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 surgery around the July point. Some thing  I was happy with; it would give me time.

I was the last on the morning schedule, so had the arduous task of waiting around after my appointment time, despite being taken into a second waiting room twenty minutes prior.

Once I was in his consulting room, he needed to examine my abdomen – which I haven’t had done in such a long time! – and boy did it hurt! My right side is quite tender these days –  no meds and a messed up ileum I suppose will do that – and I was uncomfortable for a long while after the exam.

He then checked my scope results – a refresher no doubt – and then proceeded to check my last two MRI scan results – October 2014 and October 2015; a matter of weeks between them. I knew my 2014 scan shown a possible fistula in the end of my small bowel. This has now healed with my planned treatment plans of Infliximab, Methotrexate and Vedolizumab last year. That would good news. The cyst on my left ovary was not.

My GI did mention when giving me the 2015 scan results in December a cyst and did  I want to explore GYN again. Given my known history of PCOS – Polycystic Ovary Syndrome – I declined another referral and consult. The surgeon has recommended that given its location so close to my small bowel, it would do with removing. Brilliant! Luckily, they could do this whilst I am under for my resection, providing I consent and there is an available GYN surgeon that day. Edit: this could explain some of the  right sided pain I have been getting, maybe? 

He then explained and showed me how he would do a resection,  where this would take place and how much he was looking to take out. As it stands right now, it is 20-30cm of small bowel surrounding and including the terminal ileum and an inch or two of my colon to joint healthy bowel to healthy bowel. He advised that he would do the best he could to do it laproscopically instead of open but he wouldn’t know for sure until the day and how much further into the small bowel was diseased. He also didn’t know if anything from the fistula had adhered to the rest of my bowel or anywhere else for that matter, so alot of it is down to what happens on the day.

Are you taking the steroids any more?” he asked. I’ve been without them for just over a month,  this he seemed to be particularly pleased about, nodding and smiling at me. I’m doing my best to do without them or anything else. Harder some days than others.

He has proposed Thursday 12th May for surgery. He has an opening that day and it could do with being done sooner rather than later. Failing that, he has one two weeks later on the 26th May. Expectation of being under for 4-5 hours with a hospital stay of 5-10 days, dependent on the type of incision he has to make. He was going to request an urgent GYN appointment to discuss my cyst – which has come back as next Tuesday; bloody quick, which I’m very thankful for! Getting in so quick might just mean both can be done on either date I get for the resection – and I would receive a letter for my pre-op appointment next week. All in all, a pretty decent appointment.

Since then, my boyfriend and I have come down to Cornwall for some much needed R&R before all this kicks off. Good job as well, seen as it could be quite soon. I’m not exceptionally worried about the bowel surgery, more about this cyst needing to be removed.

 

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 – […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

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 […]

Continue Reading

Hello 2016..?

I started 2016 in pain, surprise surprise! I slept through all the new year celebrations, awaking groggily in the morning, trying to find some strength. Why would I need to find strength knowing it was a Bank Holiday weekend, I hear you ask? Well, I’d received a letter the day before; a consultation with a new doctor at my hospital, a surgeon I found out once I’d Googled him (something I don’t like doing but curiosity was killing me) and I was going into over drive as to why and boggled by the short notice. Was something wrong? Was I […]

Continue Reading