Psp and pseudo obstruction : Hi, I wondered... - PSP Association

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Psp and pseudo obstruction

Mariaajh profile image
14 Replies

Hi, I wondered if anyone has any experience with PSP and pseudo obstruction ? My mum has been in hospital 5 weeks now with pseudo obstruction of her bowel which is not resolving. They are now talking about surgery and she will end up with a colostomy. I wonder if anyone else has had this and how effective it was. Thank you everyone this group is so supportive x

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Mariaajh profile image
Mariaajh
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14 Replies
Boyce3600 profile image
Boyce3600

Why is it called pseudo? Are you sayimg she does not pass stool at all?

Mariaajh profile image
Mariaajh in reply to Boyce3600

She doesn't pass so at all just a bit of liquid now and again. Mum has had numerous abdominal x rays, CT scans and endoscopes and there is no actual blockage it's her bowel which simply isn't working. It's difficult to know if it's the PSP or that she is ill. Xx

Boyce3600 profile image
Boyce3600 in reply to Mariaajh

I was replying to you and I got cut off...let's start again. My husband has a different diagnosis, but has had chronic constipation since 2013. It all began with an emergency hospitalization for an intestinal (small bowel) obstruction in December 2013. He had had prostate surgery 10 years prior and they thought it was the scar tissue. The obstruction resolved itself after a few days, with no surgery, and no cause was ever determined. After being discharged the gastroenterologist tested him for Crohn's disease and Celiac disease and both were negative. Since then he has lost tremendous amounts of weight and other symptoms have begun to appear. The primary care physician always talks about a motility issue, and I agree it is his muscles that don't push the intestinal contents through the colon. He typically has a BM every 3 days with prunes, prune juice, apples, and apple juice. As of late the frequency is less often and he has been prescribed Amitiza 24 micrograms in the morning and at night which has worked fantastically for him! Other things we've tried along the way are Miralax, a Fleet enema and glycerin suppositories. Our new gastroenterologist suggests Fleet enemas every now and again as one option, and daily Miralax as another option. Also an occasional colon purge which is drinking the Colonoscopy prep..... HOWEVER the colon purge can be done not as restrictively as if you were going for a colonoscopy... it can be done... at least for him as prescribed by this doctor over a couple of days. He can even eat during the time he is drinking the prep. The doctor said as soon as he starts to go he can stop drinking it. I know everyone's different these are the things that we have experienced. I would certainly hope something could help so that she does not have to have surgery.

Dickwin profile image
Dickwin

Mariaajh

Not to sound alarmist, but I have read multiple posts where caretakers cited a marked decline in their loved ones following a surgery requiring anesthesia. Something about being anesthetized seems to kick the Progressive nature of PSP into hyperdrive. So you might want to absolutely exhaust all possible alternatives. Good luck.

cabbagecottage profile image
cabbagecottage

Can he drink pineapple juice this helps Bowels as well as mucus thinning . Movicol cab use as many as eight a day . I also find the baby food pouches of prunes good ,

Boyce3600 profile image
Boyce3600 in reply to cabbagecottage

What is movicol cab

cabbagecottage profile image
cabbagecottage in reply to Boyce3600

It's a powder whuch you mix in water . Quite gentle

enzo501 profile image
enzo501

My wife w/ PSP 5-6- yrs had a constant battle with constipation ...I add about 1/3 of a dose of mirilax to her morning shake about 5 days out of 6 a week and that has solved the problem .We also eat a lot of fresh fruits . Grapes ,peaches, nanas,watermelon, mangos etc...Good luck...jeff

Mariaajh profile image
Mariaajh

Thankyou everyone. Mum is in regular laxatives but they say that it isn't working unfortunately. We are just waiting to see the surgeon again. My thoughts are with you all. It's such a dreadful disease xx

Mariaajh profile image
Mariaajh

Sadly my mum passed away 2 weeks ago. Please stay strong everyone, love to all xx

CBP1 profile image
CBP1 in reply to Mariaajh

I'm so sorry.

Mariaajh profile image
Mariaajh in reply to CBP1

Thank you xx

rriddle profile image
rriddle

Condolences on your sad loss.

Mariaajh profile image
Mariaajh in reply to rriddle

Thank you xx

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