“It is okay to be angry at your situation sometimes”

I feel some normality returning to my bones, some of my personality coming back. Some of my fight, a strong part of my need to write, seeping out of my fingers.
The realisation here is that: IBD is unpredictable.
And that particular mental battle is a topic for another day, some time soon.


Sometimes you just have to laugh. 

No seriously, you do.

Through wet eyes, I sat on my hospital bed, incredibly sad at the state of affairs I was in. This was my fourth admission in as many weeks, I was staring at the NG tube being held by the Sister and felt nothing but anger. I wasn’t angry as the tube, I was angry at me. I was frustratingly upset at the fact that I was here, yet again, having to endure something that no one else I knew had gone through.

PICC line, might need surgery, they would cut me open again, through my scar, ruining me more, possibly making me sicker, not quickly fixing me, I was stronger than this, why was this happening, wasn’t Crohn’s Disease enough, when I am very going to not be in pain, what was happening, how was I going to get this tube down, would I choke again, what else would I have to do…

I had a brave, wet smile on my face but I was petrified. I’d spent the majority of my days in hospital alone because I was either 90 miles away or no one was able to visit. And honestly, I relished the alone time. Yes, I was on my own, left to my own thoughts but it was those hours when I sat and let all my emotions wash over me; that I took some comfort in what was going on.

  • I was most definitely in a IBD flare up.
  • I was most definitely correct about it for weeks, and finally doctors had caught up with me and my body!
  • I was going to get through this. I had to.
  • I’d had worse last year and look at how well I’d coped with that…!
  • I had to get a hand on my pain. I had to find an adequate source of pain relief; that was priority number one.
  • I had to get over the fact that I would be back on IBD biological medication again.
  • I was looking forward to being on medication again: I felt lost, unsure and confused being ‘medication free’ and ‘in remission’; whatever they were.
  • I longed to fight everything, but I was exhausted.

I won’t lie, I felt utterly negative throughout August. When I wasn’t in hospital, I was at home with my parents or my boyfriend. I wasn’t a happy person to be around. Everyone tip toed around me, unsure if I was getting better or just getting better at hiding my symptoms. For the majority of the time, I am ashamed to say it was the latter. I knew that I needed help and that would only happen if I got sicker. I needed to let the pain get worse, to warrant going back to hospital. I needed to be taken seriously and my body would help me do that.  So I let myself suffer.

NB: I would not advocate letting yourself suffer. It was a foolish mistake. I was stuck between seeking the comfort of my old hospital and trying my new hospital who, of course, did not know me or my disease. I struggled to play the system and went running back to what I knew. It was a situation I don’t want to have to experience again. With hindsight, what would I do? I would seek getting someone else to advocate for you, if you are too unwell to do so. Always have someone who can fight your corner, in desperate times. 


It wasn’t until it was agreed to seek the funding for my Vedolizumab again that I started to feel positive again.

That feeling of finally feeling validated was beyond comparison. As shocking as the conversations leading up to “needing to go back onto medication” were – I felt everything from disappointment to shock, back to guilt and confusion – nothing beat knowing that this was what was meant to be. And that feeling took me by surprise, completely.

After weeks, if not months of feeling unwell; knowing deep down in my guts that I was sick again, I finally had my answer.

After all that time of medical professionals skirting around the issue of my Crohn’s being back again, after all those moments of feeling helpless and unsure, some resolve was rising within me.

It is okay to be angry at what you’re being faced with.

I was angry when no one would take responsibility for delivering test results and building a plan. I was so angry that I was expected to advocate for myself when I felt so unwell and so incredibly alone. I was angry when it was suggested I was drug seeking because I knew the specific medication and dose I needed to not be in pain. I was angry at how easy it was for my concerns to be dismissed or even ignored.

But my anger was deflated – flattened in fact – when they confirmed two new patched of IBD inflammation in my small bowel. When they confirmed dilated bowel, an obstruction, and it was likely down to my disease pattern and surgical history. I felt betrayed by my past decisions. I started doubted my ostomy, my choices to relocate, my job, my lifestyle; everything. 

You continue, because you do.

I hated what my disease had done and was continuing to do to my life.

It’s unpredictable nature; came back full force. Sweeping me off my feet, knocking me sidewards.

And that unpredictability is what I struggle to deal with, on a daily basis. I’d lived the first six months of 2017 in a blissful bubble of being “in remission” without any medication, without the need to see the parade of doctors and nurses that I once did when I was “sick”; forgetting that my IBD had not be cured by my surgery. My ostomy has changed my body forever and it’s continuing to change my life; both positively and sometimes negatively. I deal with this, as best as I can, but I still struggle to cope. On the surface, I look healthy and well; but IBD runs deeper than that. And feeling angry at that sometimes, is what I have to have to feel.

I sometimes feel guilty for not always feeling positive about having to shit into bag on my abdomen. Yes, its made a hell of a difference to my disease but it comes with its own challenges and obstacles. And I won’t lie or hide what those are. But, I pick myself up. I fall down – who fucking doesn’t with this shitty disease or a stoma?! – and rise once more. Hopefully, higher and stronger than before.

But if I don’t, is that the end of it? No. I live.

The Return of… Everything

Follow my blog with Bloglovin   You always want to believe your consultant when they say “maybe we’ll be able to go a couple of years without any medications or big issues“. You believe because that is the sort of IBD dream isn’t it; managing without medical intervention? It was for me, back in June at my last appointment; full of confused optimism. Fast forward not even six weeks and I was bed bound, in constant abdominal pain; unsure of what was happening to me. I would suffer for weeks, spending days on end in and out of the hospital, […]

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Six Years On – Diagnosis

It was a desperately horrible August, 2011. I’d never suffered with health problems, but this current run of feeling unwell just wasn’t going away. If anything, every day, it got worse. So much that weeks had passed and I just could not remember the last time I had eaten a meal, the last time I’d had a solid BM and the last time I hadn’t been sick. I was a mess. Nothing at this point, pointed any medical professional towards my eventual diagnosis with IBD; it was first described as a stomach bug. Then the stomach flu. Finally Gastroenteritis and […]

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The Highs and Lows of Hospital Stays

I’ve just spent a week in hospital, unexpectedly. Now I am no stranger to prolonged spells in a hospital bed. But this time, this was different. New city, new hospital, new problems. I am still processing all the new information so bear with me, this isn’t going to be all about what has gone on but more about what its like to spend time in hospital when youre chronically and invisibly ill. Being in hospital has extremes of highs and lows. Yes, even highs! The spectrum of emotion is vast, varied and can hit you without warning or want. Learning […]

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The What and Why: Vitamin B12

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Erythema Nodosum – My Extra Intestinal Manifestation

This time last year I was going through a rather rough time. I had just left hospital after a week’s admission to treat a bowel infection following my bowel resection in May. Antibiotics, fluids, nutritional supplements and lots of rest later, I came home. Unfortunately, it would not be my last visit to the hospital that summer. What I did start to develop at the end of this particular admission were red lumps on the back of my forearms. They looked like bites, they were incredibly itchy, as well as being really swollen and sore. Throughout the rest of the […]

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London: for Business not Pleasure

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Life Lately | Being ‘Too’ Comfortable?

Is getting too comfortable a bad thing? Recently, I moved to start a new job. There was no two ways about it; if I wanted that particular job, I had to relocate. My employer has been amazed that I have been able to a) move away from home after so long there and b) settle in so well, so quickly. So where does settling in get into the realms of being comfortable? I find myself enjoying my journeys to work. I enjoy coming to work too, which I haven’t ever really felt before. I feel happy to listen, learn and […]

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Life Lately | Stuck, Confused or Lost?

It’s difficult when you have to be a ‘team player’ and ‘independent’ too How many jobs have I applied for when this phrase is used time and time again? It is of course a valid and acceptable quality for most candidates. Prove it, get the job, work hard and this is like second nature. But what happened when you haven’t worked in over a year and your independency is higher than being a team player? Mostly, I am out of practice. I can’t be a team player when I am blogging: that is for me and only me, I organised and motivate myself […]

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Diagnosis: How I Feel Five Years On…

A casual Twitter conversation launched me right into this; right back to the moment when I was diagnosed with Crohn’s Disease: How much from the day I was diagnosed with IBD do I remember? I remember the fear. The unknown factor. I remember the hospital trolley I lay on whilst I wanted for my scope. I remember the pain I was in, the unbearable agony my stomach was giving me; that was no longer just the nerves of being in hospital, alone. I remember the clinical setting, the clean smell of hospital and the idle chatter of the endoscopy nurses. […]

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Being Medication Free: It’s Effects on My Body

Let me begin by stating some facts: Since I was diagnosed in 2011, I have had only two short spells when I did not take any medication for my condition. Those two periods of time were only a couple of weeks long in each case. I have tried all the conventional medications for my Crohn’s disease – meaning I have not taking any experimental or trial drugs to help my condition. My last method of controlling my disease was surgery. Let it be known that I do think that medications can help IBD. There has been many years of information, […]

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Happy Surgery-iversary…?

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Painkiller Addiction – My Other Recovery

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A Day in the Life – The ROManTIC Trial

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One Year On

Three hundred and sixth five days. A whole year; twelve months. We sat in traffic. It was a busy Wednesday morning rush hour. I’m anxious, excited and ever so scared. It felt like make or break time; would these doctors also recommend surgery? Did I have more choices than the scalpel? I was in agony. I knew I was sick and I knew that I would probably choose surgery but who wants to make that decision? Without more opinions and more information? No, today was necessary. I was curious about the new and different hospital; explaining my history to a […]

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Coming off “The Radar”

I’ve had Crohn’s disease for over five years now and I think in all those years I have never ever been off the departments radar. You know what I mean right? I’m always causing trouble. If its not for being in hospital on their ward, I am taking biological medication and they discuss me in their weekly MGT meetings. Sooner or later I become unstable so I am then discussed because my case is complex and complicated; they discuss possible new ideas and plans for me. I imagine once I was a surgical candidate – the first time around! – I was […]

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Remission: I AM IN IT

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Surgical Review – 12.12.16

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Going Medication free..? Is this *the* IBD dream?

I received correspondence from my GI yesterday, following my clinic appointment with him last Tuesday. It made for an interesting read: “I am sorry you came to separate surgeries, initially an extended right hemicolectomy and then a subtotal colectomy. We have still got you on Vedolizumab and I am not a hundred percent sure this is the right choice for you at present. In theory you have been completely down staged surgically and so it maybe possible to trial you without treatment. Presently, under NICE, Vedolizumab was the last option I can provide without looking into trials. I note you have […]

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