Hi. My husband had his bladder removed  and everything has changed

Hi Lonely Jane,

I agree that Viagra is not a universal panacea and does not work / suit everyone, but "other options are available" for ED - ask your Urologist or Stoma Nurse about vacuum pumps.Caverjet or MUSE - all available on the NHS - don't be tempted to surf the internet for expensive "miracle" products  -- .

Leaks or irritation may be that the glue does not suit his skin ? or the preparation technique could be improved ? There are a number of different suppliers and designs of stoma bag - again, -- ask -- don't just suffer in silence - does he have a barrier cream such as "Ostoguard" prescribed  that helps a lot  - ask!  ask! and ask again !

I suggest that a phone call to Salts Medilink, -- "other suppliers are available" -- to ask advice or samples of suitable products may be time well spent - I believe that they may have stoma nurses to speak or even to possibly visit you.

The stoma bag is fact of life -- clothes need selecting for comfort - don't try to hide the fact that he has a bag - just as combing a single lock of hair over a bald patch is pointless, so is trying to hide a bag's outline.

ASK your medical team until you get some answers to your problems -- they are there to help !

Hi Lonelygirl

I’m sorry your husband is suffering so much with his skin but I’m sure there will be a solution to this, and it sounds like he needs to use a different brand of bags. The stoma nurse should be able to advise, but there are hypo allergenic products out there which could help. It seems like he may need to try some different products. 

A simple method of soothing the skin in my own experience is to use calamine lotion. After cleaning, put calamine lotion on a cotton wool pad or ball and gently wipe over the skin. Dry off gently with a hairdryer on a low setting, and it will not prevent the bag from sticking. 

Sometimes in order to move forward you do need to try to change your mindset-to move from “I can’t ever do this” to “what do I need to adapt in order to be able to do this”? I use high waisted tankini bottoms, and no-one needs to know I have two bags under them. If it takes high waisted shorts to cover the bags, why not just accept that? I’ve never felt anyone was staring at me, and my bags can’t be seen when I swim. My bags are never on show, dressed or swimming, so it’s not an issue for me-they don’t dictate what I want to do. I have the attitude that anything I want to do can be possible with some tweaks! 

Sarah xx

So sorry to hear this. My husband has recently been going through post-op bowel cancer surgery. He had this in January this year. It sounds as though he is going through the same thing as my husband James. For many weeks now I get the feeling he has just withdrawn right into himself though we reckoned that would happen. Only he doesn't really want to do things around the house and wants to sit in his PJs most days. He will go out with me in the car but if its to the supermarket or somewhere he will just sit in the car. In saying that though he has began to come into the supermarket with me again as long as he can hold on to the trolley his balance has been a bit off for a while too and I think this is what has been stopping him venturing outside incase he has a fall. He won't even walk the dog. He got a letter a couple of weeks ago to say that the CEA chemical I think they call it has risen slightly in his system and so this has set him back slightly as he's thinking the obvious that the cancer is back after them telling him they got rid of it all so I know it is still affecting him mentally and emotionally as it is me because if he's down so am I. He also has type 2 diabetes so he's fighting on both corners and before all this happened we were working on controlling that starting a health eating routine and going to the gym three times a week but then of course Covid happened so everywhere got shut down and at the end of 2020 that was when all his health issues began. Now we're back to more or less doing nothing. He is `coming back` though his wee snidey `one liners` and sarcastic comments are beginning to show through so that's a sign he's getting better but until results of this recent CT scan come back it will still play on his mind. Hope your husband gets better soon. Take Care x

I'm so sorry to hear your story. We have been exactly where you are. He may not know & may not even have tried, but a man can orgasm with a flacid penis. It's scarry at first, but definitely possible. If he finds this is possible, it may ignite some interest for him. My wife had even bought a suicide dress. It took months of work, but she is happier now. Things can turn around even with the threat of the next CT scan hanging over you.

Love, Coojee

Im sorry but I think Macmillan blocked me again.

Hi Coojee. Your post is visible. Hope you are well. Best wishes.

Thanks. Maybe they're asleep.  Shhhhh!

Hi Coojee. Thank You for the glimmer of hope and for being happy to share your situation openly. It wasn’t that he didn’t reach a climax…it was just a bit of a nothing to get excited over moment for him. I think because it wasn’t very strong and of course dry probably didn’t feel the same for him. But since that one time he gave up and isn’t even feeling any interest in sex anymore. I guess I can’t quite get my head around how I fit into this equation with him now because I know sex is a huge part of a relationship for men. So there’s this huge thing missing but he doesn’t want to talk about it with me or anyone. I just wish I knew what went on in his head sometimes. 

Hi Patty. I’m sorry to hear about your situation. I understand the feeling of being dragged down when the person you love and live with is down. My husband works full time so it’s not like he’s able to shut himself away completely. It sounds like it’s all quite stressful for your husband if he’s worried about falling. I hope he will regain his confidence soon. My Husband has very down days when he is home and he sleeps most of the time but on better days he continues to do loads of stuff around the garden etc…often over does things. I guess we’re all just trying to find our new normal and settle into this different way of life which will at times be difficult. Thank You for sharing your situation. You take care too! x

Thank You Sarah for the calamine advice. Will suggest he tries that. Current situation is the stoma nurse gave him two different bags to try. One of which doesn’t stick at all. The difficulty is the skin is so bad (he always leaves things to get really bad before seeking anyones help) that the new bags are not only not sticking well to the inflamed skin but it’s hard to tell whether they are any better because it needs to completely heal first which is not possible when it has to permanently have something stuck to it. 

it’s good you have a positive can do attitude. I will  say normally that is my husband’s attitude about everything. It’s just he hates standing out looking different. At work he wore a shirt one day and was told ‘tuck your shirt in you scruff’ so he hasn’t worn a shirt since because he hates the fact it’s untucked so for someone to say it to him wasn’t pleasant, The bag is covered by a fabric cover that I made but of course that shows below his tee shirt which is fine, though someone did comment ‘what’s in that pouch you wear?’ I find it most odd that people can be so outspoken. It would never occur to me to say anything to someone about how they dress etc. however he works for a large establishment and many of them still seem to behave as if they were on still on the playground unfortunately. 

he has looked into high waisted swim shorts…though they were ridiculously expensive for what they were. His main concern is will the bag leak. I think if he can get beyond his concerns, swimming would do him the world of good. It’s also a bit frustrating for him that the bag needs emptying so frequently as it interferes with what he’s doing. 
x