I have been living with psoriasis on my hands and feet for many years, However during the first Covid lockdown I was referred to my Rheumatologist due to issues with my hands and the effect it was having with my mobility alongside pain and swelling with my fingers.
I was struggling with my bag changes as it always affects my left hand, even though I am right handed I still use both to change and empty my appliance . After a fair few tests and examinations, I was diagnosed with psoriatic arthritis and fibromyalgia.
I was rather upset with the diagnosis but I learned that I needed to adapt and overcome any restrictions I have when I am flaring.
What is Psoriatic Arthritis?
This kind of arthritis affects the knees, hands, joints, bones and tendons. It is more prominent in those already diagnosed with skin based psoriasis.
In psoriatic arthritis, the joints affected may become tender, swollen and stiff. These symptoms tend to be worse first thing in the morning and with rest, and ease with exercise. Stiffness, pain, throbbing, swelling and tenderness in one or more joints
- Swollen sausage-like finger(s) or toe(s)
- Nail changes (such as holes or pits on the surface of the nail, discolouration or lifting from the nail bed)
- Tenderness, pain and swelling over tendons
- A reduced range of movement
- General tiredness
How does this affect me?
The main effects for me are the associated aches and pains, alongside the cramping of my fingers. This causes issues for me when it comes to emptying and changing my stoma bag. I struggle to clean my outlet , cut my baseplate to the correct size and put my barrier rings on.
How have I adapted?
I have managed to come up with a system that works for me. It also helps that the Pelican ModaVi outlet has pull tabs that jut out so I can pull them without damaging the outlet and without too much effort or strain on my hand. Below is a video on how I manage during my flare ups and how I clean my outlet.
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I also rip and wrap my barrier ring when applying the barrier ring. The Eakin freeseal is adaptable and mouldable – ripping it gives me a closer seal to my stoma. The barrier ring still provides amazing protection and means that I don’t have to move my fingers when they are swollen and sore. Exercise helps but I don’t want to cause any more pain than I have to.
Here is how I rip and wrap my barrier ring:
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Should my mobility get any worse then I will be switching to the two piece ModaVi as the baseplate and bag are designed for those that have limited mobility in their hands.
I also precut all my stoma bags; my stoma rarely changes size and the barrier ring gives my skin that protection from back flushing output. I get my husband to remove my base plate protective cover and open my barrier ring If I am really struggling. I now also see a physio who specialises in massage and acupuncture for people like me alongside my daily rehab tasks.
Many thanks for reading