Hi im new here, my mum has stage 4 bowel cancer and has just had two surgerys in a 5 week period and now has two stomas very close together on her right hand side.
The nurses seem to be having difficulty getting the bags to seal properly (because of close location). Has anyone else had this problem or have any tips ?
Thank you in advance.
Hi DEF and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I can't help with your question but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where hopefully it'll be more easily seen.
While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi DEF and welcome.
I’m sorry to hear of your mum’s difficulties, but these can unfortunately be very common so soon after surgery. Could you share what types of stomas your mum has to see if we can help?
I have 2 stomas, urostomy and permanent colostomy, but these are placed on either side of my belly button so I’m not faced with the same issues in terms of the bags being difficult to stick. It may depend on the products your mum is using, and the fact that the stomas can take several weeks to “settle” as there will be swelling after the surgeries, and healing to be done. As this happens the stomas will change size, and it may be possible to use different products as this process goes on, which could help.
I do have a friend who has 2 stomas on the same side, one above the other so I will ask her if she has any advice she could offer on what was helpful.
I presume that the nurses are ensuring that the skin around the stomas is scrupulously clean and dry before attempting to attach the bags? It can also help to warm the bags before applying them as this will help with adhesion. You can do this by placing them on a radiator, or lightly heating with a hairdryer on a low setting. There are also extra adhesives you can use to coat the skin before application and extra adhesive strips which can be placed around the bags. I use both of these as a way of ensuring a good stick.
Is your mum having issues with leakage from either stoma if the bags are not well stuck? This can make the skin red and sore, so it’s important that this is treated if it’s happening. It may be a case of the nurses trying different products-there are so many available and you can try as many as you want to in order to find something suitable.
Sarah xx
Hi DEF
It’s good to hear from you again, and thank you for clarifying the stoma types. I can understand it’s been a whirlwind for you all with this happening so quickly. I need to start by saying I have no experience at all of a jejunostomy and actually don’t know of anyone who has one, but I understand it may have a very high output?
I have messaged my friend with 2 stomas one above the other to see if she has any advice, but hers are a urostomy and a colostomy. It may be that she could offer some tips on the practicalities of getting the bags to stick however. She is in America, so I am awaiting a reply.
It terms of sourcing supplies, I’m wondering if currently all your supplies are being provided by the stoma nurses? What will happen is that the NHS doesn’t provide supplies, these are supplied by stoma supply companies who source them from stoma supply manufacturers. So in theory you should be able to access any products which are available in the UK so long as the gp authorises the request.
There are different supply companies, and the stoma nurses in the community are affiliated to a particular company. The reality is that you can change the supply company you use for any reason. In fact in the 3 years I’ve had stomas I’ve used 3 different companies. They can all source the same products, but I had some issues in the past with delayed orders or poor service. I’m very happy with the company I now use.
It’s quite difficult at the start of all this to understand how the process works, but typically you will order supplies on a monthly basis via a prescription signed off by your gp. Everything provided is free.
The stoma supply company, in my own experience, will take your order over the phone or by email and will send a prescription request electronically to your mum’s surgery for the doctor to sign off. Once this has been done the supplies will be sent to your home. Mine are delivered by DPD, who text me to tell me when they will arrive.
Examples of suppliers include Fittleworths, Charter, Bullens, Respond, but there are many out there you can find on an internet search.
The manufacturers of stoma supplies include companies such as Coloplast, CliniMed, Trio, Hollister, Salts but again there are many of them.
You can phone any of these companies and talk to someone for advice on any of their products which may be suitable and ask them for samples to try. I’ve done this many times to try out different products and things which are new on the market.
A supply company is not limited to providing products from one particular manufacturer. For example I use a mix of products made by Hollister, Coloplast and Salts once I identified the products which suited me best, which can be a bit of trial and error.
I don’t have any restriction, within reason, on what I can order, though I’m aware some people do. If I want to have a regular supply of something new, I will request it is added to my prescription and so far have had no issues doing this,
I have tried the drying powder but didn’t find it helpful as it made things too sticky on my skin for the bags to stick. I much prefer, if I have an issue, to wipe calomine lotion on a cotton pad gently around the stoma and dry gently with a hairdryer. This clears sore and red skin very quickly and successfully.
For extra adhesion I use a product called Independence Fusion Applicators, which are like little lollipop sticks which you wipe over the skin around the stoma. These were a game changer for me. I also use Brava Elastic Strips, which stick around my bag to give extra help in keeping it on.
I’m presuming that your mum will use drainable bags since she has high output stomas? These can be emptied rather than constantly changed, so are more convenient, and helpful for skin soreness, and you can get different types of bags-two piece systems and convex or flat bags. Have the stoma nurses tried any other products to see if they work better than what is currently being used?
Gosh, this has turned into a very long post-my apologies. It can be an awful lot to take in when you first have stomas and no-one explained the process to me when I had my surgery so I was very stressed and confused at the start!
If anything has been unclear, please just ask and I will try to explain further. Any other questions, I will do my best to help on the basis of my own experiences. It’s lovely to hear your mum is doing well after her surgeries-these are major things for the body to cope with and there is a lot of healing to be done. She is lucky to have a daughter who is being so proactive in trying to find solutions for her too. I will come back to you when I hear back from my friend if she has any useful advice to share.
Sarah xx
Hi Sarah,
once again I cant you enough for your amazing advice and very kind support, sorry for my slow reply as things are hectic. as im sure you know.
Mum is out of hospital now and adjusting to life at home with two stomas, the jejunostomy is still high output as she has a short bowel, the bottom one is outputing much less.
We are slowly getting to grips with what works and what does not, but have yet to try all the gadgets and fittings out there, I really want to get the Independance fusion applicator, it seems very useful and like you said a game changer. your explaination of the ordering systems was very useful as well thank you.
Im so grateful to these fourms for sharing thier experiences, because for people that are new to this its all its beyond invaluable.!
Did you ever hear back from your friend in the US that had two stomas ?
Def 
Hi again DEF and good to hear from you again.
I completely understand how hectic life will be, but I’m sure your mum will be glad to be home- there’s nothing like your own bed and familiar surroundings. I’ve just had an 8 night stay in hospital where sleep was minimal due to all the noise and interruptions during the night so was also glad to get home!
Yes, I have heard back from my friend in the USA. She tells me she has a 3 inch space between her stomas and also had difficulty with fitting the bags. She tried many different products to find ones she could work with and has settled on products called Sensura Mio which are made by Coloplast. I did try these myself when I first had stomas and found them pretty good.
She cuts the holes in the bags herself, and is able to cut a hole lower down in the bag to get it to work for her upper stoma. She also uses the strips to put around the bags to help them stay on.
A good suggestion she had was to take a photograph of your mum’s stomas and then call the supply company to speak to an expert to discuss what might work best. She provided photographs of her set up and they were able to suggest different options. She did have to experiment with many different types to come to something which works for her now.
I really hope your mum can get to a place where the bags are working successfully to make life easier for her. I have more hospital visits required for a procedure and potentially more surgery, so I may not be able to be around as much as normal but will try to answer any of your questions when I can.
Sarah xx
