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.

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

All Clear - Crohn’s Mental Overload

It's weird to look up one day and realise a whole year has passed. And Crohn’s and Colistis is running a campaign to #FacetheFacts

I started 2023 with hopes of a peaceful year and end it worrying about whether I could find time between my hospital appointments to see the Renaissance film. I didn't.

2024 started with me feeling like I was staring into an abyss and has ended feeling like the skies have cleared and I can face anything.

Let's start with a confession: I used to envy people with cancer. It's an odd thing to admit because I have seen how devastating and difficult it can be to live with. I was envious because the pain is obvious. It's complex how I felt because I often felt my pain was misunderstood but I was so good at hiding it. I was mad that people didn’t inherently understand the problems I was going through without them being told. We understand the paid and hardship that any Cancer brings, yet Crohn’s is still so misunderstood.

I would find cool surfaces to rest on when my stomach aches got so bad they made me overheat but teachers would think I was sleeping in class. Excluding the times I was sleeping in class - quick story

I was falling asleep in Biology summer classes. I was almost falling off my stool resting on backpack out of it. And my teacher yelled my name and said "if you’re going to sleep, get out". so I did. Turns out that was not the right thing to do. I was told by my friends after my nap in the sixth from common room that the teacher had been surprised that i had left. I'd say oops but I do tend to take things literally when I am tired  and he wasn’t a very nice teacher anyway.

Or I would be late to class because I was too embarrassed to use the toilets when others were around during break times. Or the pain I would be in walking or sitting or existing. Or the fear of food I developed during my worst flares making it impossible to eat without anxiety.

I thought I would be able to document my appointments so that others could see the process of going through a diagnosis. A let’s take the journey of discovery vlog. I recorded a lot during this time but the exhaustion of the process and fear really did put any thought of editing on the back burner. And then there was the telling people. It felt wrong to reveal to certain people in my life what i had been through in an online post so I held off even longer. Then who should know you are going to hospital for diagnosis before anyone else. I've had a few people die recently and it was only after they passed I found out they had gone through treatment. I was resentful that I didn't have a proper chance to say goodbye but then I realise how time and distance had separated us. Why would I be in the know? Who makes the cut for a personal announcement?

I also have a thing for dramatic announcements in inappropriate places. But a dislike for people sending well wishes all at once. I was getting ready to start telling family and friends that my mum would need support and to take care of my brother. But those words never came out, because I realise they had a tinge of resentment in retaliation to something someone had said or done. I sat during Christmas as my cousin was shouting about losing a point, would I see this moment ever again? How would people react if I said it now. Then in February I got the all clear. Well just more Crohn's to be exact. And while the weight was lifted, the fear and stress I had taken on would not dissipate easily. The C-word had felt so abstract till I was faced with it and suddenly I realised that I was not mentally invincible.

Now the question I wonder is should I tell people now so they understand why I had been acting so weird and sentimental. I'm still seeing the docs a little more than normal to monitor the Crohn's. And then my cousins father got sick and then was diagnosed with Cancer and my experience fell to the back burner. Now I wouldn’t be able to discuss it. I had just experienced the diagnostic process and been able to complain about my preferred anaesthesia (to a doctor). But here it was in front of me. Grateful it wasn’t me, sad it was him, confused as to how life had suddenly turned out like this. And then he died. 

Could you call this a confession post. I don't have Cancer. I do have Crohn's. 2024 did not start out the way I had intended but as is my favourite trope in Turkish dramas if the season starts well it gets broken and if it starts broken it gets fixed at the end they all learn to love a little better and cherish those around them a little more. - The post originally ended here but my counsin’s dad died in November when I had originally intended to put this out so I made a few edits to honour that. So I guess in true Turkish drama fashion someone beloved died in a final plot twist. 

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.

    
    
    

2023 New Year. Same Me

 Dear Diary,

It's finally the Lunar New Year - if January 1st hasn't gotten off to a great start you can use this one as a do over. It is the year of the Rabbit. The Rabbit in the Chinese Zodiac symbolises, peace, reflection, and quietness.

Time has flown. I feel like a different person from July last year. I am a little bit smarter - I learnt three new words: copacetic, quixotic, sennight to use in Scrabble. I started therapy, restarted driving lessons for the 3rd time, was a model in a catwalk show, finally spoke to my doctor about my leg problem.

Of all the holidays, I like New Years the most. It's a chance to reflect on the time that has passed and consider where I want to go next. Paris, Barcelona, Rome, Edinburgh, new hobbies.

Last year I felt lost, stuck, and sick. And by mid-year I couldn't figure out what changes to make. Choosing between a rock and an unknown place. My body wasn't working the way I wanted it to and I couldn't work out what was happening to me. A perpetual state of stress. Feeling unwell, feeling unwell to work, working to much to make up for time lost. Stress has always been a major trigger for my Crohn's, and dealing with stress requires a choice being made. Which in and of itself is another thing to be stressed about.

Some choices were simple, 1 pillow or 2. The correct answer by the way is 4 (head, back, two for feet). The more abstract ones , when it feels like the rest of my life hangs on that sole decision at that very moment; those choices I think are better made of the heart. I find that often times if I stick with the "logical choice", I burnout faster, feel resentful, get stressed easier, and ultimately untethered to my true self.

In hindsight, the choices I made with my heart, have mostly been right for me. Going to therapy was a decision made one night whilst laying in bed, because I felt like it. As was booking a cheap weekend flight one Sunday morning because there was no perfect time to go.

This year, I don't want to wait half a year to start figuring out what I should do. Being proactive about taking care of my mental and physical health is my priority.

New Year... True Me. I intend for to live this year trying to listen more to my instincts, taking better care of myself, writing every other week on this blog, and making the occasional vlog.

May this year be filled with peace and hope like the gentle spirit of the Rabbit.

27 vs 7

 Dear Diary, I made it to 27.

20 years ago my doctor were worried that I would not make it to 7 years old (my mum told me this, I vaguely remember a concerned looking doctor and terrible mashed potatoes). I have this picture from 19th December 2002. The hospital sent round some mascots to take pictures with child patients and hand out Christmas gifts. When I look at this picture, I remember watching a boxing match on boxing day and thinking that's what boxing meant. Or the doll I saw on my hospital bed when I went back to my room after taking this picture, it was pink.

It took about a year for me to be diagnosed. No one could figure out what was wrong with me as I lost weight. It's a growth spurt, an eating disorder, maybe she's pretending to get out of school. At 6 years old I was a pro at hospital visits, the routine of spending half the day in the waiting room, having a blood test done and being sent home.

I eventually met a doctor who cared enough to run one more test. It's hard to recal the details, but I do remember one day it was my last day in my local hospital and then I never went back. I was being referred to the Royal London Hospital in Whitechapel.

Over the years I have met many doctors and nurses. I can't remember all their names or faces. But there have been some stand outs over the years, the nurse who brought a damp sponge for me to wet my mouth because I wasn't allowed to drink water, the nurses who would teach me how to say please and thank you in other languages. There was a student doctor back in 2002, who would eventually become my primary doctor. Shout out to Dr L for taking care of me all these years.

I was diagnosed with Crohn's disease over Christmas 2002. The photo marks the first of many hospital stays, countless blood tests and investigations. I do wonder how many medical journals I am uncredited in, and if any med students wish for an autograph.

I had two photos from that day. One with Scooby Doo and (the one I still have) with Bubble. I haven't seen the Scooby Doo one for many years so I must have lost it at some point. Personally I liked and watched more Scooby Doo more growing up than PowerPuff Girls, but Bubbles was my favourite Powerpuff Girl.

The life a child patients is strange. Some days I feel like I have lived 10 lifetimes in 1, whilst running blindfolded through the a storm. I have experienced things that no child should have to go through. I don't remember a lot of things that have happened over the years, but I can remember how I felt. There is a quote from Doctor Who, No one can ignore the sound of children crying. I spent many nights listening to other children cry. I did a fair bit of crying myself.

Being diagnosed young has meant I missed out on many things, I don't recall a healthy version of myself to compare to. I was the sick kid in school who would take afternoons off. I never told my friends what I was going through. I was the kid with a strange feeding tube on her face. I was scared, blindsided even, by many things that were happening to me and at times could barely tell the doctors how I was feeling. I didn't know anyone like me and I often felt so alone.

It was the age of dial-up internet, and flip phones. There were support groups around but I was too young to know how to access them, and my grown ups weren't exactly tech savvy. My first phone was a Motorroler Razr which I got in 2007. The only place I saw people like me was on hospital wards. Not exactly the easiest time to make friends, when your puking your guts out.

These days finding other people with IBD is just a click away, you may even be watch them on TV (Any Abbott Elementary fans?). There are so many communities #spoonies and social media pages to meet other people like me. It's nice and I am a little envious too that I didn't have the same accessible support in my early days.

 

Having so many life milestones happen in a short period of time and over Christmas makes it hard to know when the best time to talk about my story. Do I mark it by the date on the photo, 19th December 2022 or the birthday I made it to? This year, I chose to mark it on my 27th birthday, another milestone, the start of my late 20s.

Many variations of this post have sat in my drafts and in notebooks for years. Everyone's IBD journey is very personal to them. There is a lot I want to say and some parts are easier to communicate more than others. The last draft before posting actually had the 2002 photo of me and Bubbles. But as I looked at it, I got so emotional I almost deleted this entire post, I am not ready to share it. After 20 years I'm not sure if I ever will be.

It breaks my heart every time. That smiling 6 year old, almost 7 years old, in her her blue butterfly pyjamas, doesn't know...

~J at 27

October Blue's and Mental Health

 Dear Diary,

"This is the time of year when depression increases. The way in which you rest is important. I hope you take in lots of sunlight and walk as much as you can."

October for me, always seems to mark the start of low mood winter. I can feel myself slipping back into depressive moods and accessing anxious thoughts. Discussing Crohn's and mental health is a little hard because it requires me to discuss emotions that are uncomfortable to dwell on, especially when I am actively trying to stay out of them. So I decided to leave my home and come and write this in the library. On the outside I may seem a little more together than I feel. But there are days when I want to crawl back into bed, and try to be a person on another day.

Indeed, last week I kept having some reoccurring worries as I was leaving my home: do I need the toilet, I need to toilet, if I go now I won't be ready in time, if I don't go there are no clean toilets around, thinking about this is making me late, being late is unprofessional. Before I found myself in a spiral of self criticism I just walked out the front door. I'll be late but I will be there, better to be productive for 1 hour, than stay in this spiral for 1 hour and do nothing

It felt like walking out in the middle of a fight. Before I could agonise with myself about my need for the toilet, I just left. I reminded myself, I would be back home soon with the comfort of my own home and toilet. If I needed the toilet that I could go to some public bathrooms, not ideal but also not the end of the world. I don't have to pause my whole day on an off chance.

These anxieties have followed me for a long time. Throwback to the days I would get dressed for uni lectures then stand at my front door paralysed by the fear and anxiety around feeling well enough to spend the whole day out. I wish back then, that I could have faced my fears head on in the way I am learning to now. 

CBT therapy has been extremely useful for me to manage my low mood and anxiety. The journey to finding the right type of help has been arduous and at times I did wonder if I would ever find something that could help me understand how I was feeling.

It's one thing to know that therapy, self-help books and meditation can improve your mental health. But it can feel like a waste of time, reading the books or attending therapy when they don't necessarily fit your situation. For every useful line of advice you find, you'll need to spend several hours reading through things that don't apply.

Or you spend 40 minutes of a 45 minute therapy session repeating something you had spent the entire last session discussing. How do you not get annoyed when your therapists only words of advice are "you are strong" "you should be kinder to yourself"? Internally I was yelling I already went over my fatigue being caused by Crohn's, and that that was making me depressed, which was making me stressed, which was causing my Crohn's to feel worse, which caused more fatigue. This conversation felt like an endless loop at one point with no hope in sight until I changed therapists and type of therapy.

It is not surprising that rates of depression are higher among patient with Crohn's disease and UC as compared to other disease and the general population.* The self help books I've tried don't write in the context of a pre-existing health conditions. And the approach I have encountered for those that do, has been to "eat yourself healthy," which can feel unhelpful when food triggers vary so widely between Crohn's patients.

I have felt hopeless and invalidated at times. What's the point of trying when nothing seems to be working right? Eating "healthy" doesn't help when it causes extremely painful bloating.

And what does getting mentally well even look like? Even when I am fine, I feel like I am biding my time for the other foot to drop, for another flare to happen?

It was timely then, that this year as I was finding myself slipping into my negative patterns, I found some things things that not only put words to how I was feeling, but made those therapy sessions make sense. A drama I had started by dropped earlier in the year: My Liberation Notes, I revisited on a whim. And a book I had reserved in the library 2 months earlier, becoming available: I want to die, but I want to teobokki by Baek Sehee.

I have found that my mental wellness journey is ongoing and evolving. I have found advice and support in conventional and unconventional places. A instagram reel recommendation for tv drama about healing, a book on Living with the Long term effects of Cancer*, a comment by a celebrity talking about their movie process, a doctor advised course of Vitamin D supplements, even in my own blog posts. 

I have made a note of anything that stood out to me so I could remember and use when I was finding life hard. Things to recentre and recite myself.

My liberation note was: I wish to be liberated from myself, to not internalise hurts and to get out of unhelpful patterns and spiral. To say what I need honestly and be more frank about what I am going through.

This line in Baek Sehee book reflects best how I am working on these things.

Whenever I feel weighed down by anger, sadness, irritation, or fear, I think to myself: I have to turn my gaze.

Crohn's does affect my mental health so I am working to build up my mental fortitude and find better coping methods for when things get hard or my pain become a challenge to manage. This year I am treading water to keep myself from feeling too low or stressed, an improvement on last year.

I hope one day I can meet October with a more hopeful outlook. Until then I will eat teobokki and continue to take small steps towards my own liberation.

~J~

*I originally picked this up because of its full title: Living with the Long-Term Effects of Cancer: Acknowledging Trauma and other Emotional Challenges

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. 

Day 1 - New Beginnings

 Dear Diary,

Deciding my first post is little daunting. What do I say? Hello? Secondly it's hard to decide where to start, there is a lot to say, almost 20 years worth.

In December 2002 I was diagnosed with Crohn's at the age of 6. I still remember the day; I was watching the TV on Boxing Day in my hospital bed and Dr C giving my mum the diagnosis. My whole life changed and sometimes I wonder what could have been.

I started this blog for a few reasons. I could share some of the challenges I faced, things I've learnt along the way and share my adventures with you.

I want to shout out my docs. Some of whom I met when they were med students and have now become professors. I really wouldn't have made it without you. Thank you.

A new adventure begins...