[purple_faeries]

hi

At the moment for my bowels I use Peristeen Anal Irrigation which is like colonic irrigation/enemas in the fact that you stick a catheter up my anus and pump warm water through my system through my colon etc and that empties my bowels (although it is my husband that actually has to do it not me)

What the problem is that as I cannot do it I have to rely on him to do it and he doesn't always necessarily do it at the right time/days or at all.

What I've read about the ace is that is essentially the same as Peristeen but it isn't done through the anus but there is a stoma put in your stomach and you pump the water through that way? That to me seems a lot better because I'd be able to do it myself so give me more independence and give my husband more free time to help him cope better.

I have a problem though because my husband is incredibly squemish and doesn't want me to get an SPC because of the fact that it is 'showing' through the skin which he doesn't know whether he'd be able to cope with. I have tried telling him that it can be covered up with a dressing but he still isn't sure.

Can anyone recommend to me the best way to go? I might have a battle in getting the ace done as i am and will have with the SPC but it seems a lot better to me cos both would give me a lot more independence.

Thank you

Hannah

[Quad65]

I'll try to be tactful, but your health comes before your husband's squeamishness. If your husband's inability or unwillingness to help you interferes with your care, then he really has no right to restrict what you do to enable you to maintain your health. If this is a viable procedure for self-care, then his his squeamishness about it showing should be irrelevant. You are the one who must live with the effects of your SCI. Yes, he is involved, but not directly.

I say anything that will make your life easier through self-care and independence should be pursued and encouraged.

[Lucydog]

As you dont yet have a positive diagnosis Id be very surprised if you were given a SPC or the ACE procedure.It is my experience with medics that they will try anything and everything before performing invasive surgery.

As for care, if your husband is unwilling or unable to provide the care you need its about time you contacted social services and asked for a care assessment of your needs. Its everyones right to have this done and they cant say no to assessing you.

cheers
L

[ems]

what level are you?

[russ1]

I'd echo Lucy's comments, get onto social services for an urgent assessment of your personal care needs. Even if your husband was willing to he shouldn't have to be doing your personal care. It's your right to have people come in and do this for you and you should be going down this route rather than be thinking about unnecessary invasive surgery.

[purple_faeries]

I do have a Social Worker coming in tomorrow for an assessment I think, but I have been told that they will not be able to do any of my 'medical' needs so they will not be able to do my bowel programme, cath me or anything like that. We are looking to go for Direct Payments rather than Home Care from SS, but they said that even with Direct Payments they will not be able to do anything like that, just getting me up and showering me and dressing me which I don't understand I thought that they were our employees and we could tell them exactly what we need them to do, not that they wouldn't be able to do half of what i need them to


Hannah