What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with 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 mean some lifestyle changes and som

Are IBD and ostomy influencers reliable?

Pop along to Instagram, Facebook or Twitter and you will find a huge number of accounts “raising awareness” of Inflammatory Bowel Disease or having a stoma. Posts on these accounts often include tips, which are also often wrong!

Influencer marketing is all the rage right now, with big brands like Disney even getting in on the action. Basically, it’s the digital era’s version of word of mouth. Peer recommendations have always been a major influencer, and with social media enabling people to gain “friends” all over the world with the click of a button, and to follow the journeys of those they find inspiring so easily, some people will often find themselves with a great deal of influence over others.

Many influencers became influencers purely by chance, because some media outlet picked up their story or a post on their social media went viral. Some people know how to build fans online, and simply do it for the numbers. They are not trying to gain followers to help educate or support people, they are not investing any of their time reading the latest research, and they certainly won’t accept any responsibility when something they shared has negative repercussions for someone.

Don’t get me wrong, some people are influencers because they earnt it, and they really know their shit – pun intended.

Whether you built a large social media following due to the knowledge of how to do so, or purely by accident, you need to be careful about what you say!

Many people use these accounts to share their journey with IBD or an ostomy, but the experiences of one person are often irrelevant to others. It really grinds my gears to see people recommending supplements or diets or exercise programmes to the community as a whole. The same can be said for people making broad statements about IBD or stoma life, when in reality, the statement is just based on personal experience. Everyone is different, and this should always be taken into account and made clear to readers.

I find myself increasingly frustrated by the amount of careless and irresponsible individuals sharing information, tips and tricks online.
Here are some examples of the things I have heard and seen during the last few months from these “influencer accounts”:

Bad tip: Hydration tip for ostomates – “adding lemon to your water makes it super refreshing and tasty.”

Most ostomates suffer with dehydration on occasion, especially in hot weather, due to a shorter digestive system causing malabsorption. The best way to rehydrate is to drink an electrolyte replacement solution. Lemon is actually a natural diuretic, so will likely make your dehydration worse!

Bad tip: Changing your ostomy appliance - “Use baby wipes when changing your bag for ease and to stay clean.”

Your stoma nurse will have recommended that you clean the peristomal skin (the skin around your stoma) with just water. This is because the peristomal skin is very sensitive. You can get wet wipes which are specifically designed for the purpose of being used during bag changes from ostomy manufacturers, if this is something you think you need, but baby wipes are not a suitable replacement.
Most baby wipes contain oils, which can affect the adherence of the baseplate to your skin, increasing the likelihood of leaks. Most baby wipes also contain perfume, which is not suitable for use on the sensitive skin around your stoma, and could cause irritation and dryness. Baby wipes may be too abrasive, so these can also make the skin dry or irritated.

Bad tip: On easing symptoms - “Drink/Eat [insert ingredient] to improve IBD symptoms.”

The list is endless; from Aloe Vera to only consuming raw fruit and vegetables! As above, no two people are the same, and if you have found something in particular that has helped ease your symptoms, then YAAAAY! By all means, do celebrate that success with the community, but nobody should be recommending that everyone try it! You have no idea what the people following you are dealing with, what type of Crohn’s Disease or Ulcerative Colitis they have or what their symptoms are, so why on earth would you ever assume that you can fix them?

Bad statement: Talking Jpouch surgery and risks – “Jpouch surgery does not affect fertility.”

Jpouch surgery does frequently affect fertility. Research has shown that having a Jpouch built laparoscopically can reduce these risks.

Some people have no issue at all conceiving after Jpouch surgery, and that really is great for them, but the fact remains that there is a much higher percentage of people that cannot conceive naturally because of the surgery. Simply put, there is not a lot of room inside to fit all of our organs, and when Jpouch construction takes place, there is a lot of activity (cutting, pulling, stitching, tugging) all happening in the same area as our reproductive organs. This can cause scarring and fallopian tubes to become blocked.

In conclusion, I would like to urge patients to use some common sense and do a little research before blindly following tips and advice from people who are not medically trained and haven’t made the effort to do their research. 

I would also like to urge those with influence in the community to act responsibly!