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What people with IBD should know

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Responding to negativity in the IBD community

A while back, a new member joined the #IBDSuperHeroes Facebook group and his introductory post basically said that we had it all wrong and that there was nothing super or hero-ey about us. He wrote that he had recently broken up with his partner as a result of having Crohn’s disease and that he was incredibly unhappy with his life because of his IBD.
I have seen posts like this in the past in other groups which have been met with a telling off for the negativity, but whether we like to admit it or not, we’ve all felt negative at some point or another.
Read the rest of my post over on InflammatoryBowelDisease.net
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I’d prefer reality to “sugar coating” shit

I do understand that hitting a newly diagnosed patient with worse case scenarios is not ideal, but I do appreciate some reality. It was an incredibly tough time for me mentally because I wasn’t prepared for any of it. If I had known that I had just been diagnosed with a chronic illness, which would affect much more than just my intestine for the rest of my life, and that surgery was often needed, I think it would have helped me deal with it.

Read the rest of my post on InflammatoryBowelDisease.net about how much impact not being told the brutal truth about life with IBD had on me in the first year of diagnosis.

Tut Tut, Butlin's!

The online ostomy community is generally a positive and supportive place to be, but when one ostomate is offended or insulted, it can lead to other ostomates coming out in force to show solidarity; think back to #BagsOutForSeven.
This has been the case this week, after a gentleman with a stoma was declined access to the water rides at Butlin’s in Skegness. He posted in an online support group, understandably angry about it. He was told by multiple staff that it is company policy not to allow those with a stoma on the water rides such as slides and rapids. He said “I was left standing at the front of the queue as people filed past as if I’d done something wrong.”
The stoma community rallied on social media to demand a response from Butlin’s, who repeatedly said that they sincerely apologise for any upset caused and that they do allow guests with colostomy bags to enjoy all of the features in the pool. They also said that they would be reviewing their procedures and that they had reach…

My stoma favourites – Adhesive remover & barrier wipes

I have had multiple people tell me that I do not need to use adhesive remover, and that if I keep removing my bag without it, I will get used to it...
I would never tell anyone what products they do and do not need to use, because we’re all very different. Our skin is different, the issues we have are different, and what suits our skin is different. So, I do not feel I ever need to explain to anybody why I use an adhesive remover, but I will simply state that I DO need to.
I know that GP’s in certain areas do not like to provide it on prescription because it is not deemed “necessity”, but I can, with complete certainty say that if I was refused it, I would purchase it.
I ordered samples of so many different products, and by far the best for me is the Trio Ostomy Care one. I feel like it lasts so much longer than any of the others I tried too!
I tried fewer barriers, because as soon as I tried the Trio wipes, I didn’t feel there was any need to try any more, as I had zero issues with…

It’s official – I’m a writer now!

NEENAW NEENAW, exciting news, coming through!
I am delighted to be able to tell you all that I am now a writer on inflammatoryboweldisease.net!
I am incredibly proud of myself, which is something I very rarely get to say! I love the site, and I believe that advocacy in the US is something that we can only aspire to achieve! So, for inflammatoryboweldisease.net to think that my writing is actually good enough to publish on their site, is A.MAAZING! My articles will appear here.
For a long time, I have dreamt of being able to make a career out of supporting people on their IBD and ostomy journey, and whilst I’m not quite there yet, consider by my IBD itch, well and truly scratched!
I have added a tab to my articles to this blog, so now I just need to publish one! 
Look at me... I'm a writer :D 

Are you comfortable educating people about your health?

Many people with Inflammatory Bowel Disease or an ostomy, don’t want people to know about it. It’s a very individual decision, who you decide to tell. Then, there are others who choose to tell the world about it!
I began raising awareness back in 2015. I posted about my life with IBD; the procedures, the treatments, the surgeries, the symptoms and the daily struggles. I wanted to educate the masses. I wanted people to understand that having IBD did not simply mean that I shit a lot…
Over the years, my focus has shifted. My priority became more about supporting those with IBD, because it became apparent that no-one outside of that community, actually gave two fucks about it. Not until they were under investigation for it of course! I have genuinely had people that I haven’t spoken to in years, pop up because they’re currently going through investigations to see if they have Inflammatory Bowel Disease. I may have thought my posts had gone unnoticed, but in truth, they hadn’t. People m…

Should I join an online support group?

Online support groups can be great, but of course, there are negative aspects to consider too.
Managing online support groups is not new to me. Many of you will already know that I run the #IBDSuperHeroes Facebook group. In 2014 I was managing a different group, which grew very quickly. Too quickly, in my opinion. There were a lot of issues, negativity, rowing and accusations of cliques, but I think it taught me how to do it better this time.
My priority is providing a safe place and support for those with IBD when they need it. There are 100% no cliques where I am concerned. Half of the time, I am running down the new posts and commenting where I can, without knowing who I am even talking to. Old member? Serial poster? Newbie? Lurker? Great, let’s see what we can do to make your day better!
In my mind, a group exists as a support network. To post in when you’re feeling rubbish and need a pick me up, advice, or to blow off steam. Asking questions about others experiences and learnin…