31. I love Inflximab

Period: 2015

For anyone reading this feeling close to despair having tried everything to relieve their Crohn's symptoms, hope is out there! Nearly three years have passed since I started Infliximab and my life has returned to a level of normal I would not have believed possible in those dark moments when I began to doubt that I would ever be free of those debilitating symptoms. It is not a miracle, I know from experience that I must also do my part and take care of my body as much as possible, but it has afforded me over two years of remission and allowed me to get my life back. After seeing every other treatment fail, I will confess I had reached a point where I began to doubt anything would stop the symptoms long enough to provide any meaningful form of relief.

In October 2015, having been healthy and able to work full time for a while I decided to take a trip to Australia. Having been forced to abandon my dream of spending a year backpacking the entire country I decided on a whistle stop 1-month trip to celebrate the fact that I had my life back and, most importantly, to get it out of my system. Sadly, I had such an amazing time jumping out of a plane, snorkeling the great barrier reef and wandering through both desert and rainforest, that I remembered why I loved travelling so much in the first place. And why I'd been so depressed upon discovering that I would have to visit the hospital every 6-8 weeks for Infliximab instead of going backpacking again. When I returned from my month in Australia, I decided that I would go back and do the full year like I had originally planned.

 

A further colonoscopy last year (thankfully done under general anaesthetic, at least there was no anaphylactic shock this time!) failed to access my small intestine, just as it had on all previous occasions. Therefore a couple of months ago I underwent an MRE. The purpose of these tests is to ensure the bowel is inflammatory free and therefore clear the way to cease treatment of Infliximab. The NICE guidelines (UK only) state that "infliximab should be given as a planned course of treatment until treatment failure (including the need for surgery) or for 12 months, whichever is shorter." As I've been receiving biological therapy for almost three years now, the time has come to see if I can maintain remission without it.

I have only spoken with a couple of other people who had stopped receiving Infliximab, and both had been forced to start it again with 12-months, so I knew there was a risk my symptoms would return. With that in mind I decided to embark on the dream I had been forced to leave behind earlier in the blog of further travelling.  As Infliximab has required me to visit the hospital every six to eight weeks for the last three years I had been forced to put that particular ambition to the back of my mind. I realised I had to take this opportunity now, whilst I had my health. The flight is booked for April 11th, eight weeks time.

This week, I received a call informing me that my MRI scan showed active Crohn's Disease. This shouldn't have come as a surprise to me, as I have always had occasional mild symptoms even while receiving Infliximab, but to hear those words from the nurse was a massive blow. The past 12-months had been fantastic, I was healthy, happy, had a good job and good friends and I was planning on an amazing trip to Australia, with no idea when I'd be coming home. In one sentence from the Nurse my mind went back to those dark days when my life was ruled by the symptoms of Crohn's. My dream adventure suddenly seemed less certain.

As useful as Infliximab is, one of the downsides as with many drugs is that the body gets used to it, and over time it becomes less effective. Even if I were not planning on moving to the other side of the world for a while continuing Infliximb treatment no longer seems like the miracle solution it once did. Thankfully there is an alternative called Humira (adalimumab), which patients inject themselves with. My nurse tells me she has another patient who went backpacking to Australia and uses Humira. I will find out more about the drug when I visit the hospital in the coming week or two, but I do know that most patients receive three months worth of supplies at a time and typically inject themselves every 2-weeks. Easy enough, I can handle that. Further investigation has revealed that it must be kept stored at 2-8 degrees Celsius (26-46F). Since I plan to live and tour in a van for the first few months of my trip, this is not an ideal solution.  

A week ago my thoughts were occupied by what to pack, the places I want to visit and the adventures I hope to have. Now I am contemplating the prospect of boarding planes with a bag full of needles and devising methods to keep the medication at its required temperature on the road, largely in the desert of all places. 

 

11. Defeat

Period: May 2011 - July 2011

Upon arriving in Queenstown, despite my dwindling health I was in an optimistic mood, determined to find a job and enjoy the ski season before considering whether to extend my visa for a further 12-months. The job hunt was difficult and I quickly lost my motivation. Being around an old friend again I found it much for difficult to hide the severity of my symptoms and, being on a tight budget, I had a lot of spare time in which to think and dwell.

Nevertheless, surrounded by beautiful scenery and a good friend I managed to keep my spirits up. Unfortunately, it became increasingly difficult to keep my food down. At this point I remember the constant pain seemed to manifest itself in my consciousness and I was always aware of it. I am totally embarrassed to admit it now, but I was still trying to convince myself it was IBS! After all, that's what the doctor said right? Up until then I had never really been able to specify which part of my abdomen was painful, it was just a general feeling of all-round pain accompanied by intermittent cramps. However, I became increasingly aware of a constant dull ache in my lower right abdomen and the area was frequently swollen and tender. 

After two months I realised that, even if I were to find a job, it was highly unlikely I would be able to maintain it for too long in my current condition. More and more I started to realise that going back to England was the sensible option. It was not an easy decision to make, but above all else I now just wanted my health back. I had intended to spend at least year in Australia after NZ, so I decided I could go home, get my bowels fixed and earn some money, before heading off to Oz next year. Therefore, in July I booked a flight back to Blighty. On the morning of my departure I woke up and promptly started vomiting, which at least confirmed I was making the right decision. And so, with a heavy heart I waved the white flag and boarded my flight from Christchurch. If I had known then how long it would take to finally get a correct diagnosis, I might have just stayed in New Zealand.

10. Denial, Denial and More Denial

Period: May 2011

In constant pain, with highly unpredictable bowels and occasional vomiting, we set off on our road trip down the west coast of NZ.  Despite my symptoms I remember being happier then than I am now. Either the memory is a beautiful thing that has deleted the misery or ignorance really is bliss (personally I think it is the latter!). I do remember the constant worry, but somehow it was secondary to all the amazing new experiences I was having. 

For example, we spent a lot of time sleeping in the car to save money, usually stationed near toilet facilities as the first hour of the morning generally guaranteed at least one urgent watery poop. It is much easier to ignore your burning A-hole when you wake up overlooking a vast lake with mountains in the distance, before turning your head to this sunrise

However, there was one morning when I was close to despair. Having been living in the wilderness and eating very little, we treated ourselves to McDonalds on an a pretty epic scale. In retrospect I should have known better, but in case it isn't clear yet I make bad decisions! The following morning I woke up with crippling stomach cramps and, worse still, having parked and slept in a lay-by overnight I was forced to perform my morning ritual in a cluster of bushes. Let me just say, I was far more concerned about the incredible pain in my stomach to care about where I was pooping. 

Nevertheless, we prepared to drive to our next destination and headed for the lay-by exit. Unfortunately, that's all we did before the car stopped dead in the now-pouring rain, over 5km away from the nearest town, Greymouth. My companion had credit on his phone and no battery, I had battery but no credit - and they were incompatible for swapping! If you see NZ as a place of permanent sunshine. Wrong. In this particular area of the South Island when it rained it poured. As I lay on the back seat curled up in a ball of agony we pondered our options. Without any other choice, he set off in the rain in the direction of Greymouth and returned within the hour, having called a tow truck from a nearby house. Thankfully, by the time we arrived at the garage my stomach was finally starting to settle, but unfortunately the car had to be scrapped. The lovely people at the garage gave us a ride to a hostel and after good nights sleep we continued our journey by bus and hitch-hiking.

9. An Apple A Day

Period: March 2011 - May 2011

We soon settled in to Motueka, an area rich in orchards and vineyards - us ladies found a job in an apple packing factory, whilst our male companion went out picking them. Not the most glamorous of jobs, but it put food in our bellies! I also had my first experience of hitchiking, which was a great thrill. I get totally turned on by a bargain and getting a ride for free was like David Beckham combined with Robert Downey Jr (naked!). Shortly after arriving, the hostel owner moved the three of us to a private room to free up the dorm beds for short stays. This was this biggest stroke of luck I could've asked for, as within weeks of arriving my symptoms took a turn for the worse. 

Just five weeks in to the job I was starting to vomit almost daily and I was in constant pain. After a few weeks I took myself to hospital once again, this time in Nelson. Despite being a public hospital, when I arrived I was turned away because I had not bought my insurance documents. I mentioned the reciprocal health agreement and the triage nurse told me that it no longer applied and mumbled something about "health tourism". I guess she had never heard of the NHS, or perhaps she thought I wanted to spend hundreds of pounds travelling to the other side of the world to get healthcare that was free at home. Either way, it was over an hours drive to the hospital and, upon returning to the hostel, I decided not to go back immediately.

Of course, it was only a week or so later that the inevitable happened and I found myself back at the triage desk with my insurance documents in hand. Despite the fact that I had been vomiting in steadily increasing quantities during the previous month, I was hooked up to a drip for a couple of hours before being sent home with a prescription for Giardia, an intestinal parasite. My UK address was later billed a delightful £300 for this privilege.

One of the old school friends I had said goodbye to in Paihia was now settled in Queenstown, so, with the end of the apple-picking season fast approaching, I decided to make my way down there with one of my Wellington companions. With my health worries still festering away in the back of my mind, I was keen to be around a close friend in comfy surroundings, so that I could stop and reflect a little. With that in mind I tried to squeeze in as much as possible on the journey down.

8. A Sad Farewell

Period: March 2011

And so, after singing along to the TV Commercial for weeks, I departed my favourite capital city in the world, cruising on the Interislander, sailing to the other side. I will forever regret leaving Wellington so soon, however, as much as I refused to acknowledge it at the time, my concerns over my health motivated me to get moving. On an unconscious level, I wanted to see and do as much as possible just in case I fell really ill and had to go back to England prematurely. When I'd arrived in Wellington back in December, I was on a massive high because I had recovered from surgery and I was feeling better than I had in months. Since that time, my symptoms had slowly worsened, in such small increments that it I had been able to pretend it wasn't happening.

As we disembarked the ferry in Picton on a dreary afternoon, I was more nervous than excited. As previously noted I am extremely adept at self-denial and I tried to be optimistic, but in the back of my mind it was impossible to ignore the permanent worry that festered there. With the symptoms slowly worsening I began to finally recognise that it was not normal, but if anything this just made me try even harder to ignore it! Thinking about it now, I am both embarrassed and impressed by my capacity for self-denial =)

We decided to spend a couple of weeks sightseeing, after which we would decide where to base ourselves for a few months. During our walking and camping trip to the beautiful and blissfully remote Abel Tasman, my tender relationship with a long-drop really started to blossom. I will say one thing for NZ, they do try to make the outdoors as comfortable and accessible as possible while maintaining it's remote charm - very Crohn's friendly! It makes me so sad to think how I would struggle to complete those same walks these days. I could definitely do it, I just wouldn't enjoy it as much because I would be so exhausted!

7. The Eye of the Storm

Period: December 2010-March 2011

Living in Wellington was the happiest time of my life. I appreciated it all the more because I vividly remembered how ill I had been until recently, and I was aware that it may come back at any time. I was still suffering from cramps and diarrhoea but it seemed easy to manage. I was living in a dorm room in the centre of Wellington, maintaining a social life, getting up at 5am to walk 5 miles to work and back each day and, towards the end of my stay, working for my accommodation by cleaning the hostel between 9pm and midnight. Thinking about it now, it seems impossible that I managed to do all that. These days just finding the energy to work full-time is sometimes a struggle.

Christmas 2010 provides a clear example of how my life has changed for both the better and worse. Having recovered from surgery and buoyed by my new found "health", I spent Christmas and New Year really letting my hair down.

For the next three months I pushed my body. I knew something wasn't quite right, but I thought that if I lived life to the fullest it might somehow disappear. If nothing else I will always have the memories of those few happy months. As the summer drew to an end, I started to look towards my next adventure, yet in the back of my mind was the constant worry of my health. Being around people who did not know me very well made it easier to hide (and to some extent ignore) the symptoms. Somehow, with close friends it feels like lying and deceit.

Not wanting to travel alone, just in case the worst should happen, I arranged to head down to the South Island with a couple of mates from the hostel. In the fortnight leading up to the grand departure, I was feeling increasingly concerned about my guts once more. The pain was becoming more severe and more persistent every day and I had vomited a few times recently.

6. Parting of Ways

Paihia Sunrise - Chris Zielecki

Period: November 2010 - December 2010

As so we reached our chosen destination of Paihia, a tourist town in the far North. The intention was to find jobs and earn some money over the summer. Unfortunately, camping in the middle of a NZ summer when you have just had abdominal surgery is not ideal and, while my friends quickly found jobs as cleaners, I was trying to stay comfortable during the day in a sweltering tent waiting for my stitches to heal. Paihia is a beautiful place, but there is not a great deal to do and I was feeling increasingly isolated from my friends and the world in general, particularly as I tried to suppress my suspicions that the surgery was pointless.

After a couple of weeks, with my scars almost completely healed, I went in search of a job - but I seemed to lack motivation. Despite felling physically better than I had in months, I just wasn't happy and I couldn't figure out why I felt so alone. The loneliness was really getting to me and I decided it would be better to go off by myself and be lonely through choice, rather than stay in company where I felt increasingly isolated. Either I would go on to have an amazing time, or I would crash and burn and go back to Blighty with my tail between my legs.

Trying to suppress the guilt at leaving my friends, I decided I needed to embrace my new found health and embark on my own adventure, but I struggled to find a way to break the news to them. They were understandably annoyed, having stuck with me when I was in hospital, but they could see I wasn't happy. Having packed up the car and said my goodbyes, I headed 400km south (about 250 miles) to Tauranga to stay with a friend while I figured out what I wanted to do.  I considered stationing myself in  for Tauranga the summer, however the friend I was visiting was partial to a good smoke and I had always been highly susceptible to the magic dragon myself. It would also have seemed like I was settling for the safe option. Therefore, I applied for jobs all over the North Island and I quickly secured a position as receptionist in a hotel in the capital, Wellington.

The drive from Tauranga to Wellington was nine of the most amazing hours of my life. About 500km (300 miles) down State Highway 1, through some of the most stunning and diverse landscapes imaginable, including panoramic views of the magnificent Tongariro National Park. This was a pretty magical day for me, feeling well again and with no idea what lay before me... perfect! I was excited, with just the right amount of fear. I was aware that my symptoms had not completely disappeared, but it was secondary to the excitement. I remember having this confidence that whatever happened, it would all work out in the end. My experiences since then have left me a touch more cynical!

5. Crohn's: Loneliness

Period: November 2010

Surgery was scheduled for the following Monday and, having been in hospital for over a week, I was feeling much better so I begged the doctors to discharge me for the weekend. They agreed but I had to sign a disclaimer just in case anything should happen to me. My friends had been staying in a B&B next door and two other friends came to join us in Thames for the weekend. As chance would have it, one of their parents had just arrived in NZ too and we all had a lovely time.

I think this was really the onset of the loneliness for me. While everyone else went on a challenging walk on the Saturday afternoon, I stayed behind and brooded on my misfortune and stubbornness. Pretending to the world that everything was fine had become extremely difficult and the constant worry was a real drain. Until I knew exactly what was happening with my surgery, I didn't even inform my family back home that I was in hospital, I didn't wan't to worry them unnecessarily. During that weekend, I remember sitting around with everyone in the evening sunshine and, whenever I experienced painful stomach cramps, I would try to disguise it and this overwhelming sense of isolation would sweep over me as I watched everyone around me enjoying themselves.

The surgery went fine and I was delighted to discover my prescriptions cost less than half what they did in the UK! We left Thames just a couple of days after the operation, to continue our grand camping tour of the North. In all honesty, I was not ready for it, however I felt extremely guilty for holding my friends back and extremely grateful that they had stayed with me while in hospital - the B&B hadn't been cheap and I knew they were on a tight budget like me.

4. (Needless) Surgery

Period: November 2010 - December 2010

Having made it through a seemingly endless, sleepless night we set off as soon as possible to the nearest A&E in Thames. I have no idea how long the journey took. It could have been 1-hour, it could have been 5-hours, I was barely aware of what was going on around me I was so exhausted. Thankfully, I slept during the journey and by the time we reached the hospital I was more together.

I spent a fitful few hours hooked up to a drip in the A&E department before waking up in a lovely private room. I was quickly transferred to a 4-bed ward but even that was lovely. By coincidence, there was a women on my ward in her early 90's, called Jean, who was born just a few miles away from me. She had emigrated to NZ as a young woman - by boat! To give you an idea of the environment, the hospital serves a large area (easily 10-times as large as my UK home town) but has just 54 inpatient beds, compared to over 500 inpatient beds at the hospital in my home town. Despite being so far from home, at no point was I homesick. It helped that I had two good friends with me, but all I can remember thinking about is getting better and carrying on with my travels.

The following day the doctor came to see me to inform me that, following the results of my blood tests, I had suspected pancreatitis. He informed me that as a precaution, they would like to remove my gall bladder, given that it was the most likely cause. As I was travelling, should the pancreatits return they were concerned that I could find myself a considerable distance from a hospital, and it could be fatal next time. If there was a chance it could work and I could just put this whole ordeal behind me, so I advised the doctor that I would have to check with my travel insurance provider to see if they were willing to cover the cost. Before I had an opportunity to check, an administrator from the hospital came to see me to take a copy of my visa and passport. It turns out I had been fortunate enough to arrive at one of the few public hospitals in New Zealand and, owing to a reciprocal health care agreement between the UK and NZ, I didn't need to bother with the insurance company at all - result!

Although a subsequent ultrasound showed no evidence of gallstones - and was also unable to view my pancreas clearly - I consented to the surgery. In the back of my mind I was sceptical that it would work, however, instead of voicing my concerns with the doctors, I accepted that they knew best. Furthermore, it had now been a full year since the first "episode" and I just wanted to get back to normal - I was willing to try surgery to be rid of the constant pain and worry. I tried to look on the positive side - my Mum and Auntie had both developed gallstones in the previous twelve months and Our local NHS trust had recently decided not to cover gallbladder surgery unless it was an emergency, so at least I wouldn't have to worry about that 30-years down the line! 

I have since read an article that looked at the high rate of pancreatitis diagnosis prior to a diagnosis IBD, so it may have been caused by my Crohn's or more like it was simply a misdiagnosis. Personally, given my subsequent experiences I think it is more likely I was suffering from a partial bowel obstruction. In the UK I would probably have undergone an X-ray in A&E, which would have helped identify this. Unfortunately, the only scan I underwent was an ultrasound of the upper abdomen, and that was after four days of being nil-by-mouth. I do not blame the hospital or the doctors - in a country that is slightly larger than the UK with a population less than London, Crohn's is probably not something they come across very often, except perhaps in the main cities.

3. The Adventure Begins

Period: October 2010 - November 2010

Although symptoms were severe by this time, I was too caught it in living my dreams to allow my body to hold me back. Some people might read that and think it is admirable to carry on as normal. Personally I feel like an idiot for not taking it seriously! Nevertheless, the following months were some of the most incredible moments of my life and I don't regret it =)

Therefore, trying to convince myself I had IBS, upon arriving in New Zealand I immediately embarked on a high fibre diet. The two friends with me were great, eating whatever I had to - and on an extremely tight budget. Shortly after arriving we popped in to the nearby supermarket, a New World, and asked an assistant if they had whole-wheat pasta. He just stared at us like we were aliens. With the exception of Auckland perhaps, NZ is not an ideal place if you have special dietary requirements!

One of the most frustrating aspects of Crohn's Disease for me has been the association with diet. In the earlier stages I obsessed that there was a certain component of my diet causing the symptoms, but everything I consumed made me ill. Now that I am better informed, I am aware that in most cases a high fibre diet is incompatible with Crohn's Disease. It certainly was for me! Having spent a few weeks relaxing on the beach, we embarked on what was supposed to be a camping tour of the Coromandel region, but turned in to a hospital stay and surgery.

Our departure was initially delayed by a day as I was feeling unwell and vomiting more than usual. However, not wanting to hold my friends back we eventually set off, however when we arrived to set up camp, I was genuinely concerned. It's strange to think that throughout it all I had just accepted my symptoms as normal, but at least I finally recognised the seriousness of the situation. When I started vomiting, instead of camping in the middle of nowhere as planned we set off to find a campsite, to be near some form of civilisation should anything serious happen. I will be forever grateful to those two friends for taking such amazing care of me.

From what I can remember, that night was pure hell. In a tent with two other people, crippling stomach pains and getting up frequently to vomit outside. Mercifully the pooping eased off somewhat, but during my time in New Zealand I did have to poop in the wild a fair few times. When you are walking in some remote parts of NZ with active Crohn's, there really is no other choice! But I tried to be as discrete as possible...