Returning to Work…?

Today I attended a work coach appointment at our local Job Centre.
NB: I currently receive ESA because I’m unemployed and recovering from surgery.  I’m still yet to my surgeon for my post op check, but so far things have been going well with my stoma and my Crohn’s; I haven’t been left without any help or care!
So today was about seeing what will happen next. Usually, a person on ESA gets assessed but due to the situation at the DWP and my own circumstances due to surgeries, this has been halted for the foreseeable future. But it does not mean that I can’t look for work, if I feel up to it. More like, when I am discharge, comfortable with day-to-day care and management of my ileostomy, I will look into work NOT before then.
I have an appointment to return to the Job Centre once I have seen my surgeon – I will have also seen my Gastroentrologist in that time too; for an IBD check up, an update and some sort of plan going into 2017 – to discuss my work options. These include:
  1. work experience
  2. apprenticeships
  3. returning to part-time work or volunteering
  4. finding a full-time job

In the meantime, I need to get myself to a place where I feel comfortable with wanting to return to work.

 NB: I’ve been out of work since February this year; when the agency I worked for were told my current placement didn’t want me any longer. Even though I had been off sick days beforehand – I was experiencing the first wave of my Crohn’s flaring up – I was still shocked. I will not be going back to agency work; it does not fit with my new lifestyle or ethic.
I admit I am getting frustrated with being at home so much. With little money, I don’t have the freedom to go out and visit places like I would like to. Also having a temperamental stoma to manage who is still in its post operative recovery period, is tough. I am weary about going out of the house but I know  I need to, to start managing my ileostomy in a more normal daily pattern of activities. So I’m sort of stuck and caught in the same position until I am healed.
Am I healed though?
It would be sensible to wait until my surgeon has checked me out, my scar, my stoma, my butt too; making sure that I would be okay to go back to some sort of paid work without any major problem. I feel so well since my surgery, I want to get this part over and done with! I felt the exact same way when I finally found Humira and it gave me back my life after three months of hell following my Crohn’s diagnosis in 2011. I went a long time into being back at work before I had problems again. I feel fearful; I know that problems can just happen, without much warning or without consideration of when and where too. So, I know I need to take all the time I need to get well. Finding out what “well” is, this time around, has been challenging and continues to be an adventure of sorts.
People must see me and wonder why I don’t work. Even those who know I’m on ESA.
When I’m sat in the coffee shops in Lichfield, writing on my laptop or my iPad, there must be an assumption I am a student – thank goodness for youthful looking skin, I’m 28, well past being a student! – working on assignments. Alas, I am blogging. About my health. About my changing health – I’ve been a frequenter of our numerous coffee shops since I started this blog, over 5 years ago . About my secret, of what has gotten me out of the house in the recent months; my ileostomy. I am consumed by writing about it. Sharing my story, making it more normal, removing the stigma associated with it.
I need to remember I am still healing. My stoma recovery isn’t as short as my other surgical recovery. It’s at least 4 additional weeks of initial recovery, let alone being able to mentally cope with it. That can take months or even years. I think this is what I am specifically ‘rushing’; getting use to it. And I feel this need to be okay with this, right now, accept it really quickly, get on with my life. Get on with my life? What was I doing before this surgery exactly that I need to get back to? This is a new chance at life.
But I am still recovering. I’m trying to take all the time I need to make sure I’m okay. Everyone is so concerned about me; making sure that I don’t rush and ‘it’s okay if it’s not until next year’ and ‘we can cope with you being unwell for a while longer’ which is meant well enough but I feel my own pressure to get back out there and be a full functioning person in this house, this family, this relationship. I am tired of being the ‘sick one’. I desperately need to be doing something, seen to be doing some work of a description, to be useful, helpful, wanted and needed; instead of being useless.
Today; a step in the right direction with food for thought.
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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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How do I hate something that has saved my life?

No, seriously, how? Maybe the question should be ‘CAN I hate something that has saved my life?” or even “Can I hate something that has CHANGED my life?” Because, I can hate the fact that my disease was so bad, they had no other option than to remove my colon and give me my ileostomy. I can hate that fact until the cows come home, it still doesn’t change what happened. Does hating my ostomy make it easier to accept? Does this just make me negative and unable to live with it? I have no choice but to live with […]

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Vedolizumab: The Restart

Following my subtotal colectomy in August; my IBD team recommended returning to Vedolizumab. I had already tried Vedolizumab; receiving the three loading infusions last winter. This is where I was and how I was feeling as 2015 turned into 2016: “… So, it hasn’t gotten any worse, but the past year’s drug choices haven’t made it any better. I’m on a plato; and its going down, albeit slowly, over time. For me, the past 10 months haven’t been brilliant. They haven’t been the worse either, but I’ve noticed a definitely decrease in how well I feel in general, an increase […]

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Double Check Up – 22.09.16

It’s not unusual to spend time at the hospital for back to back appointments. But when they happen at different hospitals, it gets abit more complicated. We spent the morning travelling across the city to Queen Elizabeth Hospital (QE) for my liver check-up. I’ve been attending this particular clinic for almost three years since some routine blood tests revealed very high liver function results. Given my complicated IBD history, I’ve been seeing the head of the department, a Professor; and had lots more blood work done and specialised testing to give me a diagnosis. Not that I’ve ever needed one; […]

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One month post op

  “Time moves slowly but passes quickly.” That can be said for my recovery from surgery. I can’t quite believe its been a month already but in the same thought I can believe it. I’ve been experiencing recovery in real time and taken each day as it comes. It hasn’t been easy – but I knew it wouldn’t be – but its been better than my last experience of recovering from surgery. Mention-worthy moments: Not needing any pain relief since being discharge. Being able to manage my stoma – when its changed size and the output has changed consistency. Even […]

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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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Nottingham GI Clinic – 14.09.16

At least three months overdue, rearranged twice during my extended post op recovery; we finally made the trip to Nottingham to Queens Medical Centre to see my second opinion Gastroenterologist. It’s always abit weird to see how another hospital organise their clinics. This was our second visit to see Dr Moran – head of Digestive Disorders, specialising in clinical trials for IBD – to discuss my case. Since we last came in January, I’ve had two surgeries, three admissions, two MRI and a CT scan and a colonoscopy. Explaining the last six months was going to be fun. I took him […]

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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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A Spiral of Set Backs

I last wrote anything about my Crohn’s disease back at the end of June. That is almost six weeks ago but feels so much longer ago. And in retrospect, so much but so little has happened. It’s just been one thing after another; without the last problem really going away. So I was being discharged in my last post after my bowel infection from surgery. That problem resolved itself a week after I came home because of the antibiotics my surgeon prescribed to knock it out of my system. It seemed to do the trick; I was eating more, managing […]

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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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Pre Operative Assessment – 10.05.16

Its finally here; the pre op appointment! Before that appointment, I also met with the stoma nurse at the hospital; there is a small chance – 10% or so – that my operation could result in having a temporary ileostomy, so we discussed what one would look like, which side I would have it on, how the bag would fit to my abdomen and why it would be needed. If my surgeon finds extensive disease in my transverse colon he wishes to remove, he could very well create a ileostomy to help me out for a couple months before coming […]

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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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Two weeks and counting…

BLERGH but YAY This sums up how I feel right now. I’m looking forward to hopefully not being in this pain much longer but I am dreaded the lead up to the surgery date and what that morning will be like. Because its all new to me – being my first surgery and all – I’m really anxious. And apprehensive. It’s two weeks until my surgery. I’ve finally had all my paperwork for my pre op and my admission for the actual surgery. It’s come around fast. Faster than expected. Even though it was only a month away when I […]

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GYN Surgical Consult – 19.04.16

The morning after arriving home from holiday, we were back at the hospital, seeing yet another surgeon. Thanks to my colorectal surgeon’s quick referral, I was going to see a gynaecological surgeon to discuss the removal of the cyst on my left ovary that was discovered on my last MRI in October 2015. I’m very glad it only took a week to get into a clinic to discuss this with them; it had been the one thing that had plagued me throughout our holiday – sleepless nights and irritability with my additional pain levels – I was more worked up […]

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Colorectal Surgical Consult – 11.04.16

So yesterday was my second appointment with the bowel surgeon at my hospital where my IBD is treated. After a positive GI clinic appointment last week – which you can ready about here – I was in two minds to expect a date for said surgery – a limited bowel resection – so soon; at the very least I was hoping to be put on the waiting list. This consultant’s wait was roughly 3 months when I enquired at our last appointment in January; if this was still true – unlikely given the upcoming doctors strikes – that would put […]

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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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GI Clinic – 05.04.16

It has already been six weeks since I was last in clinic to see my consultant. What’s happened since then? My colonoscopy has been performed and the outcome known by medical and surgical teams at Good Hope as well as the specialist consultant in Nottingham. I have finished up my course of steroids. I’ve been having considerable pain when eating and whilst moving my bowels. This has now resulted in bloating and considerably more fatigue. I went into clinic wanting to know why my MRI from October 2015 and the colonoscopy from last month didn’t quite match up. I was […]

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