My Crohn’s story

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. 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 of 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 occurred 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 to a fairly small section of bowel, but this 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 section of my colon. 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.

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