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ChrisandBagpus
(@chrisandbagpus)
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Joined: 4 months ago
Posts: 76
May 28, 2020 5:10 am  

Hi

After a short break I'm back for a while at least

The after effects of treatment plus covid hysteria has been challenging for me and Bagpus

Bagpus still not settled down after the chemo tablets maybe I'll get some answers a consultant telephone meeting tomorrow (Local hospital in total lockdown 40% staff testing positive!!). not sure yet what is next stage after results

going to try and post a couple of articles about my experience with mio 2 click bags and the modifications I think helps with the sticking, and ballooning problem and a piece on a neat way to size your stoma (might include gory photos :twisted: )

Being login on but not posting brain fuddle

Chris and Bagpus


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SqueakyandLiza
(@squeakyandliza)
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Posts: 546
May 28, 2020 7:14 am  

Welcome back Chris and Bagpus!

I hope Bagpus can get sorted out. I know phone appts have become common and they can do a lot over the phone, but in the case of my second opinion, they did the phone appt and seem very knowledgeable but said they couldn’t make an official opinion without seeing me and doing tests and a scope. I know I sure wouldn’t want to go to a hospital with that much Covid in it. Scary!

Take care and stay safe.


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VeganOstomy
(@veganostomy)
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Joined: 6 years ago
Posts: 2873
May 28, 2020 10:09 am  

Welcome back!

Looking forward to your posts about the mio 2 PC! Telemedicine certainly did get a huge boost thanks to COVID, so I hope your appointment goes well.


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ChrisandBagpus
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Posts: 76
May 28, 2020 11:36 am  

@squeakyandliza

Thanks

Unfortunately the oncology center hasn't been anywhere as helpful as Eric and the bagsters ;-) 

on here have been to me.

In the UK we have as you all know NHS health care free at the point of need it is an envied service  the down side is top heavy management and some over staffing, poor training and funding mismanagement. Don't get me wrong there are some excellent dedicated and fantastic nurses and doctors. The worst thing before and even after the covid19 outbreak is the poor infection control and understanding- hence the reason the local hospital with 2000 staff have 40% infected :roll: Florence Nightingale would be exasperated- moan over.

Finding Eric's forum has helped me find a workable solution for my ostomy bags and supplys

that the professionals didn't example I got a useful information sheet 2 months after the surgery only because they posted some rings to me- distance nursing.

Yes Its scary, when I went into the hospital 9 days ago for MRI and CT Scan I was horrified at the " lackadaisical" attitude to the situation and infection control so I wasn't surprised that monday they shut down new arrivals.

https://www.bbc.co.uk/news/uk-england-somerset-52823231

 

 


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ChrisandBagpus
(@chrisandbagpus)
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Joined: 4 months ago
Posts: 76
May 28, 2020 11:57 am  

@veganostomy

I promise to do my best to explain the "Hacks"

Thanks for the kind words Eric it means a LOT


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john68
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Posts: 1570
May 28, 2020 11:58 am  

Hi Chris, Good to see ye back lad👍 Being an NHS patient myself I couldn’t agree more! The concept of our Health Service is brilliant and a total gift, but their are too many chiefs and not enough Indians. Plus it’s very badly abused. When I read posts about ostomates not being able to afford health care or supplies it makes me feel ashamed. 


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ChrisandBagpus
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Joined: 4 months ago
Posts: 76
May 28, 2020 12:11 pm  

@john68

Thanks John

Using Eric's posts and video's I was able to work out for myself the bag system that suits my badly sited loop stoma that on occasions output massively very quickly probably because of the inflammation caused by the Chemo. waiting to see its the cause or if there are some other complications. After 3 days of extreme diarrhea that turned yellow the oncologist said I must got a bug not the fault of chemo -How can I get a bug if I'm shielded these last few weeks :roll: 

I agree I really feel for others less fortunate and scream when I see the waste that is discarded knowing it could be used to great benefit


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ChrisandBagpus
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Posts: 76
May 30, 2020 10:53 am  

Had my telephone consultation

Operation being scheduled possibly in the next couple of weeks apparently he wants to get it done ASAP

The extra problem is local hospital is closed Covid outbreak.

Consultant is trying to arrange operation at an alternate hospital. no visitors will be allowed, higher surgical risk therefore laparoscopic maybe ruled out because of the virus? also for same reason need two consultants in surgery I hope he will be able to be one of them, all down to where the operation will be, if its a NHS or private hospital (NHS have bought in Private hospital service because of the outbreak) .

They are aiming to do a TME with a temporary ileostomy and hopefully a reversal unfortunately because of the restrictions I haven't had the opportunity to view the MRI and CT scans and fully understand the extent of surgery, I might get the chance of a face to face before the operation all kind of weird and unsettling.

So I'll need to gen up on ileostomies any tips or FAQ's will be appreciated ;-)


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john68
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Posts: 1570
May 30, 2020 11:05 am  

Hi Chris, Another step on the road to better health. An illeo well what can I say! We are a better class of an ostomate! The elite! 😂 ok folks only kidding before I get run outa town 😂 Have a good think and any questions welcome 👍


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ChrisandBagpus
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Joined: 4 months ago
Posts: 76
May 30, 2020 11:28 am  

@john68

:-D well I'm in with a good crowd sorry if I'm hopping for a reversal 👍

You lucky John I liked your post (elite) rather than reporting you :-P 

Bagpus has been quite a handful at times - I have described my output as golf balls, tennis balls and even the odd bowling ball, totally amazing the bag has stayed with at those times (Okay the last was a bit of an exaggeration) but been a Bagpus its allowed 👍

A previous post here I pointed out some of the downside of NHS. Of course tere are a lot of plus points as well. Certainly the consultant is putting my needs forwards and we are lucky we don't have the same worry and anxiety associated with payment.


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Dona
 Dona
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Joined: 3 years ago
Posts: 790
May 30, 2020 12:36 pm  

Best of luck Chris. Difficult choices and options. But like you said, with NHS payment isn't something you have to worry about and they are taking care with the Covid-19.

I have a permanent illiostomy...love it! But its always behaved itself once we got acquainted.


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