Living with husbands stoma

Hi Sarah and Kath... thanks so much for asking after me.. its really so kind of you both... I had no sleep last night but going to work helped as it let me talk about it to my friends and they're all there for me...

Just home and he just asked what I was having for dinner... as he was cooking his... I just said I wasn't hungry and have gone upstairs for a shower... really muggy day...

On a positive note... if there is one... he's just had a shower... and he's got clothes on.  I'll update you tomo on tonites events... thanks again.. you are lovely ladies. Xx

Hi THOMO 

I am  pleased that you have friends at work it’s really important to talk about your problems. 
I hope you have a stress free  evening. You need to catch up on some sleep and put yourself first. 
Does he always shop and cook meals just for himself? 

Stay strong. 

Hi THOMO

I’m really glad you’ve got some friends at work you can talk to as that will be helpful for you. Hope you get some sleep tonight.

Sarah xx

No... normally as he's retired and I'm still working full time, he cooks meals through the week.. I cook at weekends.. on my days off...  but I seen him get find out of the freezer last night.. and knew it was just for him as its something I don't eat... this is what he does... if we are not talking he just sees to himself and ignores me... I'm used to that. But I hope to get some sleep tonight... and yes it helps having some lovely friends.. thanks again for checking in. Xx

I hope that you have some good nights rest. I find a nice bath with candles make me relax ready for sleep 

Take care 

Hi Thomo, Sorry to hear you're having troubles with your husband's stoma.  I have a stoma (emergency op not due to cancer) and it is much more comfortable and easier to deal with if it's kept less than half used.  I use a drainable bag and I had an awful accident once (once was enough) where the velcro at the bottom of the bag caught on my dress and I wasn't wearing undies.  Sh1t all over me and the sofa/carpet/everywhere.   Now I always use sellotape to secure anything but an empty bag.  Just a warning for you!  I hope the stoma care nurses have advised you of fulfilment companies he can use, and therefore provide opaque pouches and odour sprays etc.   You can also purchase covers to go over his pouch separately from specialist suppliers.  Maybe try etsy or similar.  Perhaps get him a cover with a favourite depiction/colour etc.  It might encourage him to cover up.  It wil, be uncomfortable having it swinging about, especially if he develops a parastomal hernia like me.  It sounds a bit like he is fighting it, he might be depressed (who wouldn't be).  I just got on with mine, perhaps he needs time to accept and adjust.  I wish you well.  Please come back to me if it helps.  All the best, Woods. 

Hi Woods, thank you so much for responding to my plea for help. Everyone on here has been so supportive and its been very much appreciated. 

Things have improved greatly since my last post.. I'm afraid it did take me almost having a break down and walking out.. but that prompted my hubby to talk about it and he agreed he hadn't considered my feelings and agreed to address his hygiene. He has done and now changes his bag every night... obv not if its empty tho...b4 bed and is changing it before it's too full or smelling... most of the time... during the day... there has still Been the odd mishap, but not on nearly the same scale as had been happening almost daily... I do still have to clean up the bathroom behind him but I am happy with that compromise. It has been life changing for both of us and I understand its much harder for him.. but he really isn't depressed.. apart from his hygiene, he's going about his day as normal as possible. 

We have noticed that his memory has been terrible since the surgery, possibly due to his age and being 7 hrs under a large amount of anaesthetic... and we recently came across the 'missing' kit that he accused me of taking out of the car... and he was shocked to realise it was actually him who'd moved it and forgot. Least he knows it wasn't me now.

As for his stoma nurse.. just the one... as I mentioned in a previous post, she has been worse than useless. She was rude to me because I dared to ask if my hubby could have some opaque samples to try.. to be told if he was managing OK with the transparent ones that was fine. It wasn't about me... she finally relented and had 3 samples sent..my hubby struggled to line them up properly as couldn't see the stoma properly and had an accident with one he didn't put on correct.. I feel his stoma nurse should be offering him more support and showing him how to do this.. but she seems happy to leave him with transparent bags, which he doesn't want either.. As its easier for her... and she told him he has to remain with the provider he has for his supplies? 

He has looked the Internet for coloured covers but can't find any to fit the shape or size of his current bags.

So things are getting much better and hopefully will keep on that way... I've been off work with stress and I reply don't say that with self pity.... but I just found out my son has been diagnosed with thyroid cancer and is now awaiting surgery.. so I just couldn't cope..but I'm getting there...

Thanks so much again for your post and I really wish you all the very best. Xxx

Hi again Thomo.  I'm glad things have improved.  You didn't mention ColostomyUK.org.  They are a charity, based in Reading.  I was one of their volunteers after being a "customer"! They have online and hard copy magazines, full of info etc, and have access to a stoma care nurse who might be helpful.  The suppliers/fulfillment companies are usually only too willing to send free samples, so worth pursuing.  There's more than one way to find what you need.  It took me a long time to find what suits me, so patience is key (although frustrating I know).  I'm sorry to hear your stomacare nurse isn't providing what you need.   I have a team to call upon, so maybe she's overwhelmed working alone.  I don't know if you could go to another hospital's stomacare team?  These days they can use Zoom and the like so for a chat no need to be there?  My husband is also having cancer treatment,  so I know what stress you are under.  Don't forget to find yourself some quiet and space to breathe and take a break from it all.  Best wishes, Woods. X 

Im so sorry to hear about your husband and can only imagine what stress you are under when you've had that to deal with yourself. 

There are actually 2 stoma nurses at the hospital but only one deals with my husband. She advised the other one only covers her when on leave. 

That said, my husband has sent to another supplier, without her knowledge, to ask for more samples as he doesn't really like the 3 she had sent... so as you said, with patience, hopefully he will find a suitable one. 

My wee dad, who is 92, also gad a colon cancer op 6 years ago and also has a stoma... he did have to try quite a few before finding the one he uses now and is very happy with it... although he can't cope with it on his own as he also has a large hernia and my wee mum has to change them for him. 

Thanks again for your support... and please accept my very best wishes for your husband and his recovery.. xx

Hi there. 
So sorry to hear that your son is under treatment for cancer. You really are going through it. I hope all goes well with him 

It’s good to hear that your husband has opened up to you and wants to manage his stoma better

I feel furious at his stoma nurse. She is way out of order. We have four at my hospital so I have choice. I recently went to see them as I want to try a flat pouch for a while I’m finding the convex uncomfortable in this heat. They checked me over and said that I am suityto try the flat and they gave me lots. The reason that I’m cross at your stoma nurse is it is her job to help her patients feel confident and manage their stoma’s. She should know the products out there with windows in the front Why hadn’t she helped him apply one. I’ve attached a photo of one I found on the internet surely she has various products 

These are just one and are transparent under the fabric easy to line up 

Also I have problems lining up too, the nurses showed me how to apply in a mirror  when I was in hospital  I bought a travel magnifying foldable mirror it sits on the window cill and I can see it perfectly  also I know where the top should be to allow mine pouch at an angle away from my legs 

Thats basic info that the nurse should support her patient with