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

How COVID-19 has impacted the IBD community

So, I wanted to write a post about COVID-19, but I honestly didn’t even know where to start for a good while there!

It’s been a crazy month, hasn’t it?! The first few weeks were terribly stressful, for everyone, not just those in the IBD community. The feeling of being in limbo is not that uncommon for those with IBD. It certainly isn’t for me anyway, but, that does not mean it’s something I am used to, OR comfortable with! IT STILL SUCKS!!

First, we had the “who is at increased risk and why” confusion. Then appointments started getting cancelled, and routine procedures and non-urgent surgeries. People rely on their appointments with their specialists – some people save all of their questions for their appointment, so no appointment means no answers. When your routine appointments have been cancelled for things like physio or B12 injections, which again, people rely on, it’s frustrating and worrying. When a planned surgery is cancelled, which someone has worked themselves up to prepare for, and also may have pinned hopes of feeling better on, it being cancelled is heartbreaking. Then there was confusion about what the terms the government are using actually even mean! 

Stupid people have not helped in the slightest, hoarding food and cleaning products, and not staying away from other people. The stress of simply not being able to get toilet paper is enough to tip a person with IBD over the edge!

Stress is a trigger for a huge number of people with Inflammatory Bowel Disease, so it feels like a vicious cycle. Worrying about having a flare can ultimately bring one on, and nobody really wants to go to a hospital or GP surgery at the moment unless there really is no choice. 

For me, staying home isn’t a major issue. I am not a social butterfly. I only ever really leave the house to buy food and to walk the dogs anyway, but when someone says you can’t, it’s suddenly all you want to do!

I am lucky. I have not been on treatment that affects my immune system since last my last surgery (Jpouch excision and perm ileostomy), in September 2018. I could have very easily just logged off and ignored all of the negative stuff on social media, but I can’t do that can I? That’s not who I am! So, instead, I had a few reputable sources bookmarked for generic information and for IBD specific information. I also created a list with the top gastros in the world on my Twitter account, so I could check in there too. I checked all of these sources a few times a day so that I could share that information with the community as it came in, which was thick and fast initially, but also, everchanging!! It was pretty stressful, and the more information that became available, the more confused people seemed to become!

I think we got there in the end. Most people that are high risk have now been contacted by the NHS! If you are unsure, this super useful tool has been created for those in the UK – BSG Risk tool. The information is also sent to hospital IBD teams, so they can validate it and use it to support their patients.

I am also proud to say that the #IBDSuperHeroes group has been a very supportive and caring place to be throughout all of the mayhem. It's been nice to see people sharing the information they have received, and giving virtual hugs to those struggling with the situation.

There are also things being put in place by the government to help those that are the most vulnerable, like priority shopping slots, food parcel delivery, furlough for non-keyworkers etc, but it still doesn’t feel quite real yet does it? Don’t get me wrong, I know it IS real, it’s just that it’s the kind of stuff you see in movies, and never actually expect to experience…

It’s not a situation anyone expected to be in; our healthcare system and government were not prepared, which means a constant changing of rules and trying to figure out the best way to tackle specific issues. The country is literally “winging it”.

I hope that by now, most people have found some peace in the madness. I have been very good since the start at not reading shitty articles published by the media, and I haven’t shared people’s stupid posts about ways to combat COVID-19. That doesn’t mean that I haven’t been stressed… I have. The constant checking in for good information and sharing on all of my social media accounts and into the #IBDSuperHeroes Facebook group in a bid to reach as many people as possible was tough going. I felt like I rarely put my phone down for a few weeks!

I know that it has been really difficult for our specialists, as they were trying to advise us with very little data! I am extremely grateful for the hard work and effort they have put in, all over the world, to gather and share information for people with Crohn’s disease and ulcerative colitis.

If you’re looking for IBD specific COVID-19 info, I urge you to look at reliable sources, such as the IBD Registry and IOIBD.

Take care, stay safe, and support each other!