Time to reflect…

Last time I wrote, I was shouting from the rooftops about my late arrival to the body acceptance club. At the tender age of forty, I had finally learnt to like (maybe even love) my body for the miracle it has, at last, allowed us to experience. The miracle of our tiny Beanie, now almost due. For the first time in my life, my body had actually begun functioning as it was intended. It may have taken longer than we’d planned, but it is giving us a gift we never thought we’d be blessed to experience – we’re finally riding the rollercoaster.

So many questions

The questions I have been asked the most, since announcing our pregnancy, are: ‘How has it affected your Crohn’s?’ ‘How have you been – health wise?’ and ‘Have you been very closely monitored?’ I thought, perhaps, I could answer these questions, among others, with a post about riding the rollercoaster of pregnancy with Crohn’s. Warts ‘n all.

Same, same but…oh so different

Every pregnancy is different, just as every woman’s body is different, meaning no two people will ever experience the miracle of growing a baby in exactly the same way. That said, there are plenty of universal truths of pregnancy with which every expectant mother will identify. For some women, there are a few key landmark points within a pregnancy for scans and hospital check-ups. The rest of the time, a woman will be likely to be monitored by her local community team.

However, for more women than many people realise, pregnancy is an even more daunting rollercoaster than they could anticipate. In fact, between 8 and 10 per cent of UK pregnancies are diagnosed as complex, requiring more medical intervention than most.

Naturally, ours falls into that category. At our first antenatal appointment, I clearly remember sitting with the Maternal Medicine Midwife, watching her input our data on the computer. Within a matter of seconds, a large, red banner had appeared across the top of the screen.

EXTREMELY HIGH RISK!

It was akin to all those government letters I had received during the first eighteen months of the pandemic, reminding me just how vulnerable I am. It wasn’t the most soothing of moments, but we took it in our stride, not being surprised to discover that I had been flagged as a risk.

Everything else aside, my age makes me more of a concern. Up until relatively recently, anyone in the UK to fall pregnant over the age of 35 would have been termed a geriatric mother. Thankfully, according to Mother & Baby magazine, that horrible phrase has been replaced with the slightly less offensive person of advanced maternal age.

Yet it is not just my old age ahem…my advanced years which raise alarm, but rather my extensive medical history.

Having had previous surgeries means my insides are loaded with scar tissue, immediately creating an obstacle course to navigate for anything wanting to get in or out. My Crohn’s Disease poses potential problems due to medication, inflammation and current activity.

But all these are matters for the medical experts to worry themselves with. None of this tells you how I’ve found riding the rollercoaster.

So, here goes…

Riding the rollercoaster – my way

Before I launch into this, I would just like to make clear that this post is not intended, in any way, to be a grumble. I have, however, been told by several wise women recently, that I am allowed to complain about the tough bits. It is, apparently, my right. Still, it goes against my nature. More to the point, I don’t want to complain. I would like to add that I wouldn’t change a single thing and I would take every bump in the road a thousand times over to get to where we are.

You see, I have appreciated every single miraculous change my body has undergone. I have loved the magic of feeling Beanie wriggle, kick and grow inside me. I have melted each time we have heard the heart beating – both of us agreeing that it is one of the best sounds in the universe.

That doesn’t mean it has been plain sailing. I don’t imagine I will ever be one of those women who looks back on pregnancy with rose-tinted specs. I will never say that ‘I loved being pregnant’ despite how excited I am to be here. There is a huge amount of pressure on women to feel that we have to be positive about riding the rollercoaster, no matter how rickety we find it, lest we should seem ungrateful or spoilt.

In reality, it has been challenging.

But why?

A lot of the things I have experienced are pretty common and challenge most expectant mums. For the first few months, I enjoyed noticing my body doing something and then, usually just days later, reading about that particular development on one of our pregnancy tracking apps. This was another endorsement that my body was working how it was meant to. It was exciting and reassuring. It was a pleasure to be doing something by the book for a change.

Some symptoms are not uncommon but have been exacerbated by my body’s unique version of normal.

The joint pain I experience as a constant has been much more intense throughout pregnancy. The oedema most pregnant women get in their feet and ankles as a result of water retention has come with added pain for me. For some reason, my whole legs have been swollen since about week 18, with no change when I rest or put my feet up. Insomnia, typical in pregnancy, has been unsurprisingly pretty bad for me. Pain has been increased by the internal scar tissue I have. A midwife explained that scar tissue will not stretch. Of course, this means that as everything else stretches to make room for Beanie to grow, the scar tissue simply bruises, causing me pain.

I function with severe fatigue from my Crohn’s, meaning my baseline energy stores are diminished. Add to that, the fact that this tiny person inside me is using all my reserves to grow and develop healthily, and you can, perhaps, begin to imagine how tiring the last nine months have been for me. So, when people told me: ‘Oh, you’ll love the second trimester. You’ll have a big energy surge and you’ll feel fabulous.’ that wasn’t quite the case.

Sh*t happens

In fact, in the second trimester, my Crohn’s flared up really badly, causing some severe gastrointestinal bleeds. Even after all these years with IBD, it never stops being frightening, standing up from the toilet to see the bowl filled with blood. This meant extra appointments, more monitoring, the decision to move my IBD care to Manchester and start over with a brand new team, and steroids. Again. I was also prescribed blood thinning injections much earlier than most at risk expectant mothers, in the hope that they might help supress the Crohn’s flare.

I have had to consider my medication very carefully, thinking about how I feel introducing extra substances into my bloodstream with Beanie on board.

Pain management has been a big one throughout. My immunosuppressants, which I self-inject every eight weeks, are too new to have any cast-iron evidence about use in pregnancy, making research a minefield.

The imperfect world

In an ideal world, I would be medication free throughout. I have been around the block enough times to know, however, that this world is far from ideal. Instead, we have had to seek advice, trust the experts, make decisions, have discussions, trust our instincts. We have been reminded , at every step of the way, that, if I am not healthy, Beanie is unlikely to be. Thus steering us to prioritise looking after my own wellbeing in order to prioritise Beanie’s.

I imagine most people think about their diet when there is a little life blossoming inside them. This has been something I have really struggled with. So many of the things I wish I could eat, knowing how well they would have nourished Beanie throughout, are things on my forbidden list. I find this hard at the best of times, wanting to eat more fresh and raw foods for myself. With Beanie to consider, this desire has been magnified. Since my Crohn’s flared up around the halfway mark, I have had to be even more cautious with what I eat, how much I eat, when I eat. I have needed to take the approach that something is better than nothing, meaning I have often been unable to choose the virtuous menus I would have liked.

It has been a tricky path to navigate.

Other things to consider

Very early on, we were told that an elective Caesarean would be the safest way for Beanie to be delivered. According to NHS UK, around 1 in every 4 women will have a planned C-Section delivery, either due to personal preference, medical advice or other reasons. Yet, despite the rise in numbers, there is still a feeling of judgement and something of a stigma surrounding this mode of delivery. As though this option somehow makes us less of a woman or diminishes our strength in some way.

From our perspective, if the consultants in charge of our care advise us that this is the safest way to bring our long-awaited baby into the world, there is no decision to make.

As it happens, I also have placenta praevia, meaning my placenta is obstructing my cervix, so the only way for Beanie to join us is by cutting me open anyway.

Meeting the Complex Caesarean Consultant (yes, that’s actually her title!) we discovered that for us, the procedure might not be the straightforward, routine op we had expected. She told us about all the potential risks, some specific to me as a Crohn’s sufferer, others more generic. A lot of this I find easy to compartmentalise. Having had surgeries in the past, I know the protocol. We have to be informed of all possible outcomes so that nothing can come as a shock. Some of this more medicalised line of treatment has been more overwhelming for Miles. I have, occasionally, needed to remind myself that, thankfully, his life hasn’t been spent under the watchful eye of consultants. Although the past nine months have made him more than a little accustomed to weekly hospital visits, routine scans, not-so-routine scans, lengthy consultations and long sit-ins in busy waiting rooms.

Past scars

Just last week, I had an MRI scan to ascertain the extent of internal inflammation and scar tissue damage so the team can decide whether to cut horizontally, as with a standard C-Section, or vertically, as with all my previous abdominal surgeries. This is a decision for which, more than likely, we won’t know the outcome of until D-Day.

Nevertheless, the consideration given to a midline incision has unearthed some emotional scars for me. Scars I will need to deal with as and when decisions are brought to light. On the plus side, reopening an old wound – both figuratively and literally – would give the existing physical scar new meaning. Instead of simply being the scar that came into existence from 3 life-saving operations, it would transform into the scar that came into being when Beanie entered the world. There’s my silver lining, should I need to find one later.

There are also practical implications of the decision. A midline incision has a minimum of twelve weeks recuperation, as opposed to the standard six to eight for a bikini cut. I know how to do it – after all, I’ve done it three times before – but it is a long time to be out of action with a brand new baby. I am trying my hardest not to worry about that, knowing that Miles and I will weather the storm and figure out a way to manage. However tricky it may be.

Doubt

There have been times during the pregnancy, particularly in the last couple of months, where I have questioned my body’s reliability. Issues and concerns have arisen which have caused unease and worry. Anomalous measurements on scans prompted conversations in quiet side rooms which I don’t want to put in black and white. Incidents of reduced foetal movement have always come with some version of the phrase: ‘Well, with all your other risk factors, let’s be extra vigilant.’

The added attention and the extra monitoring has usually helped us feel more at ease. But not always.

That said, throughout it all, Beanie’s heart has continued to beat so strongly that we have been told, on more than one occasion, ‘What a happy baby!’ we are growing. We take comfort in that and I remind myself that my body is doing just fine, thanks.   

It is probably time for me to wrap this up…

However hard this journey has been, it has been a strange novelty to feel aches and pains for an ultimately positive outcome. I know these challenges will come to an end, leaving us with the gift we’ve been waiting for. So I will say again – I wouldn’t change a thing. I would do it all again in a heartbeat and I am, in no way, complaining.

Pregnancy, like chronic illness, is not a one-size fits all. Everyone wears it in their own unique way and should be allowed to talk about their own particular style. We should give ourselves permission to be more honest about our experiences. It’s okay to say that something is tough. It doesn’t make us weak. Nor is it a betrayal of our womanhood. It is not a sign of failure.

So, how has it been for me, riding the rollercoaster?

It has been tough, miraculous and wonderful. It has been a rollercoaster I feel blessed to have been able to ride. A rollercoaster I would race to re-join the queue and ride again. And I know that this is just the beginning…