Ileostomy and stoma bag advice

Hello all,

I am looking for some advice on the type of bags that I use at the moment. After a long journey to be diagnosed with bowel cancer, I had a ileostomy performed on the 14th of May. My bowel was not blocked however, my medical team deemed surgery to be out of the option at the moment and the surgeons felt this was an appropriate solution so I could start chemotherapy and not have any issues if my bowel was to block during treatment. I have come to grips with myself care pretty easily and was all good in the first few weeks. I have been using the flat SALTS bags that my stoma nurses suggested. However I have recently had some issues with leaking, now that my stoma as healed and they maily happen at night time due to pancaking... I have tried blowing he bags, adding oils, etc...and the nurses also suggested stoma paste as I have a little dip underneath my stoma which is where most of the leaks occur. I have tried the SALTS soft convex bags and they so seem better so I am thinking of changing my perscription to these, but looking to see what other people's experiences are with these? Looking for any recommendations or advise/experience with the SALTS soft convex bags. Thank you in advance x

  • Hello tryingtobebravemummy, I had an ileostomy for a year and also used Salts bags which I found good. I was offered the convex but they didn't suit my hernia. I also had a little dip on one side of the stoma and I found using the seals that you can stretch and fit around the stoma useful. The ones I used were by Coloplast and they had two thicknesses. I used the 2.5mm.

    I understand that the idea of the convex is to give extra pressure around the stoma, especially useful for people whose stomas don't stick out very far. If they work for you then I would change the prescription and see how you get on but also worth thinking about the seals.

    Hope you get it sorted ok, Cheers John

  • Hello tryingtobeabrave mummy,

    I had surgery with a temporary ileostomy in January this year, and didn’t have any problems with leakage until 2 months later and then had a number of leaks, not always but quite often at night. I was using Sensura Mio Light Convex 1 piece open bags together with a belt, I haven’t used SALTS soft convex bags.

    My stoma nurses unfortunately weren’t a lot of help and I was left pretty much to sort out the problem myself, so asked for advice on this forum as I was at my wits end with all the leaks. John (crankshaft) whose also replied to you, suggested using seals/rings. (Interestingly my stoma nurses said they wouldn’t suggest using these seals/rings as they would compromise the convex.) However, I started using them with the Mio Convex bags and have not had any leaks in the 3 months since - (apart from one leak after the stoma nurse changed the bag at a review appointment!)).

    The seals I’m using are Salts Aloe Rings (REF:SAR25), they are quite thin only 1.8mm and the hole is 25mm.

    This is the link to the original chat/question which gives a bit more info:
    community.macmillan.org.uk/.../been-lurking

    Hope this is of some help and you get the leaks sorted, it’s so demoralising and frustrating when leaks happen.

    Best wishes,
    Net77

  • Hi tryingtobeabravemummy

    I've got a temporary ileostomy. I'm using Nova easifold maxi bags with Eakin cohesive stoma wraps.  I haven't used any others. These are great, they can be layered if needed which would help with any dips. Also using Brava elastic tape XL, these are fantastic. I now have the pleasure of a hernia and when my bag is on, two of the sides only have 5mms to stick on the skin. The elastic tape is crescent shaped. I use two that cover all the edges of the bag. I was having leakages especially at night or as I got up in the morning, the bag would come away. You can also get waterproof bed pads from the stoma supply company added to your prescription. Maybe the hospital could give you a few different bags/seals to try before you change your prescription. 

    Cheryl x

  • Hello crankshaft, thank you for the advice. I will look into the seals as well, anything the helps really. Cheers :-)

  • Hi Net77, thank you for your reply and advice. My stoma nurses have been ok and given me different advice at they gave me samples of the SALTS soft convex bags to try and I did find the better than the flat ones. They had already ordered my repeat perscription for the flat ones when  I started having issues and I had just received it, so I will get them to change my next one because I think the type of bag makes a huge difference. It just started recently and it is very frustrating and demoralising like you say and really knocks your confidence down tbh so I will get it sorted with or without their help as I am not willing to let this stopping me enjoyng doing things and living my life normally for fear of having a leaky bag everytime I go out. I will have a look at the Salts Aloe Rings. Thank you :-)

  • Hi Chalet, thanks for your reply. They did give me stoma paste and other things to try as well, but I have found the I have had far less issues with the convex bags I mentioned. Like you these leaks happen mainly at night which is quite frustrating. Its good to have other options so thank you for your advice on the ones you are using, I will keep it in mind if my issues continue repeating with the convex bags. Did you get your for your stoma nurses or did you source them yourself? Not sure if different hospitals use different types/brands? thank you x

  • The stoma nurses gave me the bags initially and sorted the prescription out for supplies. These are the first bags I've used. The stoma wraps I use are an oval shape with a gap that stick on the skin then the bag goes on top. The stoma nurse told me about the bed mats which are complimentary from Fittleworths. Not sure if different trusts use different suppliers. I don't think I've had any leaks at night since using the tape. My stoma nurse called them flange extenders, always makes me smile. She gave me a box at the hospital and then had them added to my prescription. I think the nurses have to alter any prescriptions. There are various products on Amazon, if you want to get something quickly although I'm sure your stoma suppliers can do extra deliveries.

    Cheryl x

  • Hi Chalet, yes the stoma nurses sort it all out. I did find the flange extenders :-) on amazon... I will see how I get on with the bags I mentioned first as they agreed with me when I explained the situation, if I am still finding issues I will try the flange extenders also. Thank you for the heads up about the bed mats as well, I didn't even know they did them.. this is a whole new world I find myself in (as with all of us) so it will be very much trial and error :-) Thanks for all the advice, I really appreciate it and its great to know I am not alone in having these issues and how I feel about it. Take care. Rita x

  • Hi again, I forgot about the flange extenders, I used them to good effect on occasions when I needed the extra confidence. Worth having them in the tool kit!

    Cheers, John

  • Hi. I think the hospital trusts use different suppliers. Darlingtin Memorial Hospital, where I am looked after (superbly), put me with Securicare. If you go on their site you can order samples of any sort of pouches and care products that you can try to see what suits you. I think all the stoma care companies will offer this service. I've taken advantage of this a few times, then if I like a product I contact my surgery to get it added to my prescription. It really is trial and error at the beginning. All of the flanges on the Welland Medical pouches from Securicare are made using Manuka honey and are really gentle on your skin.

    Take care 

    Kim

    Blackstuff