On Sunday late morning I took G for a shower, he had been " Off It " the day before so did not rush him, but when I undressed him there was blood ( not a lot ) coming from his back passage . 8 years ago he had his large bowel removed fora rare cancer P.M.P. we only do RARE , so I did not panic , he still has his rectum, and does have mild flare ups of ulcerated colitis, so after his shower I used his medication.
He slept for a couple of hours in the afternoon, on waking he said wee, I said no you have a catheter fitted, I bent down to check his leg bag, and froze ,blood was trickling down his leg.
I called the out of hours Illiostomy nurse , she said get him to Hospital.
After 4 hours of blood tests scans, and poking and prodding he was admitted to Acute medical ward.G does not do Hospitals. I stayed until he had gone to sleep. 12.30, then our daughter took me home.
I returned at 9.30 the next day to be told he had rung the bell 17 times shouting my name and he wouldn't eat his breakfast, when I asked why he patted his illiostomy bag,
It was full, I asked why it had not been emptied, and was told, we thought it had to be changed , and we don't have stock on this ward, we have put in an order I told them all his equipment , was in his locker, had they taken the time to look.
He came home this afternoon,( bet the nurses were pleased)
The outcome of all his trauma, is he needs, an operation, but it cannot be done, he has a hernia pressing on his rectum, and because of his illiostomy, it would be major surgery. And because he doesn't walk it will not give him pain. And carry on using his medication
We will get an appointment to see his Colectrol consultant who will be informed.
Cannot say we all lead boring lives.
But he is home and he is happy, and so am I
Ellie
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ellie7676
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Oh Ellie glad he is home, and I bet he is too, sounds like you had a nightmare, sometimes you wonder about hospitals!!!! I think the best place for our loved ones is at home with us. Good luck hope all goes well. Yvonne xxxxxx
Poor chap, to be in bed in distress with nothing being done. Thank goodness he is back home again. It's good he isn't in pain and I hope he doesn't bleed again. I know what it's like seeing copious amounts of blood from that area ....not nice! My husband has suffered with ulcerative colitis since 1977. He is being weaned off steroids now after several very nasty bouts since Christmas. He doesn't have a bag, although on 4 occasions he was an inpatient for a long time and hospital doctors said he should have one but he refused consent. Before last Christmas he had been symptom free for over 10 years but antibiotics for a UTI started it all up again. he bled for weeks but thankfully he has been clear for 8 weeks. I did think there was a connection between the colitis and PSP as for years nutrients weren't getting into his blood stream through his bowel and he had to have supplements, sometimes intravenously. I spoke to our GP and he said he hadn't heard of it but would report my thoughts to relevant specialists. Reading different reports on the Internet, some specialists think it is connected to an infection getting through the bowel wall into the blood stream and to the brain.
I hope G remains pain free and doesn't lose any more blood.
I think you made an important remark about a possible connection between digestion and developing problems in the bowel.
As eating or nutrition becomes a huge problem with PSP patients, it deserves some research.
My dad had psp and we used a peg for feeding. Quite intensively the last 18 months.
He passed away 2 months ago. But he was getting more problems with digestion and his bowels…. Like PSP wasn’t enough to deal with….
I am truly touched by all your stories. There is much resemblance in our stories of taking care of our loved ones suffering from PSP.
I told my dad about the support group and I would have loved it to bring him along to meet others with PSP.
His condition took a hit when Corona took over the world… and everything became very different for us.
I felt very very helpless when he passed away. and I can’t suffer the thought how much pain he might’ve felt and that he could not say a word nor give a sign.
I really hope a cure is on its way… because it is a horrible disease!
Hi Ellie, hope you and G have had a comfortable night and the bleeding under control. He certainly does rare conditions.
Margaret has had 2 hospital visits in last 3 months to sort out the PEG tube, first to general medical ward fantastic staff knowledgable and caring. Margaret comfortable and cared for. The last one she was put on a ward for the elderly could not have been worse lick G's experience, but with attempts to feed her solid food even with nil by mouth sign, luckily before I could complain and get her out, a friend, who is a sister on another ward, saw her during a break and blew her stack put in a red notice and got things moving, still no formal apology but saved me kicking the hornets nest.
I am usually the first to defend and praise the NHS but there are times when the emphasis on admin and management at expense of patients, lets the whole down, I think there is enough funding but political meddling, poor management, and accountants having more say than doctors causes problems.
I will put my soap box away and wish you and G the best and hope they can sort his bleeding out soon.
What is it with our loved ones? Why do they insist on doing rare!!!! Still I suppose,somebody has to do it, why not them. It obvious, that's what attracted us to them, their rare quality!!!
Hope everything turns out OK. Totally fed up with the professionals, from every corner of S's care!
I have chronic diverticulitis as well as PSP so can only sympathize. I have been in hospital for both at once after a massive bleed. I hope your partner is feeling a bit better
Our Doctor came this morning to check him over , he's very quiet and didn't want the TV on , he has slept most of the day and not eaten much, he should be ok, I hope in a few days.
Love Ellie
What a horrible situation. So sorry for you and all of you who have these additional issues to deal with.
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Another hospital trip
Chris 
