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.
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 […]
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 […]
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 […]
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. […]
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 […]
“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 […]
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” […]
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 […]
So, I’ve been doing a lot of specific blog posts on ostomy advice and milestones. What I haven’t been really talking about is what is going on with me, personally. After my first surgery, we had a game plan on what I was going to achieve and when. This included how well I was going to recover, how I would get on with my chronic illness wway from surgery and when I would return to work. Returning to work was going to mean retraining and I wanted time to mentally prepare myself for that. But nothing went to plan. Nothing. […]
I’ve had my ostomy for six months now. And throughout that time, I’ve been getting used to and getting more comfortable with changing my appliance. From the first couple of days that my ostomy existed, I was on TPN and hooked up to my feed for the majority of the time. I would have my stoma nurse come and change my bag every two days. But as I got moved off the TPN and onto solid food, she expected me to change my bag myself. I would do this, of course, it was part of the process of accepting my […]
How long does it take you to accept something? I’d be lying if I said I hadn’t be terrified to see my stoma. The first time I got to see it, I was high on morphine and was desperately trying to understand what was coming out of me and what I was attached to. PICC line? Check. PCA pump? Check. Catheter? Check. Abdominal drain? Check. Ostomy bag…? Check. I felt the outline of a bag underneath my gown, curious to see it but equally scared and nervous. How much of that was down to the drugs? How much of that feeling […]
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, […]
What was suppose to be a relaxing weekend in preparation for holiday to Cornwall with Ben this week, turned out to be somewhat of a small disaster: Going to Good Hope A&E twice in the space of 12 hours. Oh joys. Saturday started off fairly normal – breakfast, shopping in Lichfield, food shopping in Tamworth, followed by lunch at home. I had made chocolate flapjacks the afternoon before and had one after my lunch. Delicious, I thought. I’ve never been a big fan of them but at least I can eat them without pain now, right? Oh how wrong I […]
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 […]
So, knowing I was going to be in town today for a dental check up, I decided to do some writing in a local coffee shop. Got a loyalty freebie so I was all set. But my stoma had other plans. I was just finishing up my coffee and got my notebook out, and pain shoots through my bag. My stoma is working overtime to push something through; last nights dinner. Of course, we had chill. With beans in it. Corn chips on the side. I hardly drank yesterday when I think about it too, so just absolutely shit situation. […]
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 […]
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; […]
“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 […]