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.

GI Clinic 21.03.17

This has probably been the first time in forever that I haven’t really been bothered about going to see my Gastro. I haven’t really had any problems; I’m not taking any medications, my wounds are all healed, my surgeon is happy with my current progress being made and my stoma seems to be getting into a solid routine. All good on the symptoms front; nothing to report. But, I still attended because I felt it was high time he saw how well I had been doing, what I actually look like when I am well. And it was a good picture. […]

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Surgical Review #2 – 13.02.17

Back to see my amazing surgeon today. Don’t worry, I’m okay! If anything, that’s the reason for seeing him. I am doing so well since surgery, he double checked my blood work, did a MRI scan and a calprotein test to confirm that everything is A-Okay. I’ve briefly discussed my thoughts on ‘remission’ this time around here, and also here. But today it was made official but not at all scary. My MRI scan of my small bowel and pelvis showed no activity of Crohn’s disease. If anything, some parts of my bowel weren’t dilated enough, indicating that the prep […]

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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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Surgical Review – 12.12.16

This is my surgical review for both my surgeries I had done this year. I had my Right Hemicolectomy in May and my Subtotal Colectomy in August. The second surgery superseded the first by giving me my ileostomy. I was sort of expecting to be on the way to being discharged at this appointment but I knew deep down that this probably wasn’t possible. It’s only been three months post-op and it seems whenever my surgery is discussed with me at the hospital, they added on additional weeks to my recovery because of already having Crohn’s disease. Apparently, this type […]

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GI Clinic – 15.11.16

I last saw my consultant the day I was admitted to hospital in mid August. I remember how disappointed he looked when he had to leave – he was going on annual leave for the rest of the month – and looked anxious. With good reason too, I would say goodbye to my bastard colon 11 days later. So today when we nodded to each other in acknowledgment before my appointment, it was nice to see him happy to see me. We talked mostly about my recovery from surgery and how Vedolizumab was going. I had received my final loading […]

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Double Check Up – 22.09.16

It’s not unusual to spend time at the hospital for back to back appointments. But when they happen at different hospitals, it gets abit more complicated. We spent the morning travelling across the city to Queen Elizabeth Hospital (QE) for my liver check-up. I’ve been attending this particular clinic for almost three years since some routine blood tests revealed very high liver function results. Given my complicated IBD history, I’ve been seeing the head of the department, a Professor; and had lots more blood work done and specialised testing to give me a diagnosis. Not that I’ve ever needed one; […]

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Nottingham GI Clinic – 14.09.16

At least three months overdue, rearranged twice during my extended post op recovery; we finally made the trip to Nottingham to Queens Medical Centre to see my second opinion Gastroenterologist. It’s always abit weird to see how another hospital organise their clinics. This was our second visit to see Dr Moran – head of Digestive Disorders, specialising in clinical trials for IBD – to discuss my case. Since we last came in January, I’ve had two surgeries, three admissions, two MRI and a CT scan and a colonoscopy. Explaining the last six months was going to be fun. I took him […]

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Pre Operative Assessment – 10.05.16

Its finally here; the pre op appointment! Before that appointment, I also met with the stoma nurse at the hospital; there is a small chance – 10% or so – that my operation could result in having a temporary ileostomy, so we discussed what one would look like, which side I would have it on, how the bag would fit to my abdomen and why it would be needed. If my surgeon finds extensive disease in my transverse colon he wishes to remove, he could very well create a ileostomy to help me out for a couple months before coming […]

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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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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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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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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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Liver, PCOS and IBD – What a combo!

I am awful at keeping things up to date recently, but I’ve had alot to mull over and consider.   Since Infliximab #8 I’ve been to the hospital for various appointments. I’ve seen my Liver specialist, had a small bowel MRI done, finally seen a Rheumatologist, my gastro, a dental surgeon and my GP. None of these things are new nor are they unrelated; they have all somehow become interlinked. Typical. So after my last infusion, I spent my half term building up to a small bowel MRI. Nothing about it was pleasant, but I was suffered from the tail […]

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“The Conversation” : GI Clinic – 11.06.13

Oh yes. I’m pretty sure at some time or another we’ve needed to be brash and have “THE conversation” with our consultant. For the past few weeks, I’ve been building up my strength and words for this conversation to happen TODAY with my regular GI, because in as many words, I am unhappy with my care. This was my strongest worded opinion thus far: I went into today’s appointment knowing full well that I was going to get THE LOOK – the one that is given to patients who fail to take their medications, full stop, and wonder why they are […]

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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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