Colostomy already now need Urostomy

nicky_noonah

Hi and welcome to the stoma support group and I'm pleased to see that your partner has mastered his colostomy and is quite comfortable in wearing his bag but I am sorry that he is about to become a double bagger when his Urostomy has been formed. We do have many members of the group who live with two bags and manage their day to day lives without too much of a problem. Unfortunately having a Urostomy is slightly different to the other ostomies in as much that there is a need to have 2 types of bags, 1 for day and 1 for night and travelling. Also I believe that having two bags can cause problems with getting comfortable in bed and this is where I hope that others will join in the conversation and give lots of advice and tips, I'll keep monitoring the thread to ensure that it remains near the top of the posts so we can get as much help as we can for you. You may be interested in a thread that's been running for about 3 years and might give both you and your partner an insight into having two stomas

Anyone with 2 stomas

Hopefully your post will encourage some of the members to jump in with some advice.

I also have this on file and I thought it might be of interest to you.

Urostomy top tips by the Urostomy Association

As I understand it having a Urostomy involves the need for two types of bags 1 for day wear and the other for night wear and travelling. Making sure you have suitable pouches that will be compatible with your partner's skin and could mean experimenting with different makes of pouches his stoma care nurse will be of a great help but all the manufacturers will gladly send samples of their pouches but he should also look at tubing systems and get the longest tube available for night wear, he should also look at the capacity of the bag and go for the largest especially for night wear.

Please keep in touch we have a wealth of knowledge between us and will only be too willing to share out stories and tips with you.

Ian

By clicking on any of the green text above will open up new pages for you.

LisaCardiff grafiti please can you add anything to the above, thanks Ian

Hi there my hubby had a pelvic exenteration last November.its a very major op and takes a long time to recover,but it got rid of all the cancer,and he is coping very well with the double bags.please ask me anything,and I will try to help.xx

Thank you. I think this is what Steve will be having we are meeting them again next week to go through it in detail and meeting with his stoma nurse who has been amazing and supportive the whole time. He’s a builder and a mans man and was back working after 2 months following the colostomy surgery. But the surgeons have told him this will be much longer recovery. How long for recovery did your husband take? He is so healthy apart from this cancer, he’s fit and a good weight and we’ve never had one problem with his colostomy, so hoping he will adjust to a urostomy as quickly. He is more bothered about losing his erection to be honest but they have said there is a chance that will come back when the nerves heal. 

Thank you for replying. X

Thank you Bodach. Really useful information. He has a great relationship with his Stoma nurse already and she has promised to get all the samples for us. He will be having surgery in a different hospital but she said as soon as he’s home she’ll be round whenever needed to make sure it’s all set up and working for him. 

Hiya.he is still recovering slowly.he was told he would lose all sexual functions,but we said it was a Small price to pay for getting a life, hopefully your Steve may not have to have as much removed.kev has been getting stronger each week and gets about with a walking stick. He reckons it's great not having to be up and down to the loo all the time, especially when we go to the pub! Lol. Xx

nicky_noonah

Hi Nicky

I always say that the ostomates new best friend is their Stoma Care Nurse and I'm pleased to see that Steve's one has already promised support, hopefully she will give you all her contact details that you can use, please remember we are here at the times you can't reach your stoma nurse and you might be surprised at the times we are on site.

Whilst she has agreed to obtain samples of appliances to try there is nothing to stop you contacting the manufacturers directly as there are new developments coming available daily. Quite happy to send you links to manufacturers if you want, just ask me 

I am pleased that mandajayne has already made contact on here she has been very supportive to others and I'm sure she will be on great help and support to you.

You've highlighted the subject that all males dread and don't talk free about and this of course is how our performance in the bedroom will be effected. As we all know that having a good relationship with our partners doesn't always mean that penetrative sex is the only option whilst things get back to normal we can explore other ways to satisfy each other.

Sexuality for me with cancer

This is a publication from the American Cancer Society and I hope it might have some interest to you.

We also have available an (Missing Group) page where you are very welcome to ask questions.

Nicky, do please keep coming back to us and keep us informed on Steve's progress we always like to hear how our friends are getting on.

Wish Steve all the best from me.

Ian

Hi Nicky 

My Dad has had a pelvic exenteration in September. He’s made a great recovery but he was fit and very active before he went in for his op which I think helps. He was playing golf the day before he went into hospital as he’s a keen golfer.

It is a long recovery and my Dad lost a lot of weight and didn’t eat much after it, he also had to have 12 sessions of mop up chemo which he did amazing all the way through and completed them all without to many problems, although he did loose his taste for a bit and he can’t feel the tips of his fingers and toes but that will gradually start to come back. Has your partner had to have chemo? 

My Dad was worried about the bags as he’s so active and it was very daunting the unknown and how he will cope but apart from a few issues he’s coped brilliantly and he’s been back playing his golf for a while now and back to everything he did before. He used to do rallying to and they said he can go back to that.

Your partner already has a colostomy and copes fine so I’m sure he will cope ok with the urostomy it’s just getting used to it but you can lead a “normal” life, my Dad has been on planes and boats since and it’s all been fine. We are all off to Portugal in August to. I think it’s all the unknown. 

Its so good on here so many people helped me especially Ian and any question was not silly.  

 It’s such a massive operation to go through and it is life changing but it’s ment to be a cure and you can lead a normal life after. Good luck and any questions just ask or can private message me.. Danni x 

Thank you for sharing your story. I’m so glad your dad has recovered well. I have every faith that Steve will, he is fit and healthy apart from this. Yes he’s had chemo already and radiotherapy and again he was fine with it all. He got the tingling in his fingers and feet but other than that was fine. He’s a really positive person and I can’t believe how strong and brave he is, although he says it’s a lot down to me and my support. We just need to get him through this and then we can focus on recovery and living life again. Thank you again for commenting. Have a lovely holiday x

Hi Nicky,

It seems like your partner is on the exact same journey I travelled in 2018. I had a TPE in October 2018 for exactly the same reason. I initially had loop colostomy in early 2018 prior to chemo/radio. 

I am busy building a summer house in the garden at the moment (9 months after the op) so hopefully that will give him some confidence he can get through the procedure and recovery. But!!!! he will feel very exhausted for several months after the operation. My surgeon said, that every day my body is having to effectively run a marathon whilst it busies itself repairing things in the aftermath of the surgery.

It is a big operation( mine was around 10 hours)  and it will take time to recover and he will certainly have to be careful lifting things as he will be prone to getting peristomal hernias if he over does it. He may look good on the outside and be mobile, but internally it will be a big car crash for at least 6 months! High possibility of internal collection build up which I had and which probably slowed my recovery by a couple of months.

The urostomy is quite easy to live and cope with. Upside is that he can connect it to a night bag and no worries about waking up in the middle of the night busting to go to the loo ( as I often found in my pre-urostomy life-time). Just be sure to drink lots of clear fluids to keep this flushing through to avoid UTI's). Need to be hygienic replacing the bags and do so often. Also empty them frequently. He can also attach a leg bag to them for more capacity if it is not convenient to get to a loo to empty the bag.

Message me direct if you want further advice and other affects from the operation.

I am happy I elected to follow my surgeons advice and have a TPE and I now have a good life expectancy and cancer free. It also transpired that the post-op histology found that I had early stage prostate cancer ( not a secondary rectal) so that also reaffirmed that the TPE was best for me.

Hi Nicky 

No problem at all. Yes I believe if your strong and have a positive attitude it all helps with your recovery so am sure Steve will be fine and yes to go through all this you have to be so brave I felt exactly the same about my Dad I couldn’t believe how brave he was going through as I found it so hard and I struggled so much as it’s horrible to see someone you love go through it but my Dad is back to doing all his normal stuff now. Your support will of definitely helped Steve also. Yes looking forward to a holiday now so thank you. Do you know when Steve’s op will be? xx