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.

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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August 2017

Boy oh boy, August, you have been hellish. I had planned on having some annual leave and spending some time back home in the Midlands, but my body had other ideas. It started in Mid-July as just some uncomfortable abdominal pan after eating so I didn’t think it was too serious; I altered my diet and drank more fluids, took it easier. But it did not let up, not at all. I had to seek some medical attention: which was hard when youre in the middle of transferring your IBD care from one hospital to another. I had several admissions, […]

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Happy Stomaversary!

What I’ve Achieved in Twelve Months with my Ostomy   Well, me and Priscilla have been belly buddies for a whole year today. It feels like such a long time but it also feels like nothing, like I’ve clicked my fingers and here we are. But what have I done in these twelve months since that fateful day of ostomy surgery?   I survived another surgery! That would make two in three months. My hospital stay would come in at a total of 22 days. Most of my days were good but these were all post op. I changed my […]

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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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Life Lately | Being Organised

I am in my element, when I am planning and organising. I like the lists. The to-do’s to make. The notes to make. The feeling of accomplishment when things are in their place. The relief I have when things have been done my way, to my particular schedule. But it runs deeper than just that. Why do I like to be organised? Some of it comes from having a plan and sticking to it. Knowing I have an end goal and I like to meet them. I am a goal orientated person, a detail orientated person. But a lot of it […]

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The What and Why: Vitamin B12

Teeny tiny vials of energy It was when I was in the throes of being assessed for surgery, we discovered that removal of my terminal ileum – my first surgery; right hemicolectomy – would mean I would need Vitamin B12 injection following my recovery. What is Vitamin B12? It is an important vitamin needed in the body to help keep your nervous system healthy. It is what helps create new cells within your body, for not only growth and repair but for general maintenance. Whilst it is produced in the liver, it is absorbed in the small intestine. B12 is […]

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Life Lately | The Guilt, Oh The Guilt

Disclaimer: This post is not happy and positive. Sorry, not sorry. Anyone who follows me, or reads this blog will realise there has been a little bit of a lull in my posting. And somehow feel like there is an explanation due as to why. There are good and bad reasons to why I’ve been unusually quiet in my sharing of my experiences of living with chronic illness. And they may feel like excuses and not at all significant in the big scheme of things, but they are honest and truthful – my primary goal here. I thought about not sharing, […]

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When Does Having an Ostomy Feel “Normal”?

I am a firm believer in self confidence. Feeling sure of yourself and who you are is a big part of feeling good about life. But do you know what makes self confidence difficult? An incurable chronic illness. And all the things that come with it. What I struggled with was, after almost five years of living with Crohn’s Disease, I needed to have my colon removed and an ileostomy formed. The whole process of how it was going to change my body played on my mind a lot in those days leading up to surgery in August 2016. How […]

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GI Clinic & MRI Scan – 27-28.06.17

Due to my Gastro referral still being in the pipelines, I decided it was probably a good idea to still attend my outstanding appointments at Good Hope. So despite living 90 miles away, I made the journey back home on Tuesday for my clinic appointment with my consultant and the pending MRI scan the following day. One miserable train journey later, I was at Good Hope; primed to talk IBD and my health’s current state. I won’t lie, moving away from home has been stressful and turbulent at times, I haven’t always been 100% on track. Which means some days […]

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June 2017

June. What an exciting month! The good work of last month continues: the work is going well and I’m working hard despite my teething problems and struggles. Living alone is challenging but I am enjoying finding out what I can do and how I feel about myself, on my own.  I’ve receive some great and wonderful advice about working and my life with an ostomy: Just let it happen.  It seems like something so simple but it is definitely hard for me to do, and this month has been no exception. I’ve fought off two bouts of dehydration and one […]

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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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Life Lately | Struggling in The Heat

Guys, Summer is not my friend Now don’t get me wrong, I enjoy summer but I like to be inside enjoying it. I hate being too hot and just prefer to be cool instead of roasting myself in the sun like a chestnut. I’ve felt this way for all of my teenager years, into adulthood and it’s been a struggle to have a good summer. Working also added some drama to this too, unbearable traveling to and from work, both on public transport and driving, I just always long for the Autumn around about July. What had made my dislike […]

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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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London: for Business not Pleasure

London. The centre of bowel related things I love going to London, the capital of my country. I never get bored of going, there is always something new to discover; no two trips are the same. It’s expanse, it’s network of tubes and trains, it’s hustle and bustle; it calls to me. I am a Brummie girl after all. A couple of weeks ago I had a public engagement in the City. I got to attend a small fundraiser and research presentation on behalf of the Bowel Disease Research Foundation. They are advancing the cure and treatment of bowel disease, […]

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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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Your Period with an Ostomy

It’s something that happens all of us ladies, but is it something you consider discussing when you get diagnosed with a chronic illness? It certainly wasn’t high on my priority list with my specialist and IBD nurse at the beginning of my #adventureswithachronicillness A little medical history on me: I was diagnosed with PCOS – polycystic ovary syndrome – when I was 16. My IBD diagnosis happened seven years later in 2011. My PCOS was controlled mostly by birth control of which I tried many before a oral contraceptive settled my symptoms down. My periods were light and pretty painless. […]

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Meal Planning – June 5th

I’ve had a couple of weeks without meal prepping or planning and guess what happened?  I had no end of stoma problems. The extreme heat didn’t help but I’ve been lazy and neglectful of my food and preparing it. Also add in that, I’ve had two weeks back to back of visitors or visiting home, so my lack of prepping has been down to having no time to do it. This weekend I set myself some time to just get on with all those little things that needed doing –  laundry, doing some baking, slow cooking time as well as […]

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Life Lately | Getting My Career ‘On’

Learning something new filled me with so much excitement! There is no fear in me, not these days. Of course, I still get nervous and anxious but I do not fear the unknown. Given my recent past, I see no real reason to be scared. This past month I’ve been in training with my new job. I am working in a medical field and I bloody love it. It is ostomy related but despite the fact I actually have one, stomas and all medical things fill me with excitement; it sort of makes me wish I’d become a doctor. But, I might never have […]

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Knowing Your Limits

They say in order to grow you should be testing your limits, pushing yourself forward, outside of your comfort zone. But what is there to be said for knowing your limits? For me, limits have been a tricky business these last couple of years. I couldn’t ignore my diagnosis of my chronic illness, but I didn’t want it to hold me back either. So, I would test just how far I could go without it rolling out a huge STOP sign in the way of my plans. And whilst I was on medication; that was sometimes higher than at other […]

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