Employment

[Msdoubtfire]

good afternoon.

I had brachytherpay and pelvic radiotherapy 7 years ago and I now have erratic and complicated bowel problems as well as pain in the pelvis. I have urgency and uncontrollable and painful diarrhoea. I am struggling to continue to work. Has anyone with similar issues managed to continue with their job?

thank you

[Chargidevine]

hi

I had same treatment in 2010

10 years on from treatment I had uncontrollable bowel issues , and lost lots of weight and actually struggled to leave the house

Covid struck just as my issues became awful

After scans , colonoscopy , that all came back ok , and two years of looking for a good dr , I was finally diagnosed with bile acid malabsorption and pelvic radiation disease

A sehcat scan confirmed BAM and CT confirmed PRD The PRD was only picked up as if recently had a flare up and it showed on the ct ( it hadn’t previously showed up ) as the damage was 80 cm that wasn’t able to offer and treatment for the PRD

Do look up bam , and guts Uk have some good info

[Perido]

Sounds similar to me; pelvic radiotherapy also about 7 years ago. My bowel screening test was OK so my GP has just referred me to a gastroenterologist: 6 months waiting list on NHS!Sorry I don't have solutions to offer but I can empathise.

[Bluebell86]

hi there,

I had treatment in 2014 and have been told I “complex long term complications” by this I mean I have wide spread radiation damage affecting both small and large bowel which means they are very reluctant to perform surgery as it’s very risky & might not be effective. I work part time in a school office, it wouldn’t be possible for me to work full days. I experience problems with urgency (bladder and bowel) and painful defecation and bowel obstructions resulting in vomiting which can happen very suddenly. Recently went abroad and became ill the night before my morning flight and had to be sick on the flight which was just horrible being in so much pain on a flight but I’m determined not to let this disease take over. Do u take any regular effective pain relief to help manage your symptoms? I have found amitriptyline to be very effective for my daily background pain and this also helps me sleep. I use water irrigation to help with diarrhoea and to avoid accidents at work, means an earlier wake up call but worth it for peace of mind. I also eat little and often rather than standard meals (eating large portions causing a lot of pain) so I have basically told work this needs to be supported (depends on the type of job you have I guess). Are your employers supportive? I hope so.

[DarceyD]

i had cervical cancer treatment in 2001 including radio and brachyotherapy/chemo and op. After 10 years my slight bowel symptoms began worsening. I had to move my job role from outside to office. I found the FODMAP diet to be helpful in narrowing down trigger foods. I was on daily loperamide and ‘managing’ . After moving area I got a referral to a late effects clinic. Tests prove I have BAM and issue with pancreatic enzymes. I sat in car after diagnosis and evidence and wept for all the times I had been told not to eat/it was because I was nervous in shops (that was biggest laugh!). I am now on replacement medication and the difference is amazing. So please ask for referral for these tests to check out info on the prda website. BTW not everyone loses weight with this 60% put weight on. Good luck and keep fighting for help.

[Msdoubtfire]

thank you so much

It really is so hard isn’t it? Where there is a will there is a way and I am determined to find something that works for me.

[Cervicalsurvivor]

I have BAM and am currently waiting a capsule as small bowel mri has picked up 6cm thickening at the terminal ileum this is thought to be radiation enteritis but they are very reluctant to give diagnosis.

[DarceyD]

one thing that occured to me. As you are a cancer survivor you are covered as disabled under the Equality act 2010, if in UK. Your employer has a duty to make reasonable adjustments for you. You could get an occupational health referral to discuss what maybe possible in your workplace?

[Msdoubtfire in reply to DarceyD]

Thank you Darcy!

[justSome_Guy]

Hey there Ms Doubtfire

I had brachyotherapy for prostate cancer back in 2008 at the age of 43. I have suffered with radiation protitis since then with both bowel and bladder urgency and high frequency. Nevertheless, I managed to hold down a job until last year when my mental health led to me leaving employment.

Like DarcyD, I have been referred to a Late Effects service that has just started up (as a pilot possibly) which appears to be great in taking a holistic view of the support I might need with related issues. In addition to the bowel and bladder issues, in my case I have been struggling with fatigue and poor mental health.

Fwiw, I also got diagnosed with rectal cancer in December '23, which again could be a late effect of the prostate radiotherapy. Took them ages to work out if the symptoms I was presenting with were "just" radiation damage, or new cancer and I ended up being seen at the regional "national" centre of excellence. On the positive side, initial micro-surgery seems to have dealt with this.

I hope you manage to get yourself similarly sorted Ms Doubtfire

[Msdoubtfire in reply to justSome_Guy]

Thank you

[Ohthistoo]

You are entitled to reasonable adjustments under the equality act. Macmillan can help and have a work line. I'm going through similar. Mostly employers are a**h*les.

[Msdoubtfire in reply to Ohthistoo]

Thank you

[Ohthistoo]

I wondered how you were getting on with this issue?