Hi. I was diagnosed with UC 21 years ago when I was 19. For the most part I have been ok, with a few bad flares over the years treated with steroids. Lately I have been flaring more, bloods always fine, never any blood in my stools, but always have mucus and low left sided pain. Last 2 calprotectin tests have been elevated in the 800s. I take Octasa 1600mg three times a day.
In recent weeks however, I have been having significant rectal pain. A feeling of pressure and discomfort which is there most of the day. I’m going to the toilet 4 times a day on average hence it’s not getting a chance to rest. Stools are very loose so I’m not straining, however they do come with urgency. No blood when I wipe to indicate piles or a fissure. I spoke to my IBD nurse who has arranged a colonoscopy for 7th June and is also going to book me an MRI. Has anyone been suffering from rectal pressure? Could it be an abscess? I’m worrying about the colonoscopy as I don’t even know how they will do it at this point!
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Bigchiefld
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are your worries about the colonoscopy do to the pain you are having? I believe they generally sedate you so you shouldn’t be aware but I’m sure if you discuss it with them ahead of time they’ll be able to find a solution.
Sorry you're so troubled at present and can understand your worries as I have had similar symptoms of pressure and urgency. Colonoscopy under sedation was my choice - no problems. Given your rectal pain I'd say opt for sedation. The prep process is not a bundle of fun but it's worth following the instructions really closely as you'll then have a very clear bowel for the camera to inspect. So persevere with the yucky solution you'll have to drink. The outcome for me was a diagnosis of proctitis (plenty of info on Crohn's and colitis UK website). I'm gradually responding to mesalazine (Octasa) and using the IBD team for support and advice. Wishing you well for 7th June and I hope you'll have a positive treatment plan soon.
Firstly sending you lots of sympathy & support - I think it’s always a bit of shock to the system when you’ve had well managed IBD for a long time & then suddenly a period of ongoing flare. It takes some adjusting to…just speaking from my own experience!
On to the rectal pressure - I’m not going to lie, I’ve had this for a long time and I have periods where the pressure causes significant amounts of pain, just as you describe, & no matter where you get, you can’t get comfortable. An MRI showed both an abscess and a fissure 🤦♀️ This has resulted in my team fitting a seton drain, which will remain in place until a follow up scan shows the abscess has gone. There was also a diagnosis of colitis, so everything is inflamed as well. So too much going on in a small space!
Medication wise, I’m currently on methotrexate 12.5 mgs which I inject once a week, & Humira 40 mgs which I inject once a fortnight. There’s also a right concoction of painkillers & other meds as well.
On to your colonoscopy. I’m with you - I dread them, especially when I’m in pain and everything is already uncomfortable. As others have suggested, definitely go for sedation (as much as they offer!!), & when drinking the prep, add a touch of orange cordial (Never a red based cordial - this can cause panic for the Endoscopy team!) ; drink it through a straw as fast as possible; & finally chill it in the fridge for a bit. All of those will hopefully make it more bearable! Try not to take small sips when you begin, as that can make it more difficult to tolerate. I find it gives me the mental block, as in, I’ve geared myself up to believe it tastes bad and now I’ve tried it I know it does (even if it doesn’t), so therefore I’m not drinking anymore. Practically make sure you’ve booked the bathroom out for your prep time, have lots of comfy toilet paper on hand - along with some wetwipes! I’ve also seen other people recommend Vaseline to keep the skin comfy, but I’ve not personally tried that one so can’t vouch for it! And a good book…although I did see someone say, take your phone charger in there as well.
Most importantly, if you can beforehand, is one of the Endoscopy nurses from the hospital/unit where you’re having it done available to talk to? They can help with any questions or worries, & can put your mind at ease a little. The same with your IBD nurse. I know at my hospital there are specialist Endoscopy nurses/practitioners who have taken an interest in IBD patients, so worth a shot!
Wishing you lots of luck & hopefully the MRI and the colonoscopy go well and provide some answers for you ☘️
Thank you very much for your very informative answer. I’ve had various colonoscopies and flex sigs over the years so the prep and actual procedure doesn’t worry me too much as I always take sedation.
Sorry to hear about your abscess and fistula, I think that’s what I was worried about as the rectal pressure etc was a new symptom for me. Hopefully the investigations give me some answers.
Hi, I was diagnosed with UC in 1976 aged 24 and over the years had multiple colonoscopy’s, most times I elected to have the sedation a few times none. How the procedure goes is different for different people, for me without sedation was pretty uncomfortable but bearable, I would strongly suggest you take the sedation as it makes the whole process much more comfortable. Over the years I have had so many that I was never bothered by the procedure, for me the prep was the worst part and the actual procedure was a breeze. As some others have said it is really important to follow the prep instructions so that you get a really clean bowel. The prep I was always given was Picolax, not sure if is still given, it was an evil brew but VERY effective, never strayed too far from the toilet because when it started to work it really did! Please don’t worry about the procedure, it is normally pretty routine and the thought is worse than the reality. Good luck.
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