28. Struggles 'R' Us

Period: May 2013

Either the stress or the fatigue or coincedence made my Crohn's symptoms a lot more severe during this period. It had been some time since I had experienced a prolonged period of severe pain and it was an unpleasant reminder of the uncertainty that the future may hold. For some reason, I still found it difficult to accept that Crohn's would be a constant presence in my life.

The experiences with the car once again reinforced my negative perception that I was a very unlucky person. At the same time I was finding it increasingly difficult to commit to my job. In the past I had always given 110% to every job, no matter how menial, but I now found myself struggling to muster any motivation or enthusiasm. The same was true of my studies. 

When I contacted the car dealer a fourth time, within a week of the third "repair", to tell them that the problem had returned, I was informed that the owner was on holiday and no action could be taken until his return in two weeks time. I sought counsel from Citizens Advice and I proceeded to send them a letter by recorded delivery outlining my issues and how I would like it to be solve - I wanted to return the car for a full refund, which, under Trading Standards, I am entitled to do if I have given them three chances to repair. Following a phone call to Citizens Advice, I proceeded to send the garage a letter outlining the problem and my request for a refund.   

In the meantime, I was spending £100 a week hiring a car just to get to work and back. The alternative was simply not an option with my morning poop issues, as it would require a bus, a train and a 20-minute walk every morning and evening. My mental health sunk to an all-time low - I knew that the confident pre-Crohn's me would have coped with these difficulties no problem, but the chronic fatigue and stress was too much in my fragile state. I decided to hand in my notice and work and for the first time take a break from everything to get my head together. My family were fairly unaware of the severity of my depression and as a result I knew they would criticise me for giving up work, even temporarily, so I lied and said that they had decided not to keep me on after my probationary period. Living with my Mum and brother for so long had not really helped me beat the depression as they are inherently negative people. For instance, when I was walking out the front door for a job interview earlier this year my Mum's exact words were "just don't get your hopes up"!

15. An End To Ignorance (And Anal Virginity)

Period: March 2012 - May 2012

Within a week of my Crohn's diagnosis, I called the IBD nurse and left a voicemail, explaining that I was told to call if I needed a prescription. I waited by the phone all day. As the following day was Saturday, I had to wait until Monday to visit the GP. I explained that, now they had told me it was Crohn's, surely there was some medication they could prescribe to help with my symptoms?

The GP contacted the IBD nurse directly and I was put on a 3-month course of the steroid Budesonide. In May I had the delightful experience of my first colonoscopy. If you have never had a colonoscopy, let me tell you that the actual procedure is a doddle. It is even quite fun watching your bowel on a screen. What isn't fun is wasting an entire day of your life drinking copious amounts of what I can only describe as drain cleaner, to clear your bowels completely.

When I arrived for the procedure the matron was lovely and explained that, as my inflammation was in the small intestine there was a high chance they might not be able to get the camera inside, but they would try to get a biopsy sample at least. To be honest this news came as a bit of a shock to me. I had been anticipating the colonoscopy as the beginning of the end to this hell. I had been on steroids for a few weeks and, apart from making me increasingly prone to rage they did not seem to be having any significant effect. To find out that they may not even be able to confirm it was Crohn's disease was a big disappointment and I was annoyed that the consultant had not taken a few minutes out of his day to explain this to me previously.

When I had recovered, my Mum and I were taken in to a tiny room with a desk and a nurse. When she sat there and told me that my colonoscopy was clear and the most likely cause for my symptoms was IBS, I just wanted to cry. Before I could scream at her that I did not have IBS my Mum politely informed her that she was wrong and that we already knew it was not IBS. Instead of listening, she told us WE were wrong and started blathering about peppermint and fibre. Knowing my temper was already close to the surface because of the steroids. I did the only thing I could and politely stood up, thanked her for her time and took my paperwork, which had been sitting in front of her.

It was not until I arrived home and read the notes that I discovered they had not even been able to access my small intestine after all. At the top of the page it read quite clearly "CT scan shows inflammation of the terminal ileum" and at the bottom it stated just as clearly that they had been unable to access the terminal ileum. They had been able to take a biopsy, but this turned out to be too fragile for examination. In my anger I fired off an email of complaint to the hospital about the nurse. To their credit they did contact me within a couple of weeks, but once I had simmered down I decided to let it go.

13. Crohn's: Endurance

Period: January 2012

In the new year I waited for the ultrasound follow-up with the consultant. And waited. In February, when there was still no word from the hospital my dear Mum called them, to be told that I had slipped thought the system (A.K.A forgotten about).

At this point, worrying about my health had taken over my daily thoughts. It's difficult to explain to someone who has never suffered a long-term illness, but as an example, when a healthy person is engaged in a conversation, chances are they will be focusing 100% of their attention on the person and what they are saying, or thinking about something random like what to have for dinner. When you have Crohn's, you are trying to maintain a normal conversation while really you are thinking about how much pain you are in.

This sort of thing was particularly important as I worked on the front desk of a luxury hotel. I used to try and get the afternoon/evening shifts as much as possible, as starting work at 7am meant spending a large portion of the morning in the toilet. Thankfully, there was a toilet above reception that I could use, providing no functions were taking place. Unfortunately, it was also right next to a guest room, so one of the first things I would do upon arriving was check the computer to see if it was occupied. When someone is paying £200 for a night's accommodation the last thing they want is to be woken by the receptionist exploding out of her rear end!

One particularly funny memory involves the poor cleaner knocking on the toilet door at about 8am to tell me there was someone at reception waiting to check out. Before 9am there was only one member of staff to man the front desk. There was absolutely nothing I could do but sit there and wait for the poop to stop leaking from my burning A-hole! By the time I returned thankfully the customer had left, at least it avoided the need to provide an explanation when I finally returned.

2. Crohn's: Missed Opportunity

Period: March - October 2010

Previously I discussed my ability to rationalise my way out of seeking medical help. Well, let's just say if you think I am a bit strange now, by the end of this post you'll probably think I'm slightly insane. You may do already but stick with it!

By Easter I had resolved to visit my family doctors surgery as soon as uni was over. I rationalised that I was moving back to my Mum's so there was no point starting with a GP 250 miles away and making a fuss by attending A&E was still very much inconceivable to me. Furthermore, I was so focused on my studies, working, socialising and planning my trip to New Zealand that I told myself I didn't have time to worry about my health right now.

So in early June, more than six months since the first severw episode, I finally visited the GP. Despite the fact that I had been pooping and vomiting in steadily increasing quantities, I played it cool and pretended (to myself as much as the doctor) that my symptoms were no big deal and I was just there to make sure it was nothing serious. After ruling out a stomach ulcer I was referred to a gastroenterologist.

In mid-August I went to see the consultant, by which time my symptoms had worsened even more. The consultant referred me for blood tests, presumably to look for inflammatory markers, as I told him my brother had IBD. In the meantime, I simply insisted to the world (and myself) that everything was fine and pushed my body pretty hard, working and 50-60 hours a week as a bar person. I was focused 100% on going to New Zealand in October and I somehow came to accept my symptoms as normal, despite the fact that they were now impacting on most aspects of my life. One particularly embarrassing memory involves an amorous evening in the company of my then partner. Let's just say, I thought it was a fart... Thankfully he was a sweetie but even a selective memory cannot rid me of that one!

In the mornings, the minute I opened my eyes (and I mean literally seconds after any sort of consciousness was obtained), my anal sphincter control was tested to the limit. It would be a mad dash to the toilet and I would have to pray that my Mum or brother were not occupying it. Thankfully, they would both get out as soon as they could, but when someone is taking a bath those few seconds are often the difference between near-miss and epic fail! Throughout the day I would be plagued by nausea and occasional vomiting and I endured crippling stomach pains. At night I would be kept awake by the pain and nausea, spending hours just praying for sleep and relief from the constant discomfort in my abdomen, which, at that time was not specific to a particular region but more a generalised feeling of cramps. It was now starting to feel like a relentless, daily struggle. However, I did develop a rudimentary level of control over it. I discovered that I was able to form a cycle with three stages:

I also observed that short episodes of fasting improved my symptoms temporarily. I do not tell you this because I condone it or because it may work for you. Fasting can be dangerous and in Crohn's the risk only increases, as your ability to absorb nutrients is already compromised. I realise now that my body was telling me, in no uncertain terms, that there was a serious problem and it was irresponsible of me to try ignoring that fact. Unfortunately, having convinced myself it was just IBS, I tried to increase my fibre intake. If you are familiar with Crohn's you will probably know that this is one of the worse things you can do!

In early October, having attended my graduation ceremony I was due to fly off to New Zealand the following week. First, however, came my follow up appointment with the consultant. Miraculously my blood test results did not show any cause for concern and I was advised that the cause of my symptoms was IBS. Needless to say I was over the moon and, instead of expressing my underlying concern that this was most definitely NOT IBS, I did the typically British thing of thanking the Doctor for his assistance, wishing him well and quietly leaving. Only later in life have I realise that I know my body better than any doctor ever can (although Matt Smith is welcome to try).

It's worth noting that the doctor also recommended a stool test, presumably to check for Inflammatory markers once more. When I took my sample up two days later I discovered the Path Lab depository does not open on Saturdays. Early on Monday morning I flew out to New Zealand and the stool test never happened. FYI - I have only recently discovered that a stool sample doesn't need to be fresh like I had always assumed - it can be a few days old when you deposit it. Who knew?