Constipation / nausea

[Zulu]

Apologies for the long post and also if I have gone into too much detail that is not appropriate for the forum. I am posting on behalf of my mother who has delegated most of the responsibility for medical information and decision taking to myself and my siblings. It’s a big responsibility and I’ve had such help from the nurses at PCUK but I did not actually realise there was a forum here so I am venturing on for the first time.

Mum was admitted to hospital on May 9th with an intestinal obstruction and diagnosed with PC that has spread to her liver and lungs.

The obstruction was as a result of a tumour on her pancreas blocking her duodenum and on June 3rd mum had a gastrojejunostomy. She had a JEJ tube put in for feeding while she rested her stomach before starting to eat. For the first few weeks mum suffered with terrible nausea, constipation, gas and gripey pains. The gas and gripey pains were resolved when mum was switched onto a pre-digested feed but mum is still suffering with very bad constipation and nausea. She is only going to the loo every 3-4 days and only with suppositories or enema after which she produces very soft or waterey stool. The nausea is generally improved if she goes to the toilet and/or is aspirated through her NJ tube but as the weeks have passed since the operation she has produced less liquid to be aspirated. However at present every few days mum is vomiting up to a litre of bile. We’ve asked what is causing the constipation and been told it’s her bowels operating slowly which is probably multifactorial with post-surgery, cancer and/or opioid medications all possible factors.

Mum is being cared for in hospice and is on the following medications:

– Paracetamol 1g: 4 times a day

– Oxycodone - 50mg: over 24 hours via syringe driver.

– Lidocaine patch on abdomen overnight

– Sodium docusate - 250mg: twice a day

– Movicol - 1 sachet: twice a day

– Lansoprazole 30mg: once a day

– Loratadine - 10 mg: once a day

– Metroclopramide 10mg: 3 times a day

– Glycopyronium - 600mg: over 24 hours via syringe driver

– 35 ml a day Nutricia Peptisorb feed via JEJ tube (target is 50ml)

– Water 100ml: twice a day into JEJ plus flushes with meds

I believe she is having breakthrough injections of Levopromozene or Haliperodol for nausea.

Mum was on buscopan since the operation but that was removed yesterday as the doctors at the hospice thought this may be slowing mum’s bowel down and she no longer had gripey pains. We are hoping the removal of the buscopan will help improve the constipation.

It’s now five and a half weeks since the operation and mum has still not eaten more than a few mouthfuls orally. She does feel hungry but at the same time the nausea prevents her from eating when it comes to it. She is also not drinking much water and so is only really getting her fluids from the feed and water flushes in her JEJ. The feed is at a reduced rate because of the constipation and is stopped sometimes for a day or more if the nausea is too much. Of course we would like mum to be able to eat orally as that was one of the reasons for having the operation but our primary focus is on tackling the constipation which we hope will improve her number one symptom the consequent nausea.

We’re wondering if mum is getting sufficient water and if this is a factor in the constipation and also if mum’s oxycodone could be a factor. It’s five weeks since the operation and mum did not have any pain pre-operation so could / should it be reduced or if it would be too soon? I’m also anxious that there may be other things we should be talking to the doctors about the constipation so would very much appreciate any ideas.

[Dandygal76]

Hi Zulu, sorry you and your mum are having such a tough time. I do not have experience with my dad of the same symptoms for constipation as your mum but when they are on so many medications it is difficult to determine what is causing the problem, and also if the medication is causing the problem. I know that water intake can really help with constipation but all I can suggest is to keep persevering in lowering some medications, increasing some and researching it all and getting on that steep learning curve (which I am sure you are on already). I have plenty of ideas for nausea but only chemo related and I am not sure if that would help you. If you read our story you will find that only now, 5 months later, have we started to find the optimum medications for dad. x

[Dandygal76]

I could not help but look but yes... Oxycodone can have constipation as a main side effect. Net Doctor (used by GP's) stated 6 - 8 glasses of water can help alleviate this along with increased fiber intake which is not a helpful solution for non eating PC patients. Perhaps this needs to be raised with the hospice for different pain relief? They are usually very good.

Net Dr quote...

" Opioids such as oxycodone frequently cause constipation. Constipation can often be eased by eating plenty of fibre, such as fruit, green leafy vegetables and bran and by drinking six to eight glasses of water each day. However, if this doesn't work or is not possible a laxative may be needed. Ask your doctor for advice if you get constipated while taking this medicine"

x

[Zulu]

Thanks so much for your reply Dandygal. I am so pleased that you have started to find the optimum medications for your dad. I'll follow up again with the doctors re: the oxycodone and mum's water intake tomorrow. If you think any of your ant-nausea info might help mum please do let me know. Smelling salts and lemon cologne seem to be the best home remedy we've found. Mum also was on a different anti-emetic Levopromozene which I think was more effective than Metaclopramide so I may ask doctors if they'll consider switching that back. Thanks again. x

[WifeampMum]

Welcome to the forum Zulu but I'm sorry that you find yourself here. I have no experience of the issues that your dear Mum is suffering but this forum is a very supportive place and I hope you get some useful answers. It sounds like Hospice is the best place for her at the moment.

Wishing you and your Mum the very best

W&M xx

[Dandygal76]

Hi Zulu,

We cannot give medical advice on here and you have to do your own due diligence (and obviously take on board what the hospice drs say). My dad has nausea symptoms as a direct result of chemo. He has no stents, the tumour is not pushing on anything and no actual PC related symptoms. I can only tell you what he is on and what worked for us to arm you with further knowledge to ask your own questions.

Emend was the first thing that started to give dad relief for nausea (after trying many other things) and it is the gold standard in anti sickness treatment but can only be given for 3 days in a week. It is amazing stuff but I think this is the last thing they try because of cost and potency.

Scopoderm patch is our new godsend and also has the added benefit of drying the mouth which increases water intake. However, because it messes with fluids I have no idea how this would effect constipation.

Lorazapam was also a god send to us but this is for psychological anticipatory nausea. We have nausea well under control at the moment but last night dad felt sick for no reason as he has been well all week (chemo today) and is often sick outside Euston on his way to chemo. It is really strange and he knows it is psychological but we cannot fully stop it. Lorazapam was amazing in helping with this because it was very bad before.

The PCUK nurses, as you are aware, are really good at finding solutions and I am sure they will chip in if my list above is not suitable to be on here. My dads nausea issues were complex and I do feel that your mum may have different issues to him. x

Edited July 13, 2016 by Dandygal76

[Dandygal76]

When I mentioned the PCUK nurses I also wanted to do the mandatory forum Creon check? If you have been in contact with them I am sure you are well versed on this but I did not see it on your list of medications.

[Zulu]

We did know about the Creon for oral food but we lost quite a few weeks where mum was suffering with gas and cramps due to her Nutrison feed not having creon added. Then when the creon was added we had a few issues with the administering of it. Sometimes the microspheres were not being crushed which ended up blocking the extension part of mum's JEJ tube. Mum has now been switched to a "pre-digested" feed called Peptisorb which the dieticians say Creon is not required for.

Edited July 13, 2016 by Zulu

[Zulu]

Wife&Mum wrote:

> Welcome to the forum Zulu but I'm sorry that you find yourself here. I have

> no experience of the issues that your dear Mum is suffering but this forum

> is a very supportive place and I hope you get some useful answers. It

> sounds like Hospice is the best place for her at the moment.

> Wishing you and your Mum the very best

> W&M xx

Thank you - I feel very thankful for the help of PCUK and for having found this forum. I can see from the other posts here that it is an incredibly supportive community.

[Guest]

Hi Zulu and welcome, I'm so sorry that your Mum and family are having to deal with this terrible disease and hope that you will keep posting and letting us know how you and your Mum are. People on here are very supportive.

I can't say that our experience is anything like yours but there are a few points that may be worth making. Firstly it is not unusual for people who consider themselves healthy to only have bowel movements every few days, some go much longer… What comes out depends a great deal on what goes in so if the feed your Mum is not taking much feed or it is designed to be low residue she may not actually need to go everyday. My husband was as regular as clockwork every day when he was well but eats so little now that a daily movement is unrealistic. I believe that you are not considered to have constipation medically unless you have symptoms of a blockage which is not based solely on the number of days between movements. Sadly, any number of things could be causing the nausea and pain, the fact that going to the loo helps does not necessarily mean it is the cause…

The hospice that we are with spent quite some time on our carers course discussing constipation and the dietician explained the different causes and how the different laxatives work. They are not all the same and do different things so worth discussing this with a dietician at the hospital if the hospice don't have one as it is a specialist field.

Anti nausea drugs. As above, it's important to get the right drug for the right type of nausea. I am sure the people on here will make lots of suggestions but perhaps you could also suggest to the hospice team that they could refer to a specialist centre for advice. We have had issues with both specialist nurses and GP's suggesting drugs which are not really effective or desirable in the case of PC because of the nature of the cancer, even though they work in other palliative situations.

I do hope that the hospice can make your Mum more comfortable very soon and take some of the worry from you.

I will be thinking of you M x

[Zulu]

Thanks Marmalade for your advice. The support from PCUK and this forum is amazing.

I think your comment re: regularity is really valuable and we need to remember that mum's bowel movements will be different now to what they were before. The doctors do seem to think there is a strong relationship between the nausea and the constipation because of the nature of the operation mum had but your comment is a really good reminder to keep open minded as to what's causing it and not to get fixated on regular movements.

I will also check if there is a carers' course at the hospice. We do feel so blessed to have their care for mum. The doctors and nurses are incredible and very open to suggestions and questions. I'll certainly mention the specialist centre to them.