Today, what will be my last order of stoma supplies (hopefully ever) has just been posted out to me. It's a bit of a landmark. To say I've been ordering these things, month in, month out, for 2 years now, it's going to be weird not to have to do it anymore!
Ordering stoma supplies has not always been trouble free. I'd actually say it's one of the biggest inconveniences of having a stoma. Over the past few years I've had my fair share of 'last minute' moments - including forgetting to order on time, the GP not signing through my prescription, and once even a dash to A&E because I actually ran out altogether (yes, I felt pretty shame-faced on that day). So I've put together a whole list of tips and advice that you might find useful when ordering your own!
So - you've just woken up from your operation, and now you've got a new stoma to take care of. In hospital, you're provided with all the equipment you need in pretty much everlasting quantities, but what happens when you leave?
When you've had stoma surgery, your hospital will assign you a stoma nurse. As well as teaching you how to change and deal with your new plumbing, he or she will also make arrangements for supplies to be delivered to you when you leave hospital. Your hospital will probably have a preferred 'brand' of stoma bags that they like to give to patients (more on brands in a moment), and that's the type of bag you'll wake up with. You'll get sent home with more bags the same as this.
Think of ostomy bags a bit like chocolate bars for a second (it's a stretch, I'll grant). Chocolate bars are made by lots of different companies: Nestle, Cadbury, Lindt etc.
Ostomy bags are much the same (unfortunately, that's pretty much where the similarities end, but never mind. Forget that weird comparison, it's late).
Lots of companies make their own 'brands' of bags. Just a few are: Coloplast, Pelican, Bullen, Convatec (and loads more). A bag's a bag, right? Well, you'd be wrong there. Bags from different companies can vary widely - in the material they're made of, their shape and their size.
You'll also get put in touch with a supplies delivery company, e.g. Charter Healthcare (the company I have always used). They don't actually make the bags, just deliver them. A company like Charter is usually able to deliver you bags from any brand that you choose.
Although you'll get sent home from hospital with one brand of bag, that doesn't mean you have to stick to it if you start having issues. Different brands cater for different ages, needs and body shapes. Now's your time to shop around. ALL of the major ostomy brands are willing to deliver samples to you absolutely FREE (yep, I said free) - just google their website and request samples (there's usually a form to fill out including type of stoma/address/op date). Try any bags you like. You've got this new stoma - you may as well treat it to some presents to welcome it into the world.
There's also a whole load of 'extras' out there to sample - you think of it, it probably exists somewhere. Paste and mouldable rings for extra security, one or two piece bags, little packets of gel that 'thicken' your output, special 'aloe vera' extender strips. Hell, there's even these cute little spray bottles that supposedly you spray into your bag and make it smell like peppermint and grapefruit. YES, these things do exist, and YES, I've sampled them.
If you actually like any of these items, you can add it to your monthly order. Stoma supplies, on average, are ordered once a month. A typical order (without any fancy extras) usually consists of:
- Stoma bags
- Adhesive remover spray
- Disposable bags
- Dry wipes
- Wet wipes
After this, extras can be added on if needed/desired.
As of late 2014, all stoma orders need to be signed off by a GP before the delivery company will send anything out. This is where it can get complicated, but this is how the system is MEANT to work:
1) You order the supplies you need for the month, 2 weeks in advance of when you will need them, either online or over the phone with your healthcare company. E.g. "Hello, I'd like to order 30 Coloplast medium sized bags, 2 bottles of adhesive remover etc"
2) Your job is now done! The healthcare company will fax your order through to your GP surgery.
3) The GP checks your order and signs it off. This can take up to 14 days. (after about 9 days, your healthcare company will start sending them casual reminders by fax) The surgery then faxes the signed prescription back to your healthcare company.
4) The healthcare company delivers the supplies to you by courier service.
If this works all to plan, you're good to go. However, some of the issues I've encountered over the years have been:
- You register with a new GP and because you're a new patient they forget to sign your prescription/don't register that this is something you need every month
- I've ordered less than 2 weeks in advance
To be fair, it's usually my fault and the latter. Saying that though, if you do make a mistake and forget to order, it is always worth ringing your healthcare company and pleading your case - more often than not, they are willing to send an emergency sample order to tide you over until the actual delivery comes through e.g. a couple of spare bags.
In the case of the first problem, I ordered well in advance, but the new GP I'd signed up to was actually really awful (I ended up transferring elsewhere) and just completely forgot to sign the prescription, despite multiple reminders both from me - getting gradually more tearful - and from Charter healthcare. (They also had this awful receptionist who used to shout out your personal medical details across the room - OH SO YOU USE A STOMA BAG DO YOU, WELL MY SON HAS A SKIN CONDITION AS WELL SO I UNDERSTAND EMBARRASSING DISEASES. In front of a queue of 7 people. No, really.)
Unfortunately, stoma supplies cannot be 'bought' from pharmacies - the only way to get them last minute is a visit to A&E, where you sit looking completely well and healthy and feeling pretty awkward.
To avoid this issue, make sure your new GP knows that this is an urgent thing. Write a letter. Phone call. Even make an appointment and talk it through in person.
So, how much is an 'acceptable' amount to order? In the first couple of months after your surgery, your GP will probably allow you to order more supplies/order more frequently, allowing for mistakes and changing your bag more regularly. After about 3 months, though, they'll expecting you to be ordering one lot per month, and a reasonable amount of supplies (so not excessive). If the GP thinks you're ordering too many things, they will knock things off your order (usually without telling you) before putting the prescription through.
Quite often, if they do this, you probably don't need whatever it is they've taken off - but if you're really worrying and you're adamant that it's something you need, the best place to go is back to your stoma nurse. Explain that your order is getting refused, and tell your nurse why you need that amount of that particular item. If you have a legitimate reason, then the stoma nurse is able to get in touch with your GP, explain, and the prescription will most likely be accepted in future.
Don't worry about running out of bags. Delivery companies deal with this sort of thing all the time, and can be really helpful in sorting out issues. If you're ever really desperate, they will not refuse to send you emergency stock. A good delivery company understands just how sensitive an issue supplies can be - and most of all, they want you to keep on using them!
They can also recommend new products to you. When I was having issues with my loop stoma, the advice I was given from my healthcare company was amazing - with small adjustments of wearing a belt/using paste not rings, my quality of life and comfort improved in huge bounds.
effective ostomy management requires timely ordering of supplies
ReplyDeleteNice ostomy care tips for fitness enthusiasts
ReplyDeleteGreat advice on ostomy care
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