Receiving a diagnosis of Crohn’s Disease or Ulcerative Colitis can feel very overwhelming. To be told that you have a chronic condition, with no known ‘cure’, that requires potentially long-term medication and lifelong self-management is never going to be easy or pleasant. Add to that the variety of new medical terminology that gets thrown your way (autoimmune disease, inflammation, corticosteroids, biologics, immunosuppressants, intestinal mucosa, remission etc) and you’d be forgiven for not knowing which way is up and which is down. But you’re not alone – so, so many people live (and thrive!) with Inflammatory Bowel Disease.

There’s so much that can be said about IBD and all its facets, it’s a challenge to condense the essentials into a single blog post. Nevertheless, here you will find advice and information that I wish someone had given me when I was diagnosed with IBD twenty years ago. It is from the patient’s (ie your) perspective, and does not get into medical details, but covers the essentials of how to make dealing with the diagnosis, and living with the disease, just that bit easier.

If you would like an essential introduction to what IBD actually is, check out The ABC of IBD and then return to this page for the more patient-centric view on everything.

BE YOUR OWN HEALTH ADVOCATE

There is no one way, and no ‘right’ way, to experience and live with IBD. What is right for you is something you and your healthcare team will figure out together. I know it can be so very tempting to want to distance yourself from the situation as much as possible, and this is very human – it’s unpleasant, upsetting and overwhelming. The temptation to just hand yourself and your health over to a doctor and want (and even expect!) them to ‘fix you’ so you can go back to normal and get on with your life, is massive. It can happen like that, of course it can, and for many it does, but not for all of us.

Regardless of whether you fall on the ‘easy-to-tackle’ or the ‘more complex’ side of the IBD spectrum, it is my firmest of beliefs that you must get involved and be the co-pilot of your health journey. Become a part of the process, work with your doctors and share the responsibility with them. This is YOUR health and YOUR life, so naturally, the person who is best positioned to care the most about your health outcomes, and to advocate for them, is you!

Get involved and be the co-pilot of your health journey…the person who is best positioned to care the most about your health outcomes, and to advocate for them, is you!

TIPS ON HOW TO BE A MORE “ACTIVE PATIENT”:

Write things down: symptoms, dates, questions, things your doctor said during your appointment, etc.

Before a doctor’s appointment, prepare all your questions and write down the answers you are given, or possibly even record the appointment (with permission, of course): a lot of information can come your way during a medical appointment and you can easily feel overwhelmed in the moment, so this approach ensures you stay on track. For help with this, download the Doctor Appointment Prep Bundle.

Keep a note of all the meds you have taken and are currently on: dates, dosages, any reactions, how you felt etc. Remember, this is a chronic illness, you may need this information years down the line and it will be difficult to recall all the details (there are a lot of IBD meds and almost all of them have weird names you may find difficult to recall even while you’re on them, let alone years later!) You may change doctors as well, and the new one won’t have first-hand knowledge of your medical history, so having all this information written down and ready to hand over, saves you precious time during your appointment, and ensures your records are accurately kept.

The doctor-patient relationship in chronic illnesses is different to the standard one-off doctor appointment.

Choose your medical team carefully: it’s not always enough to have a ‘good doctor’. You should feel supported and listened to by your healthcare team. The doctor-patient relationship in chronic illnesses is different to the standard one-off doctor appointment for a health niggle that can be tackled, prescribed for, and done with. You and your doctor will be working together to tackle your condition, so it’s important that you have good communication and that any questions or concerns you may have, are not dismissed – they are all valid and you deserve to have things explained to you, multiple times if necessary!

You deserve to have things explained to you, multiple times if necessary!

Keep a food diary: this can be an invaluable tool both for you and your healthcare team when it comes to figuring out what foods are best for you and which challenge your digestion and are best avoided for a time. For many people, figuring out their food triggers is a key part of symptom management and feeling better overall. (Read this to help you get started).

Remember, nobody knows what you are feeling better than you.

Remember, nobody knows what you are feeling better than you: so make sure you speak up and share as much information with your healthcare team as possible, so that they are in a better position to help you. If something doesn’t feel right to you, say so, because nobody else can feel what you are feeling and so they cannot take steps to help you if they don’t know something is wrong. If a medication that is generally well-tolerated creates problems for you, then it may not be right for you, even if it’s perfectly fine for the vast majority of patients – don’t let statistics and generalisations drown out the fact that something isn’t working for you.

GOOGLE WITH CAUTION!

There is a fine line between doing your research on your diagnosis and falling down a scary Google-shaped rabbit hole!

The internet is, undoubtedly, a spectacular source of information, and can be an incredibly useful tool for learning more about IBD, but it is also something of a ‘Trojan Horse’: within this inviting research- and information-shaped horse lies a frightening collection of icily-worded medical studies, confusing clinical terminology, and worrying worst-case-scenario stories. You basically risk doing a lot of reading with very little understanding, being made to feel like some kind of nameless lab rat, just one number in a sea of statistics, or living in fear of a health outcome like that x, y or z person you read about.

There is a fine line between doing your research on your diagnosis and falling down a scary Google-shaped rabbit hole!

I am not suggesting you stick your head in the sand and remain ignorant about your condition, absolutely not. But don’t go to the other extreme either. If you find yourself unable to stop the googling, just be prepared for the things that you may come across as you research, and don’t immediately jump to conclusions. Make a note and ask your doctor, who knows you and your particular case, and can give you a more grounded and contextualised response.

DON’T COMPARE

IBD is such an individual disease, it can manifest so very differently in different people. Crohn’s and colitis involve many potential symptoms and disease expressions, it’s no wonder people’s IBD journeys can look very different. So, while it’s extremely helpful to talk to fellow sufferers and find out about other people’s experiences, do not assume that yours will be the same.

People’s IBD journeys can look very different.

Some people suffer for years before receiving a diagnosis, while others get one off the bat. Symptoms can look vastly different between patients, as can remission. As with many chronic conditions, “sick” and “healthy” will look different on different people, so don’t use others and their experiences as something to measure yourself and your experience against. There will be those who will seem better off than you, but there will undoubtedly also be those who will be worse off too.

Learn about others, but focus on your own IBD journey and avoid comparisons as much as possible.

BE PATIENT

Patients are called “patients” for good reason! We need to be patient with our doctors, patient with medical testing and procedures, patient with waiting for results, patient with our meds, and most importantly, patient with ourselves.

Medication takes time to work. Dietary and lifestyle improvements can take even longer. Stick with it.

Everybody wants a quick fix, of course we do! Who wouldn’t want to feel, and be, better sooner rather than later?! Alas, this cannot always be. Temporary improvement of symptoms is one thing (and a welcome one at that), but more deep-seated improvements unfortunately need longer.

So be patient. Medication takes time to work. Dietary and lifestyle improvements can take even longer. Stick with it.

DIET IS IMPORTANT, but THERE IS NO ONE MAGIC “IBD DIET” – DON’T LET ANYONE TELL YOU THERE IS

Yes, certain dietary protocols have been shown to be helpful for easing the symptoms and repairing the intestinal damage caused by IBD, and certain foods are commonly avoided because a large percentage of IBD patients cannot tolerate them. But there is no one single dietary prescription that will magically help every single IBD patient out there. We are all so different, and what works for one person will not necessarily work for another (see more on this here).

What works for one person will not necessarily work for another.

Some IBD patients have improved, and even managed to get into remission, by adopting a vegan diet. Others cannot tolerate a single vegan meal, let alone the full-on diet! Some swear by the GAPS and Specific Carbohydrate Diets, while others just don’t do well with that much meat and animal-derived produce. Furthermore, while some patients are able to get themselves into remission with the help of diet, that doesn’t mean that this is possible for everybody. A great many IBDers succeed in improving their symptoms and can manage them quite well using diet, without achieving full remission, but this should not be considered a failing, rather a different degree of success.

Many IBDers succeed in improving their symptoms using diet, without achieving full remission, but this should not be considered a failing, rather a different degree of success.

Unfortunately, the only way to determine what diet best suits you is trial and error. Use the existing dietary protocols as a starting point, try them out, give them time, but the diet on which you will feel your best on, can only be determined by you. That is your IBD Diet, and even that is not set in stone and is liable to shift and change with time, so listen to your body and create it for yourself.

For a starting point, check out Eating for IBD: Top Tips.

MAKE FRIENDS WITH YOUR “EMERGENCY KIT”

An IBD Emergency Kit is a very useful tool to ensure you have some essentials with you at all times. Admittedly, the feeling that you may need an emergency kit isn’t particularly great, but having one with you can help ease the stress and anxiety of the ‘what if’ scenarios when you are out and about. When it comes to the IBD Emergency Kit, better to have it and never need it, than to need it but not have it!

When it comes to the IBD Emergency Kit, better to have it and never need it, than to need it but not have it!

Download this checklist, and give yourself some peace of mind.

CREATE A SUPPORT NETWORK

The poet John Donne famously said that “no man is an island”, and nowhere does this feel truer than in the sphere of chronic illness. Facts are facts, and there will be times that you will need some kind of support. The form this support can take is entirely up to you, to suit your personality and needs.

It can be so helpful to talk to a few people close to you about your condition, and even to take someone with you to appointments.

Family and friends are the obvious and already-available contenders for this, and they are a brilliant starting point. It can be so helpful to talk to a few people close to you about your condition, and even to take someone with you to appointments, both for moral support if you need it, but also to help you go over what was said in the appointment (having that ‘sounding board’ can be extremely useful).

Joining an online or in-person IBD community, support group or forum is really worth considering.

It’s also very helpful to be able to talk to other people with the same condition. To this end, joining an online or in-person IBD community, support group or forum is really worth considering. It can be weirdly liberating to open up to people you don’t really know, and the ease and relief of speaking to other people in the same boat as you and being instantly understood without having to explain every little detail, is huge! Plus, there’s a whole lot of advice and tip-sharing that happens in these communities, and these patient-to-patient nuggets of wisdom are often the most precious.

The ease and relief of speaking to other people in the same boat as you and being instantly understood without having to explain every little detail, is huge!

Social media is a great place to find others with IBD that share their story and make themselves available for questions and are open to receiving messages from others on the subject. The one caveat here is this: remember that IBD is experienced differently by different people, so do not pre-determine your experience of IBD based on the experiences of those you may see, hear, read about, or speak with online.

There may come a time when your support network will need to include professional help. It’s ok and understandable to feel upset about things, but if you need help (including professional help), ask for it. More on this below.

DON’T BE AFRAID OR EMBARRASSED TO GET HELP FOR THE PSYCHOLOGICAL IMPACT OF IBD

Mental health can be affected by IBD. This is very understandable, as this is a condition which can interfere with so many aspects of a person’s life and can create anxiety and depression through long-term effects on your self-esteem, your social life, your job and your ability to work, relationships, and even what you wear!

There is zero shame in getting help and support for what is undoubtedly a difficult diagnosis that has the potential to affect pretty much every aspect of your life.

There is zero shame in getting help and support for what is undoubtedly a difficult diagnosis that has the potential to affect pretty much every aspect of your life. Seeking professional help does not in any way make you weak or a failure, or anything of the sort.

A great deal has been achieved in more recent years to help reduce the stigma of mental health and psychotherapy, and this is truly wonderful. Yet, this doesn’t necessarily mean that the concept of asking for and seeking out professional help is something that will come easily to everyone. Some of us are hard-wired to simply not ask for help, pretty much ever! It can be a challenge to move past this, but I encourage you to do your best, because chronic illness is not something that anyone should have to ‘power through’ alone and unsupported.

Chronic illness is not something that anyone should have to ‘power through’ alone and unsupported.

DON’T Dismiss THINGS LIKE YOGA, MEDITATION & BREATHING EXERCISES

These are great techniques for helping you cope with any chronic illness, and IBD is no exception. Stimulating your parasympathetic nervous system with activities such as these helps get your body into the “rest and digest” mode, instead of the stressful “fight or flight” mode that most of us are in so much of the time.

Stimulating your parasympathetic nervous system with activities such as these helps get your body into the “rest and digest” mode.

It’s useful to incorporate these activities regularly, both to help manage your stress overall, but also as a way to help you cope with uncomfortable symptoms (either physical or mental). Find a couple of techniques that work for you and add them to your IBD toolkit!

Here’s a simple Tree Meditation to get you started.

“HEALTHY” MIGHT LOOK DIFFERENT NOW, AND THAT’S OK

It’s inevitable that you will just want to go back to being your healthy self before you ever had symptoms. That could happen, of course, but it also may not, and while that is a very difficult thing to accept and come to terms with, please do your best, because it’s so easy to get stuck on the ideal vision of perfect health that you can miss and not appreciate your new version of “healthy” and all that it allows you to do.

It’s so easy to get stuck on the ideal vision of perfect health that you can miss and not appreciate your new version of “healthy” and all that it allows you to do.

We all need to discover what our own “best possible health” looks like in our given circumstances, and work towards that, even if it’s not what we would consider ideal. Celebrate and enjoy every improvement in your health, all the good moments. Stop waiting to “get back to normal” because your “normal” may have shifted, and this approach just puts enormous pressure on you and adds stress which you can absolutely do without!

YOU > IBD

While there are certainly times when it may feel difficult to separate yourself from your medical condition, please remember that you are not your diagnosis! You are so much more. Yes, IBD is a part of you and your life, sometimes it will be a bigger part and other times a smaller part, but it is just a part. And while it may affect aspects of your life, and can shape elements of who and how you are, it is not all you are.

You are not your diagnosis!

Sometimes you need to remind yourself of these simple truths, and that’s ok, but do remind yourself. Do not define yourself only by your diagnosis and lose sight of everything else that makes you, you.

SOMETIMES YOU CAN DO EVERYTHING ‘RIGHT’ AND STILL HAVE THINGS GO ‘WRONG’

Infuriating and devastating as this can be, it is a sad fact that sometimes, despite doing all the right things for you and your condition, things can still go wrong. No sugar-coating, this majorly sucks! The only reason I am including this here is because when this happens, it’s so easy to go into self-blame mode and try to dissect everything you did or didn’t do to try and figure out your error, or to tell yourself you didn’t do enough or didn’t try hard enough or for long enough etc. Please don’t do this!

As the well-known (and theme-appropriate) saying goes, sh*t happens!

As the well-known (and theme-appropriate) saying goes, sh*t happens! Please don’t blame yourself, and please don’t give up on everything you are doing to help yourself, on all the positive steps you have taken to try to better your condition, be it medication, therapy, dietary approaches, whatever. A less than ideal outcome doesn’t mean these things aren’t working, after all, for all you know, things could be much worse if you weren’t doing them! It just means that, in this instance, something else was bigger and stronger than all the good you have been doing. Keep doing it, these things take time, and you don’t know how many other undesirable things you could be keeping at a safe distance from yourself as a result.

Chronic illness, healing and health in general is not linear, there are fluctuations.We all need to learn to ride the wave.

And remember, just because things have gone wrong, doesn’t mean they will keep going wrong, or will always go wrong. Chronic illness, healing and health in general is not linear, there are fluctuations. We all need to learn to ride the wave.

THINGS YOU WILL EVENTUALLY GET USED TO HEARING

The list of comments and phrases that could fit under this heading is endless, but I have opted to include some of the most common. Take these with a pinch of salt and remember that they are often offered up to you with good intentions, or because the person has no idea what to say. And sometimes it’s just smug and unsolicited advice with no valid basis whatsoever! Either way, you eventually get used to hearing these things, and it’s entirely up to you whether you choose to ignore them and just let them roll off you, or if you want to respond and set things straight!

“Have you tried…?”

Comments on your weight (and its increase or decrease)
“I have IBS too”
“Eat something!”
“You’re still sick?”
“My friend’s cousin’s mum’s boyfriend’s aunt had that, but she cured herself with exercise”
“Have you tried…(insert random suggestion of choice here)…?”
“Why are you so tired all the time?”
“You mustn’t let this rule your life!”
“But you don’t look sick…”
“You just have to fight it!”
“Come on, one bite won’t kill you, will it?!”
“It could be worse…”
“It’s probably stress. Just stop stressing and you’ll be fine.”

THE SILVER LINING!

Believe it or not, there are positive things that come out of living with a chronic illness like IBD! They may not be immediately apparent, but they are there, honest! Here’s just a small selection of the good things that I have identified from my experience with IBD:

Believe it or not, there are positive things that come out of living with a chronic illness like IBD!

You learn to listen to your body and understand its needs – it knows so much more than anyone else, even the doctors sometimes!
You learn the art of self-care and the importance of putting yourself first (at least some of the time anyway).
You learn to identify your limits and you learn to respect them, and as a result you feel so much better and don’t ‘suffer’ the consequences (physical or mental) of pushing yourself beyond your limits just because it’s what others are doing, or what they want you to do.
You have a built-in people filter! Many will not be able to handle being around a challenging situation such as your health, and many will simply not want to, indeed you may notice that some people gradually ‘disappear’. You don’t want or need anyone like that in your life, people who can’t or won’t see past your health issue and into who you truly are. Having a chronic health condition is a fast and effective way of filtering such people out and away from you! The ones that stay however, they’re pure magic, cherish them.
You become more empathetic and are better able to understand other people’s experiences, and this can in turn help you create some incredible bonds with people.
You discover just how incredibly strong you actually are.
Having a chronic illness like IBD really helps you put things into perspective and realise what’s truly important and what isn’t worth your time.

To Summarise…

Remember: you are not alone, you are stronger than you realise, and you deserve to find and reach your best possible health. Speak up for yourself and ask for help when you need it. You are a unique individual so do not predetermine your health journey based on anyone else’s story. Find the foods, tricks and techniques that work for you and help you feel your best. You’ve got this!

Dealing With An IBD Diagnosis: Advice From A Fellow IBD-er