Navina Smart irrigation system for constipation

[Sun-flowerwearer]

Hi

My husband is chronically constipated due to PSP. It’s been a major issue for about 2 years but it’s getting worse… he was averaging once every 5 to 8 days and now last time was 14 days and this time it’s 15

I have a continence nurse and GP that have input fortnightly and we usually manage on a cocktail of senna and dulcalax and lactolose and suppositories. Nothing is working now and today district nurse camw to administer an enema… that didn’t work as of 6 hours later so I’m googling

district nurse coming back In morning to try a second Miralax enema and said may need phosphate enema but how we manage it going forward if this is now the new normal

Found Navina Smart by googling … so will ask all the medical team about it but would be useful to know if anyone else has heard of it or used it please

We are UK based and husband is on liquid only diet now as swallowing challenging

Thanks x

[daddyt]

Sunflower-wearer,

Any constipation that lasts over 3 days becomes a serious health concern. There may be an obstruction in the digestive tract, that can lead to a rupture followed by sepsis. This needs to be investigated further. And, it may also be the digestive system slowing down due disease progression.

Tim

[Sun-flowerwearer in reply to daddyt]

Thank you for replying and yes I am so aware of all this. My husbands digestive tract has died off due to PSP and the constipation has been a major cause of worry for over 2 years. He was in hospital last year having compaction cleared. A lot of laxatives have to be swallowed in water which doesn’t work as he is quite advanced and can’t swallow without effort. Immobility is an issue and obviously Not being able to walk increases constipation issues. He has a morphine patch for pain which may add up o the problem too. He does have a continence nurse, GP and district nurses keeping an eye on him but it’s very concerning for me watching days tick by without any movement… hence this irrigation system used by paraplegics or spinal injuries who also have similar neurological issues with bowel movements. I just haven’t seen anyone with PSP using it so wondered why.

[pspchronicles in reply to Sun-flowerwearer]

xx🙏🙏

[timbowPSP in reply to Sun-flowerwearer]

Hiya,.... I am 82, Male, and mostly costipated. Past 2-3 days have been takng linseeds, and today had a total clear-out! Great relief. I keep posting the simple mrthod, ad ur'e welcome to ask me again! good she for this cheap, nutritious, simple method! TimbowPSP

[SimonandMaria]

Dear Sun-flowerwearer,

My wife experienced similar problems with delays of up to 8 days, we reduced this problem quite a bit with "macrogol" on a daily basis. At first we started with 1 dose per day then 1,5, then 2, then 3 and that was too much and reduced back to 2 and it actually made it. Macrogol has the benefit of not doing anything to the bowels itself it just attracts water to the faeces hence there is no issue in using for long periods and can be given preventivly (i.e. on daily basis), meaning you don't wait to be stuck to administer it, you take it before even having the problem.

"Macrogol" is the name of the molecule. The name of the medicine actually varies from country to country.

Simon

[Dianafinnegan28 in reply to SimonandMaria]

were can you get macrogol from my husband gas psp and has been having this problem .

[Sun-flowerwearer]

thank you for this answer

I looked up Macragol and it is also traded as Laxido which we were using. Laxido sachets had to be dissolved in water and drunk so that was the challenge for my husband as he struggles with swallowing liquids so getting the laxido down was hard going in the quantities needed. X

[SimonandMaria in reply to Sun-flowerwearer]

We didn't dissolve it in water, just mixed it in applesauce

[SimonandMaria in reply to SimonandMaria]

Also, since taste is not that good, we actually mixed in the least possible amount of apple sauce and then we would give her as much applesauce or yoghurt afterwards as a way to hydrate. Macrogol doesn't actually need to be dissolved in water... it just needs to be ingested in whichever way is easier... however, there after liquid does need to provided in a form that can be swallowed (gelly, applesauce, icecream, yoghurt)... we live in france and we have this wonderfull chance of having more than 20 different applesauce recepes (apple banana, apple abricot, apple peach and so on). the density of applesauce was eventually adjusted. It worked very well for my wife.

besides, we used applesauce for all the medication that had to be take orally

[Sun-flowerwearer in reply to SimonandMaria]

Ah good idea… thank you x

[Sun-flowerwearer]

I have also spoken with Contenence nurse about irrigation systems and she says they do offer these on the nhs as a last resort if nothing else works.

[MullerRice]

I used to take Macrogol regularly - 2 sachets at a time mixed with some water - until I started having 'accidents' ( brought on by PSP?). Then I cut it completely, but then got constipated. I then resumed taking 1 sachet a day, but now I'm back on 2.

Get your GP to prescribe it. Ask for Orange flavour which doesn't taste too bad.

[Sun-flowerwearer in reply to MullerRice]

Thank you. Yes I have lots of orange flavoured sachets at home but struggled to get my husband to drink it dissolved in water as he has challenges swallowing but am going to try mixing it in custard as suggested above as a way of getting into my husband.