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.

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