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?

Long Haul Travel Tips

I recently got back from a trip to South Korea. Being on the road from 3am on Wednesday and finally getting to my hotel at 3pm on Thursday was intense to say the least (allow for 8hr time difference). Over 24hrs of travelling, plus jet lag will have people saying you look tired - so here's what I do to help myself.

My number one holy grail piece of advice is - get airport assistance. Ideally get in touch with your airline 48hrs before your flight but if you're reading this while on your way to the airport, you can request the assistance you need at the check in counter. Some airport have more... assistance on hand than others (In Seoul I had to wait 1hr for my assistance to arrive). The sunflower lanyard is univerally recognised, at least in airports, as a way to indentify people with disabilities (if you don't have one - get one from the assistance desk, you can reuse it every time you fly)

The assistance I get in airports is the same:

Access to priority lanes through security.

Access to priority lanes in customs and immigration.

Someone to walk with me through the airport (I like this for long trips mainly. Having someone to help navigate security while carrying medications is a massive mental load off)

An aisle seat on the flight

Access to preboarding

A cart to get around - which was very useful on my return to Heathrow

I did get offered a wheelchair at every airport. I only accepted in Amsterdam after we got to the gate and the person accompanying me was informed we'd have to walk to the other side of the airport for precheck. I was able to board the flight early but at what cost. I could feel people staring at me, wondering why I was in a chair because of the invisible part of my illnessess. The person pushing the chair, super sweet and kind though.

I should add here preboarding is the best thing and worth a few awkward stares. I was able to get to my seat before other passengers and sort out what I needed during the flight. Eye mask, face mask, headphones, compression socks, nutritional drinks. It's also an ideal time to a chat with the air stewards if I need store meds and check my access to toilets.

I've done long hauls trips many time and they are usually a cake walk, when I'm not flaring. But I am in a flare right now. And I haven't been to Korea in 6 years.

I did get the go-ahead from my doctors before I booked the flight and made sure I got travel insurance that same day. Shop around;  there are many insurance companies that cover pre-existing conditions but you do pay a premium. I paid around £65 for 10 days. I got mine through my car insurance comapany as they had an offer for adding additonal policies. Getting insurance is an added layer of protection if for any reason you fall ill or need to leave your holiday early. Booking it asap, gives coverage from the day you purchase the insurance to when you return from your holiday.

My final tip of course is bring food and snacks. I had breakfast with me because I'd driven to the airport before dawn. I had a 1hr flight to Paris and a 2hr layover, so food wouldn't be served until well after 10am. I wasn't prepared to navigate French duty free for anything more complex than water as I am on a restricted diet. I panic bought rice cakes and made too many rice flour rotis just in case the day before, which came in handy around lunch time.

Remember to carry a water bottle and stay hydrated.

My long haul essentials

Assistance

Insurance

Food

Compression socks

Face mask

Water Bottle

Sunflower Lanyard

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