Opening up about Crohn’s disease

Welcome back to A.P Writing everyone! I hope you’re all well. As the title suggests, I’ll be discussing why it can be so hard to open up about having crohn’s in this post. I’ve stated in numerous posts previously just how horrible having crohn’s disease can be, but in this post, I’ll be explaining why it’s even harder not being able to express how it feels to others.

Nobody understands how I feel
If you suffer from some form of IBD (inflammatory bowel disease), whether that’s crohn’s, UC, or colitis, you’ll probably have felt at some point that you’re all alone. When you try to explain to someone that you suffer from this invisible disease and they just stare back blankly, it can be frustrating. I’ve been there more times than I can count, but it’s not a reason to keep how we’re feeling to ourselves. Trying to educate people on some of the things we have to deal with is an important step in breaking the stigma surrounding IBDs. For someone who’s never felt the pain and fatigue that crohn’s can cause, it can be hard to comprehend. However, there are lots of people who do understand, who do want to learn about the affects of these diseases. Don’t ever feel scared to open up because you feel that someone won’t understand your illness; it is a part of who you are, and therefore important that they understand.

Isn’t IBD just IBS?
The answer to that question is absolutely not. Let me tell you from someone that suffers from crohn’s disease, comparing it to IBS (irritable bowel syndrome) can at times, frustrate the life out of me. Now, I’m not saying IBS is a walk in the park; it can also be a very nasty thing to have to deal with. I just don’t feel that the two can be compared, and worrying that people will compare IBD to IBS might prevent people from opening up properly. There are some similarities in the symptoms caused by both IBD and IBS, but the long term affects differ quite significantly.

I’m embarrassed by my illness
In response to the above, I’ll put this question to you: why are you embarrassed? I think understanding the answer to that question makes talking about your illness easier. Having an IBD can be embarrassing if you let yourself believe that it must be that way. I used to get really uptight about everything: going out, meeting friends, putting on weight, losing weight. The reason for this was because of how I perceived my illness would come across to others; this caused me to feel embarrassed by it. As I grew older though, It became clear to me that crohn’s is never going to go away, so why not embrace it? There are some really horrible affects that having an IBD can have on you and your body, but if you let them get to you, it will be hard to shake that embarrassed feeling. Being bloated is something I deal with on daily basis with crohn’s disease. I’m not talking about being a little bloated; I’m talking about looking like I’m 6 months pregnant. This used to prevent me entering any social situations because of how awkward and uncomfortable I felt, but I realised I couldn’t live my life like that. Being fatigued is also a bit of a struggle, but I try to manage my time and energy as realistically as possible. If we don’t explain to people about these things, how are they to know that we’re experiencing them? Being open and honest will take away some of that embarrassed feel and allow you to live your life too.

I feel awful
There will be times during your life if you suffer from an IBD when you feel truly awful. This could be because you’re having a particularly bad flare up, or perhaps you are going through a period where your medication isn’t working and you’re feeling incredibly fatigued. I personally feel that it’s important in these situations to be honest; if you’re ill and struggling, let people know what you’re going through. Of course, this is personal to the individual. Some people may prefer to recover quietly without making others aware, and I have to say that I can understand that mentality as well. I have a select group of people I talk to when I’m suffering from a flare up; I couldn’t go through it on my own. So, next time a friend contacts you to ask why you’ve been absent, perhaps it would be beneficial to open up and let them in a little. You might find that you open up another support network for yourself, and I’ve found that most people tend to be very understanding when you discuss how you’re really feeling.

It’ll be easier for everyone if I keep quiet
When I’m ill, I sometimes feel that I’ll be burdening someone by opening up about how I’m feeling. I feel that my problems will end up becoming their problems which isn’t fair. I used to do this all the time at work; I’d turn up feeling miserable and wanting to be anywhere else but there. The truth is I didn’t make anyone’s life easier by doing this, and more than once my employer sent me home because they could tell I wasn’t fit enough to be at work. By opening up and talking to them I could’ve recovered properly, and they could’ve organised suitable cover in time. It shouldn’t come to the point where you have to push yourself through fatigue, pain, and everything else that comes with an IBD. Your recovery is the most important thing, and unfortunately we have to become a little selfish in those types of situation. We have to put our health first; don’t be afraid to say that openly. If you’re not well enough to work or go out, then tell people; the only person you should be trying to make things easier for is yourself. So, put yourself and your illness first when you need to; don’t brush it aside because you feel like it’s less important than everything else.

Will people think I’m weird?
Having an IBD can, at times, make us feel uncomfortable about ourselves and how will be perceived by other people. There are things we have to go through that from the outside might seem quite weird. A few examples might include: colonoscopies, regular weight loss, poor appetite, and fatigue. It can be hard to grasp why someone would have to experience some of those things on a regular basis, and this is exactly why we need to talk to people so they do understand. You’re not weird because you have an IBD; it’s just a part of who you are, and that’s the truth. Like I stated earlier, I embrace it now. Having crohn’s has impacted my life in such a huge way that it is important to me that others understand that. I’m not worried about people thinking I’m weird anymore, and if someone won’t understand or show me support, that is their problem, not mine. Like I stated previously, I have a close group of people I talk to who motivate me and keep me going when things get hard. They don’t think what I’m going through is weird, and that support counts for a lot. I was particularly worried about starting a course of Inflectra treatment; I worried for a moment whether people would think that was weird. The more you open up the easier it gets though; you’ll have less pressure to bare and more people there to support you. Have a joke about things every so often, and laugh when things get a little scary because it really does make everything seem less daunting. That has been the only way I’ve made it through the last few months as my health deteriorated.

Will I be taken seriously?
I’m sure we’ve all been here before. You try and explain to someone the affects of your illness or how it impacts you, but they just don’t take you seriously. I’ve been told that my IBD is just another form of IBS; I’ve been told by people that don’t suffer from an IBD what will work and what won’t. While I’m writing this, I’d just like to point out that everyone who suffers from an IBD is different. What works for some might not work for others in terms of treatment, diet, and lifestyle. If you know someone with an IBD, listen to what they are saying and not what you’ve heard from someone else; there is no universal cure for an IBD, and each individual is fighting their own personal battle. When I get comments like those above, I switch off now. If that person isn’t interested in listening to what I have to say then they’re not worth the effort involved in trying to explain. The vast majority of people will take what you have to say seriously, and for those that don’t , let them be. There is no point getting stressed; that will only make the situation worse. Keep calm and open up too the people who do deserve your time; open up too the people who will support you and take what you have to say seriously. An IBD can be hard to understand sometimes, especially for people who haven’t experienced what they can be like. I feel this is because it is possible to enter remission; it is possible to lead a normal life when our IBD is managed correctly. However, that doesn’t mean it shouldn’t be taken seriously at all times. I’ve experienced recently just how volatile crohn’s can be; it can be like flicking a switch sometimes. It will always be there.

I’m going to finish this post by stating just how important it is that we keep opening up and talking about IBD. Raising awareness will break any stigma that surrounds an IBD, which will make suffering and living with one far more normal in today’s society. We shouldn’t live in an age where we are scared to talk to people about how our illness is affecting us; I personally feel if that is the case then we’re going backwords. Having an IBD can have a huge impact on someone’s life, and they shouldn’t feel like they need to keep that to themselves. Whatever form you want to take in terms of raising awareness is positive. It could be simply having a conversation with someone and telling them about your symptoms, or maybe it’s doing a charitable walk. For me, I’m trying to raise as much awareness through A.P Writing as possible, and as the my blog grows, hopefully so will the awareness surrounding IBD.

Thanks as always for taking the time to read through my post everyone! I look forward to writing the next one. Please feel free to follow me on Facebook and Instagram.
Adam

Where have I been?

Firstly, I’d like to welcome everyone back to A.P Writing. I’m so sorry for being away for so long; It’s been a tumultuous few months. I honestly don’t know where to start; apart from perhaps that this has been without doubt the hardest period of my life. As everyone knows, Covid-19 has swept across the world causing utter disarray, and like most of you I’m absolutely sick of it. We are winning the battle though, and that is something to be positive about. I must admit that recently I’ve struggled to find much positivity in things, especially when it came to my writing. So, what’s caused this? Put simply, I became ill. My crohns disease is currently flaring up which is making life quite hard. If anyone reading this has crohns disease then you’ll know exactly what I’m talking about. It’s debilitating, it hurts, and it leaves you feeling hopeless. Crohns disease is also an invisible illness, which means I might look well outside despite feeling absolutely awful on the inside, confusing right? The treatment I was on to combat the disease decided to stop working, leaving me losing weight and weak. Not ideal when you’ve got a ten-month-old son who can now walk cutting around the house is it? I’m now an MRI scan, a chest x-ray, two colonoscopies, and numerous Covid-19 tests further down the line, about to start a new treatment called Inflectra (Inflaximab). My tablets have doubled from seven to fourteen a day, but it could be worse I guess, my record daily tablet haul is twenty one. Inflectra, if you are wondering, is an intravenous transfusion that can last up to four hours each time. I’ll be travelling to hospital every 6-8 weeks for those transfusions for the foreseeable future, sounds exciting doesn’t it? All jokes aside though, I’m genuinely looking forward to my first transfusion because it’s a step in the right direction; it gives me something to hope for. I’m apprehensive as well because part of me is worried that this treatment might not work. The possibility of surgery in the future is something that has been mentioned, also. But lets not be negative right? It will be nice to have something to eat without feeling like Mike Tyson has punched me a hundred times in the midrift. That is one of the main struggles when going through a flare up: whatever I seem to eat causes the inflammation to react and hurt. I’ve been living on raman noodles since starting a course of steroids to combat the inflammation because they seem to be one of the only foods that doesn’t cause pain. My specialist IBD nurse has actually advised me to eat ‘trashy’ foods for the time being because they are easy to digest, anything high in fibre is off the menu. The only problem is that even the ‘trashy’ foods cause inflammation and cramps.

Losing my job while this has all been unfolding really didn’t help either; it came as a bit of a shock if truth be told. The stress probably expedited my flare up now I think about it, but what can you do apart from roll with the punches? It just seems that I’m getting metaphorically punched a lot at the moment. So, as a family we had to deal with losing my income; I immediately entered the crowded sector of people looking for work during Covid-19. As you can imagine, it proved pretty fruitless. However, I did eventually manage to find work for which I am very grateful for; my start date is due to be early August. The only issue is the position I find myself in now. I’m flaring and unsure whether being at work in the immediate future is the correct move, especially when starting a course of Inflectra treatment. We’ve already made plans for Chantelle to go back to work for a period while I recover, a decision I’ve really struggled with. I’ve always wanted to be out supporting my family, making sure we have all our finances in order. It’s been hard to grasp that sometimes things really are out of your control. One positive is that I’ll be getting to spend even more time with Ezra; he really is turning into a little rascal, but I wouldn’t change anything. In the last four months I’ve managed to watch him learn to babble, crawl, grow teeth, and walk. Not every father gets to witness those things as they happen, I did, and I’ll forever cherish those moments.

Despite feeling pretty rough for a lot of the last few months, things are definitely starting to move in a positive direction. At least I really hope they are. Taking the time to sit back and take stock of everything that’s happened is important, especially in times like these. So, that’s exactly what I’ve done recently, and believe me, you’ll be amazed just how many things you have to be thankful for when you think about it seriously. Life is tough at the moment, but I still have Ezra and Chantelle; I still have my health despite it trying it’s best to be a pain in my ass. We have a roof over our heads and food in the cupboards which is more than a lot of people in this ongoing struggle. Eventually, you’ll come to realise that things could be worse, despite things feeling incredibly hard in that moment. Although, there is one important thing I’d like to say: never tell a person who is suffering that there is someone worse off than them. They don’t need to hear that because most people need to realise this on their own. So, next time someone has a problem, health or otherwise, just think long and hard about what you’re going to say to them and whether your words will have a detrimental affect or not. Anyway, enough of the negativity, I’m feeling increasingly positive the further into this post I get.

Life can get hard at times, but the truth is that we need to keep moving along with it. I went through a period recently where I felt utterly hopeless and more than a little depressed, but I’ve come to learn that carrying on with life and the things that you enjoy is vital. So, I still believe in myself and achieving the goals I’ve set; it doesn’t matter if they are delayed, just that I don’t give up. At the beginning of lockdown I stated that I wanted to retrain and start a new career. With everything that’s happened it would’ve been easy to give up on that goal, but I’m pleased to say I didn’t give up. I’ve undertaken a proofreading and editing qualification with the aim of one day setting up my own little business, and I’m studying whenever possible. As always, I continue to read and write because I enjoy doing those things. I continue to try and make the most of the family time that I have with Chantelle and Ezra because the future is never certain; this year has proven that. So, that is why I’ve been quiet recently, but A.P Writing is back now. I’ll be putting a real focus into developing this blog, writing interesting content, and maintaining my health. This year and the things I’ve had to experience have made me more determined than ever, and it feels great to be back.

But You Don’t Look Unwell

Welcome back Everyone! I’d like to start this post with an apology, sorry for the lack of posts recently, life as it often does, has taken over. We’re back however and it feels great to be writing again. I’m going to discuss something in this post that I feel is relevant to pretty much everyone in their daily lives, whether you’re a new parent, suffering with crohn’s or simply just being the best version of yourself. So, what’s this thing that’s relevant to all of us then? Well, I’ll come straight out with it, personally I feel there’s a concept in today’s society that unless you look unwell, you’re not unwell. Now, that statements possibly a tad dramatic but there’s also a hint of truth behind it, silent illnesses are a real thing. We’re very good at putting on that perfect visage, getting up and going about our daily lives like everyone else, but do we really know what a person is truly feeling?

As you all know, I suffer with crohn’s disease. This is something that until starting A.P Writing I’ve kept to myself, it’s not particularly visible from the outside but it has a huge impact on my life. I’ll come onto how it impacts my life later in this post, but for now I’m going to talk about what’s made me want to discuss it, why now after years of being embarrassed? The truth is becoming a father has made me see things from a completely different perspective, if you don’t share these invisible illnesses they’ll just swallow you up, it’s okay to not be okay sometimes. Of course, crohn’s is my invisible illness but there’s more to life than crohn’s disease, you might be someone who’s battling depression, anxiety, perhaps you suffer from PTSD. The point I’m making is we cannot immediately see this in a person, we’ll take them at first glance, and at first glance everything’s as it should be. When that person says I’m not well we’ll automatically think ‘well you don’t look unwell’ , some people might even say it, I’ve had that many times and let me tell you it’s probably the worst thing you can say to someone suffering with an invisible illness. How is anyone meant to build up the confidence to open up if they’re put down before they can begin? I don’t think that many people if any do this deliberately, why would we? I think it’s perhaps down to years of associating real illnesses with some kind of visible form, that and the emergence of social media. News is so readily available nowadays and we’re so easily influenced by what we read, we’ll see that some celebrity is struggling and what a mess they are, their pictures will be spread over every magazine, always the worst photo of that individual. To the average person they’ll look at social media and think ‘I don’t want people to think I’m like that, these problems I’m having I’ll just keep those quiet I think’. Social media, in fact media in general is a fickle business, we all saw the tragic events that unfolded surrounding Caroline Flack. It’s unforgivable the role media played in her death, they portrayed her as guilty until proven innocent, the invisible illness she was suffering with, whether that was depression or something else was completely ignored, we weren’t asking if she was alright, assuming that on the face of things she was fine and she was probably too scared to open up to us.

Earlier in this post I said I’d explain how an invisible illness like crohn’s can affect my daily life, like most illnesses there are good and bad days, I’ll be discussing an average day. Now, believe it or not, most days start with a quick dash to the bathroom, poop number one never can wait. If I’m lucky I might get a sip or two of tea before it’s time for poop number two, sometimes poop number three comes before breakfast, but it’s normally after. Of course, we can’t go to work without poop number four making an appearance. I’m sorry for being so graphic everyone but that is honestly an average start for me and a lot of people who suffer with crohn’s. If I’m tired or fatigued, mainly at the end of the week, I might be sick in the morning as well, add to that the five tablets I take for good measure and the day’s off to a wonderful start. Ezra isn’t sleeping particularly well at the moment either so both me and Chantelle are quite drained before the days even begun. I’ll arrive at work feeling empty, despite it only being 8-30am I’m ready to eat lunch I’m that hungry, I’m drained after losing many nutrients through going to the toilet so much and I now have to pretend to be happy, I have to put on that visage we talked about earlier. The day will progress, I’ll eat lunch at 10/11am, end up buying more lunch to try and feel full up, I’ll think bout falling asleep at my desk, already thinking about getting home and going to bed. Eventually work will finish, I’ll come home knackered, spend some time with my beautiful partner and son, go for poop number five and six if they didn’t already come in the morning and finally struggle to eat dinner, after taking another two tablets I roll into bed and repeat all again tomorrow. As I’ve said that is an average day, a bad day would be a flare up which would likely keep me in bed unable to be much help or use to anyone. If you took me at face value however you wouldn’t think anything was wrong, I talk as you’d expect anyone would, act normal and don’t express what I’m feeling, but you can see what it’s like just to get to work sometimes. I consider myself lucky because my crohn’s is manageable, for some it really isn’t and they’re just unable to complete the things we all take for granted, like going to work or exercising. This is applicable for many silent illnesses not just crohn’s, depression is a huge taboo subject at the moment, we’re trying to raise awareness but still not enough people feel confident enough to come forward and talk about their problems. So, with all that I’ve discussed in mind, lets open up more and welcome others opening up to us, no more of the ‘but you don’t look unwell mentality‘.

The majority of people in our society are incredibly understanding and allow others to express whatever they might be dealing with, for that I’m very grateful. Moving forward I won’t be so quick to judge a book by it’s cover, I’ll also be trying to keep a more positive outlook on things, yes we all have to deal with, things we might not want to open up about but they don’t have to become limitations. I know this has been a slightly edgy post, (it’d been building for a while) but I promise the next one will be as I’ve said, far more positive. It’ll include the first few days of my new initiative Ditching the Dad Body which starts tomorrow. As always I hope you’ve enjoyed reading my posts, I’m incredibly thankful, please feel to leave a comment or a like, catch you all real soon.

Adam

Crohn’s – Turning Negatives Into Positives

Do you ever get the feeling that nobody quite understands you? We’re all unique in our own ways and that’s what makes us special, but what about those who have hidden demons bubbling below the surface? How do they cope? Apologies for the rather dramatic intro there, but I’m going to discuss a subject that’s close to my heart in this post, the debilitating disease that is Crohn’s. I’ll be putting a positive spin on what has over the years been a quite literally a huge pain in my ass.

So, what is Crohn’s? Well I’m glad you asked, I’d describe it as something that’s sole purpose is to bring you down, if let loose it can really wreak havoc. Some of the more commonly known symptoms include chronic fatigue, weight loss and loss of appetite, but in reality it can be crippling stomach cramps and sometimes hospitalisation. Oh, and I also forgot to mention the unusually frequent trips to the toilet, yes that’s right, you and your toilet will become good friends, you’ll be spending much of your time in the bathroom. Of course this does come with the odd perk, I can’t remember the last time I put any weight on, garnering much jealously throughout my work for being the guy that can pretty much eat his own body weight in food without worry. All jokes aside though, Crohn’s is no joke, It’s not something I’d wish on anyone. For those of you out there who are suffering with it, or have similar illnesses like Colitis, I’m going to discuss what I’m doing to turn my negative in a positive.

I will begin with honesty, when I was first diagnosed with crohn’s disease and for many of the years that followed, I was very negative. I’d spend hours at a time thinking why me? What have I done to deserve this? I guess it hit me right at the wrong time, I was 18 years old fresh out of school and on my way to university, put simply it came as a bit of a shock. Jealousy would often get the better of me, I was tall, super skinny and unable to enjoy those adolescent rights of passage. When my friends would be out partying I’d have a convenient excuse ready for why I couldn’t join them, opting more often than not to spend my time alone. Now, looking back I’m actually glad I went through this experience because it’s helped form the person I am today.

As you can imagine my confidence took a big hit from the ages of 18 to 23, I was so embarrassed of who I was, of crohn’s disease, but to the outside world I was probably just a moody individual angry at the world. I’m not ashamed to admit I suffered quite badly with depression, and it was around this point towards the tail end of 2017 that I made big changes in a positive direction. I’d taken a month long trip up to Scotland to visit family, it’s a beautiful country and certainly somewhere for deep thought. I asked myself some serious questions while up there, one in particular had real meaning, why am I letting crohn’s control me? See the silly thing is when you face your fears head on they’re no longer fears, they become a thing you used to fear and that’s something entirely different. I started going out as much as possible, when someone spoke to me I engaged in conversation. I’d had this crazy notion that everyone must think I was weird because of crohn’s, in reality that was utter nonsense. I’m no different to anyone else, yes I’ve got to take good care of my body but I now consider myself lucky, there are people in the world far worse off. I started to chase dreams and got realistic with things, funnily enough my major passion is now reading and writing, I’m currently working away at my own children’s story and if it weren’t for crohn’s I’d probably never have started writing it.

The biggest positive was yet to come however, I opened myself up to others and stopped wallowing in my own self pity, one thing I’d always convinced myself I’d never have was that one person who I could share with, because who would want me right? Well can you believe that when I opened up people actually listened? My confidence rose and I met Chantelle, now the rest is history, we have our beatiful baby boy Ezra and life is good, no in fact life is great. I’d always hoped for a family but never really thought it’d happen, now look at me, Ezra’s not even 6 months old and he’s already got me on my toes.

I’m going to end this post on another positive note and that is that we’re bigger than the problems we might be facing. Throughout my babbles I hope that point has come across, always speak to others but above all else believe in yourself and where you want to get to. Crohn’s was the worst thing to ever happen to me until I gave it a good slap and told it to bugger off. It hasn’t got a hold over me now, every negative it’s brought me can and is turned into a positive.

Thanks as always folks for taking the time to read my post, I really do appreciate it. I promise to make the next one a little more light hearted, please feel free to leave a comment and I’ll see you next time.

Adam