Mother in Law with extensive colon scarring and poor quality of life

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hello

I've come to this forum as we are at our wits end as a family.

I'm trying to find some advice/guidance on what i can do to help my mother in law who is suffering more and more from the effects of colon scarring due to radiotherapy. She has extensive nerve and muscle damage meaning she can't really keep anything in her colon and frequently loses control over her ablutions. She is 80 years old and spends these days up to 70% of her day on loo and is rapidly losing eight as she just can't keep anything in. Her quality of life has been hugely compromised as she just doesn't want to leave the house these days.

A huge portion of her colon is heavily scarred meaning that partial removal is not an option and for some reason the consultants she has met with will not fit an ostomy bag to bypass this issue.

Does anyone have any experience of a similar issue and insight into any suggestions of what to do? Additionally, if anyone has had any experience with a particular consultant and has great things to say that would be amazing too. We are prepared to anywhere in the world if presented with a potential solution, so any suggestions greatly welcomed.

I appreciate anyone's efforts and responses a great deal, and thank you all in advance.

Debra - Macmillan 23 days ago

Dear acf100b34e1b

Thank you for getting in touch with us at Macmillan Cancer Support. My name is Debra and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I’m sorry to hear that your mother-in-law is having such a difficult time with the effects of radiotherapy to the colon. Unfortunately, bowel changes after treatment are quite common but usually resolve a few weeks after treatment ending, if this is not the case then this could be a longer term problem that may need intervention. Treatments vary according to the problem(s) being experienced, so it might help to keep a note of this using our food and symptom diary. We would advise you to contact her medical team, or nurse specialist, who can refer her to a continence adviser, surgeon or dietitian as necessary, there may also be a late effects clinic at the hospital, or nearby that you can be referred to. In addition, you might like to check out the Pelvic Radiation Disease Association (PRDA) who may be able to help you contact specialists.

Issues such as those being experienced by your mother-in-law can have a very negative effect on our mental health and quality of life, sometimes it is useful to know that you are not on your own experiencing certain side effects. We have our bowel cancer forum which you might find useful and Bowel cancer UK also have an online forum. There is some helpful information on the bladder and bowel UK website and real life stories shared on the PRDA website.

For any worsening symptoms we would always advise contacting your GP, medical team, NHS111 or the emergency services as appropriate.

I hope you find this information useful.

Best wishes

Debra

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts by phoning 0808 808 0000, calls are free, and lines are open 8am-8pm, 7 days a week, or you can send us an email or use webchat.

Ref: ds/rh

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Mother in Law with extensive colon scarring and poor quality of life