A Day in the Life with Infusions

A Day in the Life with Infusions

6:30 – My alarm woke me up as normal and I got showered and dressed with the thought of going to hospital instead of going to work. I made sure to dress in comfy clothes as an infusion always means sitting around for several hours.

7:00 – I had my normal breakfast of porridge, banana and honey, accompanied by my usual cup of Clipper Morning Tea. I choose to avoid caffeine when possible so I keep a well stocked cupboard of herbal tea. The Clipper Morning Tea is my favourite way to start the day although it’s quite hard to get hold of now.

7:30 – Following my breakfast I booted up my work laptop and ran through my emails making sure there wasn’t anything urgent that needed a response and thankfully there wasn’t!

8:00 – I set off for hospital (Royal Victoria Infirmary, Newcastle) for my 8:30 appointment and made sure to pick up my kindle and headphones to keep me entertained whilst being infused.

8:23 – Upon arriving at the hospital I bought a bottle of water and some crisps in the insanely warm hospital shop. I did the whole “it’s hot in here isn’t it?” to the shop assistant and she respond glumly with “yes I know, it’s going to be fixed today”. She’d clearly heard my line several times already.

8:26 – I walked into at Ward 51 (our own version of Area 51), gave them my name and sat down in the large ‘infusion’ room. There are about 10 big comfy chairs in this room, tables for people to put their things on and lots of cushions for backs and resting needled arms on.

8:45 – After being told to sit down anywhere, I got shifted around twice to accommodate a pop up clinic being set up in the same room. Musical chairs is a great pre-infusion warm up.

9:00 – A nurse walked over and took my temperature and blood pressure and asked how I’d been feeling recently. They ask this to ensure that I don’t have any bugs. If I did, I wouldn’t be allowed to get my immune system suppressing infusion. She also informed me that my infusion wasn’t quite ready yet and that it was on it’s way from the pharmacy. This is normal.

9:22 – A different nurse put a cannula in my arm and took two vials of blood. I’ll admit, I’m not entirely sure what the blood is for. I’m so used to having blood taken that it’s easy to forget to ask. At some point in the future I’m just going to install a tap on my arm, it would make life much easier.

Cannula ready to go
Cannula ready to go

9:29 – One hour after my initial appointment time and following a dose of hydrocortisone, I finally get plugged into my Remsima Infusion. The nurse describes the hydrocortisone as a way of giving my body a protective barrier in preparation for my infusion. For my previous 5 infusion I’d been given Inflectra but from now on I was told it will be Remsima. I was assured that the medications were exactly the same. The only difference is that Remsima is half of the cost of Inflectra.

The beeping bastard.
The Beeping Bastard

9:31 – I was offered a cup of tea or coffee and some shortbread biscuits. I’m always surprised that hospitals, especially in an IBD ward, only offer caffeinated hot drinks. Many IBD patients will avoid caffeine. I always bring my own tea bags and they’re happy enough to provide a cup of hot water.

9:46 – Another patient turned up to be infused, but with iron instead of a biologic. Normally there are several patients being infused at the same time but today it was very quiet.

10:02 – A beeping machine signalled that iron girl was done and ready for her flush. Beeping machines are a popular feature of infusion wards. A flush does what it says on the tin and flushes any remaining medication out of the tube and the patients veins.

10:12 – I tucked into my crisps as another gentleman got hooked up for his first infusion.

10:50 – Despite nipping to the loo pre-infusion, my earlier tea began to play on my mind. I unplugged my Infusion machine from the wall (the plug is just used to charge the machine) and managed to nip to the loo and back without setting the machine alarm off. Unless you get infused, you won’t understand that this is indeed a big achievement.

11:26 – A beep signalled that the Remsima was almost done and it was time to get a flush.

12:00 – At 12 on the dot the machine beeped again and that was my full infusion over. Apart from being tired, I felt totally fine at this point. Under instruction, a student nurse removed my cannula (it was her first time), and I made my appointment for my next infusion in 8 weeks time. It was incredibly hard to resist jokingly crying out in pain when the nurse removed my cannula but I managed to hold back given that she looked exceptionally nervous.

13:00 – I arrived at home after a quick trip to the shops to pick up supplys for lunch before opening up my laptop to check my work emails again.

14:00 – Following my lunch I joined the first of two one hour long conference calls. The first of which I needed to lead, the second I was able to just listen.

16:30 – This takes us right up to date with me writing this blog post. I’m feeling completely exhausted at the moment and have a splitting headache but other than that I’m totally fine. The headache is equally likely to have come from my conference calls, or possibly pre-infusion tension, than it is the infusion itself. I generally find I always have a headache after my infusions although normally it rears its head the following morning. After I post this blog I’m just going to relax for the rest of the day before returning to the office tomorrow morning. I may even have another go at cooking beer dough pizza if I feel up to it.

If anybody has any questions about receiving an infusion just send me an email or leave a message in the comments section below!

The Sheriff’s Jambalaya

The Sheriff’s Jambalaya

Something a bit different for this weeks blog. My dad used to cook jambalaya almost every week. I’m not sure where the original recipe came from but he tweaked it over years of cooking and passed this recipe onto me. Friends and family always ask for this when we have a get together so I thought it was about time to write the recipe up. I’m not the best in the kitchen so believe me when I say this is a really easy recipe to cook. Enjoy!

Ingredients for 3 to 4 servings

1 Onion sliced into 1 inch squares
1 Green pepper sliced into 1 inch squares
3 Celery sticks sliced into 1 inch squares
(Idealy you want equal volumes of onion, pepper and celery)
2 pre-cooked sliced chicken breasts
1 Chorizo sausage ring sliced (Make sure it’s good Chorizo!)
1 Garlic clove crushed (You can use a teaspoon from a jar or tube of crushed garlic)
2 Chicken oxo cubes dissolved in 400ml of boiling water
200g Long grain rice
1 tsp Cajun spice (this is where the heat comes from you can add more if you want)
1 tsp Mixed herbs (dried will do)
1 tbsp Oil

Jambalaya ingredients


  1. Put the oil into a large pan (for which you have a lid) and put the pan on the hob switched to about 3/4 of it’s maximum).
  2. Put the sliced chorizo into the pan and cook for two minutes stirring all the time.
  3. Put the pepper, onion, celery and garlic into the pan and cook for two minutes stirring all the time.
  4. Add everything else (chicken breast, rice, cajun spice, mixed herbs and lastly the dissolved oxo cubes )
  5. Stir so that most of the rice is under the water and wait for the liquid to simmer.

    Jambalaya before the lid
    Before the lid goes on!
  6. Put the lid on the pan and do not remove it until the end. Turn the heat down low and leave for 10 minutes
  7. Leaving the lid on, take the pan off the heat and stand for 20 minutes.
  8. Stir well and serve.

    Jambalaya ready to serve
    Ready to serve!

Let me know if you give it a go!

#SoCalledCures for IBD.

Chronic illnesses do not have a cure, yet this does not stop individuals claiming they know the secret to end your pain.

Following on from @ColitisNinja’s blog on ‘The Dangers of Miracle Cures’, several members of the IBD community on Twitter, including myself, have shared some of our #SoCalledCures. I.e Weird things people have claimed can cure IBD. I thought I’d document some of these in a blog and call out to hear some of the other weird and wonderful things people have been told to do.

People should learn to spell the disease before claiming they can cure it!

Eating Tree Bark?

Makes sense. Aloe Vera Cures EVERYTHING right?

What have you been told to do? Tweet with the hashtag #SoCalledCures and I’ll add it to the list!

A massive #WorldIBDDay thank you!

A massive #WorldIBDDay thank you!

May 19th was World IBD Day and I think it was a big success. The main idea behind May 19th is to raise awareness about IBD and as #WorldIBDDay was trending on Twitter (albeit for a short period of time) I’m pretty sure we achieved that by some margin.

#WorldIBDDay Trending On Twitter
#WorldIBDDay Trending On Twitter

Despite being a largely online driven event, I was pleasantly surprised by the number of face to face discussions this kicked off. I had several people in the office approach me asking questions about how I’m affected. Some knew about IBD but didn’t know I suffered and others knew very little or nothing about it.

It was also great to see people who don’t normally talk openly about IBD sharing their own experiences online. The more people who talk about life with IBD then the easier it becomes for others to open up. The online IBD community really is a great place. After all, who better to provide support and comfort than someone who knows exactly what you’re going through?

I’m really proud of the part I played this week with regards to raising awareness by lighting up a local landmark. I want to give a massive thank you to The City of Sunderland Council and The National Trust for agreeing to turn Penshaw Monument Purple for May 18th and May 19th. I’d also like to thank The Sunderland Echo for interviewing me and running with the story. Without this many would have wondered our local landmark was purple. On the Crohn’s and Colitis UK Facebook page alone it received 702 likes and 104 shares and it was really well received elsewhere as well. This also helped link up many people within the region who suffer with either Crohn’s Disease or Colitis.

The Sunderland Echo's story on Crohn's and Colitis UK
The Sunderland Echo’s story on Crohn’s and Colitis UK

A big thank you as well goes to my friends and family who put up with the many tweets and Facebook posts during the day. I know I probably flooded some timelines but everything was really well received. And I mustn’t forget Salt Angel Blue who let me run an article explaining what the day was all about.

Lastly, I think everybody with IBD who tweeted, posted on Facebook, shared their story and photographs deserves a huge pat on the back. I found it quite exhausting keeping up with everything that was going on! Lets hope that the next #WorldIBDDay is even bigger!

I’m interested to hear what everyone else thought about the day, both those with IBD and those without. What went well, what didn’t, what could be done differently? I personally think that the overall message that we’re trying to communicate could maybe have been better aligned to try and do more instead of JUST raising awareness.

Standing in front of the Purple Penshaw Monument
Standing in front of the Purple Penshaw Monument

I’m in the News!

I’m in the News!

May 19th is World IBD Day and The City Of Sunderland Council have kindly agreed to light up a local monument Purple to help raise awareness.  You can read the online version of the article at the below link.

Link to the article on the Sunderland Echo

If you’ve come here from the paper version I’d just like to point out a couple of errors in the article.

  1. My name is Stephen Dryden, not Stephen Dryder.
  2. IBD effects over 300,000 people in the UK, not 30,000.
  3. I had part of my small intestine removed, not all of it.

Despite these errors I’m really grateful for The Sunderland Echo for running with the story and raising awareness!

I also wrote an article for Salt Angel Blue this week. You can check that out here  What The Hell is IBD?

What’s with the blog title?

What’s with the blog title?

Why start a blog?

Before sharing why I called my blog Climbing with Crohn’s, I thought it was important to explain why I created a blog in the first place.

I’m 28 and I have had Crohn’s Disease for 17 years. Up until recently, apart from 1 operation and several flare ups, I have been able to live a relatively normal life. Crohn’s disease only crossed my mind when I took my daily tablets. Last year this changed when even though I was not experiencing symptoms, I discovered that my condition had been active and causing damage. This led to the adoption of a new medication called Inflectra, that I receive in hospital via infusion every 8 weeks.

This discovery and change in medication drove me to get more involved in the online IBD community, where my primary goal was to find out as much as I could about my condition and the new medication I was due to start. I achieved this but I also learned that I was also able to help other people by sharing my own experiences, even though I may not have been through as much as others with Crohn’s disease or Colitis.

I discovered that everyone with IBD has a different experience and it made me realise how important it is for people with IBD to stand up and share their own story to raise awareness both externally and internally to the IBD community. I’m also aware of how much I don’t know or understand about my own condition and I hope that by writing more I’ll begin to boost my own knowledge.

Why Climbing With Crohn’s?

Stephen Dryden bouldering in Gateshead
Bouldering in Gateshead

I’m sure that most individuals with a chronic illness will sometimes feel that their disease defines them as an individual. I’ve certainly felt like this at times. This is partially why I decided to name my blog Climbing with Crohn’s. By doing this, it’s a reminder to me that Crohn’s disease is just one aspect of my life.

When I’m able to, I love to go rock climbing. I also thoroughly enjoy playing guitar, going to gigs, reading (usually about Everest and climbing expeditions) and watching films. I did not want to tie my blog down to just writing about Crohn’s disease. I want it to be a true reflection of my life with IBD and with everything else that makes me who I am.

The more I thought about my blog title, the more I realised how good an analogy rock climbing is to life with a chronic illness (at least I think it is – bear with me here!).

For me, a day with a chronic illness is like a day long rock climbing trip. If I’m going rock climbing I need to plan and pack the equipment that I need to enable me to get through whatever type of climb lies ahead. I would not be able to go top roping if I did not pack my harness, chalk bag and climbing shoes. When I climb I also need to make sure that I plan the route I intend to take and ensure that each move I make is a calculated move that uses as little energy as possible. An individual with a chronic illness often needs to plan their day out in advance as well. They need to make sure they take their medication and any equipment they may require to support their health. They often need to make sure that the day is not too busy so that they won’t totally tire themselves out. For me, I know that if I’m going out on an evening, I’ll try to have a relaxed day to save my energy for the night time.

Unless you’re bouldering or Alex Honnold, the majority of climbing cannot be done solo. Climbing requires a belayer.  For most climbs the belayer is there to catch the climber just in case they fall but sometimes the belayer can pick up the slack and enable the climber to take a rest for a few moments. This is very much how I see the importance of support from friends and family for someone with a chronic illness. Most days support is not needed but it’s important that it’s there to catch falls and provide occasional respite.

I hope this explains the idea behind why I started this blog and why I called it Climbing with Crohn’s. Let me know what you think in the comments section below!

Every IBD story is different. Here’s mine.

Every IBD story is different. Here’s mine.


I was born in 1988 weighing a healthy 8 1/2 pounds and I lived a relatively normal life up until the age of 11. I  say  relatively because I was always underweight and I had issues with appetite but until that point it was nothing too concerning.

At the age of 11 my appetite worsened and this was having a more noticeable effect on my weight. I also started to get excruciatingly painful stomach pains and at times I felt extremely lethargic. I remember being in so much pain all I wanted to do was just lie on the floor in a curled up ball and block the rest of the world out.

Being attacked by Suzie the rabbit around the time of my diagnosis
Being ‘attacked’ by Suzie the rabbit around the time of my diagnosis

Naturally my parents took me to the Doctors and after many invasive tests by a thankfully determined General Practitioner I was eventually diagnosed with Crohn’s Disease. Diagnosing Crohn’s disease is very complex as symptoms are wide ranging and vary from patient to patient. In my case, I did not have bloody diarrhea which is normally the main symptom associated Inflammatory Bowel Disease. I imagine it was also hard to diagnose as I was so young and unable to effectively communicate my symptoms.

Following my diagnosis I was prescribed a course of a steroid called Budesonide which helped bring my Crohn’s into remission. Unfortunately this remission would not last, and I spent 3 years back and forth to a pediatric gastroenterologist trying various medications. We eventually settled on a daily 75mg dose of Azathioprine which I still take to this day.

Teenage Years

At 14 I experienced several ‘uncomfortable’ bloating episodes with my stomach and after various tests including a colonoscopy, barium meal and MRI scan, it was identified that I had a narrow section within my small intestine that needed to be removed. Due to the damage caused by Crohn’s disease, my small intestine had scarred in several places and this was making it hard for digested food to pass through. Towards the start of the summer holidays I was pulled out of school as there had been a cancellation at hospital, and the following day I had 20cm of my small intestine removed. A week later I was out of hospital and on the road to recovery. I was left with a 2-3 inch vertical scar that went round past my bellybutton. Overtime this scar has decreased in size and you would really have to know it was there to be able to see it. Young skin is great, right?

Stephen Dryden playing a travel guitar in Cyprus
Playing a travel guitar in Cyprus. I was really struggling to eat at this point (hence how skinny I was) and upon returning home it became apparent that my Crohn’s was flaring up.

Following my operation I went through a long period of remission and I enjoyed a relatively normally life. To be honest, apart from taking daily medication, I was able to forget I had Crohn’s disease. I was incredibly lucky.

At 19 the decision was made to attempt to reduce my Azathioprine from 75mg to 50mg and unfortunately this lead to a flare up on a family holiday to Cyprus. A course of steroids reduced the inflammation and restoring my Azathioprine intake enabled another period of remission. Despite being in remission I began to experience uncomfortable bloating episodes similar to those I experienced at 14. With the aim of avoiding further surgery my consultant at the time prescribed a 3 month entirely liquid diet. This was an incredibly difficult time but it gave my intestines time to ‘rest-up’ and I was able to experience another long period of remission.

The present

This period of remission lasted until July 2015. I was a few days into a 2 week holiday travelling through Spain, Morocco and Portugal when I took ill. It always seems to happen on holiday. I arrived with the tour in Granada and immediately started to feel very sick and lethargic. I took a couple days out from activities and rested up in my hotel hoping that it would pass but unfortunately it didn’t. With the tour leaving for Morocco the following day, I took the hard decision to cancel the rest of my holiday and return home. At this point in time I did not know what was wrong with me and I didn’t fancy being poorly in Morocco.

Upon returning home I attended my twice yearly consultation with my gastroenterologist, and following a Calprotectin test, we identified that I had active inflammation despite the lack of symptoms. I had another colonoscopy and MRI scan and we discovered that I had widespread pockets of inflammation throughout my small intestine. It was likely that there had been Crohn’s activity for sometime and I was completely unaware.

My consultant did not believe surgery was an option, or necessary at this point and asked that I go away and research Infliximab and return to him in a few weeks to discuss whether this medication sounded like something I would like to try. I will save the details of Infliximab for another blog post, but I will say that reading about this medication online was terrifying and I learnt a lot from this experience. The idea of being tied to an infusion every 8 weeks after only taking tablets every day up until that point was a really scary prospect. This is really when the seriousness of my condition hit home, it was like being diagnosed for the second time.

During this research period I became very stressed about my future and I started to experience the stomach pains of a tell tale Crohn’s flare up. I’ll never know whether the stress and the symptom development were related but I suspect they were. This resulted in another course of steroids and another missed holiday.

Getting set up for my Inflectra Infusion at The Royal Victoria Infirmary, Newcastle-Upon-Tyne.
Getting set up for my Inflectra infusion at the Royal Victoria Infirmary, Newcastle-upon-Tyne.

In December I took the decision to start Inflectra, a new biosimilar version of Infliximab. (Infliximab is no longer available to new patients on the NHS due to its cost). 4 Infusions later and we are up to date with my IBD story. I’m pleased to say Calprotectin scores have improved after starting Inflecta but they are still not normal. At this point in time I’m not entirely sure what to expect. This will likely be a conversation I will have with my consultant in a few months time.

I feel like I’m entering a new stage in my IBD journey and I’m taking some time to settle in. This new medication kick started a lot of worry about the future, mainly along the lines of whether I’ll need further surgery, whether surgery is in fact an option and how long this medication will work for. Despite these worries, I’m trying my best to enjoy the ‘now’. I’ll tackle the future when it happens.

I’m aware this post is very long and I’ve moved quickly through a lot of topics. I hope to delve more into some areas in more detail in future blog posts. If there are any areas you’d like to hear more about please let me know in the comments below.