Help, MS 37yrs plus tmi


and I’m sorry for the details… And this is scary long term stuff here so sorry people who are new to MS

mum in law has now had second bout in 12months of fecal vomiting now due to being backed up / blocked.

shes in hospital but been told that there is no room on the referral list for her being seen by the bowel care team (wtf this is not ibs). Dad been told to ring up the hospital everyday to see if the bowel care team have an opening on their referral list. This is not a solution.

we as a family are now being told that having a bag fitted would not help, to high is where it’s needed but being told that would reduce the nutrition she’ll get. Put it low and she will continue to get blocked! So what we do?

all teams want to do the bare minimum i.e. Patch her up and chuck her out. Not actually get to the bottom (pun intended !) of the situation and implement a solution.

Shes not getting the right nutrition as it is. Yes a bag is not dignified but does anyone think manual bowel care for the last 20yrs, having explosive poo as it goes round the twisted bowel / blockage and FV is dignified?

Thanks in advance for all advice

sorry to hear this, cant quite believe it, has she got an ms nurse if so contact her she should get something done,if not ask at the hospital who you can speak to about this,this is just not right,i would contact my local mp,dont let this go,please get her sme help.

I agree re getting your MP involved this is an unacceptable level of care. There is something called PALS Patient Advice and Liason Services I’m not sure how it works but if you google it I’m sure the info will be there.

Try reposting on the Everyday Living Forum people there will know more than I do, PALS is often mentioned.

Please keep us informed on how she gets on.

Jan x

MS society has been so helpful today!

dad feeling less overwhelmed and had a verbal hug in effect from what they were able to say today.

they have said that no this is not normal for MS and actually it is something extra. This was completely opposite to gp and district nurses.

MS society got hold of the hospital and yes they have an MS nurse who we have never met or knew existed! Turns out mum is not on the MS consultants list … Err why when he saw her last time she was in hospital with this last time? Think we have fallen off the radar somehow. Going in the right direction again now but still need to get few more things sorted but dad is feeling better and more positive because the nhs don’t seem to be just letting her die.

Good news, hope she gets the help she needs quickly. Well done you and you Father in law for getting the ball rolling.

Jan x

thats good to hear,things might move along now for you.

I’m appalled at the generAl lack of respect of nhs meant to be giving people care…

It’s just an absolute disgrace they way people are treated .