chronic health

Planning with Crohn's

Stay with me for this one – I promise it won’t be as boring as it sounds! If you immediately switch off when you hear the world ‘plan’, or indeed ‘regime’ or ‘strategy’, you’re not the only one! There are, however, benefits to planning when you live with a chronic condition like Crohn’s Disease – and more importantly, if your plans become routines, then they’re more likely to become second nature, and you’ll find yourself doing those tasks subconsciously. Here, I will share some of my planning tips, which you may just find helpful. It’s all about finding what works for you so that you can manage to fit in all of the things you want to do, despite your health condition(s).

planning with crohn's

Smartphone apps

There are tons of smartphone apps available to help you keep lists, plan activities and so on! I keep it fairly simple, making use of macOS/iOS Calendar, Reminders and Notes (or the same apps on other operating devices). The calendar function is ideal for noting down all of your appointments. This helps for looking to the future, but also looking back at when and where different events occurred. The reminders app is an absolute lifeline for me. I have separate folders for different activities (e.g. university, health, work, voluntary commitments and so on). I add in activities, and a date/time (or location) reminder. This definitely helps me to keep track of everything that I need to do. If I didn’t, I would definitely forget! From a health tracking perspective, this is ideal as a reminder for booking in my next vitamin B12 injection which takes place every three months, as well as for when I need to ring up my doctor to arrange routine blood tests, when I need to self-inject my treatment, and when I need to order my repeat prescription. You may think that you’ll remember everything, but when you are busy with ‘life’, on top of ‘brain fog’ which many of us can relate to, it’s easy to forget. I know I have done that in the past, particularly when it came to self-injecting my treatment. I would remember that I need it on Tuesday for example, which would be the two-week dose period. However, I would have a busy day at college, would forget when I came home, and then in bed at night, I would suddenly remember, and think ‘I’ll have it tomorrow’. But then tomorrow became the weekend, and before I knew it, it may be a whole week later and I still hadn’t given myself my injection. I knew that was no good, but I just needed to do something about it – which I did!

Finally, Notes are brilliant! Again, I have different folders for a whole variety of different items. ‘Health’ is one of those. I use notes for keeping track of how I have been feeling, as well as for noting down points to discuss with my healthcare teams. I also use notes to keep track of discussions held with healthcare professionals, either face-to-face or over the phone. It’s just another good way to have information at your fingertips to help with your care, while the discussions are still ‘fresh’ in your head. 

Scheduling in rest days

We all know what it’s like to live with a condition like Crohn’s – we have so much robbed away from us. As a result, when you are feeling on the better side, you will naturally try to fit in everything that you can. I know that I have been there! Though sometimes, it really doesn’t pay off. That’s why I try to give myself time and space to just ‘do nothing’ – because I know that’s what my body needs. In pre-pandemic times, I would avoid booking in too many back-to-back travels, so that I always had some time to recover. In the current climate, I do my best to block off certain days where I’ll have meetings, keeping overs ‘free’ to do work at my own pace, and also take it easy. It’s all about being in control, as much as possible, so that you give your body (and importantly, your mind) the time and space to breathe.

Leaving the house with everything that you need

Phone. Wallet/purse. Keys. Mask! The list goes on – but it’s really important to have everything that you need to hand. As well as the usual items that most of us require these days, I also have supplies in my backpack and car for every eventuality. This includes painkilling tablets and gel, anti-spasmodic tablets to help with cramps, laxative tablets if I notice a blockage, anti-diarrhoeal tablets if the opposite happens, lactase enzyme to help me digest products containing lactose and the RADAR key to access locked accessible toilets. This list can go on and will depend on personal circumstances. I always find it best to have everything stored in one bag, so you can ‘grab and go’. It may feel excessive, but you will thank yourself later on when you’re not caught short.

Knowing your triggers and avoiding them

Although everyone is different, we all have some kind of trigger which can worsen how we feel. For me, I know that stress is a key trigger for worsening symptoms. That’s why I try to minimise stress as much as is practically possible – although that is much easier said than done! That’s why you’ll generally see me planning to do work well in advance of deadlines, for example, and seemingly ‘being on top’ of everything. In reality, it’s much harder to do, and I do find myself rushing for deadlines still – but at least I have minimised that as much as is practically possible. I am also my own worst enemy. As a perfectionist, I place huge amounts of pressure on myself to succeed and to do everything to the very best of my abilities. While it’s a good quality to have, it isn’t when it impacts on your health. So, it’s really important to be kind to yourself, and to re-evaluate your workload if you find yourself totally swamped and feeling ill. Nothing is worth more than your health.

Do you have any other planning tips which help you to live with your condition whilst getting through life? Let us know in the comments and on social media! 

planning with crohn's

5 Things to Know Before Flying with IBD

By Leah Clark

Having just returned from a trip across the country, several travel tips about flying with inflammatory bowel disease are fresh in my mind. Whether your chronic condition is active, in remission, or anywhere in between, these five tips can help make traveling with #IBD a lot smoother and ensure that you can be prepared, calm, and have fun on the way.

Flying with IBD shouldn't have to feel like a constant state of turbulence. Follow these simple tips to ensure that your flight is a breeze.

Flying with IBD shouldn't have to feel like a constant state of turbulence. Follow these simple tips to ensure that your flight is a breeze.

1. Know Your Surroundings

Many people with inflammatory bowel disease need to take frequent trips to the bathroom, and that can be difficult when put into an unfamiliar environment. Fortunately, most airports have bathrooms near every gate, as well as maps that can direct you to the nearest one. If you are concerned that you will need to use a bathroom and do not want to have an accident, try and stay near a restroom until your flight is boarding. Some airports have private bathrooms as well with one stall that can make going more comfortable.

2. Prepare Your Own Food

As someone with a #restrictivediet, I know how hard it can be to find food I can eat at an airport. Airplanes and airports often have processed foods that can be prone to cross contamination, as well as a limited selection of foods that are not nuts, chips, and sugary snacks. If you're like me and need to be cautious about your diet, I recommend packing your own food and keeping it in your suitcase until you are ready to eat it. Just make sure the items follow the TSA guidelines.

3. Pack Medications Strategically

Following a tight #medication schedule can be difficult if the medication is not easily accessible. It's important to pack your pills in a small travel carrier or pill box that can be brought on the plane in a carry-on bag. This way, your medication will be with you at all times and available for you to take it when needed. Be sure to have a beverage on the flight, or purchase one after going through security if you need to drink a liquid with your medication.

4. Choosing the Right Seat

Lucky day when you get a whole row by yourself, but choosing an aisle seat can also be a good choice.

Lucky day when you get a whole row by yourself, but choosing an aisle seat can also be a good choice.

Certain airlines, and depending when you purchase your ticket, will allow you to choose what seat you want on the plane. If frequent bathroom breaks is common for you, I recommend scheduling your flights earlier than later and choosing an aisle seat. This way, you will not have to climb over people or waste more time reaching the bathroom. If you cannot choice an aisle seat, it never hurts to ask the person next to you if they are willing to switch.

5. The Day Before

With IBD, sometimes we overlook some of the basic health necessities that need to be addressed: sleep and hydration. Fatigue and dehydration are not new concepts to us, and it's important not to forget about these when traveling. Getting a good night sleep before the trip, as well as drinking plenty of fluids is very important. It's a good idea to take a nap on the flight (if able) and drink water while in the air, as well, when the travel day actually arrives.

Everyone's IBD is different and requires unique attention and care. It's important to know your body and know how travel affects it. Your IBD should not hold you back from living your best life and going wherever you wish. With these five tips, hopefully you will be better prepared and ready for whatever life in the air has to throw at you.

Love Yourself and Love Others: How I Started Recognizing the Support Within and Around Me

By Erin Ard

In honor of the month of #Love, I decided to write about one of the most important forms. #SelfLove!

Embrace every part of you. Your quirkiness, your sense of humor, your shyness, your health (and that sometimes, you CAN take a good picture).

Embrace every part of you. Your quirkiness, your sense of humor, your shyness, your health (and that sometimes, you CAN take a good picture).


You've probably heard the phrase "You can't love anyone else until you love yourself." It's said, with good intent, to almost everyone who is trying to find self-worth in another person's eyes. I am no expert on love, so I can't say this is always true. However, I do know that dealing with chronic disease, especially throughout your teen years, can wreck your self-esteem and ability to love yourself. *Ahem* speaking from experience.

I want to share how I learned to accept the terms of my new life, let go of internalized negativity, and love myself as I am. It took me years to recover emotionally from all the changes I faced because I never fully accepted that I had a #ChronicDisease.

I started to take strides in college when I began thinking mindfully about my experiences, emotions, and actions in every situation I faced. Introspection was my first step towards acceptance and being #mindful was my strategy.

I used mindful meditation to reflect on everything in my past and present. I became aware of my thoughts, emotions, surroundings, and accepted them without judgement. It helped relieve my stress as a busy student and appreciate everything around me while living moment to moment. Before mindfulness, I would often dwell on my flaws and insecurities, to the point that I had lost sight of my worth. Now, whenever my mind wanders or spirals, I accept my thoughts, bring light to them, and move on. The simple act of being mindful restored my self-confidence and helped me find my identity outside of my chronic health issues.

A little surprise from my sweet, forever valentine.

A little surprise from my sweet, forever valentine.

As I sit, writing in my old bedroom from high school, I'm starting to reflect on all the love I had even at my lowest. I now recognize the love I lacked for myself and the support that surrounded me from family and friends. My closest friends and family understood me and how the disease affected me. Because of them, I was able to overcome many trying events.

This month, my #mantra has been to love yourself and love others. I've learned that you're never really alone, even when you think you are. There is always someone thinking about you, worrying about you, or just wondering how you are. You will be surprised by the influence you can have on others. As a cute example, take a look at what my little brother made for Valentine's Day!


Remember to appreciate your own strength and the people who continue to support you.

 

 

If you want to learn more about the influence of mindful practice, check out this article on the stages of grief in chronic disease.

With love,

Erin