Hi all. I'm just over 2 weeks out of stoma surgery, in prep for bowel cancer treatment. So many questions! And very glad to have been pointed towards the Macmillan forums :)
I had a loop ileostomy a few years ago prior to chemoradiotherapy followed by surgery. It relieved concerns about diarrhoea many times each day. It worked so well I decided to keep it and certainly isn't all doom and gloom once a stoma care routine is established.
Hi Dulac and thank you for replying. Mine's a loop colostomy and from what I can tell from the consultants, it's pretty much going to be permanent once chemoradiotherapy and any follow up surgery is done - so the 'not all doom and gloom' message is very good to hear :)
Our biggest fear is probably leakage in a public place. However, there is such a wide range of stoma related products on the market that a solution can be found and confidence fully restored. It might take a few trials with alternative suppliers but a solution will be found and you then adopt a routine for stoma care. I have two stomas and it takes about 10 minutes every 48 hours to change them. Take your time to start with and you will soon get the hang of it.
Leaks! I have new nightmare material! At the moment, the output isn't much but is on a "Ha, you didn't see that coming, did you!" schedule! Fortunately, I can often tell when it's working - though it feels very strange and sometimes borderline painful. I change in the morning, and last thing at night - each change prob takes me 15 mins or so cos I'm worried about cleanliness and particularly about not 'catching' the edges of the stoma. Good info about the range of products - thank you :) At the mo, I'm sort of just going with what the stoma nurse says but after next week's visit, I get the impression there's no more home visits unless there's an issue. They're at the end of the phone, ofcourse, but I'm going to have to do a bit of exploring myself.
Sounds like you getting along well with the stoma. If it helps at all - I've never had a leak with my colostomy. With my (temporary) illeostomies I had leaks and that was far more challenging. (The output with a colostomy is a lot thicker so that helps a lot).
Dulac makes a great point on the wide range of stoma products on the market. Besides getting different products from your stoma nurse also remember the companies (like Coloplast, Clinimed etc etc) all have websites that you can request samples from directly. I found myself a stylish black stoma bag ;-) I then asked my stoma nurse to load that onto my prescription.
Sounds like you going to have treatment - a small tip, I find when I'm on chemo my skin gets more fragile, and can get red around the stoma. But totally solvable problem - a barrier ring before putting the bag on works a charm and sorts that out, happy skin.
I've not heard barrier rings mentioned - do they go on the skin around the stoma before the adhesive ring/bag goes on? I'm hoping that I'll get advice re stoma and radiotherapy and then chemo from stoma nurses and cancer team - fingers crossed. I've no doubt I'll be back on the forum asking for guidance too :) I hope your treatment is going well :) x
