Two weeks and counting…

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BLERGH but YAY

This sums up how I feel right now. I’m looking forward to hopefully not being in this pain much longer but I am dreaded the lead up to the surgery date and what that morning will be like.

Because its all new to me – being my first surgery and all – I’m really anxious. And apprehensive.

It’s two weeks until my surgery.

I’ve finally had all my paperwork for my pre op and my admission for the actual surgery.

It’s come around fast. Faster than expected. Even though it was only a month away when I got told it was provisionally booked. Since then all the pain I had been feeling at a mild level has definitely escalated. I’ve been house bound most days since we got home from holiday; being unable to leave the bathroom for good lengths of time during the day and having many broken nights of sleep to boot. So, if that is enough to go by, I am ready for surgery. Diseased bowel and a cyst without medication to help lessen the progress of those issues is tough. I know it could be worse and I could be forced to be tougher but I’m mentally drained. So I am hoping for the painkillers to keep working and I get through fourteen days without too much trouble.

We – the boyfriend and I – are due to go away to Cardiff on Saturday for our last weekend away together. I’m not feeling wonderful as it is, but I don’t want to not go. This is the tough part; having a body that could fail at any moment and not wanting to miss out on life. Controlling my emotions and pain levels go hand in hand; trying to be level headed, calm but also happy is difficult when all you feel is pain. Of not wanting to eat. Of having constant stomach ache. It would be nice if it could just disappear for while. But I know that won’t happen, and even if it did, when it returned it would be more intense. Constant pain is better than unexpected and stronger pain, right? I don’t know at this point..

I have 10 days before I am back in hospital for my pre op appointment. Hoping to get everything at home sorted by then, so I can focus on being calm. I know I need this surgery and I am ready for it but I am anxious and apprehensive. The unknown is what I fear the most but I have good people to look after me; nurses, doctors, family and friends.

This is just the next chapter of my IBD. 

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GYN Surgical Consult – 19.04.16

The morning after arriving home from holiday, we were back at the hospital, seeing yet another surgeon. Thanks to my colorectal surgeon’s quick referral, I was going to see a gynaecological surgeon to discuss the removal of the cyst on my left ovary that was discovered on my last MRI in October 2015. I’m very glad it only took a week to get into a clinic to discuss this with them; it had been the one thing that had plagued me throughout our holiday – sleepless nights and irritability with my additional pain levels – I was more worked up […]

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Colorectal Surgical Consult – 11.04.16

So yesterday was my second appointment with the bowel surgeon at my hospital where my IBD is treated. After a positive GI clinic appointment last week – which you can ready about here – I was in two minds to expect a date for said surgery – a limited bowel resection – so soon; at the very least I was hoping to be put on the waiting list. This consultant’s wait was roughly 3 months when I enquired at our last appointment in January; if this was still true – unlikely given the upcoming doctors strikes – that would put […]

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Sunday; the night before

Feeling nervous about tomorrow’s appointment at the surgical clinic. Want to have it all booked and sorted so I know what I’m working towards this Summer but really dreaded it finally being in black and white. *** I know this is the best option right now. In fact, it’s sort of my only option right now. I’ve failed everything else, and even though the combination of biological drugs have made my colon better in the past twelve months, my terminal ileum is a mess. And it needs to come out so I can move forward; in so many ways! With […]

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GI Clinic – 05.04.16

It has already been six weeks since I was last in clinic to see my consultant. What’s happened since then? My colonoscopy has been performed and the outcome known by medical and surgical teams at Good Hope as well as the specialist consultant in Nottingham. I have finished up my course of steroids. I’ve been having considerable pain when eating and whilst moving my bowels. This has now resulted in bloating and considerably more fatigue. I went into clinic wanting to know why my MRI from October 2015 and the colonoscopy from last month didn’t quite match up. I was […]

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Colonoscopy – 08.03.16

The information below is taking from the patient packet received with my appointment letter. Please contact your own hospital for information on this procedure, if you are requested one, as information can vary between NHS Trusts. What is a colonoscopy? A colonoscopy is a technique to look directly at the lining of the large bowel (colon) to try and find out what is causing your problems. A colonoscope is a thin, flexible tube with a bright light on the end. This tube is passes through the back passage and into your bowel. It allows samples of tissue (a biospy) or […]

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Moviprep – The Storm before the Scope

The fun of a scope is in the preparation. Said no one, ever. My scope is scheduled for a Tuesday morning (thank goodness for morning appointments!) but my preparation of my bowel starts the Saturday before; three days prior. On this day I start my low residue diet. Anyone with IBD will tell you they follow a low residue diet – a diet consisting on very little fibre, because that causes aggravation of the bowel wall, among other things – most of the time. Being on a low fibre diet for this amount of time is key because in order […]

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Pulling myself apart

Slowly but surely I am getting there. It’s the eve of my scope prep starting and I am hungry. I keep thinking this is the last time I will do a colonoscopy because I might not have a colon in a couple months. And boy is that surreal. I keep pulling myself between feeling super-duper positive about things and how I am happy this is finally happening after all the shit I’ve had to endure this last year – both with my medical decisions, the jobs I’ve lost, the plans and promises I’ve had to take back or break – […]

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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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Pre-Scope Assessment – 26.02.16

So today is my pre assessment for my colonoscopy which is taking place on March 8th. What is a pre assessment appointment? “Patients attending for a Colonoscopy procedure are seen by a pre assessment nurse prior to the date of their procedure. At this appointment the pre assessment nurse takes information from you and advises you how to prepare for the procedure. He / she will also give you the bowel cleansing medication and discuss your consent. At this appointment you are able to ask questions concerning the procedure, your medication and so fort. Failure to attend this appointment may mean […]

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High Five Friday – February 26th

So another week, another High Five Friday..! This week I’ve been trying to find answers. To many, many things. I’ve been job hunting ; so much fun *sarcasm* I’ve been to see my consultant and finally decided on pursuing surgery once my scope happens in two weeks. I’ve been trying to keep my mind occupied from thinking too much about being unemployed for much longer, what surgery is going to be like, why my steroids are giving me more pain than happiness and what I want to do with my chronic life.  So I guess I’ve been soul searching. And […]

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GI Clinic – 23.02.16

I’ve been due to see my consultant since December. The plan was to have a chat about what appointments I’ve had since we last saw each other, how I was feeling after finishing up Vedo – it was imminent to failure at the end of 2015 – and plan what we would do next. The latter of these three things has filled my mind with questions and full of confusion. I was unsure of what would come from my surgical option, what would come from seeing another Gastroenterologist at a bigger and more research led hospital and what would really […]

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Clinic Trial vs Surgery

With each step of my disease, I’ve become more and more like a squirrel. I’ve become the hoarder of information. Gathering all the relevant nuggets of advice I can in order to make the best and well informed decision I can. This is no truer that it is right now. I’m having to decide between enrolling on a clinic trial and having a surgery to help aid my Crohn’s disease. I’ve looked into both before, not so long ago, before I realistically started Vedolizumab; so probably last summer. I thought, of the two choices, I would happily take more drugs over having […]

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Navigating the ‘Chronic’

Some people would hide away. Some people would happily live denying what’s happening. Some people would keep it all inside. Some people would rather talk about anything but this. And what is “this” when its highlighted, bold, italicised and underlined? A life with a chronic illness.   When I was first diagnosed with Crohn’s disease, I was told to not call it chronic. Why? Maybe because at that point, my health wasn’t too bad. I wasn’t fighting cancer or been involved in a horrific accident. But the longer I spent in hospital; not getting better, taking more and more medications, wondering […]

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This time last year…

.. I was experiencing my first really serious bout of “on-medication-but-feeling-as-if-I’m-going-without”. I had just completed my first year of Infliximab and I’d made it through Christmas. Boyfriend and I had plans to get away for the February break and picked Cornwall for a week’s holiday. I would have my infusion at the start of Feb and that would usually keep me going for at least a month. Oh how foolish I feel now. February 2015 was horrible. I would still have my Infliximab but I had lost total response to it; I wouldn’t be tested and know this for sure until […]

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XOXO

We sat in the car, driving to the hospital. Nothing unusual in that; we often drive to the hospital. But I sat there wondering why he was so okay with taking me there. When did it become so normal for us to be going there because I had an appointment, needed blood taking, was having a medication given or needed to collect something from my IBD team? When did my invisible illness become such a huge unspoken part of our relationship? When we met I was just months in to my diagnosis. He met me on a night out some […]

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Scope booked – oh the dread

FINALLY! After numerous phone calls, I’ve finally received my complete paperwork for my colonoscopy. Pre-assessment on Feb 23rd and procedure on March 8th. So after all this time waiting and then chasing for my appointment, I’m just as eager to get it over and done with. Its never a pleasant experience; which starts with many many cups of prep to get through, the enema on the morning, having a canulla placed when dehydrated from all the clean out work I would have done and then having a camera put up your butt. There are two siliver linings: 1. Full sedation […]

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Vedo #5 – The Finale

Despite my best efforts, it seems my current run of Vedolizumab is over. This is what happened at the turn of 2015 into 2016: “I’ve finished my loading doses of my Vedo! That happened two weeks ago and was eventful as always – six attempts at cannulation; two of which were blown veins whose bruised still haven’t faded yet – and I spent 10 days post infusion with pain and severe aching muscles. Neither of which have completely gone and neither of which my consultant can fix, it seems. So I await the New Year and with it bring an […]

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Nottingham: Moran and Multiple Choices – 27.01.16

I’ve never seen a different gastroenterologist in a different hospital before. I was full of anxiety and fear of being unable to explain my history to him or to even get him to help me. I was over thinking everything I wanted to say and everything I could possibly say; this one sided conversation with my thoughts and my fears. I’ve had a bad week leading up to my appointment, including travelling to the hospital which isn’t local and is in a new city I’m not used to. As much as I can prepare myself – and I realise that […]

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The end of Biologics: Colorectal Referral – 12.01.16

I saw a surgeon last week. I’ve had Crohn’s for almost four and a half years but this is the first time I’ve been anxious like this in a very long time. It’s certainly the first time I’ve come face to face with a surgeon. It was nerve wrecking. The judgement of my disease and the awkward chit chat my IBD nurse made whilst he read my most recent scopes and scan results – MRI in November and scope in Sept 2013 (27 months ago) – felt like the longest ten minutes of my IBD life. Even more so than […]

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