Before I had my Stoma operation ( Loop Colostomy ) I was told by my surgeon that I would have leakage from my bottom and it would be mucous.
She was not joking.
I find sanitary towels do not soak up the oily discharge and so it causes a uncomfortable situation regularly with wetness.
I have taken to wearing a nappy for my own confidence.
Any advice or tips gratefully accepted.
Hi Chromeplated. That sounds very unpleasant for you. Yes a small amount of mucus is normal but it sounds to be a bit more in your case. Have you told your colorectal support nurse how bad it is? Hope they can offer you some advice. If not maybe try the nurses on here on 0808 808 00 00
Hello Chromeplated - I've only just seen your post. How are you getting on? I have the same problem and as I've told the support people it's far more life-quality impacting than the colostomy. The issue seems to be that the mucus won't pass through the 'keep the wearer dry' membrane that sanitary and incontinence products have nowadays, so runs about on top.
The next step for me is to try 'period pants' (though I'm a man) to see if they deal with things any better.
One thing that I've found helps is to make a wad of four sheets of loo-paper folded in half and set into the cleavage with a sanitary towel over it. The wad absorbs the matter readily and I can feel when it is saturated and time to 'go' as there is a small leak onto the towel. No hanging about then, though! Close fitting pants (I use ladies' light control briefs) hold the two things close. When I feel the urge I can get to the loo without disasters (mostly). At night I get time to react; my system is, I believe, learning the signals so that I now wake when the wad is saturated and quickly head to the loo.
I have found it very difficult to get proper information about this; I think there may be a lot of us who are thinking it's 'them' or that they are doing something wrong. It is a known side-effect but doesn't seem to have the graduated impact forecast of other side effects. In other words I've found nothing that says n% get some flow, n% get enough to make them take steps, n% get so much flow with no way to control it that venues have to be scouted in advance to ensure that loos (with traps, being a man) are sufficient and quickly accessible.
There was a post the other day by someone in the Bowel Cancer group whose mother was in the same postion - that seems to have gone quiet.
I don't think it helps that this group (which I'm looking at for the first time today after over a year with a stoma) is separate - presumably because stomas are results of a number of conditions, not causes, and one tends to focus on one's complaint.
Hope this helps a bit.
I am sorry you both suffer from those awful leaks. I cannot bring any solution but can tell you how my loop colostomy caused me the mucus leak but somehow warned me on time, I had to rush to the nearest loo and only had rare issues, i practised squeezing a lot while not moving to avoid accidents if there were no loos. The last 3 or 4 months it became hard like poo! Apparently that was also " normal" according to the nurse,. Reassuring but I thought, :I have to look after 2 poo evacuation ...what was the point of the stoma?
Sorry for the graphic details, but if it can reassure you, you are not alone and it seems that this is still a taboo subject . But we are lucky to have the McMillan nurses, talk to them, I am sure they'll know how to deal with this.
I now have a loop ileostomy...awful!
Good luck to you bothx
Hello Bri26, Thanks for your observations and good wishes. I'm sorry to read you needed an ileostomy as well, that must be awful as you say.
I'm glad to see you refer to this as a taboo subject; I was beginning to think it was me.
Another possible line of enquiry for a management regime that works was opened today by a hospice palliative nurse - we'll see what that brings.
Did you feel that more could have been done to prpare you for this side-effect?
I think they did their best!
We all react differently, whatever problem we have to face, someone else has gone through it before, we are told ' do not worry, that's normal'. I had colon cancer stage 4,, so I keep telling myself the Alien (my bag) may have saved my life, together with the treatments..
The management regime is a brilliant idea! I hope they bring this here too. That is where we need more guidance !
Take care Bagpuss the Third & let us know if you get anything new/interesting out of the nurse's advice.
Thanks - will do. To be clear I'm talking about the management regime I've devised for myself. The suggestion was that the hospice' incontinence people contact me to see if they can advise about a pad with material which will wick the mucus (i.e. does not have the micro-porous layer). I'll let you and others know if there's anything positive
Bagpuss the Third Is this the thread? Have you tried the maternity pads to see if they’re anymore absorbent? x
I read the thread, thanks, and did some more thinking. The description of the issue is distressingly accurate, as is the strange way it is waved away - as Bri26 notes. I'm convinced that the problem with 'wear a pad, move on' is that there seems to be an unwiilingness to admit that the relatively new 'keep you dry' microporous layer now applied to (effectively) all disposable pads (for whatever reason-of-use) will not allow the mucus to pass through. It is very odd stuff.
I spoke to Tena about this; they confirmed that all their disposable products now have the layer. So the absorbency of the pad is, in effect, irrelevant, as the mucus can't reach the absorbing layer.