** Warning: this post contains details about my stoma, it’s appearance and output. If you would not like to read, please stop now **
That ‘aha!’ moment
Lately, I’ve been experiencing some quite bad leaks with my stoma bag. What started off as just because I’d change my bag after two days of wear, it soon became daily and then multiple times a day. Sometimes, it would happen before I’d even had a chance to do the first empty of a new bag!
After almost a year without massive leaks and only a few patches of soreness I solved myself, I was gutting that this was happening. It made me feel disheartened because I was doing so well. I began feeling paranoid about my bag, checking it to make sure it didn’t leak onto my clothes. Then the same paranoia would keep me awake at night, leaving me with little sleep and less energy. I was already fatigue, it was just compounded.
So, I decided after some trials of tweaking my routine, I needed help. I needed an expert hand, a new set of eyes and some reassurance.
I made an appointment to see my SCN for a review.
I have not had an appliance review since moving to Peterborough in 2017. I’ve changed some products since I first started having my prescription for my supplies in 2016, but despite this, not an official review has taken place. Now that I was experiencing something that couldn’t be easily so tweaked by a small change, I knew I would need a different bag, at least on its cutting range.
When things change with a stoma it can be one of several things:
- The cutting of the bag has changed due to weight change or increase in muscle weakness.
- A product is no longer working, usually a supporting product, and is failing to provide its function.
- There is a reaction to a product, by way of a skin reaction.
These are in order of most common and most easily to correct too.
What happened next is my own experience and it’s taken under the guidance of my own SCN. But it does highlight some things that are important for Ostomates and why an AUR is a good checking point for several reasons.
I had brought in my current products, extra bags and my current cutting template – I cut my own bags, always have done, always will. My SCN wanted to see my remove my bag and clean my stoma before we decided on what to do next.
Upon removing my bag, she could see the dramatic change in my stomas size. It would usually be a 26-27mm ellipse – wider across than it is in height – but now it was outside of the 33mm cutting edge of my bag. I was effectively cutting my bag too small – despite going up to the edge of my cutting range on my convex bag – and squeezing the base of my stoma, no wonder I was leaking and experiencing some bags popping off under the pressure.
Despite that, my peristomal skin was very well presented. No broken skin, no dry areas, no redness; it was looking good and healthy.
I have gained some weight and it’s been mostly on my abdomen so it’s to be expected that my stoma could change size given that. But what had been troubling me for a couple months was some hardness behind my stoma, especially after eating and I would been to massage it to help this pressure release itself. Sometimes, it would wake me up at night, it contributed to my pain too. That hardness meant that my stoma would be pushed outwards, adding to muscle weakness. So, whilst this is not called a hernia, it could very well become one.
I’ve had this muscle weakness ever since my SCN took over my care here in Peterborough. She noticed it right away, when each side of my abdomen would be different shapes. Hernia’s have a high incident rate with ostomates – the surgery that creates them is usually open, with a midline incision; but cuts through abdominal muscles and brings your intestine to the surface – this is essentially a hernia too. You will have muscle weakness if you do not work on strengthening those muscles after surgery. This is why core exercises are emphasised to us, pre and post operatively.
So, I am dealing with a bigger stoma due to weight gain, more muscle weakness due to my stoma being bigger but also due to weight gain. The simple solution is to lose weight – a long term goal and by no means easy or simple! – but what do we do in the meantime? What bag do I wear and how do I look after this now?
- We changed my bag from a light convex midi uncut 15-33mm to a light convex maxi pre-cut 31mm which we can cut up to 43mm to accommodate the width of my stoma.
- We continued with my skin cleanser routine – this has had some very good benefits to my skin’s condition.
- We changed barrier product – to something more general but appropriate. We also changed the method of applying it – foam applicator – which was interesting!
- We continued my routine of paste on the baseplate to smooth my dip at my 4pm position.
- We continued with my seal being applied to the baseplate too.
- We added in applying some pressure / warmth to my 3 and 9 position, once my bag was fixed on. This ensures good adhesion between skin, paste, seal and bag.
- We decided on daily changes to make sure I don’t experience too much soiling of my bag – I have an ileostomy which is more liquid that the desired porridge like consistency, so the output can be more inclined to break down.
I go back to tomorrow for another assessment but from my usage in the last week, I am confident this is now working. Plan is to go back to some midi bags but move to a bag which can give me the cutting range I need. So, a new prescription is needed! That’ll be fun, seen as I just restocked my supplies…
But, to take away from this experience:
- Core muscles – so much can be associated from a weakened core – you can have issues with flexibility, back pain, abdominal pain, and also, it can cause some stoma skin problems too. Looking after your core is important! It is a muscle group unseen, but it is so vital to being able to carry your body through whatever you want life to be.
- Hernia – the creation of a stoma is essentially a hernia; a cut through the abdominal muscle. This brings muscle weakness that can be built upon but needs long term commitment too. Core muscle exercise are very simple and gentle, so much so that they can be done in bed. Now if that isn’t a motivator, I don’t know what else is!
- Find what works for you – not at any point, should a SCN push you towards a product. They have access to so many products, they can find what works for you. This is why there are so many products out there; bags, barriers, pastes, seals, adhesives, so that we can find what works best.
- Be open to trying new things – the above advise means nothing if you are not willing to find a solution for your issue. Your SCN is there as a guide for her / his medical experience within the field but you are the patient. You have the stoma, you have the issues and you are the one who needs to want to fix things. You don’t have to live with a bag that leaks, or skin that is sore or just say ‘this is something I can live with’ because this does not have to be the case! Find a SCN that you have a rapport with, who gives you guidance and most importantly encourages you.
- Trust – building a relationship with your SCN does take time but it is something that you might depend on for years to come, if your stoma becomes permanent. They want to see good care taking place; not only in a hospital or medical setting but also within your own setting too. Stomas have a stigma attached to them and this can be first eased by the support of a SCN.
What is an AUR?
An appliance use review (AUR) is a planned face to face consultation between a pharmacist or appliance contractor and a patient to discuss the appliance or device that the patient is currently using.
The review aims to help increase the patient’s knowledge and understanding of their appliance while allowing them to discuss any queries or concerns they may have. It also helps patients use their appliances more effectively, which might make recommendations to prescribers relating to the clinical or cost effectiveness of treatment.
Why is an AUR carried out?
AURs should improve the patient’s knowledge and use of any ‘specified appliance ‘by:
- establishing the way the patient uses the appliance and the patient’s experience of such use;
- identifying, discussing and assisting in the resolution of poor or ineffective use of the appliance by the patient;
- advising the patient on the safe and appropriate storage of the appliance; and
- advising the patient on the safe and proper disposal of the appliances that are used or unwanted.
How is an AUR carried out and what does it mean?
A record must be completed, containing:
- the date of the review;
- the name of the specialist nurse who undertook the review;
- the name of the patient, and the address at which the review took place;
- the name of any other person present during the review (and their relationship with the patient);
- the reason why a review is required;
- the advice given to the patient;
- any intervention made.
The patient must be informed in writing that the record will be made and that it will be forwarded as follows:
- A copy must be sent to the contractor;
- The information about the date of review, the identity of the patient and the pharmacist or specialist nurse who carried out the review must be sent to the patient’s GP if they are registered with one. Even if no action points have arisen that the GP needs to be aware of, they must be informed of the review having taken place.
- Any information which the specialist nurse considers necessary for the GP to be aware of, must be forwarded to the patient’s GP (if they are registered with one); and
- Any information sent to a patient’s GP must also be copied to any nurse who is practising with the GP and providing relevant primary medical services to the patient, if it is known that there is such a nurse.
The record of the AUR must be retained for a minimum of 12 months or such longer period as the local NHS England team requires.
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram
PSNC – Appliance Use Review (AUR)