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Topic My day revolves around my PWP having a BM Go to previous topic Go to next topic Go to higher level

By parkinit On 2013.05.25 23:02
Today has been exhausting. Every time I sat down to rest, my PWP said, "I think I need to try to have a BM." Sometimes he does, sometimes he doesn't. He will sit on the pot for 5 minutes after me helping him on the stair lift (he feels the upstairs pot fits him better), then I help him wipe, then he goes downstairs, wants alka-seltzer and said he needs to go to pot again. I feel like I am chasing him up an down stairs all day for the elusive potty time. I'm tired. His BMs are ruling both our days. He is not constipated. He goes at LEAST once per day.

By seawench On 2013.05.26 10:36
I hear ya sista! Pee and Poo can rule your lives. Because of the MSA his brain doesn't tell his bladder to void and his bowels to move, but the nerve endiings lie and say he has to go all the time, even when he dosen't, and when he can, we then have to fight off the OH. "Quick baby! Poo before you pass out" has been said in this house.

We have a bidet with an enema function that helps move things along but he can't move around to get adjusted (so glad I lift weights). So he can't just be left to do his business, between the adjusting and passing out.

Some days it's just easier (on both of us) if I leave him in bed while I straight cath him and give him a few enemas to clean out his bowels a bit.
So far the cath is easy and cleaner than diapers, the enema thing is still a crappy mess (pun intended).

Ultimately he will wind up with proceedures that will take over those jobs and we will try very hard to cope with them and not allow them to diminish his QL- Permanent Cath, Colon bag, Pacemaker. Ultimately they will make life easier but we just don't want to go there until it's absolutely the only choice.


By parkinit On 2013.05.27 23:18
I was venting and it was a really bad day. And the disease is progressing and it may not sound like it, but I love my PWP dearly. We are doing a remodel and a bidet was something I had insisted on installing. My, passing out adds to the excitement of the whole adventure, doesn't it? : \

The disease is progressing pretty quickly here lately for us and my frustration with many things was coming out.

By seawench On 2013.05.28 10:08
Vent away! Glad you are getting the bidet. It tops my list of best items we have purchased to cope with this disease.


By Betsey Clarke On 2013.05.28 19:51
I just have to say that your title just cracked me up. Glad we can laugh sometimes!

By Rempt2 On 2013.05.28 20:34
This is a subject I've been thinking a lot of lately as we have both issues at this point. Memorial day weekend wasn't that fun. Don't know how a colon bag would work. We have a cathetar and it makes life a lot easier. Maybe colon bag would do the same. We try to do outings for short term (2 hrs). We tried a longer one 2 weeks ago and it exhausted my husband and me. Not only trying to find a unisex bathroom (eventually hurrying into an empty ladies room and out again). You have to appreciate what you can do and not dwell on what used to be.

By seawench On 2013.05.28 20:40
Before we got a uro-dry (condem cath with a bladder) traveling was excruciating. One time we pulled into a town found the local hospital and claimed a bathroom for 2 hrs. (he also had hemorrhoids that stove him up).

We do what we can for as long as we can but when it takes over your life it's time to turn to things like catheters and colon bags. A friend of mine has a colon bag and she loves the changes it has made in her life.

Our biggest problem with pooing is his BP so we may have to get a pacemaker beforee the colon bag.


By carman96 On 2013.05.28 21:54
Thank you all for posting. I'm not quite at that stage yet but I know I need to think of these things since we are fast approaching these needs.
I don't know what I would do without this forum right now!!

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