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, I made the firm transition from Good Hope to Peterborough City when I saw my new Gastroenterologist. Gone are the days of being smiled and waved at by plenty of the departmental staff, the familiarity of the hospital, of the memories, really;  this was all new, all unfamiliar and despite knowing I had to make this change, I was still incredibly nervous and apprehensive.

I wanted to know I had made the right decision to move. I wanted to know that I was going to be taken care of, that I was going to be taken seriously and desperately hoping I wouldn’t have to be negative. Thankfully, it was all smooth sailing. I complied a list of questions, most of which were answered and I came out afterwards, without any delays on the appointment or the subsequent blood tests, with a feeling of satisfaction.

First appointments with new doctors are always abit unfamiliarly familiar. In the sense that, setting the tone is important. Whilst you want your new doctor to be sympathetic and treat you well, you should also be direct and straight to the point; which can come off being bossy. It’s a fine balance, but you learn. I had much to ask my new consultant which included:

  • If I could have my flu jab, given how soon my next Vedolizumab infusion was going to be.
  • How and when they were going to monitor my Vedolizumab.
  • Following that, how were they going to monitor my IBD in general.

I made more notes about my ovarian cysts, my rectal stump, my deficiencies as well as my liver monitoring but being so new on Vedolizumab and having recently been admitted (July) the conversation stuck to my IBD and treatment plan. I gave a quick but accurate summary of my surgeries and my needing to have Vedolizumab on multiple occasions in the last eighteen months and it was concluded that this was going to be my long-term plan. Good to see my application for the funding of the drug actually specified that I wasn’t to be removed from it, regardless. He was somewhat shockingly impressed that my first attempt of being on Vedolizumab was weeks after it was NICE approved in 2015. Yep, that’s just how my IBD rolls, I said, half jokingly. But joking aside; I didn’t get to stress just how unpredictable and complex my IBD can get, especially these days. We did my usual IBD / Vedolizumab bloods and he would see me in the New Year for an update on the treatment plan; possibly schedule some testing, maybe.

I have another appointment to see the same team, in about six weeks time; in between infusions. Unsure why, as this isn’t what was discussed and it’s currently on a date I can’t make. But we go forward, building new relationships.

In these early stages, nothing is yet as it I would like it. And unfortunately, I am always going to compare my IBD nurses to my two wonderful ones who gave me constant care when I needed it the most. For all those admissions, those infusions I would need, the scopes I would have, the constant emailing some weeks, the reassurance I needed from time to time. I haven’t had to need any of that yet so I can’t compare. But I can’t help but see the differences. One good thing has already come from being in Peterborough; appointments get sorted, promises are kept and I am kept informed. That is all I can ask of them right now, before, anything else happens.

I mustn’t be afraid to fight, to stand up for myself or speak when I need to express my opinion. 

I need to remember that and not be blindsided by all the familiarity of the newness.

Life Lately | Being Organised

I am in my element, when I am planning and organising. I like the lists. The to-do’s to make. The notes to make. The feeling of accomplishment when things are in their place. The relief I have when things have been done my way, to my particular schedule. But it runs deeper than just that. Why do I like to be organised? Some of it comes from having a plan and sticking to it. Knowing I have an end goal and I like to meet them. I am a goal orientated person, a detail orientated person. But a lot of it […]

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Life Lately | The Guilt, Oh The Guilt

Disclaimer: This post is not happy and positive. Sorry, not sorry. Anyone who follows me, or reads this blog will realise there has been a little bit of a lull in my posting. And somehow feel like there is an explanation due as to why. There are good and bad reasons to why I’ve been unusually quiet in my sharing of my experiences of living with chronic illness. And they may feel like excuses and not at all significant in the big scheme of things, but they are honest and truthful – my primary goal here. I thought about not sharing, […]

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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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Life Lately | Getting My Career ‘On’

Learning something new filled me with so much excitement! There is no fear in me, not these days. Of course, I still get nervous and anxious but I do not fear the unknown. Given my recent past, I see no real reason to be scared. This past month I’ve been in training with my new job. I am working in a medical field and I bloody love it. It is ostomy related but despite the fact I actually have one, stomas and all medical things fill me with excitement; it sort of makes me wish I’d become a doctor. But, I might never have […]

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Life Lately | Stuck, Confused or Lost?

It’s difficult when you have to be a ‘team player’ and ‘independent’ too How many jobs have I applied for when this phrase is used time and time again? It is of course a valid and acceptable quality for most candidates. Prove it, get the job, work hard and this is like second nature. But what happened when you haven’t worked in over a year and your independency is higher than being a team player? Mostly, I am out of practice. I can’t be a team player when I am blogging: that is for me and only me, I organised and motivate myself […]

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Life Lately | The Big Move

The heat is on, so to speak. It is a week until I move. One week, a whole seven days and packing is hitting me like a brick. When did I accumulate so much stuff? It is giving me all the anxiety and stress I was hoping to avoid by being proactive these last couple weeks. But delays in finding a place to rent meant I had one week less to get sorted. Admittedly, it has been going well and I have every confidence that next weekend will go smoothly. But, let’s talk about what’s actually happening. For the first […]

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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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The 29th Year

I’ve eaten a lot of cake this weekend. And it was birthday cake too! And I’m sure it’s not the sugar high I’m on, but this has been one hell of a year. Despite being very aware of the fact that this is the last year of my twenties, I want to celebrate all the good – and the bad – things that have happened whilst I was twenty-eight. Hopefully, this is all in chronological order! Quick prelude: My Vedolizumab cycle had failed. I met my kick ass, adorable as hell surgeon. He advised a resection would be the best way to go forward. […]

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Life Lately | Getting a Health MOT

Guys, lets talk about looking after yourself. I know that this might be easy for me to say – couple of months into remission with my Crohn’s, preparing for a new and exciting job, coping well with my stoma – but looking after yourself is important. So important. Actively being present and finding out what works best for you. I am somewhat more able to do this now because I am not unwell. For me, this now means getting my Vitamin B12 and changing my contraceptive.   Since my first surgery, I’ve known I need to have my B12 checked. […]

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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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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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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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Life Lately | The Challenge

I usually don’t get into this whole ‘giving something up for Lent’ thing. I’ve never been particularly religious or felt the need to give something up to prove something either. But I can see the logic behind it; trying to do something new for 40 days and see if it sticks. And this year, I think I might just be in need of this. Of course, things for me have been great lately and I don’t apologise for that. I fought hard to get to where I am today. I had to get ready for surgery #1, recover from that, […]

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Life Lately | Stoma and Ostomy Lifestyle

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. […]

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My Note to You

My boyfriend has never seen or experienced me without my IBD. We met a couple months after I was diagnosed. That is now almost five years ago. It’s been my longest relationship to date and I hope it’s the only one I now have. At the start, my disease was under control and I was able to have some sort of life whilst being ill. We acted like a couple of just normal people, you wouldn’t have known I was chronically ill. I kept him away from my hospital appointments – wanted to be a big girl with her big […]

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Seriously?!

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. […]

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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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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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Just… *exhales and sighs*

I feel rotten today. I spent Tuesday afternoon onwards at my boyfriends house. I don’t spend alot of time there because of recent problems I’ve had with my Crohn’s, its easier to be at home. But we had a night and a day off together so decided to spend it together. And even though we have been together for almost 4 years now, I still don’t feel comfortable enough to just get up and walk to the loo and be gone, for sometimes ages; whenever he lives. Even when my Crohn’s is going through a good patch; which now definitely […]

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