Crohn’s disease – Part 1

3 Nov

Hello everyone,
Today I am gonna be writing the first in a series about something a little more personal than normal – my Crohn’s disease. Maybe the best place to start would be how I was diagnosed.
Around last December, I started suffering from fatigue. It progressed until I was coming in from school, crashing on the sofa and sleeping. This fatigue had a rather profound effect on my schoolwork. Report grades started slipping etc. At first, everyone thought I was just being lazy. I didn’t know what was happening, so I decided I was going to get to the root of the problem.
I booked an appointment with our local GP for around February. I told her all about the fatigue. She send me for some blood tests. I came back as anaemic. At first, because it was the most likely cause, I was prescribed an iron supplement (ferrous fumarate, for those of you interested). More blood tests to check if it was iron deficiency. Next day, I could start taking them. I actually started to feel a little bit better (placebo effect!) but then received the results. It wasn’t iron deficiency. So, I stopped taking the iron. (It had horrible side effects!) More blood tests to see if I had a thalassemia trait (unlikely, I don’t have anyone Mediterranean in my family). They came back as negative. Still no explanation for the symptoms.
Half term came along and I actually started to feel better. I thought everything was over. School started again and it was apparent that it wasn’t. The symptoms came back with a vengeance. I also started noticing joint pains. This made my dad consider the possibility of IBD, especially given my bowels as a baby and more recently. I booked another appointment with the GP. She said that IBD was fairly rare and we should test for that later. I still didn’t know what was going on. I booked another appointment for a couple of weeks later to ask for a referral to a gastroenterologist. She said she’d discuss it with her colleagues.*
About a week later, at around 10:30pm, I started suffering from excruciating abdominal pain. We waited to see if it would subside, but at about 12am we decided I should go to hospital. Then our electricity failed. An hour later, I was finally taken.
First off, I saw the out-of-hours GP. She was convinced it was nothing and wanted to rule out appendicitis. However, she decided to send me home. I told her how I’d been visiting my GP for months to no avail. She tried to get hold of the Paeds surgical SHO. No answer. She left a message. Back to Paeds A&E with the assessment in hand. We took it to the nurse about 10 mins later when nothing had happened and I noticed a sign saying “Take all forms to the nurse” or something along those lines. I was taken to a cubicle.
The Paeds SHO arrived and Dad voiced his concerns that it might be IBD. I said how I’d been going to the GP for a while to no avail. After explaining the symptoms, she agreed that it was quite probably some form of IBD. I had some blood tests done at about 4am, after a sleep. I was then taken to Paeds South, the surgical ward (in case it was something surgical like appendicitis), where I waited. I was seen by a number of other doctors and sent for an ultrasound of my bowel. After this showed thickening of the terminal ileum it was decided that I should be moved to the non surgical ward in the children’s hospital. I waited some more and Mum came in to visit.
After waiting some more, I finally got seen by one of the paediatric gastroenterologists. He explained that they thought I might have Crohn’s disease. It was more than a little hard to take in at the time. Being diagnosed with a lifelong illness like Crohn’s is something I wouldn’t wish on my worst enemy. Anyway, I was given a can of Modulen IBD (disgusting stuff unflavoured) and was on my way.
I had some more tests such as a white cell scan, barium meal and follow through (odd after effects…) and finally a colonoscopy. The prep for a colonoscopy is hell. I also took the option of having it under general anaesthetic (my second time with propofol!) which my other gastroenterologist said was the best option afterwards. What was meant to take something like half an hour took closer to 2 hours. I have very oddly shaped intestines!
In the next installment of ‘Crohn’s disease’ I shall talk about what happened after I was diagnosed.
Goodbye for now.

*a week or so after my diagnosis, we got a referral letter in the post.

iPad!

31 Oct

Hello all!
Just doing a sample blogpost from my new iPad!
It’s absolutely awesome!
That is all.

Small update on Bleachgate

20 Oct

Hello all!

As I mentioned in an earlier blogpost, Councillor Woodman promised to write a letter to the Chief Medical Officer for Wales, Dr Tony Jewell.

Today I received a copy of the reply.

First – the FSA have concluded that MMS is injurious to health and deemed it unsafe under Article 14 of Regulation (EC) No. 178/2002. This article sets the general principles and requirements of food law. Sodium chlorite also isn’t ‘on the permitted list of minerals as set out in the annex to Food Supplements Directive 2002/46/EC’. This means that it is not a permitted food supplement.

The next paragraph basically reiterates that MMS is not on sale here in Wales and that the FSA are identifying MMS sellers in the UK and reporting them and dealing with them.

Finally, the most exciting paragraph which I shall directly quote.

You should also be aware that MMS has also now been the subject of an international alert by the World Health Organisation (WHO). They are encouraging national authorities to take necessary steps to protect the public from harm associated with this product.

Wow. The World Health Organisation, baby.

News from Trading Standards on Bleachgate…

11 Oct

Hello all,

At home today, because I’m feeling sick and have a sore throat.

However, I have received a letter from Cardiff Trading Standards today about Miracle Mineral Solution. This, I guess, is the response to my council meeting public question where I asked to know what they were doing about it!

First off, it was due to my initial Trading Standards complaint that the FSA acted. Cardiff Trading Standards referred the matter to the FSA, who as we know, released a warning here.

Now, here’s for the very exciting news…

The FSA have advised me further that they have notified the European Commission so that the product may be withdrawn across the European Authority.

This is excellent! Also, some news that the FSA are advising local authorities

…of any websites in their area selling MMS so that enforcement action can be taken.

For those who wrote to Southwark Trading Standards and heard back from them that they were already dealing with it and already knew about MMS Health, now you know why!

Also, some more information regarding the very first complaint I made to Devon Trading Standards about MMS Europe. Yes, the website run by one Christian Pankhurst. Rather unsurprisingly

…the address on the website does not appear to be accurate…

Devon Trading Standards have since referred it onto East Cheshire Trading Standards, as that’s the area where it is believed Pankhurst ‘resides’.

Also, Cardiffians, good news! It appears that there are no MMS sellers here in Cardiff.  Hurray! Even so…

…we are in the process of checking premises…

They’re really taking it seriously, which is good. The more action taken on the sellers of MMS, the better. Thanks again to everyone who has helped! Now, lets wait for (even more of) the fall out…

P.S. You can listen to my interview on RI Podcast here. They also managed to get the man himself, Jim Humble for an interview here. Well worth a listen. Very enlightening. You can also read Marsh’s thoughts on Jim here.

Bleachgate: More on MMS in the UK

1 Oct

Hello again all!

Well, I’ve been rather busy over the past week. A lot has happened since I last blogged.

Last Thursday, I went and listened to the response to my public question to Cardiff Council about Trading Standards and MMS. Thank you to @JohnLDixon for all the help with doing this. The response was brilliant. Basically, Trading Standards in Cardiff ARE still looking into my complaint. They’re “not avoiding any responsibilities”. I was told the problem needs to be tackled nationally. The deputy leader of Cardiff Council, Ms Judith Woodman, who responded to my question, also promised to write to the chief medical officer in Wales about it. The South Wales Echo came to meet me beforehand, did an interview with me and took a lot of photos. The article can be found here!

Then… On Friday, the 24th September, Bleachgate went official.

The Food Standards Agency released a warning about it, in a similar vein to the FDA’s announcement. This was picked up by the BBC and various other websites.

On Monday, I was sitting in my physics lesson when the Ms. Humphreys from the school office came in and said to me that Radio 4 wanted to do an interview. I agreed and this is the result… http://www.bbc.co.uk/i/txzlq/

The rest of the day went by almost normally, until my chemistry lesson in the afternoon. My school principal, Mr. Dorey, was waiting outside. He pointed towards me and said “Don’t think you’re getting away with it that easily!” I was confused and thought I was in trouble, until he congratulated me on my Radio 4 appearance. He then told me that the day was going to get even more surreal, as BBC Radio Wales had contacted him and wanted to do an interview with me. They wanted to do a live interview at 5:30, but unfortunately, I had other plans for after school – another newspaper article in the Echo, more on that in a minute – so wasn’t able to do a live interview. However, the host of “Good Evening Wales”, Adrian Masters, came to my school and interviewed me. Since the program is quite long (2 hours), you might want to skip to the relevant bits. The first interview with me is at roughly 17 minutes. The next part about Bleachgate is an interview with the FSA which confirms once and for all that Miracle Mineral Solution is illegal. This comes roughly at 1 hour 16 minutes.

All this publicity is excellent. Thanks to all who signed up to the Google spreadsheet to complain about MMS Health and various other MMS peddlers to Trading Standards. As it happens, they are already investigating… er… ALL MMS sellers in the UK due to the FSA complaining to a number of the relevant Trading Standards bodies.

I mentioned earlier about another newspaper article in the South Wales Echo. They were meant to come and do an interview and photos on Monday of this week, but due to a last minute meeting, were unable to come. However, they will be coming and doing the interview on Tuesday, so all is not lost. Follow me on Twitter @rhysmorgan and I’ll let you all know when it’ll be in and if the article is available online or not.

Thanks for the help. Without your retweets about the blog and the video, this could have just been pushed under the carpet.

– Rhys

Not a Doctor

23 Sep

Not a doctor

Do the same and link back if you get what I’m doing Winking smile

More Bleachgate!

19 Sep

Hello everyone!

So, since the last post on Bleachgate, a number of exciting developments have happened…

Firstly, I’ve been invited to speak at a couple of conferences. More on this closer to the time… I’m also going to be on a radio program, Pythagoras’ Trousers, soon. You can get this in podcast format here.

Also, I went back to school. Mum and Dad told my school principle about Bleachgate, who was very impressed! Smile with tongue out I got a mention in school assembly on Friday, which was pretty cool. My school have also contacted a local newspaper and are going to put out a press release sometime this week.

That, however, came after an article on The Guardian website on Wednesday, by Martin Robbins (@mjrobbins)

You can find it here: Miracle Mineral Solution

He’s told me that he’ll be following it up tomorrow, so keep tuned.

Also, something incredible has happened…

Jim Humble claimed he took his product to Africa, which is where he did the majority of his “research”. As a direct result of the story making The Guardian website, an African newspaper, The Daily Nation reported here and here about the danger Miracle Mineral Solution poses to citizens. This is brilliant news and really demonstrates how news can spread to the people who need it the most.

Thank you to everyone who helped spread this story. You are incredible and have been instrumental in getting this story to those who really need it.

– Rhys