Problems with bowels

[Elletheelephant]

Hi My husband is having dreadful problems with his bowels, The Drs said it is neuropathy of the bowel and now has to have enemas alternate days, as laxatives and suppositories have not helped. These don't seem to help much either it takes days to move anything, and his stomach is very swollen and hard and he is in discomfort, and he cant dace eating. He is mostly bedridden now, cant support his own weight and is hoisted at all times. His movement is very limited and he is distressed with being so helpless. I hate seeing him like this too, its so cruel. Does anyone else have experience of these symptoms please ?

[Hellebelle]

Hi, I am so sorry to read this. This condition can be very cruel not just for the person who has it but also for the relatives having to watch the indignities they suffer.

My dad is very often constipated and is on laxatives as well as laxido every day. It is a constant battle as he needs to drink lots but is quite often asleep and we are unable to wake him to get the fluid into him. He has had to have enemas if his constipation goes on for a number of days.

There are lots of different laxatives and it is worth asking the GP or contacting the MSA nurse to ask advice. I think there is an information sheet in the MSA website on managing bowl issues.

I hope you get the help you need. Sending lots of love and strength to you and your husband.

[Elletheelephant in reply to Hellebelle]

Thanks for reply, He has been in hospice for management and now the only way is enemas alternate days. both they and the London hospital have tried. So no alternatve sadly. Its is a horrible disease . Thank you for your kind words, being a Carer is so hard at times.

[Hellebelle in reply to Elletheelephant]

I agree. My mum is looking after dad at home. Dad has 4 times a day care calls but it's mum that is there day after day to try to make sure he is comfortable. We help as much as we can, but my mum can't leave him for a moment unless there is someone to take over. We make sure there are sitters for dad twice a week for half days so that mum can have respite. It takes its toll though as it is mentally and physically demanding. Carers are the unsung heroes of this society.

[Elletheelephant in reply to Hellebelle]

we too have 2 carers 4 times a day and now we could not manage without them, they are very good and really care about my husband, I don't leave him unless someone is with him and agree it is draining and If I go out I feel so guilty leaving him. . People say I must look after myself, which I know but the guilt is always thete.

[Hidden]

Hi and yes my wife has all the same problems in the same way. One of the main misconceptions is that the bowels move very slowly causing constipation and when this happens stuff from the small bowel "bypasses" the blockage giving the illusion that they have diarea and they then recieve the wrong medication.

After many years of dealing with this (including putting rubber gloves on myself) she is now quite settled, as i have took control of the situation with personalising the treatment to her needs and not using standardised teatments from the DN's,

My wife has "Peristeen" to flush out the bowels, which is a type of colonic irigation (plus senacot at night) daily to start with. This is carried out by the care team and not nurses. Once the blockage was cleared the peristeen is then left for about a week with senacot been give the night before once again, but at increasing doses until we get a result, usually using 2 desert spoons of senacot to have a mild efectt with MSA.

This once a week bowel movements is a lot less stressful on my wife and at a level that is cofortable for her.

Kev

[Elletheelephant in reply to Hidden]

Hi thank for reply , helps to hear of others coping with this. It's very degrading for my husband and he hates it but without he is in great discomfort and swollen . I pray it won't continue like this fir ages

Best wishes to you both

[Keycode]

Hi, my mum has similar problems. She has always struggled with constipation from the onset. It used to be managed with laxido and docusate to keep things soft and moving but since being confined to bed has trouble actually emptying. The medication is keeping her going but stools just seem to sit in her bottom. (Sorry to go into detail). The nurse thinks that because she is laying down so much it is preventing her emptying properly and has to have regular suppositries. The carers hoist her at least twice a day onto the commode which helps a little but she is not always well enough to be hoisted. This condition is horrible, it's not fair how much people have to go through, there always seems to be something to make their lives harder than they are already. Glad you have good carers, you really must take time for yourself too. I am with my mum every day and I feel guilty too if I don't spend time with her but I know that sometimes I need a break and feel better for it even if it's just for half an hour or so.

[Elletheelephant in reply to Keycode]

Thank you it helps just knowing we're not alone and listening to others with similar problems . Has your mum had this problem for long? Wishing you both strength dealing with this horrible disease.

[Keycode in reply to Elletheelephant]

Mum originally got diagnosed with Parkinson's about 10 years ago and then got rediagnosed with MSA about 2 years ago. She has suffered with constipation on and off for a least 4 years or so but has definitely had more problems in the last year when she has been on the bed a lot more. Hope you and your husband manage to get some support with this. We have just been referred to the palliative care nurse and she has been really helpful.

[Hidden in reply to Keycode]

Keycode, again the symtoms you describe are exactly what my wife went through, but i try to not leave her in bed, but get her into and out of a riser/recliner chair everyday.

It seems to me that your mother is very much in need of "peristeen". The trouble with other treatments is that they just did not seem to work and she ended up all day to be dealing with bowels or laxedo or somthing and it just exhausted her terrorablly. Peristeen is a 5" long bowel catheter that is inserted in the anus and a small ballon is inflated to lock it in, then upto a litre of water is pumped in to free up the constipation blockage. The ballon is then deflated and everthing comes out in one go into the comode, without any pushing from the pacient. It is so successful that with the little bit of food my wife eats, it has become only necessary to carry this out about once a week. Much easyer on my wife and carried out by the carers as trained by the continence nurse. As a result most of her other symptoms have settle down also.

Kev

[phamwales]

HI

my wife is now in year 14 of this condition and she has declined significantly in the last 2 years. Part of that decline has been a similar bowl issue. We have been hospitalised once last year when the doctor felt she couldn't do any more at home. Since then i manage things with a daily dose of senacot. If that doesn't work within a few days we move toCo-danthrma and that seems to do the trick. On occasions that doesn't work and we move to the last stage of Laxido. This is a challenge as you need to get a lot of fluid down and that is its own challenge. However, we've not been back into hospital and we continue with the rather erratic cycles ok.

[Elletheelephant]

We've tried all of those so far to no avail. Now the hospice are trying different meds. Thanks for your reply and I wish you both strength to cope with everything this disease throws at one