Speaking: Loud and Proud

Know what inspires me the most?

Other patients.

Other ostomy patients, other IBD patients. Those people who have a connection to me once I share my own journey.

I met these people last week at a Coloplast Care day. I spoke about how I came to have my ostomy, my IBD history in brief and how life has been since surgery.

I tried to follow my written document – you can read it here – but I ended up going with a flow of just my own words, right from the heart. Speaking in this way did make me unexpectedly tearful because even though I’ve been speaking about my journey in sections the last couple of months; in posts on my blog, remembering it in all of its entirety has been difficult to process. But it’s a grieving thing that I needed to do, I needed to get up there that day and talk. I needed that therapy, that catharsis.

 

It was freeing, a lot like my surgery has been.

I spoke with passion, positivity and I hope humility.

 

A few members came to talk to me after wards and expressed how bloody brilliant and brave it was to speak as candidly as I did. That got me smiling through some tears because I’ve never done it before and I wanted to be good; I wanted to express just how unashamed I am of being an ostomate, it is a badge of honour I wear with pride.  It might not be everyone cup of tea to speak of a stoma like that but I do because it is. My reality is completely different to what it was twelve months ago, even eight months ago, in between surgeries.

Speaking about those few months last summer was the hardest. I hadn’t truly realised just how fucking shit things were until I was given the gift of hindsight. My journey is mine and it is special to me. I don’t wish it was different, it happened because I am strong enough to take it. Both in it happening and being able to call it quits when I did.

Having that one to one connection, that bond between ostomates is why support groups need to keep going. It’s why one to one peer support is fundamental. It’s why appreciation and reflection is also important.

Life Lately | Pushing my Limits

When life gives you lemons, make lemonade Yeah, I relate to this way too much. And I say it time and time again –  surgery changed my life – but this time, it’s gone and given me something I would never have expected. A job. I kept it very hush hush and only really celebrated when I got offered it and accepted. So, I am now an employed lady. Hallelujah! Some might say that “Oh, it’s just a job. You’ve already worked whilst you’ve been chronically ill, what’s so different about this?” Well, it’s a job in a field where I really see […]

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April

April 2017: Paintball Training – April 2nd GP Appointment – April 4th 29th Birthday – April 16th #IBDHour – April 20th 8-9pm GMT Moving – End of April Paintball Weekend R2 – April 29-30th

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March 2017

Where has March gone? This month I’d been focusing on getting my butt into gear and into a some what work routine. I tried lots of different things to help me settle into a comfortable routine and pattern, whilst I still have the flexibility and freedom to do so. That has been going well, and of course it can’t be truly settled and sorted until I actually go back into employment. On that front, I have got a new job and I am moving away from home to do it. That is as much as I want to really say […]

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Why do you go to hospital? Is it because you’re in so much pain and need relief and answers? Well you’re like me then, only going when it is beyond your threshold and you need help. The pain was unreal and unbelievable earlier and every time I’ve been come into hospital I’ve always experienced pain; they are forever intrinsically linked in my head. So now, it’s incredibly hard to think I can still be here without feeling any pain. I feel quite fraudulent. Added to that, I am in the same room from my last admission; my ostomy surgery, all that pain, blood, fear, shock, disbelieve. I am […]

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GI Clinic 21.03.17

This has probably been the first time in forever that I haven’t really been bothered about going to see my Gastro. I haven’t really had any problems; I’m not taking any medications, my wounds are all healed, my surgeon is happy with my current progress being made and my stoma seems to be getting into a solid routine. All good on the symptoms front; nothing to report. But, I still attended because I felt it was high time he saw how well I had been doing, what I actually look like when I am well. And it was a good picture. […]

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“Adding scars to my body in order for a higher quality of life.”

I always wondered what sort of person wanted to have surgery. I always wondered how you could get to that point and want someone to cut you open. I always wondered, until it happened to me.   My Timehop is a good reminder of what happened a year ago, or two or three years ago. It serves to remind me just how things have improved. It allows me to reflect and really contemplate what has happened, how much I put up with, how long I was unwell for and just what exactly was my reality for so long. After I […]

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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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Meal Planning – March 20th

Last week started great for meal planning but as the week went on and I got sick one evening, it all then went out the window. But I did still eat well and pretty healthy – I cooked all my meals last week, that part I am proud, and I take that score and enthusiasm into this week. Here is this weeks plan; again just the dinner time meals: Monday: Beef Stew Tuesday:  Sausage and Mash  Wednesday: Pork Stir Fry Thursday: Butternut Squash soup  Friday: Saturday:  I have two hospital appointments, one day trip away from home for something v important […]

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Life Lately | Making Progress

Just when you think things aren’t going anywhere, life pulls you back in. If you’ve been following me for a while now, you’ll probably know that I haven’t work since before my first surgery in May last year. In fact, loosing my job was a big factor is why I finally chose to have surgery when I did. There was a plan to retrain after I had recovered from my Right Hemiocolectomy but my body had other plans. Here we are, seven months since my ileostomy surgery and I finally have the strength – both mental and physical – and courage […]

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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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Stoma Nurses; What makes them so important?

A couple weeks ago I got the chance to interview my  stoma nurse about her job role; this is Q & A with Nicola Jennings: Stoma Care Nurse at Good Hope Hospital in the Heart of England NHS Trust. What is a stoma nurse? The title for the role at the hospital I work is ‘Colorectal Specialist Nurse’, this incorporates stoma care. They are specialist’s registered nurses wo have gained additional specialist knowledge and experience in caring for people with colorectal cancer, IBD and other disorders of the bowel requiring surgery. The Role: We provide patient support at diagnosis and throughout […]

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Meal Planning – March 13th

I have been severally lacking in my meal planning for weeks now. I’ve no real excuse, I’ve just neglected it and messed about with my routine. Which is a shame, because it feels as if it was starting to stick abit more. Lately, there has been a lot of “winging” and just seeing what was available to eat, not much planning, or just a couple of days of planning, not enough for a post. But no more! I am back to it and I hope it results in better choices – I’ve noticed tighter clothes and whilst this has been […]

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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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REVIEW: ‘Managing IBD: A Balanced Guide to Inflammatory Bowel Disease’ by Jenna Farmer

Follow Jenna on Twitter @abalancedbelly and check out her website: www.abalancedbelly.co.uk Initial Thoughts “Managing IBD: A Balanced Guide to Inflammatory Bowel Disease” is just that, a balanced guide to navigating a diagnosis and life with IBD. Jenna was diagnosed in China after suffering with IBS for almost ten years prior. The pressing need to find out information – in English – and pursue good care in a foreign country, led her down the path toward her study in Nutritional Therapy and subsequently this book. She says early on that “being alone in a foreign country … forced me to become […]

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Acceptance

Lately, people have been asking me how I’ve become so okay with how my life currently is. I think they mean to ask ‘how have you been able to accept your stoma so well?’ because it’s only been a little over six months since my operation. I think it’s down to three things, really: I have lived with a chronic illness for five years. I’ve had all that time to build up my own way to accept whatever circumstances have been thrown my way; both with my health and a result of my health. So, I learnt a while back […]

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Life Lately | Finding Space to Relax

Life, right now, isn’t busy for me but it’s a complete struggle to relax. I say ‘busy’ in the traditional sense that I still currently unemployed so I don’t have a Monday to Friday 9-5 keeping me occupied. But, that doesn’t mean I haven’t been working. I’ve been spending my time writing and working on improving my ‘blogging game’ pretty much since 2017 started. Despite this, once I am through with my tasks for the day, I find it so hard to tear myself away from my phone and really relax. I used to be able to pick up a […]

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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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“I had to mature”

“I had to mature. I gained that ability to recognise what was REALLY important.” – Me, 23.10.16   There is nothing more scary, awful and plain inconvenient than being chronically ill. But, those people who are, are the best people I know. They have this amazing ability to see good in what hell they are going through. They smile when they are in pain, they celebrate the small victories they make over their body. They fight and struggle through the worse times. They are, in my eyes, amazing. I am in complete awe of them. I say this because, I too […]

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