I gave just finished a 28 day cycle of radiotherapy for a rectal tumour accompanied by oral chemotherapy (Capecitebine)
It has given me severe proctitis and tenesmus which started after the third week.
Has anyone suffered with this? How long does it last? Any tips for managing it?
I'm so sorry you're going through this. I'm in remission (three years) and I'm afraid totally understand what you're going through, as I still have problems - however, that's just me, I'm 61 so the repercussions of treatment are probably taking longer to find their own treatment for than younger sufferers. Do talk to your consultant about this, it's really important that they know what you're going through.
Thanks. I’m no spring chicken. I’m 66 so maybe it will linger with me as well. I hope not.
Oh no I’m sorry I haven’t helped at all! Look I’m not only 61 but haven’t exactly led a healthy life, so please don’t take what I’ve said as gospel for everyone. Sorry and I wish you all the best my dear x
Hi again, went away after my last reply to you feeling I’d let you down. I’m new here and should’ve realised I’m supposed to tell you about the wonderful medication I take that’s sorted out both the diarrhoea and ‘pellet’ problems I had: Imodium for the former and colesevelam for the latter (pellets were causing gassiness). Please ask your consultant about these. Obviously we’re all different but I really think both will help. Sending lots of positive vibes to you!
Thanks. I take Imodium (Loperamide) occasionally but as I originally presented with constipation they don’t want me to use it too much. Anyhow, I had a much better night last night and this morning feel as though I’ve got a bit more control over my bowels. It’s day 7 post treatment and hopefully things may be starting to settle down.
Sorry you’re going through this. Definitely speak to your team as this is a really common acute effect of radiotherapy and they should be able to offer advice and medications to help. X
Thanks. They are aware of it. I’m taking suppositories and paracetamol to reduce the inflammation. They say it will get worse post treatment for about 2 weeks and then improve. I’m hoping they’re right as this horrible feeling of having to get up 12 times during the night and not being able to pass anything is driving me up the wall.
If you’re constipated ask about normacol 😌
Thanks. No not constipated now, was my original complaint which led to discovery of the tumour although completely unrelated apparently. Thanks for your advice.
Oh gosh, I remember the feeling well
How long did it last with you?
The severity of the acute proctitis/enteritis settled after a couple weeks as I remember feeling more confident to leave the house for longer than an hour by the April and I finished all my treatment mid March.
That’s encouraging. Did you have to have an operation 12 weeks post treatment?
No, my cancer was cervical and inoperable but luckily responded to chemo, external radiation and internal radiation. Are you having surgery?
It’s great that yours responded so well. The plan is to scan in 6 weeks to see if the tumour has shrunk and then decide what operation is needed 6 weeks after that. Surgeon said there is a 5% chance that it would disappear completely and I might get away without an operation but I’m not getting my hopes up. I might have to have a stoma and I’m really dreading that.
🤞no surgery is needed but if you do I work in a hospital, as a pain specialist nurse, and support people who have colorectal surgery so if I can help at all please let me know xxx
Thanks
I didn’t need an op for my rectal tumour, chemo radiotherapy only.
That’s good to hear. Did it disappear completely? Did they give you a choice of having an operation to reduce the risk of it recurring? sorry for the intrusive questions
Yes treatment completely zapped the tumour. They may have mentioned an op very early on though memory not good. I do remember being diagnosed while I was actually having my colonoscopy (consultant said no need for biopsy the tumour was so obviously malignant) - on Hallowe’en 2016 can you believe! 🧙♀️- and it seemed to me that chemo radio treatment started within a few days (that sense of being carried along, slightly unreal). I don’t think honestly that I had a choice, I just let them, indeed, carry me along! I think if they hadn’t caught it so early I would’ve needed an op...also if treatment hadn’t worked. No it wasn’t suggested that an op would reduce risk of recurrence more than treatment but, hmm, though it might not help, we’re all so different... However, I do hope as we’ve both had/are having experiences with rectal cancer and we’re of similar age, my recollections might help... Please know that I’m here for any questions you need to ask. 😊
Hi there. I had anorectal chemoradiotherapy 12 yrs ago! Time flies.
It does get better -if you're female you'll need to use dilatory to stop the scarring sticking tissue together-best thing I did!
Pelvic exercises are important once things settle a bit. I took imodium for a few months. I didn't eat at work due to urgency.
Your diet will be key to managing your bowel. Ask Drs for dietitian appt.
Latter life-16yrs on at 66 I'm doing well. Macrogol figures higher than 5 yrs ago.
Any questions please ask. Take it easy x
Hopefully it will settle soon, it’s so horrid
I just wanted to echo what others have said, it’s still early days so hopefully things will improve. Always let your healthcare team know about any new onset symptoms.
I had awful tenesmus after treatment but it did settle and although I get it from time to time it has greatly improved.
Wishing you all the best and hope your symptoms improve soon. We’re always here if you need to chat.
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