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 bag for the first time on Bank Holiday weekend, without a stoma nurse to help. They wonderful HCP held my hand through it and hugged me fiercely afterwards. I was shaking.
  • Post op; my pain was barely anything. I was up and out bed, walking around within 48 hours. I was so damn proud and motivated.

  • From September through to Christmas I would deal with appliance issues. Leaks, sore skin, changing my diet to suit my stoma, needing extra products and support. Finally after a few months, I started my current bag routine and ordered my first lot of supplies from Charter. Not looked back since.
  • October I would suffer from a full Blockage which left me in hospital for three days back on the surgical ward. Many lessons learnt that weekend.
  • I went on holiday, had spa days, went swimming and got more active with my stoma.
  • I started blogging more about what life was like with my ostomy as well as when my IBD went into remission, for the first time since my diagnosis in 2011.
  • I started becoming proud of what I was and who I was. I embraced the ostomy life and saw my stoma as what made me special instead of what make me different and not normal.

  • I loved the fact that my butt no longer gets used. One less thang to worry about, am I right?
  • My IBD went into proper remission in February and I felt so well, I decided to apply for jobs.

  • In April I moved away from home and relocated to Peterborough for my current job. Lots of change and if it wasn’t for feeling so well, I would not have taken this chance. Most of that wellness was down to my stoma functioning well and giving me much needed self confidence.
  • My training for my job was amazingly interesting and once I got into the office and started doing my role, I was beyond words to how supportive, understanding and fascinated my colleagues were about me and my stoma.

  • These last couple of months I’ve had issues with my IBD recurring in my small bowel but despite this, my Stoma’s had continued to give me all the life I need. I dread to think how my digestive system would be coping with this flare up if I still had my colon.
  • Today, my stomaversary, has been tough. I appreciate my highs but also reflect on my lows. I push myself forward by thinking about how much life has changed compared to twelve months ago.

I look towards the future more than ever. I don’t even think about my stoma stopping me, unless the days of having active IBD; I was overwhelmed by my disease and saw it as something to hold me back and it made me terribly sad. These days, my sadness passes easier. Most of this is because I poop into a bag and I don’t have the butt pain, fear of urgency and incotinence that I once had. My stoma has freed me in ways I never thought it would.

My stoma changed my life and I hope anyone who is might need one in the future, knows how life saving it can be.

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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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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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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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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Waking Up with a Stoma

I had been through recovery before, knew that the groggy fog of the anaesthetic would eventually lift. But this time around I felt utter relief. I was confident this time that this was going to be a new life for me. I felt around under my hospital gown for the scar, for the bag. The scar felt huge and like I had been ripped apart inside but in reality it was neatly glued together, all seven inches of it. The bag sat on my right hand side; I proudly touched it, flinching slightly at pain, feeling the outline gently, hearing […]

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Meal Planning – May 15th

This week the prep I did last weekend helped a lot, just like I knew it would be. And surprisingly I managed to stick to the plan I laid out of myself here. This weekend has been slightly different because I have a week that involved some evenings being away from ‘home’: I have a important doctors appointment – transferring my IBD and ostomy care, big scary step! – and I’m in London for an BDRF event too. This means, I haven’t prepped this weekend, I’ve chosen to relax instead. I feel slightly guilty for this because my weekends usually […]

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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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Meal Planning – May 8th

It sure has been a while eh? Well, I had many weeks where I was just feeling so uninspired to actually blog about my meal planning and prep for a few reasons: I was trying to rid my house of older food that had been neglected in the freezer I was doing my best to eat well but frugal I have a new job and relocated for it so packing and moving took priority! Now that has all passed, I am in a new routine in which meal planning and meal prepping have a leading role in my downtime away from […]

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Grateful for my Struggle

“In order for me to get here, I had to go there.”   I’ve never really sat down and thought about what having a chronic illness actually means. It means a great deal of things to different people, so there is no one true answer to what having  IBD actually is like. The wide spectrum of symptoms, side effects and general wellbeing leads us down very individual paths. My path has been around since September of 2011. But I’m sure there was a few bricks being laid in the months and even years before that fateful month. My problems were […]

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Advice: How to Solve Peristomal Skin Issues

If you’re a Stoma Owner, you’ve probably – at some point in time – had some sort of skin issue since your ostomy surgery. Below are potential issues, from most to least common. Identifying what has caused the problem is the best way to find a solution. 1. Change of stoma size This is important to note in the weeks after your surgery. As the intestine calms down, the size of your stoma goes down too. This means the template you use to cut your ostomy bag will change too. Recommended gap between stoma and your bag should be 1/8” […]

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Learning to Not Sweat the Small Stuff

I am constantly reminded that my life is different. I look back in time, to years gone by and remember just what I’ve been through. Things are different. So much has changed. Not only is my own life different but I am different too. I’m learning to not let the small things bother me as much as they used to. I have had to accept this since I was diagnosed – a chronic illness forces you to take care of yourself, in ways you wouldn’t have before. You become more careful and calculated, abit cautious from keeping onto of your […]

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Meal Planning – April 10th

Jeez. I suck at this. It’s been a rollercoaster of a couple of weeks so I’ve just been eating when I can. I have been prepping but not being writing it down or up here. That’s gotta change. These next two weeks I am home alone so making most of my meals just for myself. I did a little shopping this weekend to get some fresh yummy things in but most things are already in the freezer or in the cupboard; ready to make some great meals! Here is this weeks plan; again just the dinner time meals: Monday: Dominos!  Tuesday: Bubble […]

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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 […]

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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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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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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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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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