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. 

 

Presenting HRH Queen Crohn's

I am a 26-year old female humunculus from England. This blog is intended to be a retrospective diary of my experience, from the onset of symptoms in 2009 , to my diagnosis in 2012, until the present day, including three incorrect diagnoses, a multitude of treatments and all the embarrassing anecdotes along the way. From the days when I was blessedly ignorant of the minute details of how the bowel functions, to the days of laying in A&E, listening to an old man beg the nurse to pull the poop out because he couldn't push any more (A&E nurses are amazing human beings).

I remember being at rock bottom with Crohn's Disease in 2012 and I found it quite soothing reading about other peoples experiences with the condition. One of the biggest problems with Crohn's and other "invisible illnesses" can be the loneliness. Therefore, reminding yourself that there are other people out there who know what you're going through can be very therapeutic. It's only taken me about 2-years to get around to starting this blog. I am a skilled procrastinator in my spare time.

If you are reading this you are probably already familiar with Crohn's Disease to some extent, but for those of you who are not - IT CAN BE HELL!!!

I say "can be", because at present, I am extremely fortunate to have been in remission for just over 12 months, however the treatment for Crohn's has numerous side effects itself. Furthermore, for me remission was preceded by 3-years of absolute hell as I struggled to accept the severity of the problem and faced an uphill battle to get the correct diagnosis. Unfortunately the latter is a common problem among sufferers in the U.K.

Crohn's affects everyone differently, but the symptoms that occur in the majority of patients are diarrhoea, abdominal pain, nausea and vomiting. The digestive tract becomes inflamed as a result of the autoimmune system attacking perfectly healthy cells and, depending on the severity and location, there can be a vast number of physiological and psychological consequences. It is characterised by periods of 'flare ups', where symptoms make a normal life impossible, and periods of 'remission', whereby symptoms are manageable or absent.

There have been some comical moments and some very dark moments and it is only now that I feel I am coming out the other end (no pun intended), but I promise it will at least be entertaining! Using some colourful anecdotes and helpful quotes, I hope just one Crohn's sufferer feels a little less lonely.

.

About Me

I'll try to keep this brief. I am not particularly interesting.

Age: 26      Gender: Female     Nationality: British

Height: 5,foot 1/2inch or 154cm (AKA hobbit)

Weight: Depends on my symptoms! About 7 - 7 1/2 stone or 100lb or 46kg average

Likes: SLEEPING, walking in the countryside, The Big Bang Theory, Only Fools and Horses, football

Dislikes: Ignorant people who think they know everything, reality TV, slow internet connection, steroids, being an inpatient, politicians, having to buy my clothes in the kids section... this list could go on for a while - in case it isn't clear yet I also have depression!

If I Were An Animal: Jack Russell - big personality in a tiny package, loyal yet independent, energetic and workmanlike.

I am very tiny, so when people

get drunk they like to lift me in the

air to make themselves feel strong

• I was born in a seaside resort in South East England

• I have two older brothers who tortured me as a child and then complained that I was a tomboy

• I grew up in a single-parent working class family in a semi-detached house. I was part of the last generation in this country to spend all their spare time playing outside - before computers, obsessive parenting and playing in roads became off-limits because there are so many cars.

• I loved school and learning. Unfortunately I loved winding people (i.e. teachers) up even more.

• When my Dad was diagnosed with cancer in 2006 I decided not to be a checkout girl and to go to uni instead (this was prior to the obscene tuition fee hike of course, I would never dream of going now).

• In my final year of uni I developed worrying gastro symptoms. However, as I was 21 (and therefore invincible), instead of listening to my body I decided to go backpacking on the other side of the world.

• Forced to return to Blighty and my beloved NHS, because of those very symptoms, I have spent the last few years trying to obtain a correct diagnosis and adjusting to my unexpected life as someone with a chronic illness

Apologies In Advance

Before reading the Blog you should probably take note of the following:

1. Please forgive me if I use the word 'journey' in any context other than transport - It makes me feel like I am part of a cult, but unfortunately it just pops out sometimes.

2. I may be explicit. The symptoms of Crohn's Disease are not everybody's cup of tea so please do not be offended.

3. Sometimes I may sound like a crazy spiritualist. I promise I'm not, I just have a mind that is beyond reasonable control and will think what it thinks.

4. If you are a prospective employer of mine please take note of the excellent grammar and spelling and ignore the actual content as much as possible.

5. If you are a prospective romantic partner, please cease reading immediately.
6. If you are one of those blokes that struggles to accept us ladies have to poop, this blog probably isn't for you. 

7. If you dispute my title as 'Queen Crohn's' please contact my lawyer. First you will have to pay for me to hire a lawyer of course.
8. Any individuals or dates referred to are entirely from my memory. My memory is rubbish so feel free to correct me where necessary.
9. Some images on the site are my own so feel free to use them for non-commercial purposes, and links to third party sites are provided where appropriate, but I accept no responsibility if you happen to use something illegally!

16. Crohn's: Patience

Period: June 2012 - August 2012

The primary focus of my life for the previous 12-months had the waiting for various appointments, but at least I now knew what was wrong with me. When I was doubled over in pain or vomiting I could at least tell people what was causing it now! Unfortunately, I didn't know much more than that and everything I read on the internet seemed to contradict itself constantly. I was in a state of limbo, not knowing what I could do to make the symptoms better and with no idea if and when there would be an end to this hell. My mental health was becoming more and more fragile and this was not helped by the steroids playing havoc with my temper.

I remember on one occasion the refuse collectors knocked on the door to ask if I would move my car (living in a cul-de-sac, parking is limited so even a kerb space is a prime spot!). Having got home from work at midnight I was still half asleep when my Mum woke me up.  I grabbed my keys and trudged up the hill to the car. I asked the chap if his colleague would back-up the truck slightly to give me room to manoeuvre. Not impolitely but perhaps cordially. As I went to get in the car I heard him mutter something about my parking. This was my first taste of steroid-rage - I just let RIP!!! Every profanity you can think of coming out of this tiny little woman was enough to leave the poor man rooted to the spot in shock. Once I had finished, I just got in the car, moved it and went back to bed to dwell on how little control I seemed to have over myself.

Every day was now a struggle, from dealing with diarrhoea every morning to wondering if I was going to vomit every time I ate. My weight was slowly dropping and I tried to eat as much as possible just to stop my Mum nagging at me. I had been forced to quit playing football in March and in July I had to reduce my hours at work. I was permanently exhausted and it was seriously taking its toll. I felt very lonely yet being with people just made me feel lonelier and I was too tired to enjoy myself when I did socialise.

At my next appointment in July I advised the consultant that the steroids hadn't made much difference, except perhaps to delay the symptoms getting worse. I was prescribed the anti-inflammatory drug Pentasa and went home again full of hope that it might work. It brings a nostalgic smile to face when I remember how blissfully ignorant I was back then - Pentasa is a relatively limited Crohn's treatment used to treat mild to moderate forms of the disease. Full with optimism that this would be the treatment to put this matter to bed, I set off to a music festival in mid-August, with a substantial supply of toilet roll and wondering if there would be anything on sale that I could reasonably expect to eat without unpleasant repercussions. Part of me still tried believed it was the things I ate that brought about my symptoms and that I could just get it under control with my diet. I suppose its a natural response of the brain, when eating seems to bring about unpleasant symptoms like pain and vomiting, it is only logical that food must be the cause.

Naturally, when setting up our tent for the festival, toilet access was the key priority and we pitched up overlooking a nice big block of smelly port-a-loos. On the second morning, I awoke to find a small queue forming at the toilets. As was the norm by this point, within a few seconds of regaining even the remotest degree of consciousness, I needed an urgent poop. I calmly joined the queue doing my utmost to stop the inevitable and I had made it to the front of my line, when a lorry pulled up and the driver announced these toilets were closed for cleaning and we would have to go over to the other side, where there was already a significant queue forming. Swallowing my pride, I promptly crept up to him and advised him that I had bowel disease and waiting any longer was not an option for me. Bless his heart, he shouted to his colleagues that they were to wait for me to finish and nodded me in. Although I enjoyed the festival as much as possible, it was a bit of a wake up call when I looked at the pictures and saw how sick I looked, all pale and gaunt.

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...