Wednesday, 18 January 2017

Foods to combat fatigue | Desperate times - desperate measures

For me, living with IBD means that I’m frequently left feeling as though I am not doing enough to help myself… Like, everything feels so hard a lot of the time because I am doing something wrong.

Friends and family tell you
“Get more sleep”
and they truly believe that if I tried harder to get more sleep, I wouldn't feel so tired all of the time.

Of course! Didn’t think of that -.-
This is fatigue; it matters not whether I sleep for 30 minutes or 10 hours! Every day in the early afternoon I am ready to go back to sleep, lacking in concentration, lacking in patience and lacking in, well, pretty much… WILL TO LIVE.

They tell you
“If you ate differently then you’d have more energy to get through the day.”

I do as I have been told to do by the professionals; I eat little and often, as one should with a jpouch. Sure, I have days when I eat nothing but junk, but junk works for my body. It processes better and it usually gives me the extra 5mg of salt my body needs per day compared to a regular (by regular I mean ‘owner of a colon’) person.

The medical professionals tell me
“If you worked less hours then you would be happier. You wouldn’t feel as stressed and you wouldn’t have to feel as though you’re battling through every afternoon, therefore flaring less and feel generally better.”

That may well be the case, but how much happier would I be on payday when my wage doesn’t cover the bills? Huh, Phillis?

I usually shrug these off, but after months of feeling the strain of fatigue kicking my ass, constantly thinking that I REALLY cannot feel worse than this, and then being proved wrong, I figured ‘What the hell, it’s not going to do me any harm to try a different diet. Maybe, it will improve my energy levels and help beat the fatigue a little.’

These are desperate times, and they call for desperate measures! So I do what anyone looking for high energy foods would do, I ask Google. I make a shopping list of the most frequently listed from about 11 different websites and I set about my new diet. Feeling positive! 

Every morning I make a smoothie from bananas and oats and natural yoghurt and honey, even my wraps are seedy and good for me (and I hate them). 

A lot of salmon, egg, avocado, cottage cheese and spinach later (3 weeks to be precise) and I have to say, I feel… the same. Just as tired, just as shitty and just as grumpy.

Buuuut, I feel good that I tried to help myself, and also a little gutted because I had hoped for even just a little more ‘get up and go’. Now the high energy foods have got up and gone and I have resigned myself to the fact that, this is me. A slightly grumpier version of me than I have become accustomed to, but the only version of me that I have right now.

Monday, 16 January 2017

Dear Aloe Vera rep | open letter to those targeting Crohn's & Colitis sufferers

Dear Aloe Vera rep, 

I am aware that not ALL of you try to market Aloe Vera to us Crohn’s and Colitis sufferers as a cure, but SOME DO and this is partially why Aloe Vera sales people have a bad reputation within the IBD community. There is currently NO CURE for Inflammatory Bowel Disease.  

Inflammatory Bowel Diseases are notoriously difficult to treat and are renowned for being diseases for which there is no ‘one size fits all’ medication option. That is why there are so many on the market and that is why so many of us have been to hell and back, fighting through flares and allergic reactions to medications and often ended up needing surgery at the end of this battle anyway. So in short, what works for one may not work for another and vice versa and it should be personal choice whether we want to try Aloe Vera as an alternative. You do not need to approach us, we are FULLY aware that you exist, and should we want you, we will come to you.  

It is frustrating and annoying to see reps preying on those desperate and sick to sell their products. There will be times, usually more than once, in most IBD sufferer’s lives that they WILL become desperate and completely overwhelmed by the constant agony and discomfort that they are willing to grab at any chance of feeling better. There are also those newly diagnosed that haven’t even had the chance to get their head around the disease they’re dealing with, before a ‘cure’ is being dangled in front of them like a golden carrot to a donkey. 

It is also a common trait amongst Aloe Vera sales reps to be far too pushy. If we say no, we mean no. No, we really don’t want any more information, and no we really don’t need to see feedback from other sufferer’s that have tried it. No, it really doesn’t matter whether the negative feedback was about a different brand to yours, we don’t want it from: Forever living, Versatile Aloe Vera, Aloe Pura, Pro-Vera, Aloe-Vera-Boutique, Simplee Aloe drinks OR *takes breath* Alodia! Don’t think that because your brand wasn’t mentioned that there’s still a possibility of a way in – there isn’t! No, it doesn’t matter whether we were told about the juice or the gel or the capsule, and finally, NO WE DO NOT WANT A SAMPLE! 
Another issue is that we do not want our privacy invaded with your sales pitch. Joining a group for sufferer's and sending messages privately to people with the notion that you “just want to help”, is rude and invasive and completely unwanted. Yes, we are aware that Aloe Vera has anti-inflammatory properties, as does Ginger, Turmeric, Cinnamon and so on. Are YOU aware of the laxative effects of Aloe Vera that are not only unnecessary for many IBD sufferers, but completely undesirable? 

Many reps go on to say that they would be interested in hearing this negative feedback from IBD sufferers, because of course, they have never received any. 

I have taken the liberty of collating some of the negative feedback from members of the IBD community (from the #IBDSuperHeroes group and social media), that have previously tried Aloe Vera products from multiple suppliers, and in various forms. Please see below.  

“Put me in hospital, made me so ill. Also the unethical tactics seller go to is nothing short of evil. They prey on the sick and tell lies that it will cure. 
If it really worked it would be available on the NHS as its far cheaper that the thousands of pounds worth of drugs I currently take.” 
Candace Mantle, #IBDSuperHeroes group 

“It made the inflammation in my intestines worse.....” 
“I imagine piss to taste better....it was foul..” 
“The cranberry one made me vomit.....the normal stuff gave me foul smelling diarrhoea and hospitalised me for a week.” 
Ben Freeman, #IBDSuperHeroes group 

“I drank it, it came straight back up like chunky spew” 
Robyn-jade Bowden, #IBDSuperHeroes group 

“Tell him if he wasn't aware that aloe Vera contains aloe latex which is a fucking laxative and can he fuck off pls” 
Yasmin Kelly, #IBDSuperHeroes group 

“Tasted like shit so didn't bother” 
Jeff Blackie, #IBDSuperHeroes group 

"I think the majority of the IBD community have tried and to date, I have still not heard of anything positive." 
@PasfieldRoger (Roger Pasfield), #IBDSuperHeroes social media follower & group admin 

“I tried it and spent 3 months feeling like I was having my intestines set on fire and slowly dragged out by an army of mini demons.” 
Nicola Bullock, #IBDSuperHeroes group 

“I drank this shit for two days and it put me into such a flare that I ended up beyond drug repair and having to have the emergency op, subtotal colectomy and 1 ileostomy formed! Cheers! Tell this cock to call me of he wants.” 
Mike Raymond, #IBDSuperHeroes group 

“My tongue and throat swelled up. That was a fun day.” 
Kelley Turner, #IBDSuperHeroes group 

“I used it when I had my jpouch and caused a big bleed so I would stay well away from it.” 
Lydia Perry, #IBDSuperHeroes group 

"Tastes like grass, does nothing positive and may have made things worse." 
@dasilva_uk (Gavin Williams), #IBDSuperHeroes social media follower 

“My Grandad read somewhere that it was good for calming digestive issues so he just got me some to try, I wouldn't say it did anything that amazing, it certainly wouldn't do anything on its own, but I did feel slightly less bloated I guess. Don't use it any more cause I have to drink enough crap with Crohn's as it is without adding to it!!” 
Sarah Jane Smith, #IBDSuperHeroes group 

“It tastes what I imagine piss would taste like!” 
Rachel Emma, #IBDSuperHeroes group 
“I used Aloe Vera tonic (not juice) to help with nausea? But it had zero impact on the disease.” 
Caitlin Wells, #IBDSuperHeroes group 

“Tasted fucking appalling, had zero effect on my insides but works amazingly well on burns for which I grow a plant in the kitchen.” 
Susan Smith, #IBDSuperHeroes group 

"Made my husband double up with pain, feeling like he'd been poisoned. He was ill for a week after." 
@RachLittlewood, ((Rae Littlewood), #IBDSuperHeroes social media follower 

“I know someone with IBD who swears by them. So I tried one. DEAR GOD!! Worst decision ever. Felt like a nuclear reactor was going off on my stomach. Yes, it cleared me out. But not in a way I'd ever want to repeat, or promote!!!” 
Jennie Louise Smales, #IBDSuperHeroes group 

“Will was given some for free it did naff all if anything it gave him the runs..” 
Kaitlynn Bailey-Park, #IBDSuperHeroes group 

“It just pisses out my bag #wasteofmoney” 
Michelle Haggerston, #IBDSuperHeroes group 

“I drank Aloe juice back in the day when it was thought to help. That was back in the early 90's so it's not the latest thing out there and it probably wasn't then either. At that time, I was trying anything because I was allergic to every medication they had available for Crohn's except Prednisone. It did nothing and tasted nasty. There's my opinion. I have "aggressive and severe" Crohn's when it is active. I am currently in remission with Humira. The one and only thing, outside of surgery, that has subdued the beast and I'm not allergic to. It's kept me there with no side effects for 9 years.” 
Leah C Sparrow, #IBDSuperHeroes group 

Please do feel free to share this open letter with Aloe Vera reps when you can no longer muster a response to the endless supply of enquiries hitting your inbox. 

Regards 

Sahara Fleetwood-Beresford
#IBDSuperHeroes founder and pissed off patient