World Toilet Day 2017

As a Crohnie, I always feel I need to give a shout out to World Toilet Day on 19 November each year. Anyone with IBD spends a higher than average amount of their time worth their toilet. While!e at times I resent the amount of time I spend with mine, at least I have one.

More people have mobile phones than have access to a safe and clean toilet. Says a lot about the world's priorities, doesn't it? Having access to a toilet does more for the overall health of a community than just above any other public health measure.

Have a read of this interview -https://www.un.org/development/desa/undesavoice/expert-voices/2017/11#36610

The global development items mostly people in the global West talk about are drilling wells and building schools.

No one thinks about the humble toilet or where poo goes. This year's World Toilet Day theme is about where poo goes. http://www.worldtoiletday.info/where-does-our-poo-go/

If you want to know what happens when poo doesn't get treated before becoming fertiliser, read this - http://www.iflscience.com/health-and-medicine/defecting-north-korean-soldier-shot-had-large-and-unusual-parasites-in-his-gut/

English Heritage have even gotten in on it this year. They have an interesting blog post about historic toilets - http://blog.english-heritage.org.uk/top-10-toilets-through-time/?utm_campaign=coschedule&utm_source=facebook_page&utm_medium=English%20Heritage


So give some appreciation to toilets today, and think about how to support those who don't have access to one.

Happy Halloween!

I do love Halloween. I live the dark nights with decorations an the dressing up. My pumpkin is carved and I have treats for trick or treats.

My quickly-carved-after-work Jack O'Lantern

And for the 10th year running, I am sitting here eating the Halloween candy because I haven't had a single trick or treater. Boo.

The British are only just re-learning how to do this holiday.

Despite some people thinking Halloween is a cheesy American import, it isn't. https://youtu.be/Twog7XFOXnM

Alas, I have lived most of my years in the UK in a flat and currently live on a tucked away, poorly lit cul-de-sac hardly anyone knows is here. Despite my neighbours around the corner doing a smashing job with their decorations, no one brings their kids down here. Oh well. More sweets for me!

But I need to share the Halloween meme I saw today, as it is just for Chronie's. Apologies if you are not a Game of Thrones fan (or are if you are and don't find it funny,).

The caption read - 'Excretory Halloween! Intestine and Colon dressed as Cecum Lanister and Dudenoum Stormborn, Mother of Rectums, battling for the Iron Throne.'

I've been giggling about this all night! 

Brought to you by I Heart Guts - https://iheartguts.com/, purveyors of fine stuffed body parts, in case you are looking for a gift for your special someone!

Holiday Hassles

I've only just realised that I haven't managed to write a new blog post since June. Proof that life (meaning work) has been too busy lately. I've missed out on having a 'sumner lull' this year.

I didn't manage to take much of my annual leave in the first half of this year, so I am suddenly in a flurry of holidays. Not that I have loads of money for these things, but I manage to use my 6 week annual leave entitlement (seriously, I couldn't go back to the measly 2 week entitlement in Canada) by budget travelling in tents and youth hostels.

However, there is one big unspoken cost in travelling when you have chronic health problems - travel insurance. Disability charity, Scope have recently taken up this issue and are doing some awareness raising on this one. There's a great blog post about this here - https://blog.scope.org.uk/2017/08/07/i-wish-i-could-just-ring-up-an-insurance-company-and-get-a-quote-like-everybody-else/?_ga=2.160630781.1149269537.1502970678-1861989479.1502970678

When I heard about this on BBC Radio 4 a few weeks ago, it was really timely as I had spent much of July was spent trying to sort out travel insurance for myself. I opt to have an annual travel insurance plan each year, in part because it means only fapping about with this once a year, but it also gives me the flexibility to 'drop everything and go', which is needed when you live abroad. Although I don't travel in expensive ways, I do a lot of travelling in the UK to obscure locations like Shetland and the Hebrides which involve flights and ferries that could be weather delayed, and getting stuck in a storm could get very costly if I'm stuck for days. In my view, it's worth it.

The problem though, is the medical component of these plans for going abroad. Regardless of some people taking  a the chance, it's risk not worth taking -  http://www.bbc.co.uk/news/uk-39978665 The standard travel insurance offered by banks, credit cards, etc will not insure pre-existing conditions, so those of us with health problems need to go elsewhere. I'm not willing to risk travelling without declaring my health issues as statistically, it's most likely those conditions would be the reason I would end up needing to see a doctor. When I only really had asthma to deal with, it wasn't so bad. I'm a nonsmoker who has had asthma since childhood who has never been admitted to hospital for it, and what worries insurance providers is smokers with COPD trying to write that off as 'a touch of asthma'.

The Crohn's, however, has made this much more complicated. Since being diagnosed, I've managed to get insurance through a company that specialises in insuring people with pre-existing medical conditions. For 3 years, this worked fine. It wasn't cheap (£210/year in 2016), and went up ridiculously each year (as all insurance does) but they covered everything, including travel to Canada (which keeps being lumped in with the USA for insurance purposes) which is what I needed.

In July this year, I rang them for a renewal quote. I spent half an hour on the phone with the friendly customer service rep, answering a ridiculous number of personal questions about my health. 'I was diagnosed in 2013'; 'no I've not been admitted to hospital for IBD in the last 2 years'; 'no, I've not had abdominal surgery in the last 2 years for IBD'; 'yes, I'm under the care of a hospital clinic for IBD', etc. This year, the questionnaire had the question 'Are you, or have you ever been prescribed a biological treatment for your condition?'. Um, yes, that's why I've never been admitted to hospital or had surgery for Crohn's.

'Uh, the quote is £546.23 for the year' says the friendly customer service rep.

How the hell did that more than double from last year?! 'Um, you answered that you have been prescribed a biological agent'. So based on that, I will now be charged more to insure my holidays than my holiday costs because I take Humira to control the condition.

Fuck that. I politely declined to renew with that company.

Crohn's and Colitis UK publish a really helpful list of insurers who will insure people with IBD. https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/insurance-ibd

I spent the next few weeks going through their list for quotes, and managed to get a new plan with better terms for £158.82.

So the lesson here is to shop around, but it is a bloody hassle. 

The Perils of Spring

Hay fever season this year hasn't been quite as bad for me as usual. While a friend is posting pictures of her allergy arsenal and one of the young people I work with is in the throws of a nasty eczema flare-up (how I know her pain, I mean itch), here was me thinking that it hasn't been too bad so far. Until today.

#Iwanttoscratchmyeyeballsout

So to try to bring so light to this, I have found a bunch of fun memes on the subject to share. All copyright to the artists. Enjoy!

*Snicker

Oh god,this one is so horribly true from my life before hysterectomy!

I need me one of these!

Why I don't take antihistamines unless I'm having a really bad reaction to something.


And this one sums me up today

Now someone pass me my eye drops!

A Few Shares

I've come across a few bits and pieces recently that really sum up living with Crohn's and other chronic conditions that I thought I"d share with whoever reads this.

The first is a bit arty and about the experience of living with Crohn's. https://www.fastcodesign.com/3069047/the-years-best-scientific-image-a-haunting-illustration-of-crohns-disease?partner=rss

The second was a really interesting radio show from CBC's Quirks and Quarks which I occasionally listen to through the CBC Radio App. This on is on opioid use and chronic pain. It is very timely, as Canada, especially Western Canada, is dealing with really significant issues around opioid misuse, which is scaring some doctors away from prescribing opioids to those with chronic pain. As someone who is allergic to ASA and NSAIDS, I have little else I can take for moderate to severe acute and chronic pain. I'm sadly on good terms with pain between Crohn's, endometriosis and problems with my right hip and back linked to both of those. It's an interesting listen if you can get it where you are. http://www.cbc.ca/radio/quirks/pain-is-puzzling-orangutans-know-breast-is-best-diving-deep-for-sponges-1.4123416/the-puzzle-of-pain-opioids-are-killing-some-but-saving-others-1.4123458

The third is about gender and pain. As someone who has fought doctors on more than one occasion to be taken seriously, and who very much feels that my  a gender plays a big  role in why I've not been taken seriously, I know exactly what the author means- http://www.dazeddigital.com/artsandculture/article/35866/1/is-there-really-such-thing-as-a-gender-pain-gap

The fourth is an editorial about living with Crohn's which really struck home with me. If you want to know what day-to-day life can be like, this is pretty much it -http://www.thedailybeast.com/articles/2017/05/20/heres-what-no-one-tells-you-about-chronic-illness

It's World IBD Day 2017

It's that time of year again. Today is World IBD Day and I figured I should post a something about it on here for the occasion. Here's this year's infographic about IBD.

Spam!

So my not-so-frequently updated blog got spammed today. 

I had comments on 8 posts, all from the same 'person' and all saying exactly the same thing. I quote below -

'This information will help those suffering from Adenomyosis and Endometriosis, I was also a victim. I am excited to share this testimony, I was 3 years ago diagnosed of Adenomyosis and complicated Endometriosis. My medical condition was heart broken because it was causing my menstrual cramps,bloating before menstrual periods, lower abdominal pressure which result to heavy periods. I was subjected to different medications by my doctor for treatment such as Coenzyme Q10,ibuprofen, Danazol and many more. Despite my visit to several doctors my health wasn't getting better, all they could say was surgery. At the verge of giving up, I went to the internet to search for a treatment at least. But I found a cure instead. In the internet, I read a testimony of a lady who had Adenomyosis and Fibroid. She shared an e-mail address of the Doctor. Luckily everything seemed to be okay after I took the Herbal Medicine....'. 

It went on to give the email address for this, ahem, 'doctor'. 

Okay, while I talk about my experience with Endometriosis​, Adenomyosis and having a hysterectomy on my blog, I also talk about other conditions, mainly Crohn's Disease and food. In fact, that's in the name of the blog. And 6 out of the 8 comments were on posts about Crohn's.

But I do love the poor grammar ('My medical condition was heart broken') in her comment. And I love her attempt to dress up her advertisement with a personal story. But regardless, it's still just spam. 

And spam is disgusting.

So bye bye spam! You've been deleted and reported.

A Bit of Toilet Humour

Spotted at Croome, a National Trust property earlier this week -

And speaking of toilets, this is a pretty interesting article on the subject - https://www.theguardian.com/science/blog/2017/mar/23/living-and-looking-for-lavatories-why-researching-relief-is-so-relevant

A Few Notes to Random Strangers

To the various people around when I called 999 yesterday for a bloke passed out in his own vomit in a pedestrianised area of my town -

To his mates who left him there - You are a bunch of pratts for leaving him like that, but I appreciate that you at least made an attempt to put him into the recovery position so that he wouldn't choke. I'm glad to see that you appreciate the principles of harm reduction even if I think you are shitty friends for leaving him there.

To the young bloke who decided to try to lift him on to the nearby bench - Under no circumstances are you to EVER move a casualty like that unless there is an immediate threat to his safety. You also MUST listen to the qualified first aider (me!) telling you to leave him still to keep him safe. Going and getting a bunch of your mates and trying to get them to lift him onto said bench, only for him to slide right back off again was foolish and likely hurt him as he started bleeding from his mouth at this point. Thankfully when he fell and you all bolted because he started vomiting again, you left him in what can be described as an accidental recovery position. You are a bunch of twatts for not listening to me and I really should have told you to fuck off.

To the two lovely young women who offered help and checked his responsiveness and breathing and flagged down the ambulance - You are truly awesome human beings who did exactly what was needed in the moment.  I hope you have good karma for your good deeds.

To the young bloke who just stood there and stared and did nothing other than be an audience - You can just piss off. This bloke was in a rough way and you did nothing but stare. Even homeless people with substance misuse problems deserve dignity.  Staring at a man passed out in his own vomit is the opposite of that.

To the lovely 999 responder - You were amazingly calm and collected and gave your directions well.  Thank you for doing your job well and putting up with me telling off the blokes discussed above.

To the emergency responders - You have an utterly thankless job, but you still tried to treat this bloke with dignity despite him partially waking up and trying to kick you when you tried to get him on the gurney. They said this was the second call like this they had had that day, and they were only 3 hours into their shift.

To the bloke who was passed out in his vomit - You were in a rough way yesterday. I hope you are okay and that you get to a point where you are ready to sort yourself out soon. I suspect you have rather a sore head this morning.

To myself - You had a shitty day yesterday before this happened and stop beating yourself up for not intervening more strongly with those blokes and for not actually getting down on the ground to properly practise the first aid skills you have had for decades. You've dealt with these situations before, you know what you are doing, but you were right in your immuno-compromised state not to touch him or get to close to his body fluids without having gloves and a mask. Upon finding him, I was utterly overtaken with anxiety that I would pick something up from him if I touched him with bare hands, and not in a general I-don't-want-to-touch-your-vomit kind of way. I have been sick with repeated viruses all winter in part due to being on Humira, I can't afford to get anything else, and really can't afford to get anything more serious that you may have had. At least I noticed you and called you an ambulance.

My heart says that this guy needed help and I couldn't give it to you properly. I feel shitty that I wasn't down on the ground checking you more closely and being as reassuring as the woman who did. My head says you were right for knowing your limits and making yourself safe first, which is the first rule of first aid. And I really need to start carrying gloves in my handbag for these occasions.

Could You Be More Specific?

I got this letter from my GP surgery today advising to attend for an annual review of my 'condition'. Could you be more specific? Crohn's? (I'm under the care of the hospital) Asthma? (Asthma nurse discharged me from the clinic two years ago). Raynaud's? (Does that get monitored?) Endo? (I was discharged from gyane 7 years ago) My still undiagnosed problem with my back? (GP knows my osteopath and leaves it to him) Allergies? (Never been monitored) Eczema? (Ditto) Heart murmur? (Did they even remember I have one? No one else does.) Something I don't know about?! Some specifics would really help!



Is It Right ....

For a woman who has had a hysterectomy to want this t-shirt so badly?

I mean, I don't even have half of the organs in the image. But I think it's hilarious and considering the attitude of white, male American policticans toward women's reproductive health at the moment​, I think it's brilliant.

Want one? You can get it here -

http://6dollarshirts.com/girls-tees/ovaries-FU

Endo-What?

If you ever wanted to know the basics of endometriosis, this is a fantastic post on the excellent Endo Update Blog - http://endo-update.blogspot.co.uk/2017/02/endometriosis-going-back-to-basics.html

Christmas Baking Disasters 2016 Part 2, or How a Disaster Can Be Very Tasty

Sometimes your holiday baking doesn't quite work out as planned.

I came across a recipe in the Christmas Co-op magazine that I wanted to try out. It was called 'Christmas Pudding Surprise Cake', the surprise being that while it is shaped like Christmas pudding, it isn't one. I've never been a fan of traditional Christmas pudding, and it's full of things I can't eat anyway (allergic to grapes, so raisins and sultanas are out, as is the brandy it's soaked in, never mind the fibre in all of the dried fruit). I know that some people really like it, but after 9 Christmases in England, my general observation is that it is made because it is a tradition, not necessarily because anyone at the table really likes it.

Anyway, I was genuinely intrigued by this one upon reading the ingredients. I says to cook it in a 1l oven proof bowl, so I had to go hunting for a new kitchen item (oh darn!). I greased that up as directed and pre-heated the oven to 180C/350F.

The ingredients call for the following -

175g softened unsalted butter (I used Stork margarine instead)
50g glace cherries
40g 70% cocoa dark chocolate
125g self-raising flour (I used 120g plain flour and added TSP of baking powder and 1/2 TSP of salt)
1 1/2 TSP ground cinnamon (you could also use mixed spice)
15g cocoa powder
35g ground almonds
175g caster sugar
3 large eggs
Zest of one orange
2 Tbsp of orange juice
50g chopped nuts (I left these out).

I chopped the cherries as directed.



Then I melted half of the chocolate and chopped the other half into chunks.

In a big bowl, I shifted the flour, cinnamon and cocoa. I then added the ground almonds, butter and sugar. It seemed a bit backward to blend the butter and sugar into the flour rather than the other way around, but I followed the recipe as it was written.

I then mixed in the eggs, which made for a much easier batter.

As much as I am not a fan of orange chocolate, I stuck with the recipe and added the orange zest.

Then I added the orange juice and mixed that, then folded in the cherries and chopped chocolate. Then I spooned it into the prepared oven proof bowl.

Once that was done, I popped it in the oven.

It came out looking like this and the house smelt great.

After letting the bowl cool for 5 or 10 minutes, I turned it out onto a wire rack.



Oh dear .....

It's Christmas Eve and I needed this for Christmas Day, so I needed to do something to rescue this. So after carefully removing the remaining ring of cake left in the bowl and having some discussion with my trusty assistant, it was decided that there was only one solution to this problem, and it is called chocolate.

Once the cake cooled, I melted some dark baker's chocolate until almost melted, then removed it from the heat, stirring until fully melted. I added a tiny bit of sunflower oil to get a slightly more spreadable consistency. Then the spreading and gluing started.

This was a two person job and quickly got messy thanks to sticky melted chocolate and dropped utensils.

After quite a bit of work, we seemed to have it cobbled back into something vaguely resembling the shape the cake was meant to be. I left it for a bit to let the chocolate harden.

After that, it was decided that the whole thing needed to be smoothed out, so the answer to this was of course, more chocolate. The cake was very delicately moved to a plate. I melted about 100g of plain baking chocolate again and added a bit of sunflower oil to make it smoother, and poured that all over the cake. It was then moved to the fridge to let it harden.

The actual recipe calls for a white chocolate ganache to be spread over the cake to look like the traditional marzipan or brandy butter that goes on Christmas pudding. Not wanting to use double cream with lactose intolerant people at dinner (the white chocolate is bad enough), I had planned to just pour melted white chocolate over it instead. So doing as I did earlier, I melted white chocolate with a tiny bit of sunflower oil to make it smoother and poured this over the cake, adding a few extra cherries on top to decorate. This went in the fridge overnight to harden.

So now I have a cake with chocolate chunks inside, chocolate holding it together and two layers of chocolate holding it together. I can think of worse things. However, this also meant that the shell on that cake was rock hard, so it needed a rather sharp knife to cut it. But it could be done, and this was the result-

It was sooooo good! I had a lot of compliments on it and no one complained about the amount of extra chocolate. Some baking disasters can turn into very tasty surprises!