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

Dear Sarah, I’m glad I did post..though more from desperation than bravery…because I’m glad it’s helping you and others to feel you are not alone. My husband has decided he won’t ever be travelling on a plane or going swimming ever again. He hasn’t made friends with the stoma as people suggest. He hates the fact that he can’t wear a shirt ever again unless it’s untucked. He was given the impression he would choose how high or low his stoma would be so it was all very upsetting for him once he realised how it interferes with clothing.  I managed to make him some covers for the bag, without which he would be very self conscious. Again…something I feel should be given to a new stoma patient. Just one to make them feel less embarrassed. 

There should certainly be a couples session where the affects on love life should be explained in depth with counselling.

I think it’s disgusting how you were told in such a brief way by an ill equipped embarrassed consultant in front of your sister! 

It’s very sad how they only seem to be interested in the physical side of things. 

I’m glad you share how you feel uncomfortable about it all because I am not put off by his bag and it doesn’t put me off cuddling him or anything. When I said how it hurts me when he pushes me away his reasoning was because he wouldn’t want to be anywhere near the bag and can’t imagine anyone wanting to kiss him or anything. So I guess it’s all about his self image when I was thinking he had gone off me. I just can’t imagine a man having sex taken away from him wanting to even be bothered living with someone so I was feeling very vulnerable. 

I wish there was a way we could chat away from this forum. Sending hugs xx

Dear Jane

I’m sorry you have so much going on and have also been left to navigate these awkward topics alone.

I hope you will be able to have an open conversation with your husband. 

I’m glad you are being helped by this conversation. 

I think that’s what causes a lot of my insecurities because my husband will rarely talk so I fill in the blanks and get in a state about things that probably are not issues at all. If he could just say he loves me and still finds me attractive then I could feel more inner peace. He has never been very demonstrative with words or actions…other than sex which did matter a bit before but now it’s a huge problem for me as I need lots of affirmation about these things.

I also feel guilty and sad about the many times I had to turn down sex in the past due to having chronic conditions that have caused pain and exhaustion for me. 

Im glad you feel comfortable about the stoma..it’s the best way for you to be and I hope your husband will be fine. I think it’s important to explain that you’re not embarrassed otherwise he may not be but may feel you are so that will make him feel awkward.

xx 

Hi,It sounds as if your husband is struggling with how he looks and feels about the stoma.He should be able to get covered bags from his stoma nurses.Mine are covered but you can take the material off them if needed.Your husband could do with reading about or meeting ostomates who are managing well and leading full lives.For me I was anxious to get back to gardening which I enjoy.I was able to do that after a few months.I was all set to try swimming with other ostomates but then the pandemic arrived and the special classes arranged by one of the stoma nurses were cancelled.There are men on here who play golf and other sports following their urostomies.Of course having a urostomy will alter body image but it is possible to come to terms with it and have a good life.It takes some people longer than others to get to this stage.I still have lots of work to do to get back some intimacy into my relationship but I’m hopeful things can improve.I wish I could help you,thanks so much for posting.Love Jane xx

Hi Sarah,Oh that must have been horrible for you,to be made to feel so different.The nurses kept telling me I looked green and ill.I hardly recognised myself in the mirror my face was so gaunt.Luckily I have regained the weight so look better though I have aged.I do admire you for being able to travel long distance.I don’t think I could do it.I hope once I am a bit straighter at home that perhaps my partner and I can go away somewhere.I hope you enjoyed your holiday.Love Jane xx

I loved it thank you Jane! Just bliss. I was very nervous of the long journey but up it was trouble free. I do hope you will be able to get a trip away somewhere to relax after how busy you’ve had to be recently-you could really do with it.

Sarah xx

I’m so sorry that your husband can’t seem to accept his stoma Lonelygirl. That makes things even more difficult for you both. I think acceptance is critical to be able to move forward after this type of surgery. 

I wasn’t given any choice in where my 2 stomas were sited-there’s only a limited range of possibilities, but the stoma nurse did have a discussion with me pre surgery to mark the probable sites, taking into account what I would typically be wearing, and my general shape etc. I had 3 different surgeons working on me, and woke up to the bags being where I expected. I don’t find they interfere with anything I wear now, which is the same as I wore before. I think I accepted them very quickly, since the alternative for me was dying. I always say they are life saving but oh my goodness they are life changing. 

However, I was also determined that the wouldn’t rule my life and dictate what I could or couldn’t do. I travel and swim-I’m just back from the Maldives where I swam in the sea and in our villa pool, and have more trips abroad booked this year. It’s daunting travelling, especially long haul, but I was fine and was glad I bit the bullet as it were-I’d previously only been as far as Majorca and the Canaries post surgery.

Does your husband use social media at all? There are lots of good, private, groups on Facebook for example for people with one or more stomas, and you are talking to strangers, but it might help?There is also the Urostomy association, and lots of support groups available. I understand it seems very difficult for him to talk, but without talking it will be so difficult to move past all these issues and move forward. The stoma is permanent, so it would be so good to have some acceptance of it, especially when you are saying you’re not fazed by it. Rejection feels so hurtful, I know that, and yet I’m the one doing it in my own relationship because my partner isn’t at all fazed even with two bags! 

Sarah xx

You deserved a lovely holiday after all you have gone through.I’m glad you had a good time.I last went away in 1994 but had some neurological problems and had to come home early.I went to Northern Ireland in 2000 but I was helping to clear out a house so only had one day off out of 10.I’ll get there eventually.I’m still wading through all of mum’s stuff.Love Jane xx

Thank You Sarah. It sounds as if you have a healthier response to your stomas. There was no discussion about clothing etc with my husband. He was just told “this is where it will be” and then when it came to wearing proper clothing again he had a bit of a shock once he realised the bag would not be covered and no shirts can be tucked in which means he feels he can never look smart ever again. I think it’s a bit more challenging with mens clothing. The only way to tuck a shirt in would be to wear those awful old fashioned high waisted trousers which would make him feel even worse about his image. He’s worried about swimming and how it would be possible. Again he would have to buy high waisted swim shorts. He’s having lots of problems at the moment with allergy to the bags he’s using so very sore, inflamed and itchy and the bags aren’t sticking well to the sore skin so lots of leaks. It’s a lot for him to be dealing with on top of the depression he suffers. xx

Thank You Jane, 

I make fabric covers for his bag so that it’s not on show (otherwise he really wouldn’t have any confidence at all) and can blend in a bit more with his clothing. It was upsetting for him after the op because he’d thought his clothes would cover the bag. I feel like he could have been prepared much more for the outcome. But again, they don’t seem to be thinking of peoples emotional responses to the changes.

He found one support group but they were alll colostomy patients so the challenges are very different. It would be great for him if he could meet others in same situation and go swimming with them! That would be a confidence boost. There aren’t any groups in our area but also they all seem to meet on weekday mornings and he works full time.

he’s having a lot of problems with allergy to the adhesive so has very sore itchy inflamed skin and the bags won’t stick well to it now which is resulting in lots of leaks. This is getting him down too.

I’m so glad you found a good support group and hope the activities resume again soon post Covid. 

I think social things can often be harder for men..they seem to not open up about things as easily as we do. Particularly my husband who doesn’t socialise with anyone outside of work and family. 

Thsnk you for being an encouragement sharing your story.

xx

Hi Lonelygirl,That is bad that your husband wasn’t made aware that clothes don’t cover the bag.I usually wear trousers but just less than half my stoma bag is visible.My stoma is level with my navel.I hope some of the men here with stomas will offer some advice on clothing.I’m sorry your husband has an allergy to the bags.Is he getting help from the stoma nurses ? Leaks and itchy skin would be depressing.Fingers crossed that this can be resolved with a different bag.Love Jane xx