27.03.2025 MRI - Breath In

I've been riding the post MRI pain this evening as the contrast and bowel prep, work their way through my body. The pain feels nauesating. I can't lay down. I can't stand. I don't want to sit. I'm hungry but I don't want to eat. I want to cry but the pain of moving to do so means it's not worth it.

The pain I am going through to work out how bad things are, is ironically also really bad. 

~

Down 500mls of prep in 2 minutes then sip water for an hour. 1hr of waiting then a quick change. I'd usually go to the loo at this point because that's a lot of water but I was late to this appointment and these toilets haven't been cleaned. The nearest toilets are outside to the left of this department. I opt to wait. I don't need to go urgently I say. (big mistake, huge!) 

I'm used to this feeling and I close my eyes. Not quite asleep not fully awake. Hold still, Breath in, hold, breath out.

Mid way through the scan as I am falling into a state of half awake dreamlike state, I feel it. The feeling of urgency hits me and I try not to move. There should be 10 minutes left or 15. If I squeeze the emergency button will I be able to stand and make it to the loo or can I wait and get this scan over and done. I wait another moment, then another, I think I'll be okay. The feeling passes while this internal debate takes place and I hear the blessed words a few moments later almost done. I drift off further and I am startled awake by the sound of a door opening. Done

No one can tell what I've been through. I get changed and sit for a bit as I come back to myself. Laying so still and falling into such a deep dream like state has left me feeling numb and drowsy. Appointment over, first stop the toilets on the left.

I haven't eaten since last night and there are no restaurants I can visit nearby. I would have brought a snack and I had time this morning if my train hadn't been cancelled mid way through my trip to pick one up.

~

My 9-5 today. I'm trying to breath through the pain. I tried pain relief but that feeling of knotted insides won't leave and the pain comes back like a rolling wave. I just call them hospital appointments but sometimes they feel like battles I've barely survived. 

Somedays I wish I was a plant. Sitting in the sun and photosynthising the energy I need to exist. But I live in England and these sunny days aren't predictable. I am eating to live these days. By the time I'm done my food is cold. I barely made it through. Tonight's going to be rough. I'll spend tomorrow catching up on the sleep I won’t manage to get tonight.  

13.03.25 Day One again - Crohn’s all over again

There’s one star in the sky that my phone is able to capture as I try to take a picture of the night sky to commemorate the day I go back into the trenches of a flare. The numbers are all bad. I was hoping the test was a fluke or that things could be managed with diet but today I got the news. New meds, liquid diet for 6 weeks, and more testing.

I am grief. Deeply sad and disappointed. I want to cry again the most. I want to weep for myself, I feel so sad when flares happen. I’ve never thought that life should be something that happens to you. You are meant to make things happen in life but there are times when life does happen to you. And this illness happens to me. 

I’ve been okay for a long time and managing for a long time, and it turn out all that managing and okayness wasn’t enough. And my heart breaks some more. It means I now have to find a new way to be okay. I am heartbroken.

I was meant to travel New York this year and make a big thing of it. NY in MaY. I was meant to be booking my flights whilst hanging out in the waiting room for my MRI scan. Travel long-distance takes its toll but I could plan around it. May is a little over 6 weeks away. And now all I can think about is “Will I even be able to eat on the trip.” I don’t even like American food. Their chocolate sucks, and I can’t eat pizza or pretzels. 

Then I think about about my plans for this month and year, how am I going to explain this to people again. Sick again. Sorry we can’t do any food related plans for a while, or anything to strenuous, or too far from a toilet, or for too long. They kind of know my condition but they’ve seen me well for 10 years. What will I do with my tickets to Beyoncé and Kendrick.

Just when my life felt like it was getting normal, routine and medications down and I could do just about anything. Even go back to school. A spanner has been thrown in the works and I have to find a new way to keep going. I want to cry. I was good. It’s sounds silly. I did everything I was meant to, eat well , sleep well, stayed active, reduced stress and then and then...

This is day one. Again.

Things are about to change quite dramatically just when I was feeling normal. Truthfully it is easy to forget how horrible Crohn’s is when things are going well. I could control my symptoms and predict them. Now I like I’m heading into a dark cave with no end in sight.

This year I wanted to feel confident about going out and talking to people and make new friends. I had just learnt how to manage the fear always in the back on my mind when I would go out. I had a routine and system and now…

I’ll take my own advice because I will be okay. No matter what happens. The cards you are dealt don’t matter, it’s how you play your hand.

I’ve changed meds before. I’ve been on a liquid diet before. I will be okay

3 Sites for a Crohn's Expat in Beijing

 Crohn's disease in Chinese is 克罗恩病 Kè luó ēn bìng.

In 2018 I packed my bags and moved to Beijing. It was an easy choice for the trip of a lifetime, but it was so hard to find any information about what life was like for a Crohn's Expat. I spent 3 months before departure researching: local hospitals, IBD doctors, medications, and insurance and trying to find out any information about life as a Crohn's patient in China.

Here are some useful sites I found to help you start planning your travels:

*The Beijinger - a Beijing Directory and news source

https://www.thebeijinger.com/

• I found addresses for local hospitals - some places listed fees and included reviews

• It's not always up-to-date and you occasionally have to try a few variations of search terms to find where you are looking for but this was the best directory available.

Crohn's and Colitis UK - for insurance information

https://www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/insurance-ibd

• Health Insurance - I could not find an affordable provider who covered my Crohn's as it came under pre-existing conditions.

• I opted for Travel Insurance - I was covered to fly back home or receive emergency medical treatment if I went to hospital. I did end up flying back home a couple times.

IBDPassport - for IBD hospitals around the world

https://www.ibdpassport.com/

• I was able to find hospitals in my area of Beijing with an IBD doctor

• Some hospitals also listed medications they had available (my biggest concern) like Azathioprine.

While this list is by no means exhaustive, these sites were a great starting point for planning. My two years were challenging and fun, and no two hospital visits were ever the same. Having these as a reference point before departure made travelling a lot easier for me.

If you know of any other websites let me know in the comments.

~J

Flights, Crohn's, Medication

 Having Crohn's often means taking medication at specific times. Travelling with temperature controlled medication is always a challenge. I currently take Humira and as someone who loves travelling I have had to figure out how to take my medication with me on my trips.

Here are some tips I have learnt for carrying my Crohn's medication with me.

Flights

1. Ice ice baby and an insulated cooler bag - I have reusable gel ones. they are malleable enough that my meds can fit right in too, and no potential of accidental leaks

2. Ask your flight attendant - On some of my longer hauls, attendants kindly keep my cool bag in a cool storage place. On my shorter flights they provide some ice.

3. In case of emergencies, snap and freeze - The bit after flights but before the hotel can be unpredictable *flashback to the 2hr immigration line in Malaysia*. Having a some emergency snap and freeze packs on hand is a lifesaver and will help keep meds cool if queues take longer than expected *Side eyes my trip to Malaysia, seriously 2 hours in passport control*

Hostel, Hotels, Accommodation

1. Putting it in the fridge - Add a label if its a common area fridge, all the hostels I've stayed in had one. And most hotels will have a mini-fridge listed in room amenities, I also looked up photos of rooms and will email to check to be sure.

2. Finding a private spot - I never feel comfortable injecting in the bathroom of hostels. But there was one room where people rarely enter - the laundry room.

3. No one really minds - if the laundry room is occupied just use your space no one usually minds. If you still want some privacy ask reception, they are usually super nice and will lend you a private space.

Medication

1. Enough plus 1 or 2

Number 1 tip:

Call ahead. For flights, and hotels. Find out what assistance is available and don't worry if the person on the phone doesn't know, usually the people on the ground are willing to help if you make it clear that you have medication. Ask when you arrive and enjoy your trip

-fin