October 2017

Well, October was unexpectedly manic, health wise. I always go into a new month hoping for the best. Hope that this is the month that things get settled down and I start to feel better, day on day. And for the most part, that has been the case with my IBD and my ostomy. The taking of the steroids and having the Vedolizumab back in my life has helped a great deal to calm the internal storm that was raging in my bowels. Gone was the pain, gone was the cramping and the discomfort and the utter disbelief that this […]

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Vedolizumab: A Rocky New Start

Have you ever wanted to just get through something, so you can start to feel better? That’s how I’ve felt about this pending infusion. I’m not one to rush through something, to just reach the end and say it’s over and done with, I appreciate my struggle and woes as much as I appreciate and celebrate my highs and all those good feelings that come with them. But these past couple of weeks, boy oh boy have I just wanted to fast forward. My final loading dose of Vedolizumab was due on October 16th, a few days shy of the […]

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The “What is a Stoma?” Series

Welcome to Part IV in my new blog series on “What is a Stoma?”  This instalment covers the ostomy appliances, their accessories, how to obtain your prescription and your options for getting hold of your supplies. There are some differences in appliances depending on your type of stoma and some instances when it might be different, but otherwise this advice and information is for all types of stomas.  This is information for those living in the UK. Some differences may occur in Northern Ireland and depending on your location in the UK with prescription services, and some items aren’t yet […]

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The ‘Return’ to Work

I’ve never really returned to work before. There, its out there, I’ve said it! Pre-surgery IBD days, and here I talk about the period of time from my diagnosis until I was left unemployed four and a half years after that; I had bouts of ‘sickness’ and I never really had a prolonged period of time off work to get ‘better’. And upon my diagnosis, I was told to get ‘fixed’ and ‘come back when I could’. Clearly, they hadn’t really ever had anyone with a chronic illness before, and I was new to it too; so I went with […]

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The “What is a Stoma?” Series

Welcome to Part III in my new blog series on “What is a Stoma?”  This instalment covers the question of what exactly having a stoma feels like, possible diet & lifestyle changes, potential complications and considerations of living with a stoma and where to get access to support & advice for coping with having a stoma. The information below I have complied from various sources including current ostomates of all types. I hope that this show the wide variation in how each type of stoma is dealt with; not only medically but on a personal & emotional level too.  This […]

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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, […]

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Why I’m Keeping my Stoma Bag | World Ostomy Day 2017

Today is World Ostomy Day and I’ve been thinking about this topic for a while now. I’ve spoken about why and how I came to have my ostomy quite abit – you can read more under the category ‘ostomy‘ – but recently, I’ve been considered what would happen if I went permanent. You see, my ostomy is technically and surgically temporary. Which means I have my rectum and anus still intact. Part of this is because when I lost my colon to my disease – it literally ate it from the inside out in the Summer of 2016 – I […]

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The “What is a Stoma?” Series

Welcome to Part II in my new blog series on “What is a Stoma?”  This instalment covers the Digestive System 101, why and when stomas are needed as well as how they are formed surgically. Hopefully this gives you some insight into the many different reasons why stomas come to be, a basic but solid understand in the digestive system before I talk surgery!  This is not an extensive list of why, when and how stomas are created but that of the most common. Comments are welcomed, enjoy! xox Why Stomas are Needed The Digestive System Above is a diagram […]

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October

October 2017 Return to work! Vitamin B12 injection & bloods – October 2nd Contraceptive Implant Removal – October 3rd SCN check up – October 5th @ Pbo City GI – October 5th @ Pbo City Dietician – October 11th @ Pbo City Vedolizumab #3 – October 16th @ Pbo City End of steroids! – October 18th  Antibiotics – October 13th – November 3rd Vedolizumab #3 – October 25th @ Pbo City  

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September 2017

September was an improvement on August, for sure. I did spent the first week of the month in hospital, getting my flare up under control, addressing my obstruction and getting my medication sorted. I received my first dose of the third restart of my biological treatment – Vedolizumab – as an inpatient and that was the beginning of this new chapter. Going forward, I’ve been able to control my pain better with some stronger painkillers, found some more appetite with my steroids and I’ve been able to fight. I’ve got so many new appointments lined up with my new hospital […]

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The “What is a Stoma?” Series

Welcome to my new blog series on “What is a Stoma?” This is aimed as providing educational information about why, how and when ostomies are formed; dispelling common mistakes and myths surrounding them, giving advice on how to manage the basics of a stoma, navigating ostomy supplies as well as exploring not only physical landscape of living with a stoma but the mental challenges too. Over the next five Tuesdays, I will be sharing the information I have gathered and produced in a simple and understandable manner. I currently live with a stoma and have done for a little over […]

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Vedolizumab: Here We Go Again – Third Times a Charm

Today has been bittersweet. I feel like I’ve said that a lot, but the excitement of actually getting back into this whole ‘back on biological medication’ routine has taken over the fact that this was my last outpatient appointment at my hospital. If you’ve been following me for a while, you’ll know that I relocated at the start of the summer for a new job – read more here and here – and with that came moving my IBD care to a new hospital. It was a big challenge as I was, at the time, not receiving any treatment and […]

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“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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August 2017

Boy oh boy, August, you have been hellish. I had planned on having some annual leave and spending some time back home in the Midlands, but my body had other ideas. It started in Mid-July as just some uncomfortable abdominal pan after eating so I didn’t think it was too serious; I altered my diet and drank more fluids, took it easier. But it did not let up, not at all. I had to seek some medical attention: which was hard when youre in the middle of transferring your IBD care from one hospital to another. I had several admissions, […]

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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 […]

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