Lets talk about Poo

Everyday living
1

Hi

Well here goes, this is because of the encouragement of Blossom, hopes she reads it.

In March of this year I ended up in hospital because of a UTI and the infection got into my bloodstream and to my Kidneys.

I am now permanently in a wheelchair and unable to transfer, so have to use a hoist.

That includes going to the toilet.

The support I have received has been superb.

It took a month from contacting the OT to getting the hoists installed.

To top that I had a small tear in my left shoulder muscle and my left hand and arm are being affected by MS

I was unable to use my left arm although with steroid injections it has recovered some.

I self catheterise with having only partial use of my left arm and hand has become difficult (absolutely hate doing it). Got an appointment with a urologist at the end of December at which I will discuss having a super pubic catheter. Really donā€™t fancy one but itā€™s got to be.

I have also had to give up driving and so have become a little isolated.

My partner became concerned about me not going out and after a few months asked me many times about going out with me giving many plausible excuses.

This came to a head a couple of months ago when it was decided that the granddaughter was to be Christend and the step daughter was getting married.

To get to the dilemma, what happens if you need the loo.

You will be OK I will take you urine bottle and we can also take a catheter my partner said, at which I didnā€™t reply and remained quiet.

Eventually I blurted out what if I need the loo.

Her turn to go quiet.

Disabled toilets donā€™t have hoists so what do I do.

Luckily one of my close friends is one of the continence nurses in the local team so I gave her a ring.

Again, luckily I can discuss most things with her.

We discussed my problem and she had a solution. an anal irrigation system.

This involves a catheter being inserted into your bum, a balloon being inflated to hold it in place and water being pumped into your bum.

This has the effect of flushing you out so you can have a worry free day.

Itā€™s a problem that had never entered my head but must affect many people.

Now just got to sort out my cloths but thatā€™s another posting.

Ronin

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Oh good for you Ronin, I have read about these systems when I had trouble with both constipation and bowel incontinence and wondered if it was worth trying. I am very pleased that you will be able to join in with family activities and I do think you are brave to use this system, some people I know wonā€™t even self catheterise.

I hope this post will encourage others to use the system if needed. Take care,

Love Wendy x

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Hi Ronin

Itā€™s great when we discover things that can make huge difference to our lives, like the irrigation thing. I was like that when I first discovered sheaths & leg or night bags. I thought Iā€™d have to spend my life needing to go to the toilet umpteen times a day, never being able to sleep through the night, and occasionally wetting myself. It never occurred to me that someone had had the clever idea of making a sheath & strapping it to a bag, so Iā€™d be safe day & night. Or I assumed I wouldnā€™t be able to drive, but then discovered there are all kinds of adaptations available to help people drive, even if they stay sat in a wheelchair. Iā€™ve even clocked up over 25 hours flying a plane even though Iā€™m a wheelchair use, and have been flown by a guy who has a spinal injury and is paralysed (I did it during the summer after I was lucky enough to be awarded a scholarship through the charity Flying Scholarships for Disabled People - it was incredible!).

And talking through our fears with someone is great too. Iā€™m not the most imaginative person in the world, so I donā€™t always see solutions to problems. But other people can help me consider all the different eventualities, and what to do in any emergencies. Having a plan in place is definitely reassuring!

Dan

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Hi Ronin so glad you had a close friend who was qualified to give you some great advice. I suffered the same problem and it was so embarrassing for me to broach the subject at first. I had in the past been admitted to hosp for constipation but I was also incontinent. My neuro was amazing and immediately referred me to a continence nurse who arranged appointment and then came to my home and ā€œtrainedā€ me within 2 weeks. I use Peristeen and it is so easy and more importantly has put me back in control of my poo! Give it a go and then go enjoy yourself. Good luck!

Glynnis

xx

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The Peristeen System will enable you to empty your bowels when you want and not when they want to. Excellent for people with constipation as well. You do need to be reasonably dexterous to use it - so you might need help - but l think you will soon find a way to manage it yourself. The best tip l can give you is the catheter needs to be as far up as you can get it - and keep a hold on it - then you will not need so much air to hold it in. Too much air and it bursts. These systems are used by many types of disabled people - and l know a lot of paralympians swear by it.

l can understand your reluctance about going to church - not many actually have a loo handy to use anyway. ls it considered ungodly? And they all seem to have steps - Even with my rollator - l find it awkward to manage.

Dan is so right - there are answers to our problems - its just a case of finding them. And it is easier for the ā€˜blokesā€™ - with the sheaths etc. Manfred Sauer is a good company to google and ask for help - they are very ā€˜blokieā€™. Many of the employees are disabled and know what they are talking about. They will send you samples - as well. Then you can get all you need from them via a prescription.

Coloplast - who make Peristeen are very helpful. l contacted them direct for help a few years ago. They contacted a local incontinence nurse and sent their ā€˜repā€™ along with her to show me how to use it. My problem is an overactive bowel - so the peristeen was not the complete answer - but l still use it if l have to go out somewhere early in the morning. l take meds all the time to bung me up - and never eat anything during the day when l am out. You can use it every day to begin with - then try every other day. Does take about 45mins for the procedure - so take a cup of tea and a good book - [and your phone] with you. The water you pump in has to be blood temperature - which l was surprised how warm that is.

You will soon be an expert - and be back in control. And that applies to your driving - donā€™t give up - plenty of ways they can adapt controls to suit you. l have seen a lovely young girl who was only about 3ft - with very short legs and arms - with part of a hand where her elbows should have been. She drove - car adapted so that she could work the controls- had been to uni - got a good job. What an inspiration.

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Hi Ronin, well done you! I use Peristeen each day, it is brilliant! so donā€™t waste another minute, youā€™ll soon get the hang of it & they have a wonderful support team who can talk you through any problems donā€™t worry, they really have heard it all!

As for the Supra Pubic catheter, I had mine done nearly 2yrs ago. It only involves a very small operation with an overnight stay in hospital. I have mine changed every 9/10wks, at home, by the District Nurses. It really does change things, I could go on & on but youā€™ll get all the info from the urologist, if you want to message me Iā€™ll try to helpā€¦this is the best thing since sliced bread!!

Rosina x

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hi ronin

i used peristeen too for a year but as someone else said u need 2 hands to use so i had to stop cos i can only use one side of my body-unfortunately my non dominant side-gggrrr! but i found it very effective-u will soon master it i am sure.

ellie

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H [quote=ā€œchocorangeā€]

hi ronin

i used peristeen too for a year but as someone else said u need 2 hands to use so i had to stop cos i can only use one side of my body-unfortunately my non dominant side-gggrrr! but i found it very effective-u will soon master it i am sure.

Hi

I am quite fortunate as my partner helps me ( not the most romantic thing ) because I have difficulty using my left hand.

Yes we seem to have got the hang of it now and it does make a big difference.

Thanks for the reply, good to know that other people ues it.

Ronin

ellie

[/quote]

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Thanks to everybody for the replies.

Itā€™s been like coming out, nobody talks about these things.

I should imagine there are a lot of people out there in the same boat who donā€™t go out for fear of accidents.

The Peristeen system can be quite embarrassing to be introduced to but the freedom it provides is definitely worth the effort.

So lets talk poo.

Thanks once again.

Ronin.

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What a Star you are Ronin - yes out of the closet! - Your post will give so many the confidence to ask for help - as there usually is an answer to most problems. And now you know who can also help you if you need a few tips. lts the people who use these devices that know most of the answers.

l had to have a supra-pubic catheter fitted about 20yrs ago now. So now l can stand up to pee - even leave ā€˜the lid upā€™ ! For the blokes - the sheath/bag system is probably the easiest. And even self-catheterising is easier for the boys. You certainly cannot mistake where to put it. The disadvantage of self-cath is utiā€™s. The sheath system would not cause this. The SPC is a much lower risk of uti - its very occasionally that l have had trouble.

l did write on this forum once that l felt that the bladder/bowel incontinence was probably the worst part of MS. And l got rather a ā€˜snootyā€™ reply from someone demanding l disclosed where l got my facts from. Well - you only have to read the distress felt by so many people on this site - let alone the silent sufferers who find it too embarrassing to voice their anguish. Now l see that the person who doubted me has now an appointment with the incontinence dept. So l can only surmise their MS has been fairly mild.

l have had PPMS for 32 yrs - and had these problems from the start.

All the best to you and your partner Ronin.

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Hi Ronin

This is a great great start to your blog. Youā€™ve received some interesting and informative replies, I hope this will encourage you to continue.

I hope it helps to share your experiences and in return help other people on this forum who are also struggling.

I hope the hoist has given you some independence back in the bathroom? Using a suprapeubic catheter may improve things for you too. Iā€™ve only had to have one years ago, temporary following an operation so not really qualified to comment but hope it works out for you if you choose to try one.

Good to hear that you are getting plenty of support.

Noreen xx

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Agree. Great that youā€™ve got it off your chest, Ronin. And glad youā€™ve got the conversation started- and so many people can relate.

Thatā€™s what these forums are for- to share difficult topics/information, support each other, feel a sense of community and er, tell Xmas jokes.

Stewart (admin)

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Morning Ronin

Use this thread as your blog for now, it is really interesting

Keep updating, whenever the mood takes you.

The guys sharing this forum, have the option of saving it to their favourites and using it as a reference. Particularly the ones who are facing similar experiences and choices, similar to yours. Not everyone has the confidence to speak out about intimate matters Ronin.

Thank you for being honest and having the courage to share

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My bowels are a nightmare, they just donā€™t work like they should. I dread it when I need to go xxx

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Hi

Do you have a local Incontinence Service/team I think you can self refer.

Or have you an MS nurse you can talk to.

A practise nurse at your doctors surgery can you make an appointment with them.

And of course you can talk to your doctor.

Donā€™t suffer any more, there is really no need.

It will not be as embarrassing as you are worried about.

I know it is hard but they have heard it all before.

Ronin.

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Hi, thanks for the info. My Doctor keeps fobbing me off with laxatives, which I keep telling them I donā€™t need as I do not have consitipation, the problem is with my back passage muscles not doing what I tell them. I mentioned it to my continence nurse when I went about my bladder issues, I think she is going to look into it xxx.