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Severe constipation

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User

Posted 20 Jun 2020 at 15:25

Hi everyone, I hope you are all doing ok.
My dad was diagnosed with advanced prostrate cancer in January 2016. He’s been generally well aside of a few setbacks, he had an awful reaction to chemo in 2016 and since has has periods of significant pain, which in 2018 was successfully treated with radiotherapy. He has been in pain again since the beginning of the year and at his last check up his PSA has risen to 4.6. He had radiotherapy around 5 weeks ago but since then has been very ill, initially with pain in his back, hip and leg but for the last 3 weeks with constipation, sickness, lack of appetite and fatigue to the extent that he can barely get out of bed. Dad was prescribed morphine for the pain around the middle of May but whilst this eased the pain, he soon began to feel very ill with sickness and fatigue. On 25th May dad was admitted to hospital and was diagnosed with severe constipation. He was in for several days before this diagnosis and became even worse. On 28 May he was given an enema and this really worked. By this time the palliative care team had already arranged for him to spend a couple of days at the hospice for a full medication and care plan check. He was transferred to the hospice on 29 May but only stayed a day as he was feeling much better and they were happy that his medication was right.
For the first couple of days after leaving the hospice dad started to feel better but on last week he began to feel very ill again and decided to stop the morphine as he was no longer in pain, he was feeling nauseous, listless and had no appetite. When I saw him last Sunday, he looked terrible so I called the hospice and they sent a doctor out that night. The Dr said he was constipated again but that it was higher than his bowel. She prescribed more laxatives and a liquid diet. Since then dad has not eaten anything, has been sick again and is hardly opening his bowels at all. On Friday dad felt worse than ever and asked my step-mum to call the hospice to see if he could go back in. They said not at the moment but prescribed suppositories, despite having 2 now he still hasn’t been to the toilet and now says he feels desperately unwell.
He really doesn’t want to go back into hospital as the first few days he was there recently were awful, he was in a general ward and they were not even aware that he had advanced prostrate cancer.
Apologies for the very long post but I am so desperate to see dad like this and just need some advice.
Thanks

Dawn x

User

Posted 20 Jun 2020 at 21:11

Hi Dawn, sorry to see that Dad is struggling so much. There are a few questions:

- In the care plan written with the palliative care team, what is the plan for end of life? Does Dad want to be at home or in the hospice?

- Does he have any tingling or numbness in his feet or legs?

- You say he hasn't eaten anything since the hospice prescribed the laxatives but have you managed to get him to have soup or protein shakes, ice cream, etc?

- Is he drinking plenty?

I can understand his reluctance to go back to hospital; have you called the GP who might be able to arrange for an enema at home?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Jun 2020 at 21:17

Having recently had a parent in a desperate state, I can feel your pain.

Can you contact the hospice again for advice, and maybe some other meds?

Failing that, it's probably 111 and very likely hospital again. Sometimes there isn't a choice if he and you can't handle the situation. It might not be so bad next time give he's been there before, and if he's back on the same ward, the staff will know him.

Sorry you are both going through this.

User

Posted 20 Jun 2020 at 21:18

Also, can I ask - you said in March 2018 that his PSA was 4.6 and it is still 4.6 in June 2020 - has his PSA stayed completely stable for 2 years or has he not had a PSA test for a very long time?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Jun 2020 at 21:39

Hi Lyn and Andy, thank you for your replies.
Prior to January this year dads PSA was below 1 it only started to rise again this year. Even when he was first diagnosed it wasn’t very high.
Dad doesn’t have any tingling or numbness. He is only having one protein shake per day and nothing else, I think he is drinking some water.
We’ve had mixed messages about an enema one doctor said it wouldn’t work as the faeces is too high but the hospice nurse suggested it again today?
I’m hoping to speak to the hospice myself tomorrow. The hospice nurse who came on Wednesday spent a couple of hours with my dad and step-mum and I know they spoke about end of life care but as far as I am aware we are not there yet, but are we ? I just want dad to be comfortable and I really feel that it’s time for medical intervention with the constipation.
love Dawn x

User

Posted 20 Jun 2020 at 21:54

Check what medication he is on for pain. Codeine can make constipation worse. Has anyone suggested fibrogel or movacol drinks? He will have to try to drink a little more even if it is just sips through the day. We have just been through a similar thing and tried 4 different anti nausea tablets until we found the one that worked. Tiny meals at regular intervals seemed to get things moving. Dulcolax also helped at night. It is hard but I hope something can ease his discomfort.

User

Posted 20 Jun 2020 at 22:00

If you only think he is drinking, it is worth checking and making sure that he and your step-mum understand how important it is. If he is dehydrated, his constipation is only going to get worse.

When you speak to the hospice tomorrow, it might be helpful for you to ask whether they believe he is moving into the end stage. It is really important that you try to have that conversation with your dad as well; it will be easier for you to support him if you understand his wishes. For example, he may already have agreed that he would not want to be put through any life-prolonging treatment and / or, being under the palliative care team, it may be marked on his medical notes in which case phoning 111 might be not the right thing to do. Usually, when someone is in palliative care, problems are dealt with by the hospice / Macmillan nurses and GP.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Jun 2020 at 20:58

Hi,

Hi All,

Sorry to jump on this post but this is from my sister talking about our Dad.

Dad’s PSA has actually risen to (I believe) around 20 something from the last visit with the onco which was in March. He has more Scans and this showed no change apart from some ‘activity’ in his lower back which the onco believed was causing the leg pain and is why he sent him for some radiotherapy. He also changed Dad’s medication and it is since then that Dad has been terribly unwell. Obviously the strong pain killers (cocodomol and morphine) can cause constipation so when they kept treating dad for this we believed them. He has been on a massive amount of laxatives.

We have been informed today that dad isn’t to collect any of his new medication as this has now been cancelled. We are assuming by the onco? Maybe because something has come up in his regular blood tests (he has these on a Friday to then collect his meds on a Monday from the hospital. This is every 4 weeks or so). The new meds he is on are:

Dexamethasone 500mg

Diethystilbestrol 1mg

Metoclopramide 10mg

Its very difficult and I feel we are just begging people to help us. It’s very hard to get hold of the onco’s secretary. Could the new medication be making him this ill? Should we be waiting over a week for the next onco app to speak to the onco or should we be pushing for sooner? He’s been unwell for such a long time and he seems to be getting worse. He was fine (apart from the pain) before the new meds and radiotherapy 3 months ago. I think it surely has something to do with the meds?

Any help/advice is greatly received and if you know who we should be calling/who can help us?

Thank you.

"Some people care too much. I think it's called love." by A.A. Milne

User

Posted 22 Jun 2020 at 21:17

Apologies in my original post I said dads PSA had risen to 4.6 but it’s actually 24.6 x

User

Posted 23 Jun 2020 at 00:10

Hi Penny, see my response above to your sister. If dad has been transferred to the palliative care team it is them and the GP who you need to speak to - oncos often let go of the patient once it gets to the palliative care stage.

I don't see how the rapid decline can be due to the medication - the steroids are to reduce side effects but particularly to reduce swelling caused by tumours on the spine, the stilboestrol is an oestrogen so another form of hormone therapy and the metoclopramide is an anti-sickness drug. Dawn was going to try to speak to the palliative care team today; I think you need to ask them about dad's symptoms and whether the constipation is as a result of the tumour pressing on something (the 'activity' that was seen on the scans perhaps?) I think you need to be brave and ask whether Dad is moving towards the end stage - hopefully, they will be able to reassure you but if not, it is better to know and be realistic I think?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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