The Return of… Everything

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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, not really getting any answers or making any progress on the pain relief front.

Why was this happening? What was going wrong? Had I do something wrong? Had I caused all of this?

I was filled with dread and the fear of not wanting to find out what was actually wrong.

I remember sitting in a work meeting about IBD and hearing the statement: “stress usually triggers off an IBD event, taking up to 3 months to come out in the digestive system”. I guffawed, thinking it to be nonsense. My flare ups came suddenly and swiftly, I surely would notice them!?

I sat in Peterborough City Hospital, hearing the results from some tests coming back as “probable IBD flare up” – Where did this come from?! How had this happened? I was living a good life, how could I be in a flare up?! I cursed my consultant for leaving me med free, I cursed my relocating for a new job, my new lifestyle; I cursed myself for being so carefree and happy. I should have been abit  more cautious. Shoulda woulda coulda.

***

The gift and the curse of being between two hospitals means you have to coordinate.

I might have two sets of IBD nurses and two sets of IBD medical teams, but getting them to communicate can be a challenge. In the middle of August, I came home to the Midlands and got admitted to my old hospital, Good Hope. I have six years of IBD patient experience here, compared to my mere weeks at Peterborough City. I know the layout, the process, the NHS Trust and the teams involved in my care. I have a strong, personal and professional relationship with not only my two IBD nurses but also my consultant, my colorectal surgeon and the specialist ward. Their straight-shooting nature meant that previous testing from Peterborough was released over to them, and we were able to start moving forward with my care. Simply put; I was in a huge IBD flare up – symptomatic with physical and mechanical bowel obstructions – and needed to return to my biological medication I had stopped at the start of 2017. I was beyond gutted.

I was also scared.

I was feeling many things and the one thing that kept striking me in the chest was the feeling of defeat.

The utter helplessness I felt was crushing my spirit. I am usually so resilient and resourceful; taking stock of my circumstances and pick myself back up. But almost a month of being in and out of two different hospitals; witnessing some horrible things, enduring many sleepless nights, let alone all the loneliness; was taking its toll. I had no fight. I just didn’t want to be in pain anymore. And considering all that I had been through in 2016, this was nothing compared to that; I felt ashamed that I was letting this current situation take so much away from me. I was angry. And I could not find words, I could not get out of my head. I had to keep on fighting, even if it was draining me even more than I could bear.

Close to the end of August, I was admitted again to Good Hope; this time with some sort of fight. I was at my wit’s end. I needed help. I’d been off work for a month, with no plan to go back. Despite knowing I was in a flare up, I was still without medication, without any adequate pain relief, without a plan, it was making me angry. Then the sickness started and it did not stop. Obstruction got said, closely followed by possible surgery. In came my surgeon, forcefully taking control; ordering an NG tube, some Gastrograffin and a plan to resolve this blockage soon. Several failed attempts at the tube later and after one large solution of aniseed flavoured Gastrograffin, we were working on the blockage. The sickness, however, continued throughout the next 72 hours, I was dangerous dehydrated and a PICC line was being planned.

This spurred everyone on. PICC line was serious stuff. It made me take stock and wake the fuck up. 

***

The first feeling of your stoma working and your ostomy bag filling up with output after almost four days of no activity is not only a weird and unusual feeling – I don’t think I’ll ever really get used to my bag filling with stool – but it is wonderful. I probably had the biggest smile on my face when my nurse came to check my bag; she then prompty scrubbed “water only” off my board and replaced it with “light diet“. Six days with no solid food passing my mouth had made me not only cranky but also once more eternally grateful for my utter love of food.

Despite the frantic need to coordinate my care between Good Hope and Peterborough City Hospitals, we did get my Vedolizumab restarted within 48 hours of submitting paperwork to the CCG  for my case. The wonder of the NHS never ceases to amaze me and I am always going to be thankful for their dedicate to my IBD. It is not a complicated case but it is complex.

So where are we now, just over two months since this saga began?

My summer, in numbers:

We are now two weeks deep into an eight week course of steroids and one week into a nightly routine of pain relief. And things seem to have settled down a great deal. Some of that is probably due to the Vedolizumab doing some good – albeit slowly as it can take up to fourteen weeks to properly response to – but I am now able to not depend thoroughly on pain relief to get me through the days. 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.

Oh The Pain! Flapjackgate: My First Ostomy Blockage

What was suppose to be a relaxing weekend in preparation for holiday to Cornwall with Ben this week, turned out to be somewhat of a small disaster: Going to Good Hope A&E twice in the space of 12 hours. Oh joys. Saturday started off fairly normal – breakfast, shopping in Lichfield, food shopping in Tamworth, followed by lunch at home. I had made chocolate flapjacks the afternoon before and had one after my lunch. Delicious, I thought. I’ve never been a big fan of them but at least I can eat them without pain now, right? Oh how wrong  I […]

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To new beginnings…

Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options […]

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In for the long haul

Thursday, August 11th “I feel absolutely awful. If I’m honest, I’ve felt awful for weeks and I’m at the end of my tether. Please help me.” I was on the phone to my IBD nurse, begging for help. I’ve never begging for an admission but that is what came out of my mouth next; “I’d really like to be admitted.” She wasn’t shocked, just said she’d need to speak to my consultant and surgeon to find a bed for me on the Gastro ward – always going to be a big ask but I knew she’d come through for me […]

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‘RECOVERY’ AND BOWEL INFECTION ADVENTURES [15.06.16]

I was never given any real information on how to recover from surgery. Sure, I got details on what had happened to my body, what I was now missing and how to best adapt going forward but I never expected ‘complications’; even though they were there, in black and white, at the end of the procedure paperwork, to happen to me.  Complications included: Chest infection. Illeus (temporary stoppage in bowels). Damage to the bowel. Ureter damage. Internal haemorrhaging. Bowel obstruction. Stricture. Anastomotic leak. Wound infection. Urinary Tract Infection (UTI). Deep Vein Thrombosis (DVT).  Pulmonary Embolism (PE). All of which were most likely to occur soon after surgery, their chances diminishing the further […]

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RIGHT HEMICOLECTOMY WITH CYSTECTOMY – 12.05.16 – PART TWO

The weekend after surgery saw the most activity. This would be the removal of my catheter, getting out of bed for the first time and finally being able to eat. Having not been awake for the insertion of the catheter, the removal was pretty painless. It was more uncomfortable than anything and it did mean I would now have to get up and find the female toilet at some point; with a PCA pump and a bag of IV fluids. It’s quite amazing how much the catheter was doing for me because it wasn’t long before I needed the loo […]

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RIGHT HEMICOLECTOMY WITH CYSTECTOMY – 12.05.16 – PART ONE

So last time, I had just had my pre op assessment for my surgery. I’ll admit, that appointment was extremely helpful – it calmed me more than I had expected and I finally felt relaxed for my operation and I knew I had made the right decision. On the morning of my surgery – Thursday –  I packed my overnight bag with some pyjamas, face wipes, my phone charger, kindle and dressing gown. I was told I was being admitted via the Day Surgery Unit at the hospital at 1pm. My dad had kindly taken the day off, so we […]

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Spring forward

Nothing like spending a Saturday evening in the hospital is there? That’s where I was two weeks ago, after a painful afternoon of sickness, I succumbed to my body and was taken to our local A&E department. I got assessed, had my blood taken, lots of poking and prodding and then proceeded to wait for my test results. They came in, gradually over the next couple of hours; move from a stomach bug, to a infection, to a possible Crohn’s flare up, to finally a inflamed and angry liver:  my ALT level was 214  – it is usually between 0-45/50 […]

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Welcome Home

With another hiatus come and gone, its time to start writing again. Since my last post, I’ve spent two separate nights in A&E with Crohn’s related pains. Since then, I’ve been without any real help, it has been weeks and weeks of pain and frustration. That was up until the start of September when I was working too much, too hard, and I had a flare up. I struggled on, continued to fulfill my responsibilities at work, but would come home and sleep. I was too tired to make dinner, to wash properly without being in pain, too lazy to […]

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Time

I’ve spend a lot of time in the past couple months in and out of hospital for various things related to my newly diagnosed Crohn’s disease; leading to many hours of just sitting in a bed waiting around. I’m not a person to dwell on the cards dealt, so to speak; I tend to distract myself quite easily from all the medication, scans and general bad feelings surrounding Crohn’s; but I do think A LOT about everything else. And ‘everything else’ seems and sounds – out loud – so very trivial compared. Things like: how am I going to get […]

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48hrs

Thursday. Friday. Two horrible horrible days of inconsistent stupid drug related problems. High temperature. CT scan. Ultrasound. Generally being poked about. Too many talks about drug treatments. Question after question. But most of all my IV steroids thought it would be an excellent idea to bottom out my mood, take away all my positivity and turn me into a broken distraught mess. Lovely.

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Night Two

Night two back of Ward G18. I feel better in myself today – more appetite and general perkiness (but mostly due to the feeling of ‘a plan’ being formed, but more on that later) than anything else – got my canulla in, lots of bloods taken, drugs and observations too. The road to recovery is a long and winding one. A clique, but feels very truthful now that I’m back in a hospital bed for the third time in a month. Not much has changed here – in fact, I get recognised, would you believe it? – but something is […]

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Cancer

My dad told me yesterday, that almost every time I phoned him whilst in hospital last month, he thought I was going to tell him they had found cancer in me. That was what was making me so ill, that is what they couldn’t find for a week, that was the thing that was going to keep me weak and fragile – so unlike I’d ever been – for much much longer. Thankfully, they didn’t find any and won’t find any. I am grateful for that, in its saving grace, but his words will stick with me for a while. […]

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