Listening to your gut could save your life...

In this article I talk about inflammatory bowel disease (IBD), colonoscopies and everything in-between.

Sep 23, 2024

Warning: ok, so I have to warn you that in this article I will be talking a lot about poop. That’s right, poop! I am talking about IBD, colonoscopies and the guts, so of course this is going to come up. I am an Ex-Nurse, so I for one don’t mind talking about this kind of stuff, I actually find the topic of poop fascinating because it can tell you so much about your health, but I know that a lot of people don’t like talking about it, so don’t say I didn’t warn you!

Hello all,

So as you may know from my previous posts, I had my colonoscopy done on Friday. So I thought this would be a good opportunity to talk about why I had this done, what the link is between ankylosing spondylitis and inflammatory bowel disease (IBD), what exactly a colonoscopy is and how I prepared for it.

I shall be open and honest with you, especially about this topic, because there is still so much stigma and embarrassment attached to the topic of bowels and poo, but its so important to discuss. I also have a particular special interest in this area because my mum died of bowel cancer over 20 years ago. Getting to know your own bowel habits and body is so incredibly important, so if there are any changes that you notice, go get them checked out by a Doctor as soon as possible. It could literally save your life.

So what is Inflammatory Bowel Disease (IBD)?

The NHS website and the Crohn’s and Colitis UK charity website has some great resources. They have described IBD as:

IBD is a term used to describe chronic inflammation to your digestive tract.
The main types of IBD are ulcerative colitis and Crohn’s disease.
In Crohn’s disease the inflammation can be anywhere in your gut from your mouth to your bottom (anus). With ulcerative colitis the inflammation is only in the large bowel. It causes painful sores/ulcers.
There is also a type called microscopic colitis where inflammation is in your large bowel, but does not cause ulcers. It can only be diagnosed by biopsy, so is often missed.
It is different to irritable bowel syndrome (IBS).
It’s not always clear the reason why IBD starts, but it happens when your immune system attacks your bowel (autoimmune disease). In some cases there is a genetic component to it (it can run in families), but not in every case, so there could also be environmental reasons (diet, smoking etc).
There are times when the IBD is painful/makes you unwell (flare ups) and other times where it settles down (remission).
IBD is a very serious disease, which can have life-threatening complications. It’s not ‘just an upset stomach’. If left untreated, the inflammation can cause damage, leading to surgery and/or people needing parts of their bowel removed.

Main symptoms of IBD

So what symptoms should you be looking out for? The NHS website highlights some of the following symptoms:

Diarrhoea that lasts longer than 4 weeks
Urgency (needing to go to the toilet quickly)
Stomach pain/cramping
Blood or mucus in your poo
Bleeding from your bum
Feeling tired all the time
Losing weight (without trying)/ loss of appetite
Some people can get extra-intestinal manifestations (EIM’s) (e.g. uveitis, mouth ulcers, anaemia)

The link between ankylosing spondylitis (AS) and IBD

The NASS charity website says that around 7% of people with AS also have IBD. However, when I spoke with my Gastro Doctor, they said this is most likely an under estimation and the actual percentage is probably a lot higher.

For me, my bowel symptoms started way before any of my back problems, but other people report their bowel issues happening after their diagnosis of AS. So it seems vary varied of when the symptoms can start. One theory with AS, is that AS actually gets triggered by a dysregulation in the gut microbiome, but more research needs to be done in this area as it’s not a trigger for everyone.

Due to the symptoms I have experienced, my diagnosis of inflammatory arthritis and due to my family history, they wanted to carry out certain tests to rule out IBD or bowel cancer. I have always been told my symptoms are irritable bowel syndrome (IBS), but it's good to make sure.

How do we diagnose IBD?

The Crohn’s and Colitis foundation website and the NHS website says that IBD is usually diagnosed with a range of tests including:

Referral to a specialist e.g. Gastroenterologist for an initial consultation. For me they asked me various questions such as: symptoms I had been experiencing, what my diet was like, what my weight was /if I had lost weight, how long the symptoms had been going on for, if there were certain triggers I had noticed, if I smoked, medical history (e.g. ankylosing spondylitis), if there was anyone else in my family that had similar symptoms, what medications I am taking, if I had been abroad recently (I guess to rule out certain infections?).
Physical examination e.g. palpation of the stomach area
Blood tests (to check for things like inflammation, full blood count to check for anaemia etc)
Poo sample (to check for inflammation and blood in the stool)
CT scan
Colonoscopy/biopsies of the gut. Depending on where your inflammation is, they may also want to do an upper GI endoscopy too.

CT scan

For this scan I had to have a cannula in so they could inject me with the contrast dye. (It just helps to show up certain areas in your body on the scans). Now if you haven’t had this done before, I must warn you that the stuff they inject you with makes you feel like you have peed your pants. You don’t, do not worry, but it gives you a weird warm sensation in that whole area which makes it feel like you’ve just gone to the loo. I thought I would add this in, just in case they don’t warn you about this before your test, because I could imagine it giving you a fright otherwise. Do not panic. It also made my whole chest area feel warm and strange but again don’t panic. Just take some nice deep breaths and it will all be over before you know it.

Colonoscopy

The NHS website describes this procedure as, a thin flexible tube/camera that is passed up into your bottom, so they can examine the bowels for any signs of inflammation/bowel conditions such as IBD, and/or polyps (growths). They will also take small biopsies which will then be examined in the labs.

Now this following bit is for people who are about to go through the procedure themselves, otherwise, feel free to skip this bit as it may be a bit boring (and I will be mentioning poo again!). But if you are about to have this procedure, I hope you find these tips helpful.

So I want to take a bit of time to go through this one, only because this procedure was the one I was most worried about. Now I won’t go into too much detail about the exact steps I took because each hospital seems to have their own way of doing things and I don’t want to confuse matters. Always go with what your own doctor/hospital has suggested, especially when it comes to when to stop certain medications. If you are diabetic, are on any heart medications, blood thinners or taking ibuprofen/naproxen, they will go through what you need to do. Always ask if you are unsure.

General tips

3 days before the procedure

Time to go shopping! I recommend getting all the supplies you will need ahead of time. It’s good to be prepared. The hospital should give you a list of all the foods you can and can’t eat before the procedure. Stick to this. This is to make sure that your bowels are all nice and ready to go. If your bowels are still full of poop on the day of the procedure (sorry for the visual), they may have to either cancel and rearrange, give you more prep on the day and wait, or carry on with the procedure but not see as well and this could lead to them possibly missing something. So it’s important to follow the rules.

For 2-3 days before the procedure, they will ask you to start a low/no fibre diet to help prepare the gut. This involves avoiding most fruits and vegetables, also things like brown rice/bread and fatty meats eg steaks/sausages etc. I pretty much stuck to lean chicken breasts with white rice cooked in chicken stock, salmon with mash potatoes and white pasta with diced chicken. Boring, but it did the job nicely.

Avoid any food or drinks with purple or red dyes in them as this can make it look like there is blood/inflammation in your gut and confuse matters.

Stock up on toilet roll (the nice soft kind), wipes and sudocream (trust me, you will need this to keep your bum bum from getting sore).

I also recommend stocking up on a variety of liquids. The day before my procedure they said I must stick to clear fluids only. I stocked up on things like clear apple juice, Lucozade (careful on the colour), ginger ale, herbal teas, water. I also got some chicken and beef stock to drink (without bits in) and some jelly to add some variety.

The day before the procedure

Ok, get ready. I’m not going to lie, today is going to be a little tough, but please don’t worry. Today is the day you will need to take the ‘prep’ drink (laxatives) to clear out your bowels ready for the procedure the next day. The drink doesn’t taste very nice, but my Auntie (who has had the procedure before) gave me a great tip; to mix the drink with tonic water. The bitterness of the tonic water did help to counteract the weird sweet and salty taste of the powder.

The dreaded prep drink. Hmm tasty. ‘Cheers’, or should I say, ‘Bottoms up!’

Don’t attempt to do anything strenuous today. Just be very kind to yourself. Rest as much as you can, conserve energy. Have all the supplies you need around you. Stay very close to the toilet!

Keep hydrated. Keep drinking all those clear fluids, you do not want to get dehydrated.

For me the prep started to work within 30 minutes of taking it, but it varies considerably for everyone. I then spent pretty much the rest of the afternoon/evening on the loo. I ended up listening to the radio in there to keep me company!

The hospital recommended to start the prep at 5pm (as my appointment was 9.30am the next morning), but I moved mine up earlier to 3pm. (The instructions will be different if you have an afternoon appointment). I moved mine earlier so I could actually get some sleep and not spend the whole night on the loo. It worked, I managed to get a good solid 5 hours sleep from 1am-6am. I was extremely bloated but having a hot water bottle on my tummy really helped with this.

The day of the procedure

Now I know you will be quite nervous about today, I know I was. But honestly it will all be ok. Just remember to take some nice deep breaths, think of your happy place and just try to relax as much as you can (easier said than done I know). The nurses will ask you a bunch of questions as they check you in. This is the time to ask any questions you may have, don’t be afraid to ask away, especially if it will help ease your mind. I said I was worried I would get sore hips/back from the arthritis. They reassured me and gave me extra pillows to get me comfortable.

The nurses will give you some very fetching shorts to wear called dignity shorts, which feels like an oxymoron, as they have a big gap in the back, but all the other patients in the waiting room are wearing them too, so you can have a good laugh about it with each other. They give you a gown too, so don’t worry, you won’t be flashing anyone….yet.

All the doctors and nurses were so lovely and reassuring and were good at keeping me calm and relaxed throughout. I went for the sedation option. It was still a little uncomfortable, mostly because of the air they have to pump into you for a clearer view of your bowels/moving the scope around, but it was over quite quickly. I will warn you, it does feel like you need to poop the whole time they are up in there, but you are not, your bowels are squeaky clean, it just feels like it.

They took many biopsies and removed a few polyps, but I did not feel that at all. I was with it and awake, but the sedation helps to take the edge off. They may ask you to move into different positions to make it easier to move the scope around, which was a little sore on my pelvis (due to the ankylosing spondylitis, but nothing too bad). And I know this is probably TMI, but as soon as they took the scope out and I passed wind (ok, I’ll just say it, as soon as I farted!), I felt immediately better. So another tip, just fart. Honestly, it will feel so good you won’t even be embarrassed about it. Be proud and loud. Toot Toot.

After the procedure

Go home and relax, nap. Tell yourself well done. You got through a really hard thing today and you should be really proud of yourself. You did something super beneficial for your own health and future you will be so grateful you did it.

If you had sedation it's important that you don't drive or make any big decisions/sign any legal documents and all that jazz. You will feel a bit sleepy and out of it for the rest of the day. You may also have a bit of bleeding ‘back there', but don't worry, that's normal. Obviously if there is a lot of bleeding/clots, or you are concerned, do let your doctor know or go to the emergency room just to be sure.

You will be starving by this point, but just take it easy with food. Maybe start with some broth or a biscuit and see how you go from there. My tummy was still very sensitive for a day or two afterwards. Try to avoid anything too heavy or fatty. This is a good time to build back your microbiome with good healthy foods, probiotics. I personally take Optibac tablets recommended by my NHS dietician.

For the next few days I felt really tired and fatigued. I think it kicked off a bit of a flare up of my AS as my lower back was quite sore. So if you can, try to take it easy, treat yourself well, buy yourself a little well done treat. I watched Gilmore girls in bed and drunk plenty of electrolytes. Don’t I know how to have a good time!

Now what?

They said my results could take up to 4 months (!) to come back, but this was on the NHS and they are extremely backlogged, obviously it may be different where you are.

I will then wait for an appointment with my gastro Doctor and Rheumatology team to discuss the results and the next steps.

Hopefully it will mean I can start on my immunosuppressants soon which will help with the inflammatory arthritis.

Treatments

Immunosuppressant medications are also one of the possible treatments for IBD, so if results come back positive for that, the medications will help with both. There is no cure for IBD as of yet, but there are different treatments to help put the disease into remission.

Other than immunosuppressants, there are also other treatment options to consider, but I’m going to wait for the results before I start investigating and researching all of the different options. I don’t want to overwhelm myself at this stage, but I have added a link HERE and HERE for you to read about all the various treatment options if you so wish to read.

No matter the results, my Doctor wants me to see a dietician again, so I guess diet is also another way to manage both IBD and IBS.

Have you found a particular diet or medication useful for you?

Other useful resources

Before my colonoscopy I watched loads of Youtube videos about it because I was super nervous about it, which can be dangerous because many people just put their bad experiences up and not the good ones, which can give a really unbalanced view. I have included the two videos below which I found helpful, comforting and reassuring (and funny in parts! A lot of poo jokes and toilet humour got me through). So hopefully you will find them useful too:

The Crohn’s and Colitis UK Charity website is great for information and support. They have links to support groups, research, leaflets etc and they also have a helpline for any queries you may have related to IBD (UK based).
I am currently reading a book by Louise Thompson called ‘Lucky’. If you are a Brit, you may have heard of her from the reality TV series ‘Made in Chelsea’. In the last few years she was diagnosed with ulcerative colitis and is very open and honest with her experience with it. I really admire her. Some parts are hard to read, because she is so open and raw with her emotions, but she also balances it out with such warmth and positivity. Definitely worth a read if you are going through something similar.
So I hope you found this useful. I know this topic can be a bit difficult to talk about, but I hope this article has shown you that there is nothing to be embarrassed about. Doctors and Nurses talk about and see this kind of stuff all the time, so don’t delay speaking with them if you notice anything out of the ordinary. They just want to make sure you are healthy. So look after your booty. Don’t be afraid to look in the loo or on your tissue paper after you have been to the toilet. Noticing small changes in your bowel habits could potentially save your life. It’s not just to look for symptoms of IBD, but also bowel cancer. Most of the time it turns out to be absolutely nothing serious, but it’s best to get it checked.

How about you?

If you have inflammatory arthritis, do you also have bowel issues? Are you on any particular treatment? Do you find the treatments helpful? How did you find the investigations, such as the colonoscopy? Do you have any tips for anyone about to go through it? Please let us know in the comments below.

Oh and if you have any further questions about colonoscopies but are too embarrassed to ask anyone else or to put it in the comments, please feel free to private message me. I am happy to answer any of your questions if it will help put your mind at ease or convince you to go get it done for your health. I am an open book!

In my bones...

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