Living with Crohn's Disease

"You're going to carry this illness for the rest of your life. You can either wallow in that or make the most of what you've got."

2016. My A-Level year. A year that was already going to shape my future depending on choices I made regarding my next steps after high school. 2016. Also a year that ended up changing the game for me but in ways that I could not control.

March 2016.

"The results of all of the tests we have done over the last few months have shown a lot of inflammation in your intestines, particularly where the large and small intestine join. So unfortunately I do believe you have Crohn's Disease."

As a 17 year old, I don't think the impact of those sentences really took effect right away. I'd heard of Crohn's Disease. My uncle had been affected by it but unfortunately had passed away, meaning I couldn't speak to the one person I would have liked to have dissected this information with. The doctor went on, I kind of zoned out but picked up a few key words and phrases; "no cure, but we can treat it. What works for one won't work for another. Hard to know the cause. steroids. medication. injections. surgery. Flaring. Remission. Active. Inactive. Any questions?"

I remember leaving the doctors office that day sort of numb. Not anyway emotional, more sort of empty and not really sure how to feel. I headed straight to the blood testing area and had more blood taken for what felt like the one hundredth time. I used to dread this procedure. But after all the testing and having lived with Crohn's for over 4 years now, having a needle shoved into my arm has become a regular occurrence, but I'll touch more on this later. Essentially, I want to share my experience of this disease here. I'm very open about my condition and about the effects Crohn's has on me, but what strikes me most often when I say the words, "I have Crohn's Disease" is that I am usually met with, "sorry, I don't actually know much about that." There's absolutely no shame in admitting when you don't know much about something, but this just illustrates why I'm here, typing these words. I think even some of my friends and family will appreciate these ramblings because while I'm open about it, many people don't really know the full story or extent to which I'm affected. So here we go. Fasten your seatbelts kids. We'll go from the start.

What even is Crohn's Disease?

"Crohn's disease is a lifelong condition where parts of the digestive system become inflamed. It's one type of a condition called inflammatory bowel disease (IBD). Crohn's disease affects people of all ages. The symptoms usually start in childhood or early adulthood. The main symptoms are: diarrhoea, stomach aches and cramps, blood in your poo, tiredness (fatigue), weight loss. The symptoms may be constant or may come and go every few weeks or months. When they come back, it's called a flare-up."

Lovely little definition for you, courtesy of the NHS. That's it in a nutshell. But I actually feel like this really miss-sells Crohn's and somewhat "lightens the blow". I really do try not to be negative about it but honestly, it's intense. It's hard work living with something that affects your body day and daily. The best way I can really describe it to people is that it feels like you're being stabbed from the inside out. Your body is essentially attacking itself and can't cope when you feed yourself the wrong foods. But this is the "fun" guessing game part (absolutely joking, there's nothing fun in it at all), what are the wrong foods? "Is there just a list of things for you to avoid?" I hear you ask. Unfortunately not. I only wish it was that simple. Crohn's is a fairly misunderstood condition. No one can pinpoint a direct cause. It's thought that genetics, the environment and the foods we eat are all contributing factors, but in my mind, that still feels pretty vague. As such, I gave up a long time ago on trying to understand "why me?" and where this has come from. There is so much freedom in acceptance, and this is no different. As well as this, there's no cure as of yet. If we don't know what causes it, I suppose it makes sense that we don't know how to fix it yet. So you can imagine why it can be very frustrating on the bad days, because medication only really does so much. Let's get into it a bit more.

Symptomy-type things (what made me suspicious of what my body was up to)

2015. Roughly a full year before I had a diagnosis, I slowly noticed myself in pain when I ate (it was hard to miss). It started with dairy products and over a number of months it escalated to be that absolutely any crumb of any type of food that touched my lips would have me hunched over in absolute agony. The worst times had me lying up my hallway, trying to lie very still as this seemed to be the only thing that soothed me in any way. There's one particular time I remember this happening and my parents standing over me as I lay there, trying to decide what to do. Naturally, I ended up in A&E overnight and only felt better once I had boked all round me. Lovely. But also reality.

So as a result of the pain in eating, I eventually wasn't able to eat very much at all. This then resulted in the obvious; weight loss. I touched on this in my previous blog post about body dysmorphia, but I became quite thin for my height quite quickly. My mum will tell me, it was quite a worrying time because I had all of this unexplained weight loss and pain and no answers for the best part of a year. I also experienced the other symptoms mentioned above in the NHS definition of Crohn's. There was the "let's not talk about poo" symptoms (but sadly that was real life), I had cramps like I had never experienced before every time I ate and the fatigue I felt was unreal. I essentially became a toddler again for a year of my life and couldn't manage to get through the day without a nap when I came home from school every day. Some of my friends will laugh at this because if they couldn't get hold of me for a while, they all knew it was because I was napping.

Something else that stands out in my mind is the unbelievably intense heartburn I felt after eating (if I wasn't in excruciating pain). I (and many of my friends, I'm sure) remember living off Rennies in a bid to combat the heartburn. Apparently this was a major mistake. Rennies is very harsh on your tummy and actually probably made matters worse, but I only learned this once I had my diagnosis.

Tests

My life became one giant test. I was revising for my A-Levels at the time and school was like one constant exam in preparation for the real deal. Then outside of school, I was undergoing every test under the sun over the course of about 10 months, so that the doctor could try and understand why my stomach hated me so much. It started with an ultrasound scan (weird feeling, obvs made me think of pregnant women). That unfortunately didn't tell us much. Back to the drawing board. Then the doctor made some suggestions I did not enjoy. Endoscopy and colonoscopy tests. One is when the camera goes down your throat. The other, well it's the other way (I'll let you come to your own conclusions on that one). Both very uncomfortable as you have to fast for about 12 hours beforehand, they make you drink this vile tasting concoction so that your insides will glow when they have a look basically, and then you're pumped full of air to make the picture clearer (I think, I didn't really ask questions, more just wanted them over asap). But as uncomfortable as it was, I lived to tell the tale and they actually helped reach a diagnosis so I'll not hate on them too much. The final test I had, which seemed to confirm everything, was an MRI scan of my tummy. Again, more gunk to drink, but again, more answers which helped form a diagnosis. The prognosis was as the doctor had said; inflammation where my large and small intestine join. Apparently this is where you absorb a lot of nutrients, which helped to answer why I had lost so much weight, as the inflammation meant I wasn't absorbing things the way I should have been.

Response and Treatment

Once I had the diagnosis, I felt somewhat relieved. I was just glad to know I finally had an answer because naturally, it had been a long year filled with uncertainty and confusion about my body. I think I hung on to this positivity to get me through this stage. I remember feeling like I should have been more upset following my diagnosis because of how others reacted. Someone literally wrote me a letter telling me how sorry they were to hear about my diagnosis. It was entirely well-meant and I did very much so appreciate their concern and prayers, but it also triggered something in me that suggested I should be more emotional. When I think about it, my response to my diagnosis genuinely surprises me to this day. If you know me, you know I am quite an emotional person. But in this case, my response was simply "being upset will do nothing for me. I can't change it, so I'll learn to live with it." That's why I selected the quote at the beginning. I had a choice to make that day. I could let Crohn's consume me, or I could remind myself that I still had a whole life to live, just with this little extra feature.

I started a course of steroids, anti-inflammatory medication and a load of other things that I now forget the purpose of, but all in all; 13 tablets a day was my reality for a while. I remember thinking to myself, "17 years old and pumping myself full of drugs on the daily". But I also had to remind myself that if it kept the pain at bay, it was worth it. I also had blood tests regularly to monitor the impact of medication on my liver, so that has also become second nature now. Looking away and whinsing a bit. But it's a cheap price to pay to know everything is as it should be, or perhaps something needs a little adjusting.

Since then, I have been on a range of medications, but I am happy to report that the number of tablets I take daily has been reduced to 2. 2 tablets every day and an injection once every fortnight. Initially when I started the injections, I freaked out. That was probably the most panicked I have felt in relation to having Crohn's. Injections suddenly made the whole thing seem so real. I suppose because people take meds every day for different reasons, but injections maybe just aren't quite as common. I'm now nearly a year into taking the injections and they just form part of my routine. That's the thing about having Crohn's, it's now just part of me. I don't see it as a negative, it's not exactly a positive, but it just is. I can't really explain in any other way. It's just me.

Daily living

Don't get me wrong, I'm not exactly labelling myself here as "that girl with Crohn's" because something I remind myself of daily is "I have Crohn's, Crohn's doesn't have me." AKA, my entire being isn't made up of the fact I have Crohn's. I don't implement it into every conversation I have, and half the time people don't realise I have it, and that's grand by me because I don't want it to label me. I feel I have found a good way of managing it now and I've realised that it doesn't have to hold me back. There are days when I know I am flaring. My tummy is kicking off something shocking or I can barely keep my eyes open, but I am alive. God has granted me another day to live, more air has entered my lungs and so there's still so much to be thankful for. I have actually been very blessed with it because I know there are people with Crohn's who experience much heavier symptoms, some that have even required surgery to remove part of their digestive system and some that live with a stoma bag. I obviously don't know what the future might hold for me, but for now I am counting my blessings that for the most part, I can control the pain with medication, by noting the foods that hurt me (there's that guessing game) and being intentional with the things I put into my body.

I deliberately titled this post "lLving with Crohn's Disease" because that's exactly what I try to do. It's not surviving or tolerating or making do, it's living. Crohn's Disease or any other life-long condition for that matter, only has as much power as you give it. I take its hand and it comes along with me, doing this life thing. I know I can't choose to let go of it, but it's much easier to cope with when it's like I actively choose how to handle it. Crohn's hasn't stopped me from doing things because I haven't allowed it to and because God has given me the strength and energy I've needed to get through the challenging phases. These days Crohn's looks like the occasional nap, cramps when I have too much dairy or caffeine, and hitting a wall after a busy day. But I'm much more aware of how to handle myself and I'll know when certain foods are and aren't a good idea. Obviously it would be ideal to not have to contend with it, but I am so thankful for medical staff with the knowledge to help, support and treat conditions like this, and for a God who goes before me in all things and was never surprised by my diagnosis or what came in the aftermath.

If this has affected you in any way or you are also a fellow IBD queen (or king) then please get in touch! While Crohn's is become more common, I actually only know one other person with Crohn's so hit me up for some moral support.

Crohn's is more than a dodgy tummy and toilet troubles, despite what you may have been led to believe. If you have Crohn's or something similar, I hope you never feel any shame in sharing your story and being truthful with the reality of your journey. IBD does not detract from your worth, beauty or your right to self-love, and I hope you never forget that.

All my love,

Charis x