Living with husbands stoma

Hi THOMO

I agree with Artsie. Please feel free to post whenever you need, that’s what the community is here for. Lots of us have posted on your other thread, and we feel huge sympathy for what you are dealing with. It’s clear you love your husband and are looking for a solution to the issues which are bothering you-very valid issues in my opinion. 

Please continue to seek advice and support when you need it-it’s what the community is all about.

Sarah xx

Thanks Sarah... I'm actually sitting in my bedroom crying my eyes out.   My husband had his follow up appt at 11.30 this morning and I was driving us there. The last thing I asked before we left the house.. which I always ask..  is have you got your spare kit in the car and he said yes dear.. which he calls me when he's annoyed at me asking. 5 mins down the road he said his bag was filling up.. and it just kept filling till it burst. He yelled at me to pull into the layby which I did. I learned over to get his kit out of the glove box and he yelled again that he needed me outside at his door. So I got out and ran round, opened his door and he said get my stuff out of the glove box.. I said that was what I was going to do. Anyway, opened it up and nothing in there. He started shouting at me, asking where I put them as he had 2 kits?? I didn't touch them.. I don't, as they're not mine. He must gave swapped them into his car and forgot to put them back. I have asked him to keep some in both but ignored again. 

I grabbed a box of tissues from the boot, which was all I had. He got out the car and threw everything into the bushes, it was all over his t shirt, jeans and hands. I said we could go home and rearrange appt, but he said stop panicking and just get to the hospital! So I did, he went straight into toilet and cleaned up best he could. We went to the station to see consultant and he told the nurse he needed a bag.. so they seen to him. Sitting waiting to go in, I struggled to hold back tears and told him he'd have to go in himself and id wait in the car.. I said I couldn't deal with this just now. So I did.and broke down crying.. When he came out we never spoke but I said I'd take him home to change as we were going into town... 10 mins away... but he said no he was fine and wanted to go straight to town. He went and did his banking and I did mine. Then I had to do one more thing and said he could wait in the car.. he refused and said he was fine. I walked back to the car in front of him. I was mortified that he thought it OK to walk around with soiled clothes on. 

We got home and I got my cleaning stuff to clean out the bathrooms and looked round to see him sitting on the sofa with the TV on! I asked him if he wasn't going to shower and change his clothes and I'd put them in the wash.. he just said not yet! When I'm ready! I told him he was disgusting the way he was acting and he just said I know I am and carried on watching TV. 

I haven't stopped  crying and really don't know what to do. 

So sorry for the long-winded story.. but I'm hoping someone who has gone through this can advise... 

Sorry.

Hi I am presuming that the stoma nurse showed your husband how to attach the bags by bending them over,sticking the bottom part on then popping the top part over the stoma and sticking it down.that way you dont need to look through the bag to line it up 

Hope that makes sense

Im sure he knows all that anyway

I have an iliostomy but I presume its the same.

Best wishes

Kath

Sorry our posts must have crossed.I wouldnt have put mine up considering your morning if I had known sorry

Kath

It's no problem Kath... I'm grateful for any input from anyone, regardless the day we've had. Sad thing is, I'm trying to help and be supportive but being pushed away. And he's being quite nasty. But thanks anyway. X

THOMO

Your day  sounds horrendous and inexcusable.

I really think it may be an idea to back away. I know that you are supporting him but it sounds like he’s pushing you away anyway so give him space. Lots of it

 He really needs to talk to someone about his mental health. You’ve done everything you can. Im sure he doesn’t mean to take it out on you but he is. 
Please make an appointment to see your GP and tell them everything that’s happened. They may be able to help you both. 

Why don’t you pop out to see a friend  or meet for a coffee. Let him feed himself

. Have a break from it all. The separation will do you both good. 

I really hope you have a better afternoon  keep talking if it helps 

Sending you a hug 

Hi Thomo

Please, please speak to someone about this - for your own sanity as much as anything.  You're trying so hard to help him but it's very difficult when he keeps behaving and pushing you away like this.  And if he's being nasty too then it's really unacceptable. You need both moral and medical support in dealing with this. Even if it's purely to help yourself.

I'm a carer for my brother who is both learning disabled and physically disabled.  It's not exactly the same situation as yourself but he gets very frustrated and nasty at times due to the fact that he has been chronically unwell for many years (17 years on dialysis).  I've put up with a lot from him over the years and bitten my tongue often but the last 2 years were particularly bad as he had to shield which didn't suit him at all.  To cut a long story short, after a particularly bad day when one of his long term carers had threatened to quit over his unwarranted nasty behaviour I left him to stew over a weekend.  Didn't phone or visit (he has other carers so I knew he wasn't in any danger). Come the Monday, I went to see him and totally marked his card. Disabled or not, unless he sorted out his attitude, I was washing my hands of him.  Laid it on thick with a load of home truths and gave him a set of ground rules and a final warning - or else (and I meant it).  Anyhow, 3 months on and we've had no more rows.  He's pleasant to me and others.  I'm amazed that he's kept it up so far so something I said must have hit home.  Long may it continue.

I'm not sure if that's good advice for you or not, only you can judge (and I really do apologise in advance if I'm way off the mark and caused any upset).

Take care.

Oh THOMO

I am so sorry for what you went through today-I’d like to give you a big hug but will have to settle for a virtual one.

It seems that those of us with stomas here have been blessed not to have to deal with this, but you should not have to either.  It’s not acceptable to walk through town in soiled clothes and then refuse to shower when at home. In no world is that acceptable.

I hope you don’t mind, but I asked my partner for their thoughts as a carer for me just to see it from a different point of view. The response was that if I were behaving in this way, I would get short shrift and it absolutely wouldn’t be tolerated. And another thought was is he in some way punishing you because he is angry about his situation and deliberately pushing you away to see what your breaking point is? It does seem that he is in denial despite his protests to the contrary. 

One time when we were going on holiday my bag burst just as we arrived at the airport-it was my first time flying with 2 stomas and I was mortified. Now I don’t deny there was a bit of shouting in the car! But I always carry spare kit and a change of clothes in any bag I take. So I went straight to the disabled loo and cleaned up AND changed my clothes. All was calm. I would recommend carrying a roll of strong kitchen towel in the car for such events. Just pop it in the boot. 

He is responsible for sorting what supplies he needs-not you, so should check and double check before he goes anywhere. I don’t go anywhere without checking everything at least twice!

Katz51 is absolutely right about the way to put on a colostomy bag. You can see the stoma at all times doing it the way she has suggested and it’s so straightforward. This is how I was shown by the stoma nurse in the early days and I’ve always done it like this. 

I think you do need some professional help though, as your suggestions are falling on deaf ears and you are clearly trying so hard to help. But you are being pushed to your absolute limit here, and I hope I’m not speaking out of turn saying that-please don’t take any offence, as none is intended. I am very concerned for you, as I’m sure we all are because none of us with stomas that I’ve seen behave in this manner-we are typically very concerned about keeping our bags covered and as unobtrusive as possible.

I really feel for you going through so much and trying so hard to be helpful and supportive.

Sarah xx

Sarah well said. 

Thank you all of you... I'm in the dog house again.. he's stormed off in a bad mood because I told him he was disgusting.. in his behaviour and hygiene... he won't speak to me now for possibly a day or two... it will be me who is in the wrong... always is. I'm just going to leave him to it. I'm relieved you all understand... and I'm not over reacting. Xx