Hello
This is my first post since joining the forum last year.
CONTENT WARNING: My history, from my profile is posted below but if you haven’t started treatment yet you may well not want to read it!
I’m currently 4 months post Chemoradiotherapy treatment . I weaned myself off my morphine and stopped all painkillers 4 weeks ago.
Although I’m happily rid of my opiate induced constipation, I’m now at the other extreme!
My Oncologist reckons this is due to a radiation induced inflammation/ microbiome dysbiosis which causes an Irritable Bowel Syndrome-like pattern of symptoms: colonic spasms, flatulence and frequent, urgent, watery stools.
I’m eating a fairly bland diet based around the BRAT (banana, rice, apple sauce, toast) diet and I’ve cut back on caffeine, alcohol and dairy. Also taking daily pre- and probiotics and kefir but so far, apart from reduced spasms, the diarrhoea is still a problem.
My Oncologist has reassured me that it should gradually get better over the coming 6-12 months.
I’m just wondering if anyone else here has been through this and has anyone found anything particularly useful that got things back on track for them?
PS
This is my story so far…
Started with rectal bleeding in November 2022. Tender lump found by GP on digital rectal examination. December flexible sigmoidoscopy showed lump was high anal and biopsy showed squamous cell carcinoma (P16 positive- ie caused by HPV) on histology.
Staging scans showed the tumour to be a large-ish locally advanced tumour with local lymph node involvement but no metastases
So my tumour staging was T3 N1 M0
Entered into the Radical Chemoradiotherapy PLATO ACT5 Trial in late February with IV Mitiomycin on day 1 and oral Capecitabine twice daily on radiotherapy days.
I was randomly allocated to medium intensity radiotherapy arm of the trial (higher than standard intensity but lower than the highest intensity) for 5 and a half weeks.
Needed Morphine to control anal pain 30mg MST am and pm
Usual pattern of side effects with nothing much for the first 2 weeks then anorexia, nausea, constipation cystitis (meaning urgent dash to the loo EVERY 40-50 minutes throughout the day and night), prostatitis (meaning pain and difficulty - needing to strain to pass urine), insomnia, soreness and blistering of peri anal skin, super-screamingly intense tearfulness-inducing pain on opening bowels!
The last 2 weeks of treatment became increasingly nightmarish by the day and the 3 weeks post treatment were almost as bad- I feel a knot of anxiety in my chest as I am writing these traumatic recollections.
Then, as predicted things started to get progressively better!
As of today (late July 2023) I’m 4 months post treatment and just had 3 month scan showing all clear so far.
