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.

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

An Introverts Guide to Talking about Crohn's symptoms

Talking about Crohns and IBD can feel uncomfortable, even with Doctors. Add in my shyness and an especially the good looking Doctor. The internal cringe is strong. There have been many times when I have wanted to hide in an appointment when I need to talk about bowel movements to a cute doctor. Even with a chaperone present. 

But then discussing bowel movements is uncomfortable for anyone and why I try to say bowel more often these days when talking about my symptoms. Bowel bowel bowel.

Until you get there though here are some tips that have helped me talk about Crohns. And with practise you too will feel comfortable with the word bowel.

1. Note down triggers and symptoms - rather than try to remember what you think may have cause a symptom, making a note on your phone or in a notebook can make an easy reference to talk about your condition with doctors or disability assesors.

2. Practise being specific - If you feel uncomfortable with words like diarrhoea or mucus instead of just saying "I don't feel well" write down your symptoms on your phone or notebook and show that to your doctor. They can read what your symtoms and ask questions if they need to. Just make sure your handwriting is clear or your phone font is extra large.

3. Be Honest - Acknowledge that your symptoms will affect your ability to do things and tell your doctors when it does. Speak to your health care nurse or disability support to get any help you need early. Even about the "minor" changes in your health so your docs can have a clear picture. This helps in asking your doctor for medical letters to clear you for things. I asked for an all clear to travel letter at an afternoon appt and by the next day my doc had sent me my letter. All I did was talk about how I was able to manage my current symptoms. Having treatment in writing and current coping mechanisms helps when you need to visit new doctors and you need to give a history.

4. Ask Questions - If something changes in your symptoms or you want to find out more about your condition asking questions can help you understand IBD more. There are forums everywhere to ask people. Depending on your hospital you may have the nurses email. Drop them a line when things crop up don't wait to see a doc. I know I find it easier to write down my problems than say them out loud. With more knowlege you can gain confidence. And more confidence makes it easier to speak about your condition.

5. Use a Talking Toolkit - Crohns and Colitis UK have created a Talking Toolkit. Very useful when you are struggling to find the words you want to say. Take it with you to the GP or doctor. You can use the list as talking points and it's a great way to ensure you cover anything you are worried about. While you can contact the doctor after an appointment to let them know of anything you missed, it can feel easier to and save time to say it in one meeting. That way you can leave each appointment feeling clear that the doctors know how you are managing, and with a game plan ready between the next appointment