dr.Mazin at Avicenna and I am greatful everyday for my parents finding him online and creating my friendship with him, where I don't feel nervous about asking questions or getting upset. He has treated me like a normal human being and that's exactly what I needed to feel good again, to get my self-esteem back. I am not treated like another patient, I am treated like a teenage girl going through a horrible chronic illness where I am not patronised or given any pity.  

I am looking forward to my (hopefully) last stage of Chinese medication and I will keep you all posted!! 

Incase you don't already know, I have also started a YouTube channel where I will also be talking about my journey along with other stuff! Go check it out and let me know what you think! https://m.youtube.com/watch?v=F9GhMhoqU1A 

Thanks for reading! 

Joelle xoxo 

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! 

(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