On the eve of World IBD Day, I always try to write posts that will help create a bit of discussion; post that will get us talking! Last year I decided to blog about ten problems of IBD that nobody talks about and this time I wanted to set out to find a way to get conversations flowing. I always see a lot of negativity around conversations with family and friends. I know it can be frustrating when people ask things like ‘are you better yet?’ and ‘you look well’– but I honestly believe these misconceptions come out of lack of conversations rather than deliberate lack of empathy. Therefore, in this blog post- I’ve created a guide for friends and family of IBD Patients. Please feel free to share far and wide- tag a friend; email it to your siblings; read it with your parents over dinner. I hope that I’ll be able to provide a bit more clarity and understanding of what it is like with IBD.
What is IBD?
IBD is an autoimmune disease: these diseases involve the immune system turning on a particular part of the body and attacking it. In the case of IBD it’s the digestive tract that gets this treatment, causing anything from pain, fatigue, weight loss mouth ulcers, diarrhea, and abscesses. You might think that these symptoms seem similar to those of IBS or food poisoning. Yet the difference is that patients with IBD will often have digestive tracts that are severely inflamed and ulcerated while IBS sufferers insides look completely healthy. You can imagine that the impact of these can be far-reaching: nutritional deficiencies, fatigue, anxiety are all extremely common.It’s not genetic in the sense that there isn’t simply 1 gene in our bodies that causes Crohn’s (in the same way there’s the cancer gene for example). Yet there are definitely genetic predispositions and it’s likely that a combination of this+a trigger (which could range from an acute period of stress, a nasty tummy bug, an overload of antibiotics) that starts it. Which is why IBD patients can find generalizations such about diet and stress annoying- as it is a very personalized thing.
How will they be treated?
Here is a quick overview of possible treatments:
- A short course of steroids to quickly reduce inflammation.
- An immunosuppressant such as Azathioprine to suppress the immune system. These suppress the immune system in the hope that it prevents it from attacking the digestive system and thus preventing further inflammation. These take at least 6-8 weeks to work.
- A biologic. The strongest of the 3, biologics such as infliximab block the TNF-alpha protein that’s made by iyr body. With people who have IBD, there’s too much of this protein which can then cause attack mode. Blocking the protein should, therefore, re-block the attack mode.
Of course, there are other pathways too. They might need to have surgery to remove parts of the digestive tract that’s badly damaged or extra supplementation of key nutrients that they’re missing out on (such as Iron and Vitamin B12).
What might my friend or family member be feeling?
There’s no one feeling: being diagnosed with IBD is an emotional rollercoaster. But be mindful that they might…
- Feel angry or resentful. While nobody expects those around them to filter their conversations, usual chit-chat about things like ‘ I wish I could lose weight’ or ‘I’m bloated’ can sometimes leave us a tad angry (even if we know it’s irrational) that our relationship with our body is much more complex. Sometimes it seems impossible to remember a time where our conversations about our body were about fitting into a bikini or little niggles- now they seem to be about am I getting enough iron? What are my inflammation levels? Will I need more medication? However, nobody is saying you should change your entire conversations- just be mindful of these emotions.
- Feel emotional. Because life after being diagnosed can be a bit of a whirlwind, it’s often not until several months afterwards that we begin to process the enormity of what has happened. So it’s normal for IBD patients to have sudden outbursts of feeling emotional.
- Feel anxious. Anxiety and IBD are closely linked. In fact, it’s thought patients with Crohn’s are twice as likely to have anxiety. Be mindful that things they might be anxious about probably seem like second nature to you: going to the doctors, eating out, going on holiday, packing an overnight back, weddings and family occasions. Having IBD can feel like there are so many things to think about it. In my blog post, My morning routine’ I blogged about how long it took me to get ready for a work trip to London and how I felt anxious about everything from my packed lunch to toilet stops. Be mindful that well-meaning suggestions to grab dinner, go on a night out or book a weekend away, may lead to anxiety. Not that patients with IBD shouldn’t do these things; we just can’t help worrying a little along the way.
How might their life be different now?
Nobody with IBD wants to be treated as if they’re different (Well, I certainly don’t anyway) but you may well find your relationship changing. A big one can be socialising. Us Brits centre socialising around food and drink: both of which can be tricky with IBD. Alcohol and eating out can make symptoms worse for some; as can the stress of being away from the house. Energy levels can play a part in things too. As can not being concrete in the plans we make. It might seem annoying when your friend or family member cancels plans last minute but these things are often out of our hands as the disease is just so unpredictable. Yet bear in mind that this may not be all the time- many IBD patients enjoy long periods of remission where they can live full and active lives. Just keep in touch and check in with how they’re doing regularly.
How can I help them?
Nothing is more upsetting than watching a loved one suffer and not knowing what you can do to help. Although everyone is different, the most helpful thing is often simply offering to talk. Another thing that might help is to do a little research, there are lots of guides out there to IBD. My book Managing IBD is a good place to start (you can win a copy this week too!) If you’re a parent, Crohn’s and Colitis UK have a booklet about IBD in Children. I know one of the things I personally found the most thoughtful is when someone has taken the time to understand the medication I’m on and the symptoms I am experiencing. Offering to be flexible with social occasions can help too. Suggesting activities to replace the one’s an IBD patient might miss out- movie nights, cooking together- is another really helpful idea. Don’t push the food issue too much- many IBD patients prefer to cook for themselves rather than explain the ins and outs of what they can and can’t eat. Taking the stress out of it by suggesting everyone bring their own food might help.
What shouldn’t I say or do?
There are no right or wrong things to say but overgeneralizing can sometimes be hurtful. This includes things like…
- Assuming someone is ‘better’ after being put on medication. Now, this is something I don’t personally find offensive as I do have periods of feeling well but others might feel poorly even if they are on medication and they’re doctors say their disease is under control. For many, fatigue and stomach pain never go away; even if in clinical remission. It’s natural to ask ‘are you feeling better’ but for some, it can be frustrating to repeat the same answers.
- Suggesting a cure. It’s only natural to be excited when you read an article on the latest cure and want to share with your friend or family member. Yet, many of us have heard it all before and lot’s of these are faddy or unsupported.
- Make comparisons. This is the one thing that can be really annoying- when somebody compares what you have and says they know exactly what you mean; only for it to turn out you have food poisoning or have eaten something dodgy. Nobody is saying you shouldn’t be able to moan about these things (what are friends and family for!) but avoiding comparison is a good idea. This goes for comparing people with IBD- believe me patients are guilty of this too. Comments such as ‘well x has it and they’re fine’ or ‘x has it much better/worse than you’. As I’ve blogged about before, we shouldn’t compete with chronic illnesses.Managing IBD