GI Clinic & MRI Scan – 27-28.06.17

Due to my Gastro referral still being in the pipelines, I decided it was probably a good idea to still attend my outstanding appointments at Good Hope. So despite living 90 miles away, I made the journey back home on Tuesday for my clinic appointment with my consultant and the pending MRI scan the following day.

One miserable train journey later, I was at Good Hope; primed to talk IBD and my health’s current state. I won’t lie, moving away from home has been stressful and turbulent at times, I haven’t always been 100% on track. Which means some days have been goddamn awful and I’ve been off sick from work, much to my own disappointment. But I’ve gotten a thicker skin, I’m mentally stronger these days with my ostomy so I know that my sickness is real and not at all fake. It helps that my employer is incredibly understanding about my health condition and the situations I am and will face.

I explained to my consultant my two bouts of dehydration, one partial blockage and one stomach bug saga and he looked quite impressed.

“How are your IBD symptoms?” he asked. Well, to be honest, I hadn’t really thought about my IBD for such a long time, I had to take time to pause and really think. The IBD has been non-existent really since the Vedolizumab was stopped at the start of 2017. My issues since have been entirely ostomy related, solvable by changing my lifestyle and supplies. I must have been thinking for a while because he prompted me again, “Is everything okay?” – and yes, yes it is! I said that I was struggling to remember any IBD ‘things’ and this is a good thing. We touched on continuing to see how long I could go medication free and what would be out there if I did need something. “Probably back to biologics but we know that Vedo would work again and we have Stelara now too to consider” which gave me much joy. Having options at this point when I don’t need them desperately relaxes me.

SIDE NOTE: I do get anxious about my IBD. I do think about when is it going to come back and bite me in the arse – like it usually liked to me, the cruel bastard – but I then stop and think “no, this is not how I want to live my life. I want to be in control but free from being consumed by IBD and all it’s shite”

I asked my consultant to write to Peterborough and get me into a see a GI once my MRI scan results were reported on, as my disease has a tendency to flare up without much warning. And as much as I am enjoying this period of remission, I am realistic in knowing it could not be here forever; being prepared is key. My old consultant gave my current consultant some advice about me: “She is trouble, treat her with caution” – meaning my IBD can becoming aggressive and why that happens we just don’t know. He has seen that first hand, for all of last summer this was the case, so I trust him to explain my condition in real terms to a new GI.

Which bring me on to the MRI scan:

This was my seventh MRI of my small bowel since my diagnosis in 2011. Three of those have happened in the 12 months. I am some what used to them, but I now have my ostomy. This allows some certain wiggle room: Without my colon, the prep I have to consume will dehydrate me. But good prep is needed to get clear images of the state of my small bowel. So the balance is taking the right amount of prep – scaled down from 1lt to about 550ml consumed over 1 hr instead of the usual 45minutes. I managed about 475ml by the time my bag was filling up and I needed to be cannulated. One tiny blue needle later, one dose of Buscopan and the scan started. Two-thirds of the way through the 40 minute scan, they released the fluorescent dye into my system to help outline my small bowel.

The scan I have no anxiety or nerves about; I’ve had so many I find the vibrations and sounds of the machine quite relaxing. The aftermath of said scan with an ostomy can be problematic. I expected a flood of watery output and this did indeed happen. Journey time from hospital to home is roughly 40 minutes and my bag was heavy with output on my arrival home. I took an Imodium, grabbed a isotonic drink and plonked myself in front of the TV in my pjs.

For the rest of the day I monitored my output and dealt with my electrolytes with fluids and rest. I did feel abit dehydrated but otherwise I was okay. My bowels did insist on making an orchestra of sounds but this was probably down to not eating for 12 hours prior to my scan. I have been struggling with my fatigue the last week or so, my body feels completely drained of energy, let alone when you take away food as a source of energy; I was so so tired.

We now await the results; which can take up to a month. Fingers crossed I am able to see a GI in Peterborough sooner than I get a repeat clinic appointment with my current consultant. But having that safety net is reassuring.

MRI Scan: Small Bowel Study – 19.01.17

So, last week I was at the hospital for a routine test; a Small Bowel MRI Study. My surgeon is using this procedure to finalise the plans for whether or not I continue to receive my Vedolizumab treatment, as my Crohn’s has gone into possible remission. I’ve had a couple of these MRIs before; all pre surgery and without my ostomy. I was hesitate, anxious and nervous for the following reasons: The last time I had one, I had a NG tube down, I was 10 days away from ostomy surgery, had spent an awful weekend on our gastro ward […]

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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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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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High Five Friday – March 4th

I’ve had a pretty decent week. I’ve had more good days than bad days; which is a nice change. I am due to reduce my Pred down to 10mg tomorrow and also start my diet for my colonoscopy prep. Glad its come around; I’m pretty anxious to get some results in and get moving on with the next stage of Operation: Colon Removal. Feeling good over bad might slightly sway these next couple days but I know its for an actual reason, not just my crap body having a hissy fit whenever it feels like it. This is an ‘ideal’ […]

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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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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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Welcome Home

With another hiatus come and gone, its time to start writing again. Since my last post, I’ve spent two separate nights in A&E with Crohn’s related pains. Since then, I’ve been without any real help, it has been weeks and weeks of pain and frustration. That was up until the start of September when I was working too much, too hard, and I had a flare up. I struggled on, continued to fulfill my responsibilities at work, but would come home and sleep. I was too tired to make dinner, to wash properly without being in pain, too lazy to […]

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After all this time.. MRI

As mentioned in previous posts, my GI  wanted me to go for a MRI scan to determine the activity of Crohns in my bowels, following my coming off Humira in the New Year. So, Thursday March 28th, I had the day off work and made my way to the hospital for what I thought would be a quite easy afternoon of testing. It turned out to be a nightmare. Here are my thoughts, composed whilst waiting, doing my Prep and afterward: “Arrived at noon. Already the scans are running behind schedule. Today? I generally feel unwell. Bowels are cranky and […]

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Polyps and Prep

Hard to believe it’s been over a year since I took my fragile self off to the hospital for them to scan my small bowel. Hard to believe that this year is already flying by and I’m already 7 weeks into my steroid course and due for a follow up next week. But, first things first, I must get my belly scanned. I must, I must, I MUST. It was a pre requisite for getting to see my consultant in April, a small bowel MRI study. It is also the precursor that will eliminate or accept certain treatment plans for […]

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…and moving forward, slowly. I last wrote on the afternoon of my bowel prep, on Thursday. I got through the first hour of Moviprep without too much of a problem, it didn’t taste as bad as I thought it might do – my experiences of Klean Prep for my MRI didn’t really set me yup well for this – but after a hour, I was done with my first litre. I got some juice and got settled down for the runs to the bathroom. After about a half hour, I finally went – some 90 minutes after starting prep, but […]

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Prep Day

Its currently the last half hour before my first lot of MoviPrep begins and I am feeling decidedly nervous. Why, I hear you ask? Well, as noted before, this is my first ‘healthy’ Crohnie check up on my colon. I was definitely very unwell for the last two scopes and I remember the horror that was the Klean Prep for my MRI scan in January. So, taking in all the advice I’d asked for and have been given over the last two days, I mixed up my first batch of prep a couple of hours ago and am chilling it […]

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Exploring Bernie ;)

For many Cronhies, having a colonoscopy is the big prodesure. It is used to diagnosis, explore and treat Crohn’s Disease. Friday is my first colonoscopy. How? You might ask. How did you get this far without a colonoscopy? Well, my Crohn’s was discovered by a Flexi Sigmodoscopy. I underwent two of them whilst being in a massive flare up and when my medications were failing. I remember the pain of someone exploring my colon with mostly shudder and dismay. I’ve avoided a full exploration of my large bowel for just under a year. As Humira started to work and I became healthier and […]

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GI Clinic – 15.05.12

I spend the afternoon at Good Hope in the Gastro clinic. Outcomes: – Iron Infusion in the coming weeks. – Humira injection next Thursday can be done with my IBD nurse in the endoscopy suite at the hospital. – Colonoscopy is due in 2 months time. Thoughts: It is a weight of my mind to sort my Humira out. I was very upset about my stupid stupid self for not being able to inject myself as effectively like I once could. This is the next option for me; getting someone to give it to me. First the nurse at the […]

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MRI Update

A couple weeks ago I had my final investigative scan, my rescheduled MRI scan, mentioned in this post. I received a CC-ed letter from my consultant today stating that my scan “showed a considerable improvement on the changes previously noted on CT (of the small bowel). This is reassuring but also mirrors the general improvement in condition and blood tests.” I am rather happy with this. Despite being preoccupied with the actual preparation for the scan and the scan itself, I started to wonder if they would find any more inflammation in my small bowel. In fact, I’ve spent a […]

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“Oh, the fickle nature of my life..”

Today was meant to be – it was – a great day. I finally had my MRI scan at Heartlands this morning. After 5 more weeks of waiting, I’m done with this run of tests for my Crohn’s. I never want it done again, I despise Klean Prep with all my being. In all honest, it was a pleasantly weird experience; not as much fun as the CT scan (alot more uncomfortable, but that was mostly down to the breathing in and holding my breath I had to do) but interesting. A closed scanner, alot like a tunnel is not […]

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Its been a while since I had a scan – of any type – done for my Crohns. My last ‘attempt’ was my failed MRI in early December, and before that it was a very rushed second ultrasound during my last hospital stay. In all honesty, I don’t mind the scans. Or the tests. Just knowing more about my condition and ‘jumping through the hoops’ so to speak to get to a conclusion is very satisfying. I don’t tend to worry about the results – deal with them when they come. I don’t dread seeing my consultant at clinic appointments. […]

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