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

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 learning from other people’s journeys is priceless, and can help you create positive coping strategies for you, and then you can also share that experience and knowledge with others. However, groups should not be used for asking, or giving medical advice. If you ask a question which should be directed at a health care professional, then you are putting yourself at risk. Please don’t do this. Another patient is not you, and IBD is a very individual disease to each person who suffers with it.

I don’t think there’s room for being tolerant of nastiness or rudeness. I know that the frustration of living with IBD can make patients angry and upset. I know that fatigue and treatments can also affect how someone acts and feels, but, we are all fighting a battle, in our body, and often in our heads, and a support group should be the place where you can find and give comfort.

I am not up for playing mum to people who DO know right from wrong, so there are no cautions or warnings in #IBDSuperHeroes, simply removal from the group. We’re very lucky, because generally speaking, we have a good bunch. If we do drop people a message, it tends to be because I don’t think they’re aware of how something they posted came across, or they were unaware of which charity we support.

There’s no room for competition either. The fact is, it’s all relative. The worst thing to ever have happened to a person is as traumatic to them as the worst thing that’s ever happened to you is. Whether one is a colonoscopy and one is emergency surgery is irrelevant. It’s hard for them, and they need support.

If you use a support group as it is intended to be used, then it should be a positive experience. So, here are some positives and negatives about online support groups.

Positives - Nobody gets it like someone going through it:

Gaining 2lbs after struggling with weight loss for so long, or finally having a bowel movement after a blockage or surgery is the type of stuff that nobody else really understands. An IBD sufferer really is incredibly, genuinely pleased for you, so what better place to celebrate these successes?!

Then there’s the less celebratory stuff, like crying over an accident or bag leak when you’re up in the middle of the night showering and changing the bed, or when you find yourself covered in your own faecal matter when out of the house. Other patients cannot fix it, but they have been there, and sometimes, just knowing you’re not the only person going through it, really does help.

You create friendships with people that you don’t have to constantly explain yourself to. People that don’t get mad if you don’t reply for a few days because you’re fatigued, and that don’t question you not leaving the house for 5 days or still wearing your PJs at 3pm. You may find that once you’re in remission, you don’t really use the groups anymore, but the relationships you’ve formed whilst active can still remain very strong.

Talking to someone going through what you’re going through, or what you’re about to go through can be an immense help. Whether that is tests, procedures, surgery, or even the new treatment you’re about to start.

You have the opportunity to learn from those that have walked the same path you’re walking. If they have walked it before you, that can make the road seem clearer, less bumpy, and maybe even make you feel more optimistic about what’s to come.

Many people will post regular updates just about what they’ve been up to, and what they’ve managed to achieve today, this week, this year etc. Things that they didn’t think would be possible at the time of diagnosis or during a flare. These “light at the end of the tunnel” posts can be incredibly helpful in tough times.

You can rant about how you feel to people who can actually relate. Most people have experienced negativity from people around them, those close to them and even strangers. It is often because you aren’t visibly sick, so strangers assume you’re healthy, and friends struggle to deal with the constant cancellations, lack of response, or sometimes just can’t understand that you don’t just start a new treatment and feel better within the week.

You can openly talk about how sad you are, and people will often tell you that they feel, or have felt that way too. There tends to be a sort of grieving process we go through, due to the loss of our old and “normal” life, which doesn’t necessarily just happen the once. It can happen each time a flare occurs, or even when some of the extra-intestinal manifestations stop you in your tracks. Having others recognise your struggle, and validate it can really help.

Many groups, like #IBDSuperHeroes try to arrange fundraisers and events so that you can meet up in real life. Personally, I absolutely love this, as I feel like other patients are “my people”.


If you’re newly diagnosed, joining a support group can feel overwhelming. You’re often confronted with worst case scenarios that you don’t want to think about yet.

Whilst forming relationships with others who “get it” is largely positive, it can be distressing to see people that you have come to care about struggling, and knowing that there is nothing you can do to help them.

If you’re health is good at the moment, you may often find yourself drifting away from the groups, as you currently have no use for them, which can be a source of guilt. It shouldn’t be. Groups are there for when you need them, and if you want to pop in and post an update about how good life is at the moment, that is good too. It brings positivity and hope for those in a less positive place.

Be prepared for bias views. As I mentioned above, many people drift away from the groups when they are feeling well, so the people who are in the groups and commenting on your posts are struggling themselves at the time. Some people diagnosed with IBD really do just try a few meds, feel better and carry on living their life. These are the stories we often want to hear, but they are also often the people that never found themselves in a place where they looked for and joined a support group.

If you’re not in a group with 10,000 members, you can wait a while for a response, which some people don’t like. Just know that it’s not a case of being ignored, it’s just sometimes people don’t actually have advice for you, or life and being sick has prevented them from being active online.

In conclusion:

The only way you will ever really know, is if you try it and see. We try to keep our group as stress-free as possible, after all, life can be tough enough, and stress is a trigger for many people. If you want to pop along, #IBDSuperHeroes would love to have you!