crohn’s

Crohn’s and Coronavirus

~ hrh316 ~ Leave a comment

The outbreak of coronavirus has coincided with our own little crisis, so that at first, I didn’t really appreciate the severity of the global situation.

My Crohn’s disease, which has behaved itself very well for at least six years now, has suddenly flared up. I caught a flu-like illness at Christmas time, and my poor stomach hasn’t been the same since. I got to the stage where I was exhausted and visiting the toilet several times a day … anyway, it wasn’t pretty. Thankfully it was just as the first coronavirus headlines were reaching the UK, so I was able to quickly access medical care.

The catch is that I’ve been put on steroids. These dampen my immune system and while that’s great for my Crohn’s (which is beginning to behave itself again) it’s not great when a global pandemic is occurring!

It has been really hard to know what to do. What I’ve been very aware of is that it was a flu-virus that triggered my current symptoms. I don’t want to give my immune system any more excuses to misbehave, especially with a brand new virus. I also don’t want to become one of those people overloading the NHS, by developing complications.

So we’ve applied social distancing measures to our family. We made the decision to keep the children off school yesterday. It seems foolish for me to be avoiding supermarkets, but letting the children go into a crowded, closed-in space for six hours a day, and risk bringing germs home. At first I thought we were overreacting, but a doctor friend has reassured me that we are being wise.

I’m very conscious that I was facing some deep questions just as coronavirus began making its way around the globe.

What if the treatment doesn’t work this time? What if my Crohn’s gets worse, and I have to live with debilitating pain and illness long-term? What if the treatment really doesn’t work? Will my life be cut short? Will I have to leave my family and my children?

I don’t want to sound dramatic, but these questions are very likely to be running through the mind of anyone facing a serious, chronic condition. I’m also aware that these may be the questions running through your mind right now, as you watch the spread of coronavirus, and the attempts of governments to slow and stem the tide of disease.

I think coronavirus is exposing us to things we prefer to suppress. Things I’ve had to face up to often through my life.

Medicine does not hold all the answers. When I was diagnosed with Crohn’s, I was surprised to discover that the doctors did not know what causes this disease (and many others). They know what the disease does, and can offer some very welcome treatments to heal our bodies, but cannot explain why a body’s immune system would turn upon itself.

And even the treatments themselves hold no guarantees. I may take the same steroids and medications as another woman my age, and she may respond and recover; I may not. Again, the doctors don’t have an explanation. Different people respond differently to different treatments, and it’s impossible to predict outcomes with certainty.

What this is all whispering to us is that our lives are not certain. We have far less control than we like to think. This is a truth we are able, most of the time, to keep at bay here in the west.

I know this because it’s how I lived before I got Crohn’s disease. I assumed that ill health and death were far off. I assumed that if I did get ill, there would be a scan, a pill, a treatment. And in the moments when such assumptions were shaken, I could silence the whisper of fear through social-media and home entertainment.

Teach us to number our days, that we may gain a heart of wisdom.

Psalm 90:12

I know it’s really scary, facing the unknown. It can feel like standing on the tip of a void. As I’ve reckoned with the possibility of my life holding illness, surgery, pain, cancer, and possibly an early death, I’ve sometimes been gripped with terror. What will happen to my children if my life is cut short? What will happen to me?

I’ve begun to realise, very vividly, that none of the things we trust in are strong enough in such a storm. Medicine can do much, but it cannot save your life indefinitely. The outlook is bleak – the mortality rate on this planet is fixed at 100%. You may get to live to eighty, ninety, but then you will die. And as Moses so eloquently states, even those years are weary, and full of trouble (Psalm 90:10).

My gentle challenge to you, during this fearful time, is to let yourself face those fears. Ask yourself those hard questions. Stand on the edge of the void, face the unknown.

What is your baseline trust? When all the things we usually trust in – social order, government, medicine – are being shaken, where is your hope? When a vague platitude of, “I’m sure it will all work out” no longer holds water, where do you turn?

It’s only as we face our fears that we really discover what we are hoping in, and where our trust is. Mine was in my health and youth, once. I quickly realised that a disease can easily take away all of that. Then for a while my trust was in medicine, but I learned that there are no guarantees, even for our amazing doctors.

It was painful, having my hopes, my expectations, taken away. My foundation was shaken. Yet as I discovered how weak medicine is, I found something stronger, something that is big enough to carry me through illness, pain, suffering, and yes, even death.

Or rather, Someone.

My hope used to be in treatment, in cure, in long life. Not any more. If God gives me those things, then I will thank him with all my heart, but he may not. That’s his call. And yes, I tremble as I write that. I don’t want to die. I don’t want to leave my family. I’m scared of coronavirus, just as I’m scared of the uncertainty of Crohn’s disease.

But here is what I’m hoping in.

God is bigger than Crohn’s, or coronavirus, or any other disease. He is more precious than youth, health, long life. His love is deeper, stronger, than any I could ever have known. It’s the kind of love we all long for.

As we look at our world now, pause and notice the fragility of our society. We appear so strong, with our health care, justice system and advanced technology. But coronavirus is revealing it all to be built on sand. A tiny particle, invisible to the human eye, is destroying our society.

But this is my hope … one day God has promised to renew this world. He has promised to sweep away corruption, disease, and even death. In fact, he has already removed the sting of death for those who love him. When I do die, whether of coronavirus, Crohn’s, or peacefully in my sleep as a ninety year old, I believe I will be truly coming alive. I will wake to peace, healing, and life.

While coronavirus is fearful, and evidence of the evil that underlies our world, it can also be an opportunity. It’s a chance for us all to pause, to sit in silence, just for a few minutes each day, and ask what we are truly trusting in. Youth and health may fail you. Medicine will fail you, if not now, then one day.

God will not. He can keep you safe in this life, and if he chooses for you to leave, he can give you an eternal life, un-threatened by disease, sorrow or death. Look for him.

You will find him if you seek him with all your heart.

Deuteronomy 4:29

Advertisement

What I mean when I say, “I’m tired”

~ hrh316 ~ Leave a comment

Today I took my two younger children out to a farm park. When I got back I spent an hour painting furniture. Then I cooked our dinner.

Just an ordinary day in the life of a mum, right?

Yup. Except that by dinner-time my arms and legs were trembling with tiredness, and it was all I could do to eat. By the time I’d put my daughter to bed, I was so tired even breathing felt like an effort.

Because although, in one sense, I am an ordinary mum, in another, profound sense I am not. I am a mum with a chronic health condition.

My Crohn’s disease is in remission. I am so thankful for that. But while that means I am very happily living without daily diarrhoea and sickness, it doesn’t mean I get to live without some of the other symptoms … tiredness and bowel pain being two of them.

It’s the tiredness I want to focus on, because it is the one symptom that is so hard to explain. When people say, “I’m tired,” it can mean so many different things. Having a newborn baby introduces a whole new level of meaning to the phrase! Having two toddlers at home is yet another dimension! I’ve experienced the desperation and horror of both 🙂

But living with a chronic condition … this is a tiredness so profound that it can feel hard to breathe.

For me, right now, the worst thing about it is the lack of understanding from other people. My husband is wonderful, believes me when I say that I am too tired to pick up the toys on the living room floor, too tired to read, too tired to clean.

Not everyone is so kind.

I know what ordinary tiredness feels like, and how, most of the time, it can be pushed through. Or how, if you just sit down for ten minutes, it passes. But this is not like that. It feels as though the bones in my arms and legs have turned to lead. Moving them is hard work. It feels as though my rib-cage is weighted, as though when I breathe in I am having to lift bricks resting on my chest.

It gets me down. Very down. Because I don’t like my house being a mess. I don’t like not cleaning the kitchen sink for two weeks because by the time I’ve done the basic essentials like emptying the dishwasher and cooking dinner, I’m out of energy. I don’t like telling my kids I’m too tired to play with them. I don’t like choosing a freezer-to-oven meal yet again because the healthy, home-cooked option is too hard. I don’t like saying to friends that going out in the evening is too much at the moment.

It makes me sad and angry that just taking my kids out for a couple of hours leaves me wiped out. I hate what this condition has stolen from me.

I get upset that my weight has crept up and up over the past two years because when I’m down I eat, and I have no spare energy for proper exercise. I joined a weight-loss programme last year, but decided that the stress and extra work of preparing meals from scratch was making me tired and irritable, and though I loved the impact on my body, I decided that, right now, being there for my kids is more important than how I feel about my body (and fitting in with a cultural stereotype of what is beautiful).

This is not meant to be a complaint. I’m writing this so that, if you too are living with a chronic condition, you have something to show those who do not understand you. Sometimes it helps to read something by a third party.

So if a loved one or friend of yours has just shared this with you, read more into their ‘I’m tired’ than how you feel after a long day’s work. Instead, remember the last time you were properly ill, and the first few days of recovery (when you’re well enough to be out of bed, but doing ordinary things leaves you wanting to crawl back into bed). That’s the level I (and your loved one) live at most days. We can manage ordinary things, so it looks like we’re ok. I can hoover my house, clean my bathroom … but then I have to stop and rest, or I’d have nothing left for my kids when they come home.

I’m constantly having to choose, to make sacrifices, to conserve my small allowance of energy, making it stretch. I make choices most people don’t have to weigh up: Do I sort out the pile of laundry or take my toddler to the park today? Do I go to the supermarket or arrange to meet another mum and toddler? I want to do both, but I know it will be too much.

Sometimes I choose something knowing I will suffer for it (like today), because I’m sick of this tiredness ruling my life. But I can only do that so often.

And what makes it 100 times worse is when people don’t understand, don’t even try to understand. It leaves me drained and upset when people judge me as a failure, assume I’m lazy, weak, ill-disciplined … and I have no opportunity to correct them. When people ask how you are, you can hardly launch into a long explanation of how you feel, so “I’m quite tired at the moment”, has to suffice. It barely scratches the surface.p1000669

But it humbles me, which is a good thing, and I am learning to rest in the fact that God knows I am doing everything in my power to please him. I am learning to be happy that he understands, he knows. But every now and then, someone else’s complete lack of understand really, really hurts.

So if you know someone with a chronic condition, be kind. Remember times you have felt like even ordinary life was too much, and how frustrating it was for you, just for two or three days. Let the person have a little moan every now and then, maybe even cry on your shoulder. Leave out the judgement on their house, appearance and life choices. Perhaps they hate having crumbs on the floor as much as you do, but don’t have the choice of whether to leave them another day or not. Have a bit of compassion for them. Because now you know what they mean when they say, “I’m tired”.

My Crohn’s story

~ hrh316 ~ 1 Comment

I thought it might help your understanding of future posts to know a bit more about my history. So over the next few days I’ll throw out some blogs on my experiences of Crohn’s Disease, Pre-eclampsia, maybe depression and anxiety, and emetophobia.

I’m keen to raise the profile of all of these. They are not often in the media, and they are not well understood. Perhaps you’ve never heard of some or any of these things … but they’ve all had a profound effect on my life and two of them are life-threatening conditions, so worth knowing about.

I thought I’d start with Crohn’s, as it will probably impact the whole of my life, and I’m currently experiencing a relapse.

It’s not a well-known medical condition really. It’s not easy to talk about after all. It involves poo and sick, and flatulence, and doctors peering up your back passage with cameras.

So it’s small wonder people don’t want to talk about it.

My Crohn’s journey started in my early twenties. I was newly married, barely two months in, and we both caught a vomiting bug. Yup, it was fun. I hadn’t been sick in twelve years, so it was a bit of a shock to have my husband spend the whole night in the bathroom (liberally spraying it, I might add, with my carefully prepared cottage pie). I only threw up once in the end, but it wasn’t pleasant given that I have a phobia of being sick.

But these things happen, and we thought no more of the incident. We recovered and went back to work. After that, I had occasional nights when I would have severe nausea and diarrhoea. It felt like my body was trying to empty itself of everything. These attacks would leave me exhausted for a day or two, and I had to miss work because of them.

The GP thought it was IBS and I learned to put up with the attacks. I wasn’t losing weight, and the incidents were not so frequent that my life was seriously interrupted. So I didn’t think too much of it.

Fast forward two years and we are standing in our bathroom holding a positive pregnancy test. Excitement and fear are written all over our faces. This is something I’ve longed for, planned for, prayed for … I desperately want to be a mother.

I was anticipating some morning sickness, and was determined to put up with it bravely. It was worth a bit of nausea to hold my own baby in my arms (though I prayed that I would be spared if possible). I wasn’t.

What I wasn’t expecting, however, was diarrhoea. Almost from the moment I fell pregnant my body reacted badly, and I began having two or three bouts of diarrhoea each day. By nine weeks pregnant I was vomiting also, only once or twice a day, but that was unpleasant enough. The diarrhoea was sometimes as often as ten times a day. I was struggling.

It was only the thought that I was carrying a baby that helped me keep going. I had to take days off work because of the nausea and diarrhoea. When we went for the first scan, at around 11 weeks, the consultant dismissed my theory that anxiety and IBS were causing such bad diarrhoea.

“It must be something like Crohn’s,” she said.

I was equally dismissive of her theory. People like me did not get Crohn’s disease. I was healthy, strong, normal. I did not have Crohn’s. I was only 26 anyway. Serious illness did not hit until you were old!

I battled on. At my lowest point I had ulcers all over my mouth, making eating excruciating, but eating was the only thing that held the pregnancy nausea in check. I was also visiting the toilet up to ten times a day. Food just went straight through me. I felt weak, miserable, and sick all day. We had to live with my parents, sleeping in separate rooms so that I could be near the toilet. I had been given anti-emetics, but continued to vomit occasionally even while on the tablets.

Eventually the pregnancy nausea let up enough so that I could manage it. I returned to work, continuing to cope with the diarrhoea, feeling exhausted and sick, but scraping through. Anything was better than that black couple of weeks in my parents’ house.

The diarrhoea continued through the pregnancy, but I kept dismissing it. I also dismissed symptoms of a dangerous condition of pregnancy called pre-eclampsia (feeling invincible is not always helpful).

But at my 28 week check I could avoid it no longer. I had protein in my urine and high blood pressure. I was admitted to hospital with pre-eclampsia.

The diarrhoea continued through the two weeks I spent monitored in the delivery suite. The consultants said nothing about it; no referral was made to gastroenterology, but then, I don’t think I said much about it either so perhaps the fault was mostly with me.

At 30 weeks (ten weeks before my due date) I had an emergency caesarean to bring my beautiful boy into the world. I got to see him for a few moments before he was whisked upstairs to the NICU. I spent 24 hours in intensive care, and did not get to see my son until the following night.

I’ll say more about the pre-eclampsia and the early delivery of my son in another post.

Eventually, when the diarrhoea failed to clear up following the pregnancy, a sensible GP sent me to Gastroenterology to be tested for Crohn’s or colitis. Blood was drawn, stool samples were taken (an experience in itself), and finally a colonoscopy confirmed that I had Crohn’s disease affecting my bowel.

I was given a course of steroids, and put on a strong anti-inflammatory (a form of Mesalazine), which improved my symptoms massively. I was still very tired, and suffered unpleasant symptoms but not every day, and not so severely as before.

During my second pregnancy my symptoms recurred, though I kept them in check with my medication. Three years after my second boy was born I went into remission and was able to come off the anti-inflammatories. (More about this here).

Crohn’s is not well understood. I have a ‘moderate’ case – there are people who need surgery to remove diseased sections of bowel or gut. The root cause of Crohn’s is not known. I’ve read research that shows an imbalance of bacteria in the gut is linked to the disease, but why this imbalance occurrs is still not clear. In essence, Crohn’s is a disorder of the immune system where processes in the body designed to keep it clear of infection go wrong, and turn upon itself. My stomach is effectively attacking itself, leading to inflammation, and (if left untreated) disintegration of the bowel itself. I think that, somehow, the stomach bug I caught in 2005 upset the balance in my system, and my genetic makeup means my immune system overreacts (pre-eclampsia is also connected to the immune system).

Crohn’s can affect any part of the digestive tract (which is why I had mouth ulcers when I was pregnant). I’m fortunate that my disease is limited but it can still cause me a fair amount of misery. I can get quite severe pain, nausea, and even be sick as food travels through the sore sections of my digestive tract. Crohn’s can also cause an array of nasty (apparently unrelated) side-effects, such as arthritis, as I discovered a couple of years ago. It caused so much pain in my joints that I could barely lift the kettle, and climbing stairs was agony. I felt like an old woman at the age of 30.

Being in remission for a year or so really showed me how much my mild case of Crohn’s affects my life. I had so much more energy, and I found housework (almost) a pleasure because I no longer had to drag my weary body about the house.

It can be frustrating suffering from this disease. At its worst it is debilitating and isolating. If I am unwell with Crohn’s I don’t really feel well enough to go out, and even if I do there is the fear that I will urgently need the toilet and not be able to get to one. It can be an embarrassing illness, though after two pregnancies and a colonoscopy I’m far less prone to shame than I would have been ten years ago!

There was a time when I was quite ill and losing weight, and people kept telling me how great I looked. I didn’t mind the weight loss in one way (after all, if you’re going to have a nasty disease it’s nice to have a silver lining!) but it never crossed people’s minds that I might be losing weight because I was sick.

This page might really only hold interest for others with the disease, or perhaps someone who’s family member is suffering from Crohn’s. If you know someone with this illness, or anything similar (colitis and IBS can cause similarly debilitating symptoms), take some time to sit with them and ask how their illness is affecting them at the moment. They may look great, but actually still be very unwell.

If you live in the UK then the Crohn’s and Colitis Foundation may be a helpful source of information to you.

My first blog entry

~ hrh316 ~ Leave a comment

Wow. This is a little scary. I’ve thought about writing a blog for a long time. I’ve planned it in my head. I’ve written dozens of entries already (in my head).

But it’s one thing to think about writing a blog, and another thing altogether to actually put my thoughts and feelings and beliefs out there for anyone to read. As if I have any authority on the matter at all. As if what I think is worth consideration. As if I am ready and prepared for anyone to criticise me and my life.

Well, I suppose I do believe I have some authority on some things. I know quite a bit about being a Christian woman in 21st Century Britain. I have almost ten years’ experience as a wife, over six as a mother, and during my lifespan I have experienced depression, bereavement, friendship, rejection, work, buying and keeping a home (twice), emetophobia (fear of vomiting), planning a wedding, childbirth, pre-eclampsia, Crohn’s Disease, a caesarean, buying a car, potty training (twice), breastfeeding and bottle feeding, sleep-training, camping, air-travel, disappointment, hope, marriage, church life, and a whole lot of joy.

Things I enjoy doing are cooking, sewing, reading, writing, painting and taking photos (not especially good ones).

So any of these things, and more, might appear on this blog at any time. It doesn’t make for a good strapline does it? So I just summarised this blog as ‘living life to the full’ because that is what I want to do.

I don’t usually manage it, just so you know. I’m an idealist, so I sit around and think a lot about how things should be, and then go and mess it up.

But Jesus came so that I might have ‘life, and have it to the full’ and that is what I aim at.

So, in the coming days, if you come back (and I won’t blame you if you don’t) you will most likely find articles on being a wife and mother (since that is what I spend most of my time doing at the moment), a few on surviving Crohns and emetophobia (which I hope will make you laugh if nothing else), and some on craft and cooking. But running through it all will be this thread (I hope) of seeking joy and fulness and God in all of life, which is for everyone.

I hope this blog encourages you. I hope it makes you think. I welcome respectful disagreement – I love to be challenged in my views. My favourite people know how to do this without making me feel either stupid or inferior.

Above all I hope these humble pages lift you from the shadowlands to see the Reality we all desire.