Covid and an ostomy

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After 18 months of avoiding the dreaded Covid, I got a positive LFT test in December, followed by the PCR confirming it. No-one else in the house was testing positive so I was lucky enough to have a spare room in the house to move into, as my daughter is away at uni, there is also a small bathroom and it is on the top floor of the house, so I was able to avoid the family and isolate.

I searched a lot about how Covid could effect my ileostomy and didn’t find too much. I did find ‘An Ostomates experience of Covid19’ on the Coloplast website, so that is worth a look. So I thought I would share my experience, as always this is just my personal experience and Im not medically trained, so if you are concerned about yourself, you should speak to a medical professional.

It started with just feeling a bit off, a high temperature and a bit of a cough, after testing and isolating, I felt a little rough for a couple of days but nothing too bad. Then on day three, I began to vomit and have extremely high output, my temperature was sky high and I felt terrible. I started taking rehydration sachets to combat the vomiting and diarrhoea, but by day 5 it was really tough.

My husband tested positive at this time too, and he was feeling really poorly. We had similar symptoms in some ways, high temp, sweating, feeling hot and then freezing. We both had terrible headaches, were exhausted and sleeping a lot, were breathless and our chests hurt.

But it was the vomiting and high output from my stoma that was the worst. By day 5 I couldn’t eat at all, I was only keeping down sips of water and I had to call 111. I was terrified of being admitted to hospital. Would I end up on a ventilator? Would there be stoma nurses on Covid wards? Would this damage my kidneys again? What if I died? 111 were great and got a GP to call me, he listened to my concerns and prescribed some anti emetic medication to help me stop vomiting and told me to continue to take the rehydration sachets, with orders to call 111 immediately if it got worse, if I passed out, if I stopped peeing.

My lovely friend picked up the medication and dropped it at out doorstep and though it helped with the vomiting, I was still extremely nauseous and my ileostomy bag was just filling with watery bile constantly. On day 7, I had to call 111 again as I couldn’t even keep water down, they gave me some more anti emetics and I was told the next step was hospital. I had also started coughing up grey and green phlegm, which I was told is not a symptom of Covid but of a chest infection, which was probably caused by the Covid, so I was given a high dose of antibiotics.

Woman with an ileostomy and COVID 19 looks thin and poorly

What was so difficult is that my husband was as poorly as I was but without the vomiting. He was bed ridden and his temperature was frighteningly high, had awful headaches and fatigue. So we lay in bed, side by side feeling sorry for ourselves but they do say misery loves company!! So it was actually quite nice to be in it together.

Luckily the vomiting and output slowed down after this, and over the next few days, I started to feel a little more human. It was around 10 days of feeling really ill, and I lost over a stone in that time. I was still very weak and poorly, but once I could eat and drink again, everything became a bit more bearable.

Whenever I am poorly with a cold or infection, my stoma reacts badly and I get bad diarrhoea and so it wasn’t too much of a surprise that Covid caused the same thing for me. But it was a scary time and I am so glad we are over the worst of it now.

All I can say is that if you have any illness that causes your ostomy to act differently, it is worth calling your GP to check in. Dehydration is so often overlooked or thought to not be a big deal, but its huge and it can damage your kidneys and make you incredibly unwell.

The NHS says: You’re at an increased risk of becoming dehydrated if you have an ileostomy because the large intestine, which is either removed or unused if you have an ileostomy, plays an important role in helping absorb water from food waste.

This makes it important to make sure you drink enough fluids to keep your urine a pale yellow colour to prevent complications of dehydration, such as kidney stones and even kidney failure.

Symptoms of dehydration in adults and children include:

  • feeling thirsty
  • dark yellow and strong-smelling pee
  • feeling dizzy or lightheaded
  • feeling tired
  • a dry mouth, lips and eyes
  • peeing little, and fewer than 4 times a day

Dehydration can happen more easily if you have:

  • diabetes
  • vomiting or diarrhoea
  • been in the sun too long (heatstroke)
  • drunk too much alcohol
  • sweated too much after exercising
  • a high temperature of 38C or more
  • been taking medicines that make you pee more (diuretics)

How you can reduce the risk of dehydration

  • Drink fluids when you feel any dehydration symptoms
  • If you find it hard to drink because you feel sick or have been sick, start with small sips and then gradually drink more.
  • You can use a spoon to make it easier for your child to swallow the fluids.
  • You should drink enough during the day so your pee is a pale clear colour
  • Drink more when there’s a higher risk of dehydrating, for example, if you’re vomiting, sweating or you have diarrhoea.

A pharmacist can help with dehydration

If you’re being sick or have diarrhoea and are losing too much fluid, you need to put back the sugar, salts and minerals that your body has lost.

Your pharmacist can recommend oral rehydration sachets. These are powders that you mix with water and then drink.

The other thing I would say was quite difficult with having Covid and an ileostomy is that I also have a ParaStomal Hernia, this is a hernia that sits behind the stoma and I am used to having to support it when coughing. Usually this isn’t a big deal as you don’t cough that often! But when you are constantly coughing, it is important to support the hernia. You can do this by gently pressing and holding the hernia as you cough, you can use your hands or a folded towel or sheet.

I am well on the mend now physically, but mentally it really took a toll on me. I have been having therapy for the past six months for PTSD after my last surgery. One of my big triggers is from when I was wrongly discharged from hospital when my kidneys were failing. I came home and I started vomiting litres of bile and my body started to shut down. The hospital called when they realised their mistake and told my husband to bring me straight back in as I had a stage 3 AKI (Acute Kidney Injury). I was very unwell but thankfully it was a good outcome and I recovered. But the incident made me develop PTSD, I had panic attacks, insomnia and depression. The symptoms of Covid, the vomiting, the dehydration, the panic of whether I would go to hospital or not, it made those past feelings come flooding back and I have had a bad few weeks trying to deal with this relapse into anxiety.

Its been about 6 and a half weeks since I got Covid, and Im happy to say that I am doing much better now physically. But I wanted to just note down my experience and send lots of love to anyone dealing with covid, long covid or the mental health issues around living through a pandemic.

Peace and love

Sam xx

Hello 2022 – chronic pain and negative thoughts

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Hi guys,

Firstly, an apology. It has been three months since I last blogged and I am sorry for not being about. I think I have just had so much going on in my head and life and I haven’t had the strength to talk about it too much. I always want to blog and have some lightness and positivity and when I haven’t felt that in the real world, it felt wrong to put out more negativity into an already messed up world!

But it is 2022, and though I am not doing any resolutions (mainly because most people break them and then just feel worse about themselves) I would like to get back into regular blogging. `I know how much it helps me and I have had some really lovely messages from people saying they miss reading my blogs and that they have helped them. So I am going to try and be more regular here. I hope to leave this world just a little brighter than when I came into it and so if I can do this through the blog, then maybe its ok to not always be sweetness and light.

So over the next few weeks I am going to try and catch up a little about what has gone with me over the past few months, but for today I just wanted to chat a little about when New Year doesn’t feel quite so happy. I want to point out now that I am talking about suicidal feelings due to chronic pain in this post, so please don’t read if it is going to trigger you.

As we say hello to 2022, I think everyone is feeling a little worn out, two years of a pandemic will do that to you! And for lots of people, it is an overwhelming time. As you see a million adverts for products to make you a newer, better you. As everyone talks about resolutions, and diet plans and changing things about themselves to be fitter, happier, better, stronger, sexier, blah blah blah, it can be a bit much.

As I start a new year, I think about what will be different for me? And when you have constant, chronic pain, it is easy to feel a little hopeless and think that nothing will be different. It feels exhausting to think about another year in pain. It feels draining and scary. Living with pain that the doctors tell you cannot be fixed means that I do feel overwhelmed at the thought of life without reprieve. And it is hard to feel happy or excited by that.

I don’t want to scare anyone by what I talk about next, and I do want to add in another trigger warning that I will be talking about suicide. I am not in danger, I am medicated, I am going through therapy and I am open with my partner about these feelings, so please do not worry about me. But I do think it is important to talk about the links between chronic pain and suicidal thoughts, or completion of suicide. If this is too upsetting for you to read about then please do skip this blog.

If you are feeling suicidal now, then please stop and get support. If you are in the UK, there is a great list of helplines from MIND here, if you are in another country, then speak to someone you trust or search for support in your area.

 This study states that, “individuals with chronic pain are at least twice as likely to report suicidal behaviours or to complete suicide”. I got a lot of information from a great website Pathways here, the blog is by Ann-Marie D’arcy-Sharpe and is very much worth a read.

She says “When you feel that chronic pain is forever, the future can seem daunting. You start to wonder if you can set goals for the future if you’ll ever be able to function and enjoy your life. It truly can feel hopeless, and this can pose a big risk for suicidal feelings. Being in constant pain is a horrible experience. Knowing that this pain is long term and for some people constant, can make it feel impossible to go on. It’s completely natural not to want to live in pain. Your body and mind are not designed to cope with being in pain regularly. When patients are not given another way to escape from their pain (meaning through treatment), they can feel that there is only one escape route.”

Though I haven’t been blogging here, I have been active on Facebook and Instagram and I know a lot of you follow me on those platforms. I have been sharing about my insomnia and how I am struggling to sleep due to anxiety since I had Covid (I will be blogging about the covid for sure as it was a doozy!!!) and pain. And so I was interested to read that “lack of sleep is one of the highest risk factors for suicide in any person, even without chronic pain. When we don’t get enough rest, our bodies and minds struggle to function. Tiredness can make your mood drop as well as causing you to feel weepy and confused. Fatigue can cloud your judgement and make you act out of character. For many chronic pain patients, sleep is the only respite they get from their symptoms. When they are deprived of this break from their pain, they can feel trapped and the need to find another way to escape their pain can increase. This study explains just how high of a risk factor insomnia is, explaining that frequent lack of sleep is, “linked to a five-fold increased risk of suicide in both the general and chronic pain populations”

So adding together chronic pain and a lack of sleep does make you struggle more and increases your risks. Oddly enough, just reading this has actually made me feel better! That may sound odd but I have felt like I was losing my mind recently. My pain levels are high and my sleep is at an all time low, I feel anxious, sad and hopeless and the turning of a new year has made me feel unsure as to how I can face another year of this. But knowing that I am not alone, that it isn’t just me, has made me feel buoyed that I am just processing these difficult events. I am not going ‘mad’ and I am not going to harm myself.

My brain is processing and working through chronic pain. I recognised that I wasn’t doing so well last year and saw my doctor who prescribed me antidepressants and referred me for therapy. I have been seeing a PTSD and trauma specialist who has experience in working with people with long term health conditions for around 6 months and we are working through a lot of my issues.

I feel no shame in telling you about my medication support and talking therapy support for my mental health, I don’t feel stigma or embarrassment. And I hope that times are a-changing and we are all recognising that every single one of us have issues that we may need a little extra support with! If you are struggling, then please don’t face this alone. Speak to someone you trust, speak to your GP, get help.

So anyway, finding this blog made me see that chronic pain and suicidal thoughts are a problem for a lot of people. But it also really made me think about what we can do to get support and to help ourselves. As always, just a reminder that I am not medically trained and you should always speak to a medical professional for any medical problems. This list is a few things that may help you.

Seek treatment for chronic illness

This may be psychological treatments, physical therapy or medication. Speak to your GP, specialist nurse or consultant about what treatments are available. I have finally been referred to a Pain Clinic after a long time of asking, don’t give up. You are entitled to support.

Meditation

There is a free meditation suggested by the NHS here. They say “With this guided Pain Management meditation anyone can start using meditation as a tool for managing pain. Pain, stress and our emotions are connected, making living with pain difficult physically and psychologically. With meditation we can change our relationship with pain, reducing its impact on daily life. Experience the amazing power of your calm mind!”

Studies say that “pain is a multidimensional experience that involves sensory, cognitive, and affective factors. (This) renders the treatment of chronic pain challenging” it says that meditation and mindfulness significantly helps with pain. I know people feel sensitive when we talk about non-medicated treatments for chronic pain, and I get it. If I could think myself pain free I would!! For me, meditation and mindfulness isn’t about getting rid of the pain, but I have found it helps as one coping strategy amongst many others.

Pain websites

There is a lot of information about living with pain, here are a couple fo websites to check out.
Charity: Action on Pain

Charity: Pain Concern

Pain relief

If over the counter pain relief is not helping, then speak to your doctor about prescription pain relief. Just remember that often pain relief needs some tinkering to get right for you. If your prescription pain killers aren’t helping, then get a review with your doctor to look at dosage or potentially a different type.

Exercise

Believe me, I know that when you are in pain, the last thing you want to do is to exercise!! But studies show that gentle exercise can help psychologically and physiologically with chronic pain. The important thing is to choose an exercise that won’t put too much strain on yourself. This might be walking or swimming or gentle stretching. If you have a long term health condition, it is good to chat with a medical professional before starting out on a new exercise regime.

Mental Health Support

I have been under the mental health team for around six months now, I see a fully trained therapist who has experience in working with disabled people and people with long term health conditions. Speak to your doctor about a referral or search for private therapy in your area.

On the NHS Scotland website, you can work through a self-help guide that uses cognitive behavioural therapy (CBT) to help you live with chronic pain.

Speak up

Living with chronic pain can feel super isolating, speak up if you are struggling. That may be to your partner, a friend or family member, but speak to someone you can trust. You can also look for support groups in your area or online. You might want to look for a chronic pain group, or for a group that specialises in your specific illness. Speaking to others makes you feel less alone and can help you feel more positive and find coping strategies.

I suppose my biggest thing to say here is that whatever you are dealing with right now, you are worthy, you are wanted, you are better here. Please reach out if you are struggling with your mental health right now. Put your hand on your chest, can you feel your heart beating? That is called purpose. You are alive for a reason, so please don’t give up.

Peace and love

Sam xx