PSP Association
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Another hospital trip

Well its been a hell of a couple of weeks my guy bowels are not cooperating at all,after another emergency Visit, only 9 hours this one . Dr gave him IV fluid and xray and said that he was extremely constipated . his poor tummy is so swollen. They said go home and take 45 MLS of phoslax,this is the stuff you take to clean you out before a colonoscopy.it finally kicked in about 10 hours later . I wont even try to describe my day,just say lots and lots of laundry. He also had a seizure while he was in the hospital, Dr (ass) said don't worry about it unless they last 5 minutes or more, scared the he'll out of me.His tummy is still swollen.He is really having a tough time, choking on everything, I'm running out of ideas what to feed him,heck running out of ideas on everything.

I really don't see him bouncing back this time.

Dee in BC

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Oh my goodness I'm so sorry for both him and you my husband had trouble with constipation for a very long time and until we found a gastroenterologist who gave good suggestions he was miserable she suggested two or three things the colonoscopy cleanse was a last resort for my husband the suggestions the doctor gave before doing that were a Fleet enemaor a glycerin suppository and then if that didn't work to try the cleanse but only to do it on a modified basis like for an hour or two and see what happens not to do the full thing I like you do when you're going to have a colonoscopy then what really helped him was Amitiza she started him out with 8 micrograms twice a day and then increased it to 24 micrograms twice a day but it's such a good medication although it's a very expensive if you don't have good insurance that he has backed off of it a lot and gone back to prunes and prune juice and then takes one of the Amitiza as needed. The 8 microgram ones were samples everyone's different these were our experiences I certainly hope that things get better

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Thanks for information, I'm open to any suggestions.I will do some research for our family Dr.

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Fabulous! Wishing u both the best

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My heArt goes out to you and your guy. It sounds like a terrible struggle. I’m So sorry you two have To go through this. Hang in there!

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Jack is wreck after a few days of not going😕We take something then can't do anything but sit in the house and wait for the big blowout😬

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I hear You,I was trying to get a shower in, between shoveling snow and getting the blind deaf dog outside without killing us both and bathroom trips for neil, I'm hard pressed to get anything else done.by typing this I just use my teeth brushing time.😂

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Absolutely heartbreaking Dee and I’m so sorry to read such another familiar post! Psp is simply despicable! Sending much love and strength x

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Oh Dee, what a disaster for Christmas! How much fluid is your love able to take in if he is choking all time? Is he hydrated enough? Can you get someone to give more IV fluids to help? Try jellies, as they count as fluid.

Those enemas are horrid too. My grandson suffered from them under similar concretions! Prunes are way better if at all possible! Could also try coconut oil. That usually has laxative effect. Should be cold enough your way for it still to be solid!

The seizure is a worry, but am not surprised his body reacted in some way with such a blockage! Hope it does not occur again for both your sakes!

Give him a big hug from me!

And hugs to you!

Jen xxx

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So sorry to hear this, bloody psp is hateful. Fingers crossed he bounces back from this, you must be exhausted. Sending you a big hug. I am feeling unwell I have a throat infection, but still have to carry on . Yvonne xxxx

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So sorry to read your post, Dee. It sounds horrendous. I have no suggestions as Chris only had degrees of diarrhea - hard to manage but less painful than those who have constipation. I can only offer a virtual hug. Lots of love from Jean xx

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How sad to be reading your post full of stress and anxiety. The most useful and effective laxative, if you can call it a laxative, was red grape juice. This had the desired affect for my hubby. Thinking of you stay strong. Love Jxx

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How are you doing today, Dee?

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I'm feeling very frustrated with the medical system right now, our Dr office is closed until January 2nd.And I have no faith in the emergency department at this point . The Dr (ass)at emergency told me to give Neil restoralax 2 x a day.His stomach is so swollen,he has not had any bowel movement since the explosion from the phoslax.He was sitting at the table doing some strange things,I ask what he was looking for and he said he wanted open the cupboard ( no cupboards in the area at all) then he had my curtain in his hand wiping his face.

I maybe reading to much into this but I just have that feeling that there is more going on.I told Neil that if anything else happen or not happen in his case I will phone for a ambulance . just having him sit in the waiting room for 5 hours with all those coughing,hacking and throwing up scared me,he won't survive like they will,people are using the emergency room like a clinic because everyone shut down for the hoildays.

Rant over

Dee

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Thanks for asking😊

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So worrisome. Thoughts with you.

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Dee, I now always call for an ambulance if I think we need to go to the ER. It's the best lesson I've learned in all of this. Hugs to you.

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Hi Dee, yes would feel same in your shoes! So frustrating to sense there is more to the situation, but to get no joy from those who should know better!

Am inclined to agree with you that more may be happening, but you may need to hang in there till surgery opens - unless he seems worse. My love had similar 'thoughts and deeds' and seemed 'away with the fairies' for periods when he was unwell. May relate to onset of infection, or maybe the original bowel disruption has never been fully cleared, or body is holding on to the toxins usually removed by normal bowel and bladder functions.

Can you find the ear of your specialist, so that he might be able to fast-track Neill to treatment? Like you, i find no satisfaction in emergency treatment in hospital. They seem always too busy and don't focus on the case history enough of their patient.

Hang in there! You know what the situation is, and if necessary, you will do the right thing, even if it is emergency treatment!

If you do have to go there, do the PSP rant! and get the service you know he needs!!

Thinking of you both! Big hugs!! not that it helps you much!

Jen xxx

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Oh, I can relate. We have not needed to go to the hospital yet, but my husband had become very backed up. Despite our best efforts nothing was working. Finally I was able to give him an enema, which started the flow. Next day I gave him Miralax in apple juice and that has worked too well. Three loads of laundry only to find the dryer would not work. All this after his fall into the bathroom tub. Did someone say Merry Christmas?

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We used suppositories, which helped. Sorry about the laundry. Seems so odd to me still not to be doing a wash or more every day.

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So sorry, I have nothing to offer you....just my understanding.

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Thanks for all the support everyone😊.

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Bowels seem a constant battle for most with PSP I make a high fibre fruit compote for breakfast which until recently kept things moving . Lots of flaxseed, figs, prunes, dates all soaked overnight to plump up then blended. But recently this has not been enough so graduated to 3 x daily Docosate Sodium with intermittent suppositories. Braced for this next stage!!!!

Feel for you

Take care hope everything gets moving soon😊

Love Tippy

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I have been giving my husband two Bisalax tablets in the morning . This mostly works but sometimes I give him a suppository. Bowels have recently an issue. Also now in the last month my love has found it hard to move from his wheelchair to the bed or the toilet so I am looking into getting a hoist. I am so tired.

Kathleen

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in Australia pear juice seems to have superseded prunes/prune juice as the favoured laxative. It works really well for my dear hubby who also struggles with constipation. I give him pear juice several times daily and he now has a regular daily bowel motion.

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Sorry for what you're going through. It's horrible. My dad had severe constipation although didn't go to hospital. Probably was close though. If he's on any meds that could cause it I would stop them. That's what we did with dad. The minimal benefit he got from the meds wasn't worth being constipated all the time. That's my only suggestion. Doctors don't usually look at meds as the cause for something. Good luck. Hope he improves.

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OH My, that sounds awful and uncomfortable, hope he feels better.

Dad had some constipation in the past, he has drinks pruin juice for breakfast, apple juice for lunch and dinner, miralax in the afternoon along with whatever water we can get him to drink. Seems to help keep things moving.

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Hi Dee; I feel for you: you must be exhausted and at the end of your rope :-( It made me wonder what other people do when their loved one is not responding to ER docs prescription, is disoriented or not lucid, and (? I forget his level of mobility..) I think some of them put their foot down and say "He can't come home - I can't look after him - he's not safe!". We trojan spouses just keep trucking on and taking more and more on at home. So what might happen if you said those things in the ER? Might they admit him and "assess"...might it get a bit more of a look at? I don't know - I'm just thinking of your comment that "there's something more going on"....

Sympathy and hugs - and hopes for a temporary solution...

xo

Anne G.

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We are also always struggling with constipation. He is so skinny but his belly is hard. I feel so sad for him. Hang in there. I wish we had laundry to clean up. Ha Ha.

Cuttercat

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I gave Neil another microlax enema and it worked a little,very little,but enough to hopefully make it through the hoildays and the bad weather we are having.Going to try getting out of my driveway today to get more supply.it's all very frustrating.

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Oh my goodness,when it started working,boy did it ever.please tell me this is not the way it's going to keep going.I'm going to thrift store and buy some throw away clothing .

Dee

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