Just joined this group.

Hi Latestart and welcome

I’ve noticed your previous posts and I hope you’re glad you’ve finally joined us. 

It’s good to hear you’ve been managing well, but if you’ve got anything you’d like to ask, please feel free. We try to share things in the group which have helped us along the way, and hopefully others find the tips and advice useful! Maybe you’ll be able to tell us things which you’ve found useful too? 

Sarah xx

Hi Sarah

Yes I am very glad to have joined though still find the site confusing sometimes.

Actually I am having a slight problem recently though this may be rather technical. 

I have a urostomy and my stoma is an 'innie'  where the entrance is in a dip in the stomach hence the need for a convex bag plus a cera ring. They normally work well and the edge of the stoma has even begun to stand up a little into the bag. But, now, after a few hours the ring has started to absorb urine and to expand over one side of the stoma so the opening gets smaller. It doesn't usually leak outside the bag except for a bit into the flange.

I have put on a few kilos and thought it might be that and as well as eating less may just make the bag opening a bit bigger temporarily and see what happens as well as changing it every 1.5 days instead of 2.

But there is also another potential cause. I've just restarted Pilates as I have bone problems and before the stoma I did it all the time to keep me mobile. I did a lot less while having chemo and since the op  but have been having terrible cramp and am less fit so have gently restarted it to strengthen my core muscles and pelvic floor. I am still quite weak so not doing much loading but while exercising my stomach will be moving so perhaps the bag is not so tight.

There is a lady who has a colostomy and is a Pilates expert and I have talked to her. She is very good, but is there anyone here (especially with a urostomy) who does Pilates who has any ideas? I'd be grateful to hear from you.

Thanks,

Latestart xx

Hi Latestart 

I can’t help with the Pilates as exercise isn’t possible for me now, but I can identify with the stoma issue you talk about.

You are actually the first person I have encountered here in the group with an “innie” and my urostomy is  recessed into my tummy, rather than protruding outwards.  When I started to regain weight (I lost 50lbs after my surgery) I started to have issues with my bag leaking. I tried using a cera ring, and stoma paste to “fill in” the gaps at each end of my stoma but found the paste messy and the ring ineffective. I stopped using both. 

I changed, on the advice of my stoma nurse, to a convex bag, and she also suggested using extra adhesion before putting my bag on and flange extenders around the bag.

So I started to use Independence fusion applicators which are a little lollipop stick with extra adhesive which I gently wipe on the skin around my stoma before attaching the bag. Once the bag is securely on, I use Brava elastic Strips, where each one goes round the bag to form a circle, attaching securely to the skin. These products have worked extremely well for me and removed the issue I had with the cera rings absorbing the urine and expanding. I also make sure that the hole in my bag is the correct size and covering the stoma properly. For a long time now I’ve been able to have my bags pre cut by my supply company as my stoma seems to have settled to the size it’s going to stay at. 

I also don’t normally leave my bag on for 2 days-not that it leaks, but I prefer to change it daily to be able to clean my skin properly and I find that leaving it too long can feel uncomfortable and make my skin itchy. 

It may be that your Pilates is having an effect but I’ve not done Pilates for a long time-I’m not able to get on and off the floor, nor do the movements required nowadays. It’s a pity as it’s great exercise! However, ou may find that making sure the hole in the bag is exactly right, especially if you have gained a little weight, along with trying some different products might be helpful. 

Sarah xx

Dear Sarah,

Glad to meet a fellow 'innie'! Thank you for your very detailed and useful reply. I haven't heard of the lollipops so will investigate. My bags are precut too but I will try a little home tailoring if things don't improve.

I am allergic to some adhesives and products. After surgery it was fine as they got me into products that I didn’t react to but my local stoma nurse changed me to her company's products without a patch test and I had a terrible reaction. Which lasted even after I changed back. Since then I have learnt my lesson and have had to use  hydrocortisone lotion or calamine lotion to control it and try to stop irritations coming back. Changing more often might help though the nurse says it can do the opposite if the skin feels it's being fiddled with too often. We'll see.

On pilates, yes it is great and without it I would be much less active even though I walk every day up and down steep gradients before breakfast.

Have you heard of chair Pilates (or yoga)? I have been thinking of trying that too - I first saw it on Instagram - there are apps apparently and it seems to be very popular with older or less mobile people. At any rate they claim great benefits from it. I take most of that with a pinch of salt but extra movement is bound to help at least a bit physically and with mood. And I intend to get back to matwork and later on to reformer if possible. I used to do that with other older people as one doesn't have to lie on the floor - the reformer is about the height of a lowish bed off the floor. 

Thank you again.

Best wishes,

Latestart

Hi Latestart 

I appreciate that the stoma nurses will typically go for products from their own supply company, but I have found it possible in the past to make changes-for example I didn’t stay with the company with which my stoma nurse was affiliated, and indeed have changed supply companies 3 times in my years of dealing with stomas.

However, regardless of the supply company, they are able to source a huge range of different products, and in your case with your allergic reaction I would be looking to try any of the hypoallergenic products out there which might help you. I am a big fan of calamine lotion to soothe my skin, but I’ve never had an actual allergic reaction. I’m not sure why this hasn’t been suggested to you by your nurse. 

Sometimes you just need to do things which suit you best-I’ve never been told that changing a bag more often might be an issue with the skin, but we are all different! 

Thank you for your suggestion of chair Pilates/yoga-I’ll certainly look into that and see if it could be helpful.

Sarah xx

Hi Sarah,

Just a quick follow-up re stoma and Pilates. I've improved things by making the hole in the cera ring exactly the same size as the one in the stoma and the inner leaks have stopped. Hooray! My skin has gone from red to pink.

Plus I've found I can restart Pilates safely  and that helps a lot. And, while searching online I found that the NHS has a site for chair pilates, which looks a good start and trustable. I wonder if you might find it possible (and enjoyable)?

All the best,

Latestart xx

That’s really good news Latestart and a boost for your skin. 

Thank you for the Pilates advice: I will have a look for this-the NHS sites are trustworthy, so I’ll give this a go and see how I get on, if I can manage it.

Sarah xx