Life Lately | All This Familiar ‘Newness’

This feels oddly familiar. I’m not sure I like it.

I’ve found that this phrase gets said alot in regards to my Crohn’s Disease. Things come and go in waves, in cycles some years and they almost always feel like deju vu. But for the most part, the fact that they are familiar gives me a certain ability to cope with them, time and time again. It sucks that the same things occur on a some-what semi-regular basis but I take comfort with the mantra; “I’ve done it before, I’ll do it again.”

A certain piece of mind, if you will.

This week, I made the firm transition from Good Hope to Peterborough City when I saw my new Gastroenterologist. Gone are the days of being smiled and waved at by plenty of the departmental staff, the familiarity of the hospital, of the memories, really;  this was all new, all unfamiliar and despite knowing I had to make this change, I was still incredibly nervous and apprehensive.

I wanted to know I had made the right decision to move. I wanted to know that I was going to be taken care of, that I was going to be taken seriously and desperately hoping I wouldn’t have to be negative. Thankfully, it was all smooth sailing. I complied a list of questions, most of which were answered and I came out afterwards, without any delays on the appointment or the subsequent blood tests, with a feeling of satisfaction.

First appointments with new doctors are always abit unfamiliarly familiar. In the sense that, setting the tone is important. Whilst you want your new doctor to be sympathetic and treat you well, you should also be direct and straight to the point; which can come off being bossy. It’s a fine balance, but you learn. I had much to ask my new consultant which included:

  • If I could have my flu jab, given how soon my next Vedolizumab infusion was going to be.
  • How and when they were going to monitor my Vedolizumab.
  • Following that, how were they going to monitor my IBD in general.

I made more notes about my ovarian cysts, my rectal stump, my deficiencies as well as my liver monitoring but being so new on Vedolizumab and having recently been admitted (July) the conversation stuck to my IBD and treatment plan. I gave a quick but accurate summary of my surgeries and my needing to have Vedolizumab on multiple occasions in the last eighteen months and it was concluded that this was going to be my long-term plan. Good to see my application for the funding of the drug actually specified that I wasn’t to be removed from it, regardless. He was somewhat shockingly impressed that my first attempt of being on Vedolizumab was weeks after it was NICE approved in 2015. Yep, that’s just how my IBD rolls, I said, half jokingly. But joking aside; I didn’t get to stress just how unpredictable and complex my IBD can get, especially these days. We did my usual IBD / Vedolizumab bloods and he would see me in the New Year for an update on the treatment plan; possibly schedule some testing, maybe.

I have another appointment to see the same team, in about six weeks time; in between infusions. Unsure why, as this isn’t what was discussed and it’s currently on a date I can’t make. But we go forward, building new relationships.

In these early stages, nothing is yet as it I would like it. And unfortunately, I am always going to compare my IBD nurses to my two wonderful ones who gave me constant care when I needed it the most. For all those admissions, those infusions I would need, the scopes I would have, the constant emailing some weeks, the reassurance I needed from time to time. I haven’t had to need any of that yet so I can’t compare. But I can’t help but see the differences. One good thing has already come from being in Peterborough; appointments get sorted, promises are kept and I am kept informed. That is all I can ask of them right now, before, anything else happens.

I mustn’t be afraid to fight, to stand up for myself or speak when I need to express my opinion. 

I need to remember that and not be blindsided by all the familiarity of the newness.

“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 […]

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The Return of… Everything

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 […]

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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

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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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

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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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…?

May 12th. It is forever etched into my brain. We’d been able to control, for the most part, my disease with medications and ‘diet’ for the five years prior to that. But, somewhat inevitably, it came down to needing a clinical trial or surgery. I opted for surgery but debated the toss for weeks after choosing. I was going to need testing to predict the type of operation I would need and I still went back and forth throughout all that testing. But once we had a plan, I was keen to move forward. The pain, the nausea, the inability […]

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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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A Day in the Life – The ROManTIC Trial

Two weeks ago, I was invited to the Royal College of Surgeons in London for discussions of a new trial for Ileocecal Crohn’s patients. This has been the first time I’d been invited – well, I had sought out this day for my own medical geeky-ness – to participate in something so formal and important as a possible trial. Its objective was to gain the perspectives of both patients and doctors in to whether the premise, the thesis of this trial, was valid and if it was, how it was then going to be done and its hopefully outcomes. I […]

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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

So, this week is proving to be quite good. And I want to share my good news, because lets face it, sometimes it happens so infrequently, I just get too excited. Today I’ve had the results of my MRI scan from last week come back, in the form of my IBD nurse calling me to cancel and rebook some appointments with me. I enquired to what was open on the system for me yesterday via email so when she called me, I was abit confused. But its good news! After just five months since my ostomy surgery (and four months of […]

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Forgetting about ‘The IBD’ and *all* that Anger

So it was Tuesday night and the boyfriend and I were discussing the previous day’s appointment with my surgeon. As much as I respect the logic and reasoning behind my surgeon’s need to keep me under his care and continue to test me – to make sure the Crohn’s is under control or if not, seeking the correct treatment option for me – but it has disappointed me. I honestly thought I was doing well, doing okay with mananging my stoma on my own, gaining weight, making more of my time at home and getting some light exercise. Since then, […]

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Surgical Review – 12.12.16

This is my surgical review for both my surgeries I had done this year. I had my Right Hemicolectomy in May and my Subtotal Colectomy in August. The second surgery superseded the first by giving me my ileostomy. I was sort of expecting to be on the way to being discharged at this appointment but I knew deep down that this probably wasn’t possible. It’s only been three months post-op and it seems whenever my surgery is discussed with me at the hospital, they added on additional weeks to my recovery because of already having Crohn’s disease. Apparently, this type […]

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