Urostomy stoma issues

Hi Nick001 and welcome to our group

I’m sorry to read of your difficulties, and these early days after surgery can be very challenging. I did understand completely the situation you are describing.

I have a urostomy which doesn’t have a “spout” which extends outwards from my body. I remember when the stoma nurse came to my house to visit after my surgery, she wasn’t impressed and didn’t think it had been done very well!

So, my stoma is crescent shaped, not round, and effectively goes in the way, like an innie bellybutton rather than an outie. This means, especially when I am lying down, that the urine pools at the hole at the end of the stoma before then “spilling out”onto my skin and into the bag. 

I also have a colostomy which is round in shape but it completely flat and level with my body, so again nothing which extends outwards from my body. They are similar but very different. 

Have you tried using a protective ring around the stoma before the bag goes on? I used to use aloe Vera rings which fitted snugly round the “hole” and did help with protecting my skin. I see you are already using a convex pouch which is something I changed to on advice from the nurse which also helps, but in those weeks after surgery I had a lot of leaks, and could never go even as long as 24 hours without changing.

I’ve had my stomas for more than 4 years and things are definitely better with the urostomy now with a leak being very rare, and the time between changes being longer. The flange extenders you are using are brilliant at giving you a bit longer timewise, and have you tried a product called Independence Fusion Applicators? These are little lollipop style sticks impregnated with adhesive which you rub round on your skin around the stoma prior to putting the bag on. 

These were a game changer for me along with the flange extenders which I use on either side of the bag. I would say however, maybe not to have unrealistic expectations about how long the bag could be on without leaking. You do come to be able in time to judge things yourself, but in those early weeks I would have been delighted to have a bag last for 24 hours before leaking! I just changed every day at my shower time en if it hadn’t leaked.

I have a friend who had a surgical revision of her urostomy and that was by no means straightforward-it was a major surgery for her, although not in the UK, taking many hours-so I can understand why it’s rarely done. 

So in summary, what’s worked for me is the convex bag, 2 flange extenders and the fusion applicators, and regular bag changes. I no longer need the aloe Vera rings. 

Sarah xx

Hi Sarah

Thank you for the reply, sounds like you had a very similar dilema!

We did try the ring seals in the first few weeks without much success, I felt that the ring sort of pushed away the adhesive element of the baseplate a little bit thereby eliminating any gains. The Fusion Applicator certainly sounds like something that could help, it's not something the Stoma team have mentioned but I will be doing some research and will mention it to them next week,

After reading your profile I take my hat off to you and your resilience, I feel I am making a quick, strong recovery and my small leak issues are a minor bump in the process.

Thanks again for the tips, I will let you know how I get on.

Regards

Nick

Hi Nick001 

Yes, it seems we did have similar experiences, and I’ve not heard the same from anyone else about a urostomy so it’s good to chat.

I wasn’t a big fan of the rings but was basically trying anything the nurse recommended.  I too felt it hindered the adhesion though it helped with my skin damage.

The applicators use a mixture of barrier and adhesive and for me make the adhesive power overall much better so the bags stick better and for longer. They are very powerful though, so removing the bag can be a challenge! However, I get a lot of confidence using them. 

My stoma nurse recommended them, and I’ve used them now probably for more than 2 years. If your stoma nurse can’t get you some to try, free samples are available to order online. I wouldn’t be without them now, and I found myself trying so many things post surgery in those early weeks and months till I discovered these. Give it a go if you can, and see if it helps! 

Sarah xx

Hi Sarah, I have requested a sample from Independence, fingers crossed it gives me that bit extra! I will keep you posted.

Regards

Nick

Look forward to hearing how you get on. A small tip…never hold the end of the applicator in your mouth as you get something else or you might stick your lips together! Not that I ever did that of course…

Sarah xx

Hello Sarah,

Quite agree. Although I have a loop ileostomy and a colostomy the former can hold more or less pure liquid at times, so the leak pattern is perhaps similar. The Fusion stick and a pair of XL elastic tapes create an excellent seal provided that the harder plastic inner ring of the pouch is pressed firmly into place and the flange is evenly pressed, working away from the centre. The skin needs to be dry and free from soap, moisturisers and the like before application and men need to be aware of body hair causing a leakage path which can accelerate the problem.

There are so many stoma products available that there has to be a solution to Nick001's problem. Once solved, the restoration of one's confidence is priceless!

Dulac

I’m afraid I can’t help with the stoma issues but would really welcome your feedback on the bladder removal. My dad has to have his bladder and kidney removed in a couple of weeks and I want him to be prepared as possible ahead of that. Sharing, the good and bad would be very helpful. He is 70 years old and I worry the recovery will be long and hard! Thank you 

Yes, I am a big fan of the strips and the applicators! I agree with you in terms of making sure the inner ring is firmly pressed and then working out from the centre. Paying extra attention to those points really pays dividends I have found, and these products improved my confidence no end with my urostomy. 

There will be a solution to Nicks problems I’m sure, but leaks can be so disheartening when they are frequent. Hopefully we will hear a positive report back on the thread!

Sarah xx

Hi BlaKidRem24  and welcome to our group.

The best thing your dad can do is try and make sure, if he can, that he is in the best possible physical shape for his surgery. I know from my own experience this can be hard to achieve. It is  difficult beyond that to say what’s the best way to prepare as this is major surgery.

I should warn you that recovery will take time, and is not always easy or linear. By that I mean there are good and bad days going along after surgery, so it’s important not to expect a simple and quick recovery to this surgery. 

Tiredness is a major and understandable factor, so it’s important to get a lot of rest afterwards-the body has a lot of healing to do. My father in law had bladder and prostate removal last September and has lost a lot of weight and still gets easily tired. He is a few years older than your dad. 

Does your dad have support at home when is discharged, as that would be really important. He will likely need a lot of help in the early days.

Please feel free to ask any questions in the group and we will do our best to help. I am a little younger than your dad, but my surgery was more than 4 years ago and I have done well afterwards. I do still get tired easily, but that’s a small price to pay for me. I found I accepted my stomas-I have 2- very quickly and soon learned to manage them. 

Sarah xx

Hi, sorry to hear about your dad, my situation was not as severe, I recently had my bladder and prostate removed along with lymph nodes and a few other stuff old men don't need any more. I am 65, my hospital recovery was as good as could be expected, still felt like I had been hit by a bus after surgery but I was discharged after 5 days. I am fairly fit for my age so that helped and hopefully your dad is too. The procedure was done robotically which has so many benefits, hopefully your dad will have a similar procedure, I am 8 weeks post op, cannot claim to be back to normal and never will be having to deal with a stoma and all that comes with it but I am now back to doing things such as gardening, cleaning the car, daily outings etc. I am planning on returning to the golf course in the next couple of weeks, all with the blessing of the surgeon.There will be weird stuff going on after the surgery, bleeds, leaks, sometimes from unexpected places, and endless follow up appointments but it does come to an end eventually.The stoma nurses are there 24/7 with help so there is always someone to talk to. I wish your dad well and hopefully he has a speedy recovery. I hope this helps and please get back to me if you would like any more info.

Regards

Nick