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 some steep learning curves along the way.
Knowledge is power
First and foremost, it is important to educate yourself. It’s really important to understand your disease if:

You want to raise awareness of IBD (because awareness means sharing the facts). 
You want to work with your team to self-manage (treatments differ for each type of Crohn's Disease and Ulcerative Colitis).
Self-care is important to you and is something you wish to actively pursue.

Understanding your disease means knowing where you can find reliable information. Support groups are fantastic in times of need and when you’re looking for reassurance, but as I said above, it’s unlikely your IBD journey will be exactly the same as anyone else’s. You need to learn all about YOUR IBD. I have compiled a list of reliable resources for IBD research. You will notice that this list contains no charities or bloggers, simply because I wanted to ensure this list would always be reliable, and even us fact-checkers can make a mistake from time to time! 

For the basic facts about Crohn’s Disease and Ulcerative Colitis, visit the #IBDSuperHeroes "About IBD" page. This page goes into some depth about IBD symptoms and extra-intestinal manifestations (meaning situated or occurring outside of the intestines) that commonly occur in those with IBD. It also explains the different types of Crohn’s Disease and Ulcerative Colitis and the common symptoms specific to each type. There are also a number of different ailments that are common in IBD patients. You can find more information on those here.

If you are newly diagnosed, you probably haven’t experienced the frustration that comes with being told or asked these types of things; “IBD, that’s like IBS isn’t it?”, “You don't look sick”, “So you just go to the toilet a lot?” It WILL happen, so let us bust some of the most common myths RIGHT NOW! Please do check out the 'Frequently asked questions and IBD myths' page. Some of these may not even be common knowledge to the clued up IBD patient! 

Now you’re fully clued up on IBD in general, I’d like to move on to your personal IBD.

Know YOUR IBD 

Learning how IBD affects you personally can be tricky. Just when you think you have identified the symptoms that tell you a flare is imminent, IBD can switch things up and present you with a whole range of new ones! Tracking your symptoms is the best way to keep on top of this. It will enable you to give a good overall view of everything during your appointments, or alert you of the need to book an earlier one. Tips for tracking your symptoms can be found here. Once you have figured out what your new “normal” looks like, it will be easier to recognise when things are not. Knowing when to contact your IBD team could be the difference between a short flare, and an uncontrollable one that ultimately results in surgery. It is always worth reporting anything out of the ordinary to your IBD team. Do not be afraid to get in touch with them because you are not sure if the problem is IBD related. If you’re still not sure, some of the factors to take into consideration can be found here.

Before, during and after your appointments

Communicating with your healthcare team is really important. To do their job properly, they will need your input, and at this stage, you should be passed any embarrassment when talking bowel movements. If you have an IBD nurse, use them! Most are contactable by phone and by email, should you have any queries or health problems relating to IBD between actual appointments. They can also make appointments for you sooner if needed.

You may find that you think of lots of questions between appointments, but can’t actually remember any of them when the time to attend actually arrives. Treat yourself to a new notebook that you can dedicate to IBD. Whenever you think of a question, write it down and make sure you always take it with you! If you have been tracking symptoms, it’s worth taking a look at these before you go to your appointment. Trying to decipher months’ worth of data during your appointment will mean you’re less likely to pay attention to be what is being said to you.

During your appointment, make notes of anything that you feel is important, and ask for clarification if you do not fully understand the terminology. There is nothing worse than leaving an appointment feeling overwhelmed by the amount of information you’ve just received.

You can help out your team, and yourself, by self-managing. If you have followed the advice above and done some research, and your IBD team know you have a good understanding of what’s going on, they should be more than happy to have you self-manage. This saves both of you time when symptoms appear.

Self-management

When you are not flaring, create a plan with your team for when you feel one may be on its way. Most hospitals are happy for you to take home blood forms and sample pots. This will save the initial wait for an appointment or postage, which saves you and your healthcare team time and effort. Just let them know that you have submitted samples, why, and then they can be keeping an eye out for the results.

When you are flaring, create a plan with your IBD team that tells you what happens in the next 6 months. This will serve as a guide for you, and them. For example, if the first medication you are taking can take 8 weeks to get into your system and improve symptoms, you need to know what happens if these are not effective. Will you try another medication, or will a test need to be carried out? Which medication, and which tests, and what happens after that? This plan is then in place to put your mind at ease and for the specialists to follow, meaning less time between medications should they not be working for you. This could also mean that you are made aware that surgery may be something to consider shortly. Having that bombshell dropped on you when you didn’t see it coming can have a hugely negative impact on your mental health. Don’t forget that you need to be happy with this plan, and if you are not, you have the right to say so, and to make changes.

Self-management also heavily overlaps with self-care, which means managing your disease and your mental health as a whole.

Looking after your physical health

You may find that you no longer feel as healthy in general as you did before you had IBD. Fatigue is one of the biggest causes of distress for IBD patients, and can leave you feeling not only physically, but mentally exhausted. Going from a physically active and healthy lifestyle to being worn out all of the time and needing to take daily naps can be a huge shock to the system. Socialising, and even hobbies like reading may have to be put on the backburner for a while, purely because your concentration span is non-existent. It may be that extra-intestinal manifestations mean parts of your body hurt, and you are incapable of doing the physical activities you’re used to. It IS OK. You’re not alone, and you’re certainly not the first person with IBD to feel like a big, fat failure because of it!

Learning to listen to what your body needs will serve you well, but it is not a skill that one develops overnight.

If exercise is difficult, but not impossible, consider some low impact activity such as tai chi, Pilates or swimming. Don’t forget that things like vacuuming the house, carrying shopping and cleaning the car all count too!

Sleep is majorly important. We all know that we’re supposed to rack up 8 hours a night, and the chronically ill could likely use a bit more than that, but it’s not always possible. Pain, toilet trips and side effects from medications such as insomnia all play havoc with sleeping patterns. Whilst sleep won't help with fatigue, it is important for your body and mind to recover and function properly. When you sleep, your thoughts and actions from that day are essentially processed and filed. If you do miss sleep at night, grab a nap when you need to!

It took me a long time to realise that the world didn’t stop turning without me. I didn’t drown in dog hair if I didn’t hoover every day, the world did not end because I didn’t cook for 3 days and just ate sandwiches, cereal and toast, and no-one thought badly of me for skipping social media for a few days at a time.

Obviously, a large part of keeping your body healthy is dependent on what you put in it…

Eating and drinking with IBD

There’s no one-size fits all guide that will tell you what you should and shouldn’t eat and drink with IBD. It’s one of the biggest issues that many of us have to contend with because we’re all so different. It will depend on whether you’re flaring, in remission, how your disease manifests and your symptoms. For example:
- If you have strictures, you may need to avoid foods with anything not easily digestible such as anything with skin and seeds, as these could cause pain or obstruction (blockage).
- If diarrhoea is the issue, you may need to avoid foods which increase stool output such as fruit, veg and spicy things.
- If you're trying to combat weight loss, high calorie "junk food" may actually be the answer; biscuits and cakes and carbs such as potatoes and pasta could help sustain weight. If you're losing weight because you are struggling with solid food, speak to your IBD team to see whether they can prescribe weight management nutritional drink supplements. In the meantime, protein shakes, Complan, yoghurt drinks and milkshakes may help.

As every patient is different, keeping a food diary to monitor how your body reacts to each food is a good idea. You will need to log things such as frequency, urgency, consistency, blood, pain and the amount of gas created. You can download these from the World Wide Web or find lots of different trackers in your app store! Just because something doesn’t agree with you one time, doesn’t mean you shouldn’t try it again a few weeks later. If you are trying to introduce new foods, do this a small amount at a time.

Whatever restrictions you’re working with, you need to have as healthy a diet as possible, which means eating the correct amount of food from each food group. Vitamin deficiencies are common amongst Crohn’s and Colitis patients due to dietary restrictions or your body’s inability to absorb them properly. You can buy over the counter supplements and your IBD team can arrange for injections or infusions if you have difficulty absorbing certain things still.


If you are unable to eat fruit and vegetables, try drinking juice as it can count as one of your 5-a-day. You may not be able to tolerate juice either, but it's worth trying to split the portion in two, or even 3 and drinking them throughout the day to see if this helps.

You should monitor which drinks work for you, in the same way that you would with food. Some people find that alcohol, carbonated drinks, fruit juice or caffeine affect symptoms.

Staying hydrated is really important. How much water YOU should drink is actually based on a number of factors such as your health, weight, the local climate and how physically active you are.

Many people like to add fruit to water, but do be aware that drinking too much lemon water can actually dehydrate you (because lemon is a natural diuretic). It may also cause other problems such as heartburn and tooth erosion because of its high acid content.

Staying hydrated may be more difficult if you have had part of your intestine removed, especially during the summer months. If you’ve had your colon removed, you will need to increase your daily salt intake too. If you have a short bowel, high output stoma or a jpouch, a homemade oral rehydration solution (ORS) will be beneficial when you’re feeling dehydrated. Check out this St. Mark’s PDF which includes the ORS recipe! Those that have their whole digestive system intact can use this recipe.

For a more thorough version, including information on a low residue diet, water-rich foods and signs of dehydration, check out this page

Medications

There are many medications used in the treatment of IBD, and new ones are becoming available all of the time. The purpose of these medications is to get the patient into remission. This means reducing the inflammation and the giving the digestive system time to heal.

Unfortunately, remission doesn’t necessarily mean you will no longer experience pain. Some of the damage IBD causes is irreversible which means there may be scarring and strictures left over from when disease was active.

Medications aim to suppress the immune system, and include: tablets, enemas, suppositories, injections you can do yourself at home and infusions which you must go to the hospital to have administered via IV.

Use all of your medications (attend appointments for treatment) as directed by your IBD team. You may feel like you should be able to stop taking medication once you are in remission, but sustaining remission is just as important. If you are confused by something and can’t contact your IBD team straight away, talk to a pharmacist as they are qualified to deal with queries about medications and interactions.

Be aware of, and keep an eye out for, any side effects that could be could be serious and seek advice from your IBD team or GP if you are worried. If you believe your medication is causing life-threatening side effects, you must go to A&E and take your medication with you.

Herbal medications may be taken to help with things like sleep. Please also be aware that it is not just prescribed medications that can interact with each other! This is the most comprehensive list I have found about these interactions

Preparation is key

Some people return to the lifestyle they were living before IBD diagnosis once they achieve remission. For others, life may never be the same, but, that does not mean life as you knew it is over. It is possible to still have a good quality of life, it just takes some adjustments and forwards planning.

Radar key to access disabled toilets and a "can't wait" card can be an absolute godsend. You can buy radar keys for next to nothing online, and #IBDSuperHeroes provide free can't wait cards! Just pop over to the group and ask!

If certain foods mean you will get stuck on the toilet, take some pre-emptive loperamide and treat yourself on occasion when you have no plans to leave the house. We have ALL done it! Worst case scenario… you sleep in the bath!

If you’re planning a long journey by car, plan the route via service stations so you’re never too far from a toilet stop.

If you’re shitting the bed while you sleep and having to get up, change the bed and shower which is disturbing your sleep far too often, sleep on a towel, a puppy pad, anything that will mean you only have to throw one small item in the washing machine, or in the bin. Store underwear in the bathroom so you can head straight there, and if you don’t have a shower, definitely invest in one. You can pick up bath/shower mixer taps from £20!

If you fear to leave the house because you may have an accident, prepare yourself an “emergency kit” containing anything you may need, from tissues and wet wipes to spare underwear.

If you have joint pain and you can find something that helps, have a blowout and have an active day. Whether that means covering your entire body in weird creams every hour or sticking heat pads EVERYWHERE, so be it!

Whatever your main issues are, don’t give up on the hope of finding a way around them. If you can’t think of solutions, pop along to a support group and ask them! 

Looking after your mental health
Struggling with mental health issues as a result of living with Crohn’s Disease or Ulcerative Colitis is not uncommon. Some IBD patients fear to leave the house in case they have an accident, whilst others grieve for the life they had before. Some struggle to deal with their new body after undergoing surgery, then there are side effects from medications that may change how we look or feel. The possibilities for the cause are endless! Here is a blog that includes the experiences of those in the IBD community: Do you suffer from mental health issues such as anxiety or depression due to IBD? 

There are a number of different avenues to consider if you don’t feel like you’re at a stage where seeking professional help is necessary:

Let it all out! Whether you choose to write things down or have a conversation, not keeping what is bothering you bottled up is better for you - a problem shared and all that! If you have family or friends you feel you can be completely open and honest with, use them!

If you’d prefer to talk to those a little less close to home, who understand and have experienced similar, online support groups can be a breath of fresh air. It can feel like those close to us don’t really care, and often it is simply that they cannot understand the things we’re physically and emotionally dealing with. Sometimes, just someone else validating that how you feel is OK can help enormously.

Many people find that exercising mindfulness or meditation helps. There are many free mindfulness and meditation apps available in your app store, so if you think this may help, do a quick search a download a few!

The mental health specialist at my local GP surgery recommended a number of websites where you can access FREE online cognitive behavioural therapy (CBT), self-help etc. You can find that list at the bottom of this page.   

If you still do not feel yourself, do visit a GP who can refer you to the right therapist or prescribe something to help! Sometimes, your mood cannot be fixed by any form of therapy because the issue is actually caused by a chemical imbalance in your brain (just like mine), and adding another medication to your daily handful may be the only solution.

Relationships

Unfortunately, it is pretty common for relationships to break down after diagnosis. This can be due to the fact that some of these relationships were based on shared interests, which you cannot actively take part in at the moment, or it could be because your priorities have changed. Sometimes, the people we spend time with are not true friends, and when it comes to needing those people to support you, they don’t actually want to. All of the changes in my relationships I see as positive. It’s helped separate the wheat from the chaff. Here is a blog which includes the experiences of 15 people from the IBD community: Has IBD affected your relationship with friends and family? 

Romantic relationships and dating can also experience problems. It’s awful to hear that relationships have ended because of disease or surgery, but it does happen. I think the important thing to remember is that no-one that truly cares for you would leave because of either of those things. Instead, they would be concerned, caring and supportive. Anyone that does leave is ultimately doing you a favour. They do not deserve you. Here is a blog which includes the experiences of 15 people from the IBD community: Has IBD made it difficult in terms of dating or sustaining your relationship? 

NEVER, ever feel guilty about your limitations or your feelings.

In conclusion

The unpredictability of IBD can be extremely frustrating. For me, it’s THE worst part. It’s distressing to feel that you have no control over certain aspects of your life. There WILL be times that your life feels extremely difficult, but you do not have to go through it alone, and each obstacle is not impossible to overcome. Many of the symptoms that make you want to give up on life are only temporary.
Having a place where you can talk to those that understand is priceless, and can lead to some really valuable friendships.
Trial and error is the name of the game! Learning about how IBD, symptoms, physical activity, food, drink and medications affect YOU is of great importance!

I hope this blog has been useful, and if you ever want to chat, vent, ask any questions, you can find me in the #IBDSuperHeroes Facebook group, or on Twitter or Instagram.