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

acf100

hello all

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.

Arx001

I’m sorry to hear this. Whereas I’m not qualified to give medical advice, my suggestion would be to keep looking for a surgeon who will accept to perform a colostomy. Such a surgery may have a high fatality risk because of her age. Other than that is she in good health? If there are other comorbidities and risk factors, things may be more difficult.

You may try contacting The American Society of Colon and Rectal Surgeons or relevant bodies to ask for medical advice. They may refer a surgeon who is about to retire, will be sympathetic to her suffering and thus agree to a high risk surgery. I really don’t know.

https://fascrs.org/ascrs/media/files/Education/2022-Ostomy-Surgery-CPG.pdf

If your wife and your mother in law accept a high risk surgery (let's assume a fatality risk of 25%) you may wish to speak with a lawyer on how to create a litigation free environment for the surgeon. I would suggest that you start your initiative not at a hospital but at a lawyer’s office.

If you are in the US your state may matter a lot. States which are more accommodating to euthanasia (something you are not seeking and she will not be qualified) may be easier to perform such a surgery.

You may wish to document her suffering and if she agrees to a high risk surgery you may wish to video record her stating her desire on a weekly basis say for four weeks.

As an interim solution you may buy a portable toilet. I’m going to use one soon at the hospital after my ileostomy reversal. This may also be a permanent solution, believe it or not you can not only buy a "sofa toilet” but also build one with more advanced features such as smell elimination. In any case I assume she spends her days sitting or lying next to tv when not at the toilet.

Best wishes.