My Crohn’s is happening all the time - I’d really like a break now

In the 2 years I have changed medications twice. To some this may seem like an unimportant low number but for me each change has been devastating. 

I had been able to live well enough for the past 10 years taking a weekly injection of Adaluminab. The packaging changed a few times but the biological had remained the same. In that time I had finished university, travelled and lived abroad, fallen in and out of love, COVID happened, I found a job and promptly realised I never wanted to work a 9-5.

There were challenges. Relationships had been too stressful, I’d compromise with my health to seem easy going. The heartbreak for me can only be worked through in the most dramatic of ways. Laying down in corpse pose, tears streaming down, and Amy Winehouse reminding me “I should be my own best friend”.

I had been late to nights out with friends. Standing at my front door, dressed and ready to leave, only to realise that I needed the bathroom one more time and if I went now I would miss my train and our dinner reservation.

I planned my days around meals, realising the menus at a suggested restaurants didn’t serve anything I could eat. Awkwardly advocated for myself to ask for modifications to items or requested we make a stop so I could pick something up.

I had played by the rules for 10 years and managed for 10 years. It wasn’t until a stool sample came back with inflammation markers close to 1300 (a healthy person is less than 50) that I realised that the cracks I had papered over could no longer be ignored. My health was on a worse decline that I had allowed myself to acknowledge.

The first medication change felt heartbreaking but I remained positive. I had done infusions before. This would be light work compared to the first time.

The weeks before I started university I had rushed to the hospital. 1 surgery and 2 weeks of inpatient treatment followed by 1 year of infusions. The meds had eventually stopped working but the routine of infusion and explore London had made seemingly bad days manageable, and allowed me to memorise my favourite tour of the National Gallery. When the change has come it had untethered to my hospital and given me freedom by way of weekly injection.

Now we were back. This was just an infusion, some loading doses initially and then at home infusions, I could do that. Coupled with a restricted diet and supplemental shakes, this too would be fine. I had done this all before. I made it work, I went to Korea, attended a wedding and underwent exploratory surgery, in that order. Light work for 6 months. So what if I had 1 month of down time, skipped most social events in my calendar, and packed a suitcase of food for my holiday. I could still live my life in a way.

Then the results came back, the numbers were still too high at 700. 

It was working but not enough. 

Another montage of heartbreak and devastation, this time tears streaming down my face while I sat on the Elizabeth line. In the cartoon it brains exploding off, bodies falling boneless. In real life it feels like your internal landscape has been turned into a desolate wasteland. Like after a war, the air is gone and rubble of all your effort is all that remains. As I said I like to process heartbreak in the most dramatic ways.

The second change. I’m cheering in the new year and celebrating my 30th birthday, in a few weeks my new medication arrives. The hope that this year will be different while managing the anxiety of “what if it doesn’t”. A daily pill. I can do that. I did it for 20 some odd years.

The clock is reaching that 6 months marker. I do an internal scan daily and check my poops. Blood? Consistency? Do I feel any inflammation or Joint pain? My nurse is on speed dial this time. I want to be ahead of this thing. 

I’m making plan for the later half of this year, I don’t have time to be sick unless it’s scheduled this time. I continue to plan my days around my condition, forego events, and bring my own food to parties. I’m playing by the rules as they always have been. This time I am half agony half hope. If this one works, i can stop worrying about the next month. Perhaps I can look forward to the next 10 years.

Dear Diary, it's Day Surgery Day

Dear Diary,

It’s Day surgery day. That means an early morning start, with no sleep because I've been anxious all night about one thing.

My last meal was at 2am and I am not allowed to drink any water. Today will be a lot of waiting and shuffling around.

The nurse checks me in. Consent signed✅️ Not pregnant✅️. Time to wait. The next visitor is the anaesthetist. I always ask what she plans to give me after a bad experience many years ago. I mention being cold the last time I was coming to from being under K (relevant for later). A trick question - "what I ate for breakfast?" "Nothing" - and a few reassurances, she double checks of my allergies and I wait some more.

The surgeon comes round next to check we are on the same page about today’s procedure. Consent forms are checked again. I make sure to request my sick note now because post anaesthetic delirium will make it hard to remember. This is step 1 of a longer term plan so it should be straight forward. 

I'm shuffled to the next floor to wait as I'm up next. Time to get ready to go under. This is the part I was anxious about - the cannula in my hand. I have had these many times and it still isn't easier but she is good and we manage after a little wiggle on the first try… God be with me… 2…1. 

The body-mind disconnect while coming out from under is such a strange feeling to describe. I don't realise I'm shivering until a nurse offers a warming blanket. I’m struggling to move my arms for observation. I'm not sure how much time passes. 

The next time I manage to look at a clock is 3pm. I need 2 hands help me to the loo as the meds wear off so that I don't fall in. Nurse and a sister. Small but strong arms support me either side. Look up and straight - no matter how much you want to close your eyes - you won't fall. 

A few hrs later and a delay from pharmacy I'm able to leave. First stop food.

Summer Mindfulness Activities

Summer break is here. Here’s some tips to enjoys a slower more mindful summer through the chaos.

1. Find a comfortable spot outdoors and close your eyes. Focus on the sensation of the sun on your skin, the breeze rustling leaves, and the sounds of nature around you. How does this grounding experience make you feel?

2. Take a leisurely walk in a natural setting. Pay attention to the details you often overlook, such as the intricate designs of leaves, the patterns in the sand, or the different shades of green in the trees. How does this focused observation change your perception?

3. Set aside a few minutes each day to sit in a quiet space. Close your eyes and take deep, intentional breaths. As you inhale, imagine drawing in positivity and peace. As you exhale, release any tension or negativity. How does this practice influence your mindset over time?

4. Sit or lie down in a comfortable position. Close your eyes and listen to the sounds around you, both near and far. Allow each sound to come and go without judgment. How does this auditory mindfulness exercise affect your state of mind?

5. Dedicate a few minutes to a body scan meditation. Start from your toes and gradually move your attention upward, focusing on each part of your body. Notice any sensations, tension, or areas of relaxation. How does this practice help you become more attuned to your body?

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

10 things that make a Crohnie Happy

1. Soft Toilet Paper - Asda Shade is my number 1 choice. I have tried all kinds of “soft” toilet paper. Nothing has yet to change my mind about Asda Shades. Catch me in hospital carrying around my own roll because I refuse to use the hospital sandpaper.

2. Bidet - Nothing feels better than feeling squeaky clean. My first visit to Japan ruined me, and since then I have been waiting for the day I could design my own bathroom with a Bidet toilet. Since that day is not going to be soon, I use a travel bidet. Add some epsom salts for those extra sensitive days. I own a HappyPoo travel bidet which has saved my butt when soft TP has not been available.

3. Free toilets - Nothing worse than searching for the loo and discovering you’ll have to pay 20p. London does have free toilets but once in a while the urgency takes hold and the nearest toilets you can find cost money but you now have to find your card in the bottom of your bag.

4. Fluffy socks - Something warm and comfy. Socks are a big must and the first item to enter my hospital bag. Scan rooms are cold and if my feet get cold I feel cannot get comfortable.

5. Satin Pyjama Bottoms - I exist exclusively in hospital gowns when I am admitted but I do wear satin trousers to keep cool and feel a little more covered.

6. Moisturiser - La Roche Posay Cicaplast has saved my skin from hospital air. Though it gives me a ghostly look. My daily moisturiser is the Nurtic Intense by the same brand. My Skin feels plump and well cared for.

7. Headphones - When the ward headphones stop working being able to pull out your own wired headphones has meant I can watch Bargain Hunt without relying solely on the subtitles.

8. Toilet spray - V.I.Poo‘s Royal Flush is my go to pick. It’s clean, fresh, and covers some of the most nuclear of bowel movements. There are many on the market for pre and post flushing. Feel a little less self conscious when I experience urgency at Westfields.

9. Allergens Menu or an Allergens key - my number 3 pet peeve is having to read an allergens list. By the time I work out what I can eat, the table has received their own food. I always enjoy a restaurant that makes an effort to make ordering easier.

10. Short wait times - Nothing makes me happier than a hospital visit that is under 3 hours. Before I was diagnosed with Crohn's disease I would spend whole days sat in waiting rooms as other patients were seen before me even when I arrived first. These days I can be in and out of hospital within 3 hours but I never forget those long days.

    
    
    

A Crohnie in Copenhagen - Story Time

 A siblings weekend jaunt to mainland Europe became a battle between me and Murphy’s Law. A weekend to rival the plot of Lemony Snicket’s A Series of Unfortunate Events. Younger brother and all

My train to the airport was delayed by 1 hour. The straw to my entire travel plans camel back. Airport, Food, Security, Toilet, Water, Plane.

I was already feeling tense from travelling for the first time since COVID and my anxiety was doing a number on my insides. Once on the train I realised that I had forgotten to eat my lunch earlier. With so many food restrictions I knew chances of finding food past security that I could eat would be slim to non-existent.

Upon arrival at the airport, the security line was barely moving and our flight was “on time”. We skipped looking around at resturants before secuirity and joined the queue. Once passed security all the restaurants that catered to my dietary restrictions started closing. Murphy 3: J 0 and starving.

After an hour in the queue for Whetherspoons and after some gluten containing chicken wings it’s apt that this does remain bad. My travel anxiety and the wings started translating to nervous bowel energy. And the 5 minute bathroom break almost led to us missing our flight #crohnielife.

Exploring Copenhagen was less dramatic. A stark contrast to the apparent battle to get in and get out of the city. There’s an array of gluten free and vegan restaurants round the city. And if you can ride a bike it’s fairly affordable to explore.

You’d expect that the journey back could not be as dramatic as the journey there but somehow it took 3 trains to get 1 stop. A 18 minute journey became a 1 and a half hour quest to get to the airport.

At Central Station the train on our ticket kept getting pushed back with seemingly no end in sight, so we opted to just catch the next train that arrived. The next train made it 100m out of the station and broke down. They attempted for 40 minutes to get the train moving till they eventually gave up and we headed back to Central Station. 2 trains, 1 hour, 0 progress, 100 % stressed.

With our flight departing in 2 hrs we started looking at our options. Taxis: Way too expensive, the traffic was unpredictable and the jouney would be way too tight, also how would we get our money back for these train tickets. Bike: riding for 1 hour was out of the question.

Then the third train arrived.

We made it to airport with our flight leaving in 1 hr, and a 30 minute security line ahead of us. Leaving us just enough time to pick up a souvenir fridge magnet and run for our gate.

Lesson learned: never trust transport to the airport to be on time. 

Phone a Friend

 

Talking about Crohn’s

"If something happens I will tell you"

I recall the days I used to sneak off to drink Modulen with Nesquik Magic Straws during lunchtime. Or the days when I'd sleep in the medical room because I was already exhausted by 11am.

The inevitable conversation we all have with friends... "I have Crohn's disease" followed by confusion or, in the rare instances, "That thing Dynamo has?" ...can be a challenge to navigate. As a child I would hide my condition (as much as a 6 year old can) and growing up I avoided talking about it out of sheer embarrassment.

Secondary school, was the first time I spoke about my Crohn's to friends. I'm not even sure how the topic came up, but I do recall some very "serious" conversations on park and school benches. As I've grown older these conversations have become easier and more casual. In the last year, I have probably spoken more openly about Crohn's to my friends, than in our 10+ years of friendship (no benches required).

The lockdown slow down has taught me many things, but especially: how to be more open about my condition. My friends have always been my first point of call whenever something good has happened or I needed advice; but my condition was always a thorny subject for me. Over time though, I've come to realise that, talking about my treatment, and the whole host of other things that accompany Crohn's, has allowed them to understand this part of my life better and in turn me as well.

I still feel uncomfortable when they express concern for my health "how are you" is a question I want to dodge, alongside the "dating" questions from family. (The answer to both being: "the same as last time") I dislike seeing them worried, and knowing that it is out of concern for me, has always made me feel out of sorts.

Last year I made a promise though- "If something happens I will tell you". I have found that offering information preemptively, allows them to stay up-to-date with "how I am" without me feeling some-type-of-way when they ask.

Are you a sit down serious conversation type, or do you prefer to drop it in casual conversation? Either way, having these conversations becomes easier with time and practise. If your not sure what to say the best opener I've found is "I have Crohn's disease" then tell as much or as little of your story as you are ready to share.

We can break the stigma together. One friend at a time.

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

What's in my hospital bag?