I've been recommended for an Ace or Mace ( both names used) procedure because my bowel doesn't work. It's where they take your appendix and attach it to your belly wall- making an opening,so that enemas can be flushed down from the top of your bowel, rather than, ERM, being shoved up the other way. I've got an appointment on 28th Dec to see the surgeon. They think the problem is to do with my PSA as well. Anyone experienced this? The only other option is a colostomy? Anyone got one of those??
Any experience would be welcome, as I'm a bit nervous ( terrified) of the whole thing xx
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LizzieR
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Can't help I'm afraid, but wanted to show support. Hopefully someone will come along to help. Feel for you on the bowel issues. I have PsA too. Also have some gut and colon issues, though not as bad as you.
I know quite a few people with colostomies - it is easy to manage once you have a bit of practice and the advice from the specialist nurses is wonderful. I would imagine that you will have lots of support once it is done to learn how to manage the particular variety of operation you have and it will probably make life a lot easier to manage too than having rectal enemas.
Mother had colostomy, FiL an ileostomy and, in the context of their lives, they were straightforward. My one ??? is whether the PsA affects your hands to the point where the stoma care might be more problematic than it is for other people?
I know of US people who've been prescribed opioid pain relief for many years without ever having an opioid holiday to reduce their tolerance. They've developed gastroparesis and various elimination problems that have been addressed with bowel washout procedures like ace and mace. The ones for whom this was effective were hugely relieved that they didn't need more aggressive interventions (the ones for whom it wasn't also had severe problems with gastroparesis that may have confounded the matter).
ETA: I couldn't 'like' your post, Lizzie - I sometimes wish there was a 'support' option as there is in other fora (e.g., 'thanks', 'useful', 'support') because this sounds horrible.
Thank you for all that information. I'm worried about my hands too- but what I have to do at the moment is becoming increasingly difficult- and it's far more invasive if someone had to do that for me than help with Mace/ ACE procedure. I think! I'm blessed with a wife who is utterly unsqueamish about such things and she says she'd be happy to help if it came to it. I hope it doesn't come to that and I can manage.
It's interesting what you say about opioid- I have had an Opioid patch for a while and no- one has mentioned having as holiday from it.I'm going to look into it.
I know what you mean about the 'like ' button. I often feel the same. Thank you so much for your support x
We should all be blessed with such Best Beloveds! Your wife sounds such a trooper - I'm under no illusion that I'd ever receive any such personal care from my husband as he can't even take out a splinter. Put it this way - my Best Beloved is squeamish to the point where he literally needs the recovery position for the horrors to pass if he inadvertently catches sight of a body on an autopsy table in a crime drama (*even when there hasn't been a single incision*).
I know people who have been prescribed opioids (various types and dosages) for 20+ years. This may vary from one area to another but on a regular basis they are tapered down to nothing so that they can build up again. This is supposed to forestall the need for ever-increasing dosages in the face of greater tolerance and the concomitant risk of gastroparesis etc.
Lol. I have a daughter like that! Terrible in a crisis. Thank you! X
Hi Lizzie
I have very poor bowel function and have heard of MACE/ACE. I know this procedure is done quite often for children and it is effective and gives a good quality of life. Are you using an irrigation system at the moment? They need a fair bit of hand strength. Apparently there are various systems that are easier to use than others. Mine isn’t that tricky but it’s stopped working. Their only suggestion was to remove the bowel but it feels far too drastic for me. I’m waiting to get a second opinion.
Do you have a specialist continence nurse or colorectal nurse?
Yes I use an Irrigation system - as well as an array of enemas/ suppositories etc - but I still end up in hospitals with impactions. During the last visit, the consultant suggested that I might conside a MACE/ACE- she's referred me to someone in Leeds who specialises in them. Apparently, they can be done in adults, otherwise, as you say, it's a colostomy. Apparently it's most common in children, but it can also be done to adults - though it's not always as successful. Not sure why! I can't decide what to do, so have put my brain on hold until I see him on the 28th Dec. I'll let you know what he says, if you want? Do you know why yours has stopped working?
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