Author Topic: New to Group,  (Read 544 times)


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  • Posts: 1
  • Reason for joining: Family member
  • Diagnosed: 2019
New to Group,
« on: August 18, 2021, 09:20:16 am »
Hi people, I'm dave I'm new to the forum. My dad was diagnosed with Amoloidosis in 2019, he is 75 and refused all treatment that is available as his decision.

At present he is opening his bowels 4 times per day, just liquid bowel movement, he's loosing his bowels through the night without even knowing he is doing it.
Is there anybody in the forum who is or has gone through this same episode.



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  • Posts: 14
  • Reason for joining: Newly diagnosed, al amyloidosis, kidneys, liver, spleen, early heart, autonomic neuropathy
  • Diagnosed: 23/3/21
Re: New to Group,
« Reply #1 on: October 08, 2021, 12:15:24 pm »
Hello Dave,
The forum has been very quiet and I am sorry that no one has responded to you. We need to do something to make the forum active and provide support for people with this horrific disease. Yes, bowel problems are very common in amyloid. I have been through the mill with them. It generally means that the autonomic nervous system is involved as peristalsis is an autonomic or automatic nervous system activity. It either speeds up as mine did or slows right down. Docs will prescribe codeine phosphate or loperamide for the diarrhoea. If there are kidney problems codeine phosphate can make phosphate levels increase and is somewhat contraindicated with kidney involvement. However, for me neither of these worked and negatively impacted on my kidneys. I ended up with intractable diarrhoea from chemo day 1. I  used traditional Chinese medicine which stopped it from the first day after months. and yes I also had breakthrough diarrhoea in the nighttime which I didn’t feel. This is a miserable state of affairs and if it continues and doesn’t stop with meds suggest get community continence team to help with pads etc. There is very little else they can do. I wish your father well and hope he reconsiders having treatment,