Surviving lockdown with the #IBDWarriorPrincess
Thursday, October 1, 2020
Amy R recalls what she learned living through the coronavirus lockdown with an ileostomy, and how she dealt with the challenges of mental health and stoma care
The COVID-19 pandemic and subsequent lockdown has been a challenge for everyone. It has been especially hard for people with a stoma, chronic illness and mental health problems. Having lived with all of these, I’d like to share my experience of how to cope with quarantine, lockdown and shielding when you have an ostomy.
Touch and go
I was 7 years old when I was diagnosed with Crohn’s disease. Medication, intravenous (IV) infusions and many hospital visits tried to get this under control until I was 17, when, in 2011, I was diagnosed with severe Crohn’s colitis. This affects the large intestine (colon). In August 2011, I had a panproctocolectomy. This operation removed my rectum, anus, colon and appendix.
During the procedure, the surgeons discovered a mass the size of a watermelon attached to my transverse colon. I was told that if I hadn’t had my surgery when I had, the chances were that this large, but benign, tumour would have claimed my life just hours later. Surgery was touch and go and lasted over 9 gruelling hours.
When I woke up, I was really shocked to find out how close to death I’d been. It took me a while to process what had happened and how I felt about that. There are still days now where I look back and think ‘Wow, that really was close!’.
My little lifesaver
That’s why I soon came to realise that Stacey Stoma, my permanent ileostomy, really had saved my life. Within several months of my operation, Stacey was naturally part of my daily routine, just like brushing my teeth. From daily bag changes to knowing what affects my output, I was getting more of a handle on life with a stoma and still learn things today.
Still, she does come with her own problems, and having an ostomy can take some getting used to. An ostomy can be unpredictable. Sometimes, foods I’m normally okay with can upset her, or there are times when she doesn’t seem amused for reasons that I can’t really put my finger on. I’ve learned to accept that that’s sometimes just what happens with no explanation. I am always learning, and, if I am worried, I always check with my nurse.
There are low times, thankfully few and far between, where my stoma gets me down. Occasionally, I want to escape from her, but she is permanent, so I know I have to embrace her in as many ways as possible. However, I then remind myself exactly what my stoma has done for me personally. It has allowed me to not just survive, but to live and gave me another chance at life.
The coronavirus lockdown has understandably been a concerning and frightening time, especially for people with chronic illnesses. I was not the only person to be very confused by the UK government’s shielding guidelines earlier in the year. The letters I received seemed to give contradictory instructions on how to keep myself and those around me safe. It was difficult to distinguish established facts from scaremongering.
The risk classifications were especially hard to understand, and I wasn’t sure which category I actually fell into, having a chronic illness, but not being on any medication or having any other more serious risk factors. I didn’t know whether an ileostomy was a risk factor; as a permanent surgically created opening of the bowel, it felt reasonable to assume it could be at severe risk of infection if compromised. I knew I was at increased risk if I was on medication that compromised my immune system, but that didn’t apply to me. However, 2 months on I received another letter saying that I should be shielding.
All this turned my mind into a maze. I had days where the anxiety made me want to hide under my covers in bed, and the fear of it immediately wrenched my stomach into knots. The more I tried to make sense of things, the more suffocating those thoughts seemed to be. If it carried on and I didn’t intervene mentally, I knew I could become increasingly mentally unwell.
Lockdown hasn’t affected stoma deliveries
Dealing with it all
After weeks of trying to work out my feelings, I knew that I had to get a hold on how I felt about it all. I decided to take some practical steps to promote my mental health, without compromising the safety of those around me.
I put a lot more self-care techniques into my daily routine, including making sure I ate meals and stayed hydrated, as well as treating myself to bubble baths, face masks and aromatherapy. To keep my mind occupied, I started to do things at home and took to organising and cleaning more often. I ordered books to read (or at least that was the intention). When working from home, I made sure that every day I got dressed and did my make up before starting.
I found not having a garden at home very hard and soon felt the four walls closing in on me. It was especially hard when we were confined indoors and only allowed to exercise close by outdoors for 1 hour of the day. I tried to get out for fresh air when I could, although some days it didn’t happen.
The increase in self-care was great for the first month or so, but the novelty did start to wear off. After that, the amount of joy and excitement I got from these things started to dwindle. I felt increasingly apathetic and was just longing to return to normality. However, I knew things were unlikely to change, and we would probably still be working from home for quite some time into the future. The uncertainty of that definitely worried me.
Lockdown didn’t really affect my life with an ileostomy. All I had to do was change the delivery address for my stoma supplies from my office to my home. The delivery company redirected my packages kindly, quickly and without stress. They reassured me that bulk ordering would not be necessary, as they would be able ensure their supply met the demand.
The only difficulty I had was a few months into lockdown. My stoma started to feel painful and flush (flat) against my skin. This wasn’t the first time I’d felt this, as I’d been having recurrent issues with a stricture (narrowing) where my stoma comes out of my stomach at skin level. At first, I was terrified about having to go to hospital. Luckily, that didn’t happen, as I knew enough about how to manage it at home.
Regular opportunities to get outdoors are essential for maintaining mental health
Staying on the right path
It has been the mental side of things that I’ve found most challenging about lockdown, and a lot of people have said the same. Some years ago, I was diagnosed with mental health problems, mainly depression and moderate-to-severe generalised anxiety disorder. I believe that mental health is just as important as physical health, and it’s about finding the best balance between the two as far as is possible. Life is full of ups and downs, with or without coronavirus, and a perfect balance is sadly rarely achievable.
I have been allowing myself to do things that bring more ‘normality’ back safely. I appreciate being able to get out more and do things that distract my mind rather than sitting and thinking all day. If I just let the fear of COVID-19 take over me, I’d be inside forever, which would put my mental health into a near-impossible place. I know I have to manage it to a healthy extent.
However, I am still weary, taking precautions and doing things to protect those around me. I try to think whether I’d be happy with each of the choices I make on a day-to-day basis. If, tomorrow, I or someone I’d been around got coronavirus, would I be content that I had done enough to reduce the risk and take the right precautions? If in doubt, I try to adjust what I’m doing. It’s also super important to try and base our choices on facts, which often seem very hard to obtain, when things can be sensationalised, and we are often told the bad news rather than the good.
I am so thankful that my surgeons saved my life and gave me my ileostomy, so that I’m around to plan for a future, whether in or out of lockdown. Of all the normal things I am looking forward to doing when it is safe to do them, one of the things that excites me the most is seeing the friends I haven’t seen for ages, especially those in the bowel disease and ostomy community.
Amy R is 28, works in accountancy and blog about life with an ileostomy