Living with husbands stoma

Hi THOMO

I don’t know what to say I was opposite to your husband 

When did he have his operation?
Do you think he’s coping with adjusting to living with a Stoma , there’s support here if you think it may help  

I hope that you have support at home as well as trying to help your husband.

I have an Ileostomy , does your  husband have an ileostomy or colostomy?

I only had the clear bags in hospital I was sent home with the grey fabric covered pouches, they’re not transparent and you’re unable to see anything through them  I have to empty every two hours as Ileostomy’s have higher output

Is he in recovery from cancer?  

I hope that things improve 

I also dont know how to react.I only had clear bags for the first day in hospital.I then had the grey ones,very discrete.

Is your husband really cross about having a stoma and reacting this way because he is trying to ignore itHopefully he will soon realise he is much more comfortable if he empties it regularly.

It really shouldnt smell if it fits correctly.stomas do change in size over the first few weeks and if he is unable to check the size himself,maybe a visit from your stoma nurse might help.

I do hope things improve soon

Best wishes

Kath

If you click on user names you can read bios of how people have got on.might be useful.

Hello Thomo,

I, too, find your story baffling.  I have never had transparent pouches, disposable or emptiable.  The ones I was given at first (colostomy fifteen months ago) and to which I've reverted have a flap arrangement so that output can be viewed if necessary.  Personally I wouldn't wish to see the output all the time, let alone force others to.  Is there a reason he doesn't dress in day clothes?  I wasn't told a limit and I do let my pouch fill up, sometimes too much (it's a bit full right now, frankly).  The downside is that a change in position when the pouch is VERY full can cause it to leak at the seal.  The smell may be caused by the positioning of the pouch seal around the stoma.  The pouches usually have a valve to allow gases to escape.  They are like a hard piece near the adhesive plate.  The pouch needs to be rotated during fixing so that the valve is towards the top.  If the valve becomes contaminated by output it will smell as gas passes through it.

To say any more we do need to know, please, if he has a colostomy or an ileostomy as the experiences seem to be quite different.  One thing I can say is that the output is not the finished article.  The smell is quite different and it's not formed into stools, though it may look that way.

Another observation - with a colostomy, mind - is that as I use opaque pouches I often go bed with a part-filled pouch as I have very little (but not no) overnight output.  It lies underneath my nightclothes and neither of us are aware of it.  It's nicer with a fresh pouch but changing can be time consuming, tiring and wasteful and there is soon some output in it anyway.

From what you say it's early days, and it takes a while to realise that what you're sent home with isn't the only option and then work out how to get different things as you are placed locally.

But finally - to be blunt and perhaps seem very unsympathetic - your post has terms like 'insists', 'lying around', 'I find repulsive', 'constantly', 'vile', 'I can't ...cuddle' and 'hygiene' - just meaning malodorous or ugly, not dirty.   Just a thought.

Hope things improve for you both; it's a tricky time.

I just remembered I had transparent in hospital in fact I bought some home. But that was for nurses convenience so they could check all was working for the first couple of days. They do not prescribe them. 

I'm sorry, but I need to be equally as blunt! Yes I used those words because that describes what I feel. I'm not asking my husband to do anything I wouldn't do myself... I can't help feeling sick when I sit down to eat my breakfast and he decides to throw open his dressing gown and all I can see is a bag full of excrement.. which is also smelling.. a simple request to change it is met with a total refusal... and good for you for being considerate enough to wear a nightie.. my husband is naked apart from this bag! So I apologise if you find my use of words to be malodorous... but I feel thats maybe more to do with how you read them... my husband also goes to bed naked... so yes I have a problem cuddling into a bag with output in it.. that I can see... surely putting a clean empty bag on to go to bed is no different or time consuming than me having a wash and brushing my teeth before I go to bed? 

So yes, I find your reply lacking both sympathy and empathy... neither of which I want.. just looking for advice. 

Yes Artsie.  That was also the case with my husband.. the clear ones were used in hospital because the nurses had to check the stoma was working... and it was easier to teach my husband how to use it... but the company who supply the pouches refused to let him have samples of alternatives without the stoma nurses' OK... and she has said if he was happy with the transparent ones, he should stick with them. 

Hi 

The Stoma nurses did my script on my six/eight week check and made my template allowing me to have them cut by my supplier. Though I prefer to cut them myself. If your husbands sight is so bad he cannot see then he can buy a cover to hide the contents

Take care 

OK Thomo, I'll engage with you no further and withdraw from this thread.

Hi Artsie... my husband cuts them himself using a template and they fit no problem. He can see well enough but says its easier to use the transparent bags as he can see through to line up the hole  with the stoma, whereas the coloured ones with the lift up flap at the top half are more difficult to line up. 

Thanks again to all you lovely people who have given advice and been very supportive on here. It has helped even just to be able to 'talk' about it... however, from a reply I received yesterday, some appear to feel I am not being supportive and possibly even selfish... which is so not the case... I love my husband and hope to get this sorted... but can't help how I feel regarding hygiene. I don't have any issue with the stoma and have accepted it, no questions... and am in now way disgusted by it or my husband wearing it... its still him... I only want him to be more hygienic with it. 

I feel for all of you on here who have had to go through what you have and am in awe at how you all cope. I lost my first husband of 34 years to cancer 14 years ago, then after 12 on my own I met and married my now husband.. so yes I am struggling a bit but will hopefully reach a compromise eventually. 

I'll leave you all in peace now and thanks again. 

Very best of wishes. Xx

Hi THOMO 

This is a safe space for us all to have support from others. If you feel you need to chat feel free 

I hope that you’re husbands recovery improves. His operation was huge and think recover and energy levels take a while to improve. Hand on heart I was six months til I stopped my afternoon naps. 
Take care