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 removal of a small warty growths (polyp) to be taken painlessly for testing later.

What are the risks associated with this procedure?

  • Bloating and abdominal discomfort are not unusual for a few hours.
  • Perforation of the bowel (a hole in the bowel) is an uncommon complication. The risk is increases if a polyp needs removing (on average 1 in 300 cases). This may require an operation to repair the damage.
  • Bleeding can complicate polyp removal (severe bleeding occurs in less than 1 in 300 cases). Rarely, this may require a blood transfusion and less commonly surgery.
  • Using sedation can cause breathing complications in up to 1 in 200 procedures, which usually are not serious.
  • No test is 100% accurate and abnormalities may be missed, including cancers.

What are the benefits of this procedure?

Your doctor has referred you for a colonoscopy in order to investigate some symptoms you have been having, such as a change in bowel habit, rectal bleeding or to review a problem they may have found before, like polyps or colitis. This will benefit you by providing a clear diagnosis.

What are the alternatives to this procedure?

Colonoscopy is the only method that allows direct inspection of the bowel wall. In less than 10% of cases the whole large bowel may not be seen and may require another test. Other forms of examinations include barium enema, Computer tomography (CT) scan and a newer technique called virtual colonoscopy.

I ended up being awake until midnight dealing with the Moviprep aftermath. I slept until 6am and then my bowels kicked off. I felt nauseous, so very nauseous. I wasn’t even looking forward to some tea and toast after the procedure. I was worrying about how much they were going to struggle to get my cannula in and how much it as going to hurt. I wasn’t wrong.

I got collected and dropped off at the hospital’s treatment centre early; so once I was admitted, changed and calling into the procedure room, it was all running on time. Until they realised I was having a full scope, not just a flexi sigmoidoscopy like my paperwork said and needed to be cannulated. I was trying my best not to shake; I was so nervous because all I wanted to do was back out of it and go home and feel sorry for myself. The prep for a scope is rough and anyone who has to have a colonoscopy should know that that is horrible. I can’t even sugar coat it. Having not had one for over two years, I’d forgotten how bad it was. Just awful. But I stuck it out, let them try four times before they got a good vein, knowing I could now have my sedation and ‘enjoy’ the procedure now. Hooked up to oxygen and being monitored, the doctor pushed the full dose of Fentanyl and some of Midazolam and began.

I won’t lie, it hurt. He decided to go and explore my terminal ileum first – being the furthest away, this makes sense – and it was deeply ulcerated. He managed to get the scope 20cm into my small bowel and it was much the same. He took pictures and biopsy samples for testing but it was inflamed, angry and generally bad. Now I know why that side of me hurts so much every day! Phew, it’s not in my head.

clutching my pictures! 🙂

He then had to remove the remaining prep – I was disappointed by this, I thought I had done a good job with my end of the procedure, but there was some liquid stool they have to suction and remove. That was very uncomfortable and strange – and moved back down my colon. I had to move around – which was abit laboured under the sedation – and the nurse had to help get some pressure on my sigmoid – ouch! – at times, but he saw no wide spread inflammation like I had anticipated. In fact, 90% of my colon was fine; just a few patchy areas of small Crohn’s ulcers. Even my rectum was disease free.

Recovery took ages. I had so much trapped air and pain, I spent 90 minutes in there before I felt ready enough to eat. To avoid a mess, I had to keep getting up to get rid of the air in the bathroom. It was so uncomfortable. I’m very sceptical about having another one done. I know why I always agreed with MRI over scope, more clearly than ever.


I had a long nap during the afternoon whilst at home; I don’t even remember it but it’s taken more than the 36 hours expected to get back to normal. I suffered with dehydration the following day and I was very sore; noticing it hurt the most when I was laughing or had to sneeze. That was surprisingly horrible too. I also was still experiencing prep like bowel movements and pain; added to the fact I was still feeling intermittently drowsy and finding it hard to find the right words too. I now have to be referred back to my surgeon so he can determine what to do next. I also have to see my consultant again too. They are due to discuss my results next Tuesday at the Departmental MDT meeting and hopefully I know more after that; or at the very least have an appointment to see the surgeon again. I know my results will also go to Nottingham to Dr Moran and he’ll probably request me to attend his clinic too.

Now the results; I am confused.

I was led to believe from my MRI scan – the last one was October 2015 – that it was my colon that was in bad shape and my terminal ileum was showing signs of going the same way. Neither area was responding to medication and Vedolizumab was going to be a last ditch attempt to help. I was told that there was deep mucosal inflammation that may not be helped by medication, thus the referral to Nottingham and to a colorectal surgeon. But now they tell me that my rectum and colon are okay but my terminal ileum really isn’t. How can that be? What they will do next is unknown. I reckon it’s a resection now, not a panprocolectomy or even a subtotal colectomy as recommended in January. I wonder if he was basing that off my last colonoscopy which is 2 ½ years old, not the latest MRI…?

I am sort of glad. Things aren’t as huge or as scary as I once thought, but I am confused as to why this scope doesn’t match up with my latest MRI or even what was recommended at my surgical consult.

I have many questions for my consultant and the surgeon.



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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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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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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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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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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Elemental, my dear Louise

I had put off contacting my IBD nurse for weeks and weeks. Things were steadily going down hill, pretty much since the beginning of May. I started to feel unwell soon after my last Infliximab infusion but put it down to the stress of finding a new job and being unhappy at being at home all the live long week. But as the bathroom trips became more frequent, more painful and more full of blood; the more I started to think it wasn’t just stress. It’s so easy to fob yourself off with just something as “undefinable” as “stress” but […]

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