“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 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 Reminder that I’m Not Normal

I sit in the bathroom, looking straight ahead to my ostomy bags and accessories. I smell the clinical, medical appliance nature of them, but they don’t look medical. I know the feel of my bag, the crinkle of the fabric again my waistband. The grey colour that disappears under my clothes, concealing my medical condition.  An ileostomy. My stoma. Pricilla, the drama queen, coming shockingly into my life 10 months ago. I feel my bags staring back at me. I feel the weight of the bag that sit against my skin. I feel the heavy output inside, the movement of […]

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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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Learning to Not Sweat the Small Stuff

I am constantly reminded that my life is different. I look back in time, to years gone by and remember just what I’ve been through. Things are different. So much has changed. Not only is my own life different but I am different too. I’m learning to not let the small things bother me as much as they used to. I have had to accept this since I was diagnosed – a chronic illness forces you to take care of yourself, in ways you wouldn’t have before. You become more careful and calculated, abit cautious from keeping onto of your […]

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The 29th Year

I’ve eaten a lot of cake this weekend. And it was birthday cake too! And I’m sure it’s not the sugar high I’m on, but this has been one hell of a year. Despite being very aware of the fact that this is the last year of my twenties, I want to celebrate all the good – and the bad – things that have happened whilst I was twenty-eight. Hopefully, this is all in chronological order! Quick prelude: My Vedolizumab cycle had failed. I met my kick ass, adorable as hell surgeon. He advised a resection would be the best way to go forward. […]

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Changing Attitudes

13.06.16 I stared down at the box of tablets in some sort of disbelief. How did it get to this, needing to take anti depressants? It’s week five of my post op recovery. I had surgery in mid- May on my bowel and to remove a cyst on my ovary. Things were going well; I was healing from my incisions and I was getting back to a normal diet. Then two weeks ago, things took a horrible turn. I was sick. On and off for 36 hours. I honestly haven’t felt well since. No one can tell me if this […]

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Painkiller Addiction – My Other Recovery

Despite being chronically ill for the past four years, I’ve never thought of myself as needing painkillers to get through the bad days. Not that my bad days weren’t bad, I was just able to manage my pain. But surgery changed all that. I had planned IBD surgery on my bowel in May 2016 and  the one thing I was terrified was the pain I was going to go through. I knew they would keep me dosed up on morphine in hospital but I would not be allowed home with it. I had to get myself through recovery and out the other side. I […]

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When Will My Life Begin?

Last week, I had several rough days when I was full of self doubt and getting utterly frustrated with many aspects of my life. I wasn’t going to share how upset and angry I had been feeling but I thought, no, I am not going to deny myself this part of recovering and having a chronic illness. Here is the note I wrote to myself in the depths of feeling just stuck.

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I am not *quite* used to this, not just yet

This weekend I was in London; I had an amazing time, look! But boy did I suffer. It was a very long day; with an super early start and a late finish. I would do it all over again, even with the soreness I felt the day after. My point here? Well, its a nudge, a reminder, a mini wake up call. I am not like everyone else, I still have an illness that tires me out when I try my best to be ‘normal’ and push myself to act like I am. In the mist of being away in […]

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Sometimes; it just hits you, hard

How long does it take you to accept something?  I’d be lying if I said I hadn’t be terrified to see my stoma. The first time I got to see it, I was high on morphine and was desperately trying to understand what was coming out of me and what I was attached to. PICC line? Check. PCA pump? Check. Catheter? Check. Abdominal drain? Check. Ostomy bag…? Check. I felt the outline of a bag underneath my gown, curious to see it but equally scared and nervous. How much of that was down to the drugs? How much of that feeling […]

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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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2017 Goals

In 2016 I made a conscious effort to set myself realistic goals and hoped to hell that I could achieve them. I found that keeping goals helped me focus on something, especially when things got shitty and problematic. So I’ve set myself some specific health ordinated goals. These are things I wanted to achieve once I had recovered from my op in August and are focused around building myself and my life around my ostomy. Yes, it is that fundamental to who I am. But I wanted to also find things to work on, away from my health. These goals are: Be better […]

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Grieving: Those Waves Don’t Stop

They “prep” you for surgery; you hear that a lot in the weeks and days leading up to an operation. Medically, you should be fit enough to withstand the trauma your body is going to under take. You should be aware of the potential dangers, prepare yourself for things to be different than what you’re expecting, what you’re thinking could happen; even if you’ve had surgery or this surgery before. What about mental preparation? Do the doctors ever prepare you for surgery? Apart from what I’ve mentioned above, how does anyone prepare for surgery? I was a novice to it all in May, there […]

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ONE WEEK TO GO

Seven more days of having all my insides, still inside of me. Seven more days of this constant, terribly draining pain. Seven more days in this current chapter of my IBD life. I know surgery isn’t a magic or quick fix. I know I will be in pain afterwards, a different pain from the one I’m experiencing right now but I am hoping this will be controlled better and not be constant once I’m off painkillers. I know its a big deal for my body to be put through; the worst its been through is a flare up four years […]

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Sunday; the night before

Feeling nervous about tomorrow’s appointment at the surgical clinic. Want to have it all booked and sorted so I know what I’m working towards this Summer but really dreaded it finally being in black and white. *** I know this is the best option right now. In fact, it’s sort of my only option right now. I’ve failed everything else, and even though the combination of biological drugs have made my colon better in the past twelve months, my terminal ileum is a mess. And it needs to come out so I can move forward; in so many ways! With […]

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Just… *exhales and sighs*

I feel rotten today. I spent Tuesday afternoon onwards at my boyfriends house. I don’t spend alot of time there because of recent problems I’ve had with my Crohn’s, its easier to be at home. But we had a night and a day off together so decided to spend it together. And even though we have been together for almost 4 years now, I still don’t feel comfortable enough to just get up and walk to the loo and be gone, for sometimes ages; whenever he lives. Even when my Crohn’s is going through a good patch; which now definitely […]

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Misery DOES NOT enjoy company

I am feeling utterly miserable today. I don’t know what has gotten into me, but I don’t feel happy at all. Maybe it’s the 4am wake up call my subconscious gave me this morning, the belly pain that started up soon after my eyes adjusted to the sun coming up, or even the denial of why I was awake at that time. It could be the lack of activities I have to do at work today. Or the feeling of this week dragging out and knowing the weekend will fly by, once again. But I just know I’m not a […]

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Professional ‘help’; here we go again

… I sat there, in the unused doctors room, filling in paperwork with a counsellor. I pause before all the sentences, wondering where my stupid emotions fall on the scale of 0 to 5. I think about how bad I feel about who I am, how I behave and wonder if I will ever stop thinking and feeling so utterly negatively about myself. I think about how most of these thoughts have been since I got my crohnie butt out of hospital two years ago and went back into “life”. I think about how unfair this is all has been and how bleak […]

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Unhappy and Empty.

I’ve been without my blog for two months. And those two months have been possibly my worse for a long time. I came back from holiday and returned to work. My support group has gone officially live. I’ve taken two new Crohn’s medications, four rounds of antibiotics, packets of painkillers, becoming slightly dependent on Tramadol and felt so utterly depressed, alone and isolated I don’t know what to do with myself. So I am turning to writing to help soothe the cracks in my mind and in my heart. On the most simple level of feeling, I am tired. I’m tired […]

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