What people with IBD should know

I'm often asked, “What would you tell someone recently diagnosed with Inflammatory Bowel Disease (IBD)?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mea

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. 


Sahara Fleetwood-Beresford
#IBDSuperHeroes founder and pissed off patient