Incontinent

[Birdman34265]

Hi to all carers,my Kathy has bowel problems where her bowel movements are bogged up she's had a x-ray which shows a blockage ,she has movement which is messy to which i am told is a overflow,she is now on a laxative to help her.My question is does psp affect the digestive system through nerve damage,her incontinent affects her urine system,i would like to to here from other carers out there . thanks Peter and Kathy

[honjen43]

Hi Peter and Kathy, don't know for certain if PSP can affect the digestive system - but guess it probably can!

Had trouble with my back last year with a pinched nerve at L4/5 and it affected my bladder and bowel. So if Kathy has pain or stiffness at lower back it may be relevant.

We are lucky here to have kiwi fruit juice readily available to help with constipation. There is a good post from Robbo1 on the topic about a year ago. If you search more specifically you may get the answer to your query. This site is a mine of info!

Kia kaha!

Hugs

Jen xxx xxx

[honjen43]

Also check meds Kathy is on. Codeine and tramadol can cause constipation and there may be others. I take laxol each time I need to take tramadol and that helps me!

Hugs

Jen xxx

[Birdman34265 in reply to honjen43]

Hi Jen , Kathy is on amitriptyline 2x10mg that can cause constipation i might have review it use as Kathy continues on downward path

Thanks Peter

[Dadshelper]

There is a fine line to walk between constipation and diarrhea I learned with dad. When bowel movements slowed down it was time to up the fiber and possibly laxative. When things started to move had to back off or he was going all the time.

It could be the digestive tract is affected somehow with these diseases.

Ron

[Heady]

Hi Peter, this was the bane of Steve's life. Nobody would take it seriously, contanstly giving him laxitives that he couldn't Swallow. Occassionally, I managed to get the district nurses, kicking and screaming, to give him enemas. I don't know how it works in New Zealand, but over here, (UK) I finally managed to get a specialised incontient team involved. They were about to demand that the district nurses give him an irrigation treatment twice a week to keep him clear but he passed away before it could start. Apparently it is very common for people with neurological problems to recieve this, just nobody knows about it!

As to whether PSP effects the digestive system, yes like everything else, the messages stop getting through, so the patient "forgets" what to do.

I know you can only fight certain battles, I am afraid, this definetly one that the professionals MUST deal with and not fob you off with laxitives to be taken three times a day in a large glass of water. I'm not sure what part of "Steve can't swallow liquids", they never understood!

Out of all the horrors of PSP, this as left me with the most bitterness towards the medical profession. It is a basic need that they dismissed. Please don't let yours treat your wife in the same way.

Sending big hug and much love

Lots of love

Anne

[Cuttercat in reply to Heady]

Boy do I remember telling all the professionals “Charles can’t drink water” or any thin fluids for that matter. We had issues for years. Lactose and enemas. Also coconut oil helped.

Cuttercat

[LuisRodicioRodicio]

Hi Birdman34265!

The tactic that we are currently following for "open bowels" is:

1) Diet rich in fibers and liquids.

2) Put it to do "open bowels" at a fixed time (after breakfast). At this time she makes her prime urine of the day

3) If "open bowels" does not work in 24 hours we do nothing.

4) If "open bowels" not work after 48 hours, we will supply "Duphalac" (an oral osmotic laxative).

5) If "open bowels" not work at 72 hours we apply a microenema of "Micralax" (Citrate of sodium + sodium Lauril Sulfoacetate).

So far we have solved the problem always till now.

Hugs and luck.

Luis

[Hidden]

The muscles used for evacuation aren’t as strong as they were. It’s harder to push. That’s part of the problem with PSP. Medications as well.

[coldown]

I think what you describe is very much a feature of PSP at the later stages. My wife had a toilet that automatically flushes and cleans you etc so we could not monitor frequency etc.

8 months ago we had to change the toilet and found that my wife was not passing urine for worryingly long periods (24 hours +) bowel movements were sometimes 8 days +. In the end the district nurses involved the continence nurses who are the experts in this area.Result was a catheter for the urine and 2 laxitives Bisacodyl,& Lactulose (horrible sticky stuff which is very difficult for her to swallow) + lecicarbon suppositories 3 x per week administered by a nurse of course. It is still a fine line. Normally this lot works but sometimes it does not and my wife has a bad day when she overheats and is distressed. We have learnt that this is caused by the lack of bowel movements and we call the nurses who last time gave her an additional enima which did the trick. It is as though both her urinary and bowel systems are breaking down and intervention is necessary for them to function.

This is definitely one for the experts. Our route was GP to District Nurses to advice and direction by continence specialist nurses and to a regime administered by the District nurses in league with the GP.

If it helps my wife was diagnosed 7.5 years ago but of course the speed of progression varies from person to person with this awful disease.

I wish you both well

[Hidden]

This is our never ending battle as well,I resigned to the fact he will never have a normal bowel movement,his movement are very loose and messy but better then the blockage,which is very frightening.I give my guy every morning clearlax which is generic Walmart brand for MiraLAX® contains the same molecule, PEG 3350, as RestoraLAX® in Canada .Not sure what it is called in the UK.

One dose twice a day until thing started moving and now once every morning ,it took 3 days to work and do watch out because when it start you may want to rethink what your giving her but I have been doing this for 8 months and it works but it is messy.He sometime goes three days without any movement to which I will give him another dose at night.Trial and error i'm afraid .

Dee

[Birdman34265]

Thank you all for your help and support,this forum is shows the love and kindness that their is out there xx Peter and Kathy