Stoma life in a pandemic: your worries explored

Understandably, what is going on in the world right now with Covid-19 can be very daunting & scary at times for a number of reasons. We have all had to make changes, some of them quite dramatic, in a very short space of time. Some of us may have sadly experienced the virus closer to home or have tragically lost someone as a result of Covid-19. There is so much uncertainty around what may happen or how long adapted life like this will pan out, but I wanted to take this opportunity to hopefully provide a little bit of reassurance on living with a stoma at this time, & hopefully answer a few questions you may understandably have.

1. If I have a stoma, am I classed as “high risk?”

This is one of the first questions I had when the social distancing guidelines came out in the UK, and something that wasn’t clear at first.

I personally would have thought the fact that a stoma is classed as an abnormal permanent opening (in my case) from the inside of the body to the outside, then this would automatically mean high risk, just as it qualifies for medical exemption, but having researched and spoken to a number of people since, having a stoma doesn’t necessarily mean you are high risk.

Having your large intestine (colon) removed alone has not been found to hinder immunity, but the colon’s primary role is to absorb salt & water, which is why it is important to follow medical advice on staying hydrated and what to do when you are dehydrated. It is also a good idea to follow medical guidance on how to maintain a healthy diet to boost vital vitamins that can help with things such as immunity, and try to minimise stress & get enough sleep, where possible (easier said than done right now, right?)

However, combine having a stoma with one of the things below, and you may be classed as increased risk or high risk.

The NHS criteria for increased risk is:

• If you are over 70
• If you are pregnant
• If you have an underlying condition which could increase your risk of catching Covid-19

The NHS also sets out high-risk criteria & states that the following people should have heard from the NHS:

• If you’ve had an organ transplant
• If you’re having certain types of cancer treatment and/or have certain types of cancer
• If you are pregnant and have heart disease
• If you have a severe respiratory condition such as severe asthma or cystic fibrosis
• If you are on medication that is known to suppress your immune system (also known as immunosuppressants) – this is often the case with those who suffer from Inflammatory Bowel Disease

2. Should I stockpile stoma supplies?

The NHS have issued advice that people should not panic order their stoma supplies, as at present, supply is sufficiently meeting demand. Many stoma companies have also stated that despite the increase in demand some are experiencing, they are running business as normal & that if anyone has any concerns or worries to contact them, but please be patient. You should order only what you need, so in other words, stick to your normal ordering routine and there should be no need to increase the frequency of deliveries.

As good practice having a stoma, I usually ensure that I have at least one delivery that is unopened as back up, just in case I go through a bad period of leaks for example and need more stoma supplies. This is enough to give me peace of mind but means I don’t order things I don’t necessarily need.

3. Can I still attend my hospital appointments during Covid-19?

Some people still require treatment, medication or to see their medical team, and it is important that people do not stop taking their medication out of worry or stop having treatment. Under the social distancing current guidelines, you are still allowed to leave your home for a medical need in most circumstances and if doing so won’t severely put you or others in danger. Chances are you will be advised prior to your appointment as to what precautions you should take and if you should still attend, but if you are worried and can’t get in touch via e-mail or message, give the relevant hospital department a call.

If you are due to see a stoma nurse as more of a routine check-up, it is a good idea to ask yourself if your appointment can be done without visiting the hospital e.g. via video call or phone call. In the past, before Covid-19 came about, I have been lucky in the sense that I can always send photos of my stoma to my stoma nurse if I have any concerns. This way, my stoma nurse can see if any face to face intervention is likely to be needed, before making an unnecessary trip to hospital.

If you are worried about your health at present and it is not an emergency, the NHS are advising you to visit NHS 111 online for advice before calling 111, to see if online help is enough. If it is life-threatening, then call 999 as normal.

4. What if I’m stranded abroad & need stoma supplies?

I’ve been asking for input across social media for this question over the last week and it seems that, thankfully, not many people have had to deal with this. I didn’t really get any conclusive answers off others for this as it seemed to be different for the few individuals who could comment. I’m not speaking from experience here, but I would make sure I had my stoma supplier’s number on me if I went abroad or away from home where I may urgently need supplies for whatever reason.

I would first call my supplier, and if there was no answer, I would e-mail. If I had no success with this, I would then ring my stoma nurse at hospital or my GP. Depending on where you are, it may even be possible to get supplies from a local hospital or doctors. Obviously, this depends on several factors; one being if you speak the local language or not! This is a topic I will explore in a post by itself at a later date when I have carried out more research & had the chance to contact various suppliers for their advice.

5. Stoma included or stoma aside, how do I cope mentally during a global pandemic?

This is a big question with many answers that aren’t necessarily a “one size fits all” solution. What works for some may not work for others, and vice versa. You know yourself better than anybody, so I’d say a lot of it is all about gauging when to increase your self-care, what self-care level to maintain regularly to give you the best chance of coping & knowing what to implement when you do get your bad days.

Knowing when to reach out to others is vital. I get days where I want to be on my own and it is perfectly okay to have time on your own, but there can become a point where I start to feel more lonely if I don’t let others in, especially at times such as the present. This also doesn’t have to be as direct as outright asking someone for their help, if you feel you can’t bring yourself to do this. It can be something such as messaging a friend and asking how their day has been and talking about something unrelated or even having a video call with a family member and a family pet. Dogs always help when I am struggling.

Some of you may have received a letter from the NHS advising you to stay at home for at least 12 weeks. Whilst this may feel overwhelming at the best of times, it is important to remember that although 12 weeks may seem like a long time now, you are already through some of it. Whilst 12 weeks may seem like a long time now, to spend at least 12 weeks at home now may be the difference between being here vs not being here to enjoy the rest of your life ahead of you. This also stands for staying at home to protect others as well.

It is perfectly understandable and natural to find some days hard, but remind yourself that it is okay to have those days, the reasons why you are doing it and think of things you can plan to look forward to once the measures are over and imagine how good those things will feel. To have those days available to us, it is so vital that we all abide by the Government guidance. The sooner and the more of us adhere, the less drawn out this whole process should be.

Remember, you are not alone. It is also important to remember that people are also recovering from Covid-19, as it is very easy to get lost in the news which often understandably focuses on those who have tragically lost their lives as a result of Covid-19. We must ensure that we all do, & consistently keep doing, our bit to minimise the strain on the NHS & to increase Covid-19 survival numbers. The main priority right now is to stay safe, look after yourself & work together as humans from our houses to adhere to social distancing, to do the right thing & to be there for one another in every other way besides physically. Physically then, in time, we can hopefully all do the things we enjoy spending time with our cherished, loved ones, such as enjoying a meal together, instead of having somebody missing at the table because of Covid-19.