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Pinkelle
27th December 2018, 18:28
Hi people. Havent posted for a while as I've had yet another chest infection and been pretty poorly.
I have another problem now which I feel embarrassed about and stressing over it.
I am finding that when I need a wee or need to empty bowels the feeling comes on so quick by the time I get into wet room and get hoisted it's too late. It's on my mind constantly now and freaking me out. I wear tena pants most of the time but if mick takes me he finds it hard getting them on me by himself so I go without.
Im finding this very hard to talk about but I know you will all understand. Any advice please???

Ellie
27th December 2018, 20:31
Sorry Pink, you're really having a tough time these last few months.

There are meds for urinary urgency which your GP can advise on. Unpalatable though it sounds, a catheter might be a good option and remove that particular stress.

Did you say you've IBS or maybe I'm mixing you up with someone else? Could it be the food? Are you on the Multi-Fibre one?

When I was badly constipated, I got overflow diarrhoea which is when impacted hard poo is stuck in the bowels and had very urgent needs. I had gurgles in my bowels and I only had a few mins to get to the loo. It took a laxative regime to solve the issue.

Can your GP refer you to a Continence Nurse/Service? I know it's embarrassing but it's hellish for you at the moment...

Love Ellie.

Pinkelle
27th December 2018, 20:36
Yes I do suffer with ibs. They did ask me at the hospice about a catheter but wasn't keen as I was just getting used to the rig. I wish they did it at the same time. Its getting me down now x

Lynne K
27th December 2018, 21:09
Good luck finding solutions Pinkelle. I can relate to some of what you say and I'm still just about Mobile. I'm not surprised that it's taking its toll on you and feel for you. Lynne x

Deb
27th December 2018, 21:09
So sorry Pink for your problems ,Not surprised you're feeling so low.

Sometimes I need to rush to the loo and obviously I can't be quick . Of all the difficulties with MND I find the loss of dignity the worst thing to cope with.

I hope you get some answers and advice soon.
Love Debbie x

Kayleigh
27th December 2018, 23:54
Hello Pink,

Sorry to hear that you have been so unwell. I hope that you were able to enjoy Christmas with your family.

I get where you are coming from about the issue of getting to the bathroom in time. Sadly, the days of being able to dash to the bathroom at the last minute are long gone for me and my rollator - now it involves some advance planning to allow enough time to get there!

Sometimes we actually need the bathroom before we get the feeling that we do. I find it works being pre-emptive about it. For example, instead of waiting until you think you need to go, try making your way to the bathroom before then e.g half an hour or one hour after every meal-time or drink. That may work because we usually need to go to the bathroom fairly soon after eating or drinking anyway.

Sorry that I can't be of more help. As always, Ellie has provided some great advice, and hopefully if you speak to your GP or nurse in the new year a long term solution can be provided for you.

I agree that it can feel embarrassing for us to discuss these sensitive issues, but I am sure that the nurse (or other medical professional) will put you at ease by talking things over with your in a sensitive way. He/she will be aware that this is not an easy subject for any patient to deal with and so they should be kind and understanding.

I find that whatever problems we have, the medical professionals do their best to provide a solution - I find that letting them 'do their thing' and going with the flow of things (sorry about the pun:)) helps, rather than worrying too much.

Hopefully, once you get the ball rolling...a solution can be found for you... and that will be a problem solved that you no longer need to worry about!:D

I hope that you feel much better very soon.

Love and best wishes to you and your family,
Kayleigh x

Pinkelle
29th December 2018, 08:55
Thanks for the advice girls. I'm taking kayleigh advice at the moment and making my way to bathroom before I really need it. I will talk to someone in the new year xx

Newbie17
29th December 2018, 13:13
Hi Pink, so sorry to hear you’ve been unwell again and now to have this problem too.

hope you can get help and advice to sort this out very quickly. Take care xx

Kayleigh
29th December 2018, 14:06
Hope you are feeling a bit better today Pink.
Kayleigh x

shrew
29th December 2018, 19:16
hi hope that ur ok
Pink, wise to go before loo before ur desperate x

JAY TEE
29th December 2018, 22:08
Pinkelle, Yes convinced MND switches lots of things off. I am often constipated for couple of days and as typing now got stomach pain hope my usual Saturday curry and pint clears me. I have taken two Senokot tablets and hope that clears me. I also have pee accidents sometimes just fallen asleep in my wheelchair and ride around in house to my pee bottle. I do sometimes have a leg cramp as well. Luckily now have a pee pad in as well so when out and about hopefully no accidents. When out of the house always careful how much I drink so not struggling to get to the toilet. I do go to local Hospice for a day break luckily access there very easy. Best wishes John

loobylou
30th December 2018, 10:18
I have the same problem and was told the bladder problem was not necessarily connected to MND and was referred to a urologist. I am on both memedications for this, Solifenacin and Betmiga which can helpa lot and did for a while but not now.

So have been sent for scans, ususal delay , 7 weeks later waiting for results after lots of chasing GP on case, but she says the likely result barring anything wrong, is a catheter or sub pubic catheter which involves a day admittance. Both need tubes changing every 3 months.

Fel for you Pnkelle, I live on my own and I get very frustrated, as I am in a wheelchair permanently and have to baord across to the toilet, preplanning doesnt always work, and Tena pants whilst very good are a a great difficulty when you cant get on or off disabled loos. Happy days x

Kayleigh
30th December 2018, 21:12
Sounds like the bladder issue is not an uncommon one! Great that we share our experiences/knowledge to help each other and also to know which medical professionals to approach for help.

Loobylou, I am sorry to hear that it is taking so long to get the medical resolution that you urgently need and that should make your day-to-day life much more comfortable. I hope that things get sorted out for you very soon.

Best wishes,
Kayleigh x

Catsparkle
1st January 2019, 16:11
I'm sorry things have been so hard for you Pinkelle x I have this too. I used to have leakage as well but that's stopped, which makes me feel it might be MND related for me cos my MND stuff seems to come in waves. Having read this thread I'll ask my doctor about it. When my daughter had urinary issues they said for her to drink a regular amount through the day and go to the loo at regular times in the day, i wonder if that's a help to us as well? I bet they'll say no tea though! Sob sob. I'm not in a wheelchair yet so ha e been dealing with it by buying bigger stretchier pants and very easy to pull up and down thermal leggings from m and s in a bigger size. I found them because someone with MND r reviewed them! They seem to help with my leg spasticity too.

broken_nails
1st January 2019, 23:17
My GP is waiting on a sample from me as I am peeing far too much for example my chipped tooth made it too painful to drink today and before a drop was drunk I peed 3 times this makes me dehydrated. But I think the getting to the loo too late is common. When walking is so slow. I think some urgency is related to muscle wasting and the metabolites created by that will be excreted in urine which can irritate the bladder. As an aside damn fasiculations caused by bladder to empty without any control on one occasion

Lynne K
1st January 2019, 23:33
Oh dear 'Broken Nails.' I hope that the doc can sort you out. Lynne

Kayleigh
2nd January 2019, 19:37
Hi Broken Nails,

That is interesting comment you made about being dehydrated. I am much more wary about how much I drink these days, and I probably don't drink enough because I want to minimise the number of trips to the bathroom (because it is so time consuming getting there and back!). If I have just got back from the bathroom, there is no way I would have a drink straight away because I want to make sure that I have a long break before I have make yet another trip to 'the littlest room'. I probably risk getting dehydrated if I am not drinking as much as I should - but those bathroom trips are such a hastle these days!

I hope that your GP is helpful in resolving your bladder problems.

Kayleigh x

Pinkelle
2nd January 2019, 21:00
It's reassuring to know I'm not alone with these problems. I find myself constantly thinking about this problem throughout the day. I've got to stop.

Kayleigh
2nd January 2019, 21:31
As you rightly say Pink, you are definitely not alone with this issue - and I think it is probably more common than people admit to.

Thinking of you, and really hoping that your GP or nurse will be able to get something sorted out for you very soon.

Kayleigh x

slp
4th January 2019, 14:54
Hi
I have had the same problem for several years and totally understand how you feel x I take oxybutynin for bladder control twice a day and extra if I am going out talk to your gp or community nurse x don't be embarrassed about it x

Pinkelle
4th January 2019, 15:43
Spoke to my mnd nurse today. Seriously thinking of having a catheter fitted.

Kayleigh
4th January 2019, 16:49
Hi slp,
Thank you for kindly sharing that information with us. It is good to know that there is medication available, if I need it. I did not know that the medication existed before reading about it on this forum and so many thanks for enlightening me.
Best wishes,
Kayleigh

Kayleigh
4th January 2019, 16:56
Hi Pink,

Great l to hear that you have spoken to your MND nurse for advice - hopefully, the nurse was sensitive and understanding.

If you decide to go ahead with the catheter, I hope that there is not much of a waiting list to get it fitted.
Kayleigh x

Ellie
4th January 2019, 16:58
Pink, because the bladder issue is causing you so much stress and constant worry, I think you should give it a go.

It will also reduce the need for so many hoist transfers.

If you don't like it, it's easy to remove.

Love Ellie.

Ellie
4th January 2019, 17:09
Kayleigh, Community Nurses etc do the catheters in your own home, so no waiting lists.

Suprapubic catheters, which go directly into the bladder, are day cases in a hospital but most catheters are the standard urethral type, especially at the start.

Love Ellie.

slp
4th January 2019, 17:41
Hi Pink

I have had a catheter a few times for several weeks after spinal surgery and they are not difficult to get used to and very discreet x consider trying the oxybutenin as well ,I have been on it for years and it changed my life overnight x

Sarah x

Kayleigh
4th January 2019, 18:19
Thanks Ellie, Sarah and Pink,

Very interesting and useful to know about the catheter option in case it is something that I can benefit from in future - the info in your posts make it seem much less daunting and it is also very good to know that it is fitted at home, as I have a phobia of hospitals. Now I won't be shy about discussing the subject with my nurse if I need to.

Many thanks for sharing your knowledge/experience.

Many thanks to Pink for starting this thread in the first place - you have bravely spoken up about a subject that many of us are probably worred about, but will now feel much more confident about dealing with and talking about - thank you.

I hope you all have a lovely evening.

Kayleigh x

Pinkelle
5th January 2019, 11:36
You are welcome kayleigh. It's a problem that is eating away at me. Constantly on my mind. Just got to sort the bowel problem now. How I wish I was like alot of people and went regularly at a certain time every day!

Kayleigh
5th January 2019, 12:13
Hi Pink,

I don't think it is easy to get in a routine with bathroom trips. Usually, people go soon after they wake up and before they go to bed, but apart from that we have to be kind to ourselves if we do not have a fixed routine - after all, we are human beings and not clockwork dolls!

I am sorry that I can't advise you about the bowel issue. I feel a bit useless sometimes about not being able to give much useful advice - but I always try to remember what the more knowledgeable folk on the forum say, so that I can try to be more helpful with advice in future.

I don't like to think of you worrying so much, because we have enough to deal with, and being anxious affects our quality of life so much. There must be a solution to the issue out there somewhere - could your MND nurse advise you about this important issue or does she know who you can speak to about it?

Kayleigh x

Pinkelle
5th January 2019, 12:31
My mnd nurse is unfortunately a bit doom and gloom. I'll talk to my physio as she is very knowledgeable.

Kayleigh
5th January 2019, 13:06
Hi Pink,

A great shame that your nurse does not have a more positive outlook about things. They are meant to be encouraging us to look on the bright side!

It can't be an uncommon medical problem and so hopefully it is something that you can get advice and help for quite quickly.

Just a thought, which you might have already thought of, is there anyone at your local hospice that you can talk to about this? I was given a phone number of the nurses at my local hospice, in case I want to chat to them to them about any worries and to get advice. Hopefully, all hospices offer this, because sometimes we need to talk to someone sooner rather than later, and I find that the nurses there are always so caring and understanding.

Kayleigh x

Ellie
12th January 2019, 14:51
Hi Pink,

You've been on my mind - have things improved any or have you made a decision yet?

Love Ellie.

Olivia H
17th January 2019, 11:21
Sorry to hear you have been feeling so poorly Pink. It is the time of coughs and colds, which is so much harder when we also have mnd. Hope you get the help you need x

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