If you haven’t had a colonoscopy before the thought of it can be nerve wracking.
To help you learn more about what happens during a colonoscopy, and the preparation before, Seb Tucknott kept a diary for us during his last scope at the beginning of 2016.
The last time I had a colonoscopy was six years ago. At the time I wasn’t in a good place - I was flaring badly and they abandoned the procedure halfway through because the doctor said I was in too much pain to continue. To be honest, I don’t remember saying that I was in too much pain - I don’t really remember much about it. I’d had a flexi sigmoidoscopy previous to that - when I was admitted to hospital shortly before being diagnosed - and I was in no fit state to remember that scope.
So, when I received the letter for this colonoscopy I was feeling a little nervous. But, I was also determined that I would get through it and remember the experience.
Since my last scope a lot has changed for me. My ulcerative colitis is in a good place. I’m managing it well with a combination of medication, diet and lifestyle changes - and I feel pretty good. I wouldn’t say I’m in clinical remission, but I’m stable and I haven’t had a bad flare for 12 months. I’ve worked really hard to get to this stage and I feel pretty proud of myself for getting this far. I was scared the colonoscopy would show otherwise. What if I felt great but everything I was doing was just masking my symptoms and really my colon was a mess?
Prepping for a colonoscopy
Prepping in the right way for your colonoscopy is important. You need to clear out your colon to give the best view possible of what’s going on inside it. Before your procedure you will be given some laxative bowel prep which you need to drink in 2-3 doses. The prep will cause diarrhoea. If you are already suffering extensive diarrhoea from your IBD or suspected IBD then you may not notice any difference!
You will also probably be asked to eat a low residue diet in the days before your colonoscopy to make it easier for the bowel prep to clear out your colon. And, you will probably need to fast (not eat anything) for 24 hours or so just before your procedure.
In my diary below I’ve included the foods I ate as part of my low residue prep.
Day before colonoscopy
8am I took my shot of probiotic Symprove. I’ve been taking this for 8 months. It’s one of dozens of things I do everyday which I feel help me manage my IBD. I’ve also done a lot of reading about how bowel prep and colonoscopies can reduce your gut bacteria so the Symprove will be important to get the numbers back up after the procedure.
8.10am I’ve been told to follow a low residue diet before taking my bowel prep. I don’t eat gluten, dairy or white potatoes because I've found they make my UC worse. These are foods that many people rely on for a low residue diet so I’ve done some research and it seems if I eat peeled, soft cooked vegetables these should be fine (and are actually lesser-known foods in a low residue diet). For breakfast I’ve got two eggs, 1/2 sweet potato grated and fried, 1/2 avocado, 1 pint filtered water (which is my usual breakfast).
9am Four squares dark chocolate (70%), 1 pint filtered water with a hydration tablet in it. I generally drink water once or twice a day with a hydration tablet in as I’ve found it stops many of the headaches I used to get and reduces the amount of muscle cramps I get.
11am Two bowls gluten free organic corn flakes with coconut milk and 1 banana. Not something I would usually eat but making sure I load up on food before I have to stop eating at 5pm!
1.30pm Lunch time - salmon fillet, peeled steamed carrots, parsnips, sweet potato and courgette, piece of gluten and dairy free cake, one pint filtered water, one pack Wine Gums. I wouldn’t usually eat the cake or Wine Gums but feeling a bit sorry for myself with what’s to come later!
4pm Smoothie made with leftover steamed veg from lunch, two peeled apples, banana, 2 radish, peeled cucumber, L-glutamine, honey
5pm Two bowls of corn flakes with coconut milk.
And that’s it. No more food for at least 24 hours! I’ve probably had 1,500 calories more than normal (wouldn’t normally eat cornflakes, cake or Wine Gums) but then I’ll be having no dinner, evening snack or food tomorrow.
7pm Feeling tired may be the high sugar/carbs I’ve eaten today giving me a crash.
8pm Here it goes - first dose of the bowel prep. I’ve been given a brand called MoviPrep. I have to mix a sachet of the laxative into a litre of water. I can’t remember doing the bowel prep for my last colonoscopy and I think I was in such a bad state for my felxi sigmoidoscopy that I didn’t need it! I’ve seen a lot of negative stuff written about the taste so I’m dreading it….
8.05pm It really doesn't taste as bad as I was expecting. I think my palate has shifted so much in the past year or so as I’ve pretty much given up eating sugar (apart from today!). It tastes lemony and a little sweet and salty to me. A bit like sherbet lemons crossed with homemade rehydration drink. Now to play the waiting game.
8.30pm My tummy is making some noises but no toilet trip yet.
10.30pm First toilet trip. Some urgency, had about 15-20min warning while sitting watching TV. Loose bowel movement (BM) with some formed bits.
11pm Bedtime. Difficulty getting to sleep from tummy moving a bit and thinking/feeling like I might need to go.
Day of colonoscopy
7.30am Slept until 7.30am as I’ve taken the day off work. Toilet at 8am no real urgency, just my usual toilet trip! Not as much urgency as I thought was going to be. Pretty loose and some watery spells! Fairly standard UC things - I've dealt with far worse! I eventually got to sleep at 4.30am last night.
On to the next litre of MoviPrep. Still doesn’t taste too bad to me but drinking this quantity in one go is getting hard. (Managed to finish it all by 10am). Surprisingly I’m not feeling that hungry.
8.30am Take my Symprove
10.30am Toilet trip very watery BM
11.30am Starting to feel hungry but also thirsty too. Drink a glass of filtered water
1.15pm MoviPrep has fully kicked in - another watery BM. Quite fancy lunch about now...
3pm Watery bm. Feeling hungry and a little tired. Just made a smoothie and got some fruit ready for post scope! Wish I could have it now!
3.45pm Arrive at Worthing Hospital. There’s a 45min delay - don’t they know I haven’t eaten for nearly 24 hours now! Doctor doing the scope will be Dr Ziva Mrevlje.
6pm Finally have my check interview and I’m sat in the holding room ready for my scope. I’ve changed into a very fetching backless gown and have been asked about medical conditions, when I last ate and drunk. Did I take my Moviprep and have I opened my bowels, were they clear etc. I’ve opted to just have for gas and air for pain relief. I want to stay aware of what’s going on. I watched my wife use gas and air during labour and it was pretty good for her!
I’m going to be the last person of the day they see and am just waiting for them to finish with the person before me. It’s pretty cold in here. Really cold in fact. Might do a bit of jogging on the spot to warm up and some mindfulness to keep calm. Feeling a little nervous but not too bad - though that might change when they call me through!
6.15pm Still waiting. I think all the other doctors have gone home, just my one left.
I thought hospitals were meant to be warm...it’s so cold in here! Maybe it's because I haven't eaten in over 24 hours and I'm a skinny thing. Maybe doing some squat jumps will help. Nurse is going to wonder why I'm out of breath if she comes in now though!
6.45pm Finally going in for scope. Very friendly staff, let me take a quick picture of the room. I think the person before me was difficult work for them which is why it took so long! Doctor interested in how I’m managing my UC and what foods I am trying/avoiding.
She said only 1/10 had had sedation today for their scopes. I thought the figure would be much higher.
I had to lie on my left hand side with my knees bent - similar to the recovery position. Had my first breath of gas and air - the breath I took was too deep apparently - felt a bit dizzy! It’s pretty good stuff though. Makes me feel a bit drunk (a strange feeling having not drunk alcohol for 3 years!).
Then the doctor warned me she was going in. It was painful when she first put her finger inside me and she found it difficult to enter with the camera. Think I was tensing a little too much! A few gulps of gas and air and the first bit is over with. Once the camera was inside it wasn’t too painful. They pump some air inside me to inflate the colon to get a better view. This was a strange feeling (not painful but just felt like trapped wind).
I could see the images from the camera on the screen. The rectum looks inflamed and is quite tight which is apparently quite common in people with IBD. Then onto the sigmoid colon. She struggled to get the camera through it. It was painful, but not unbearable. I concentrated on breathing with the gas and air and not tensing.
Once through the sigmoid I didn’t really need to use the gas and air again. The bend at the top of the descending colon was nowhere near as painful as I remember. I could feel the movement up my descending colon and along the transverse. The inflammation didn’t look too bad here. At the next bend she struggled to get the camera around but after a few attempts was successful. The camera now made its way through to the terminal ileum - where the large intestine joins the small intestine.
She took some biopsies to check for Crohn’s disease but all looks good. She started to take the colonoscope out and then suddenly stopped. There, moving around, was a single threadworm! I asked if it would cause me problems - she said it’s not been proven but some people believe worms can help with IBD! She said there is medication I can take to kill them if I want.
She took a few more biopsies. To do this they thread a wire down the colonoscope tube. It had a little clamp on the end, like a mini digger. It’s then positioned and she called ‘open’ and a nurse opened the jaws, then she moved it into the tissue and calls ‘close’ and grabs some tissue and tugs at the cable to pull it away. This is repeated a couple of times. It doesn’t really hurt - just feels like someone tugging inside. On the screen you can see the tissue bleed a little where the biopsy was removed.
Once the colonoscope was out she took some time to talk through with me what she had seen. She said there is some discolouration from inflammation and that the lining looks a little tired in the ascending and transverse colon but otherwise looks good - no active disease. The sigmoid colon and rectum is more inflamed with some ulceration and bleeding.
It was actually quite refreshing to have someone that seemed interested in me as a patient and what I was doing to manage by UC.
I was then wheeled off the to the recovery ward. Didn't need much recovery as I didn't have sedation. Just felt a little uncomfortable from the gas in my colon. Here I was given my notes and photos and told that I may pass blood and be a bit gassy.
7.40pm Mmm banana tastes good!! Also drinking some smoothie and eating blueberries and raspberries too.
8pm Home. Tummy feels really uncomfortable from the gas - it made walking from the car to house a little tricky. It’s more painful than the procedure! Having a quick lie down on my left hand side. I find this helps me whenever I’m feeling gassy - it seems to have worked in moving the gas out. Think my wife heard that from the kitchen!
10pm Getting ready for bed. Went to the toilet and there was more air and a little liquid. The liquid turned out to be fresh blood from the biopsies. Looked just like when I'm having a flare and pass blood.
10.30pm Off to bed now after an eventful 24hrs. So pleased my inflammation has improved. At my last colonoscopy the inflammation and ulcers were everywhere - was told I had severe pancolitis but now it’s more like moderate proctosigmoiditis. So relieved. It shows everything I’ve been doing is having a positive effect on my disease and not just on how I’m feeling! Also a new thing to learn about - my little friend Mr (or Mrs) worm.
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