It's Crohnly Pain

A few days ago, when discussing recent symptoms with my IBD consultant, I found myself describing my abdominal pain as “not unbearable”. I also joked that “well at least I've not been hospitalized yet!”, as if that’s some sort of barometer for how good or bad things are.  He asked me if I've missed any work in the past week or so due to feeling unwell and I said no, then felt deflated; as I knew that now meant he’d be thinking ‘well she can’t be that bad..’. I felt instantly that he would discount the rest of the conversation on those grounds. Whatever I said would now be disappointingly invalid as I’d been ‘well’ enough to attend work.

When relaying our conversation to a friend a few hours later, it lead me to think about how different these type of chats with my doctor are, now that I’m a relatively seasoned professional-patient. My tolerances for pain have definitely changed tenfold since my diagnosis all those years ago, and I’m certainly no longer squeamish at medical terms or photography like I used to be. I previously couldn't so much as watch an episode of Casualty without wincing, now I study pictures of my own colon with the same intensity and interest as I’d study a kitten’s wee adorable tiny face and whiskers.

I began to wonder if there should be a level I set myself in terms of what I should and shouldn't put up with. I suppose I already have one in my own head. An imagined line I can allow my body to cross before I am forced to take action. But what if I’m giving my body too many allowances? What if we all tolerate too much? And what of those who are the opposite and constantly bombard their doctors with every minuscule symptom? Are they wasting time that could be spent with a needier patient? It’s hard to gauge of course, because each patient is different. Everyone has a different pain threshold and everyone knows what they can and can’t handle.

I've fallen into a possibly dangerous habit of becoming more and more used to just sucking up the pain and trying to adapt to life around it. I compare particularly trying periods of pain to my condition pre-surgery, when I was unable to walk or even stand upright due to crippling agony. I remind myself that things aren't that bad so I really shouldn't complain. But what if I am tolerating something I don’t have to tolerate, or something that may well escalate into the same horror I experienced pre-op? I told my consultant about my faux-reassurances; “it’s not anywhere near what it was like before...” and he told me not to compare the two. He advised me that he is interested in treating my symptoms based on how I feel now. So I’m going to try to use my past experience to help educate myself on what might be happening in the present, not to berate myself for having allowed myself to give in to pain. Admitting you are in pain isn't a weakness, its showing the strength to begin to repair your body. 

Love Is My Disease

Dear Disease,

You and I have been together for a while now, and I think it’s time I was honest with you about how you make me feel.
We really have been through a lot together, and I don’t mean to apportion blame... but I think you are overdue a bit of a reality check.

I'd firstly like to remind you that in no uncertain terms, you are the principal and most relentless interference in my life. You are the single most infuriating thing I've ever experienced. At least since my corner-shop stopped stocking those big jars of Nutella. Much like that little bit of curly hair in my fringe that just NEVER sits right no matter what I do, you are pretty much a daily irritation. You call yourself a ‘chronic illness’ and it’s a fairly apt description. You’ve been a relentless pain in my neck (and everywhere else) since day one.

I'd love to be able to say I was fine before you came along but I suppose I really couldn't say that with complete honesty. I was internally all askew and I guess I always felt my body wasn't quite like other bodies. Some things just didn't seem to make sense. I don't mean to blow my own trumpet, but in my youth I had a fairly decent figure, I was pretty fit and active and could even occasionally look at myself in the mirror for more than 60 seconds without wincing. I took endless photos of myself and my loved ones and had lots of fun in amongst all the hard work of college and work, and more work. 

After you came into my life the photos dried up. The mirror and I became distant, and all that fun was swiftly replaced with completing endless crosswords in-between all the vomiting, shivering, crying and despairing, wrapped up tightly in hospital sheets.

If you recall we were first properly introduced when I was in my mid-twenties, but we’d later come to realize you’d always been hanging around since I was a child in some way or another. When you hospitalized me (AGAIN) at around 26, it was then I first heard your name and a little bit about you. I was confused, angry and devastated all at once. The doctors told me you were called ‘Crohn’s Disease’ and that you were incurable. The idea that I would be stuck in this toxic relationship with you forever seemed almost too much to bear. I didn’t choose you, you chose me. Like some awful arranged marriage where I was destined to live my life with you whether I wanted to or not.
Since we met, you’ve put me through so many hospital visits I’ve lost count, you’ve caused me to have parts of my bowel cut out, you’ve left me with scars, you ensure I’ll be on medication for the rest of my life and you routinely require me to have cameras inserted down my throat and inside my colon. You’ve investigated my rear end so often I can’t keep track, and that was just the weekend. You can be such an all-consuming disease, particularly when I’m in the midst of a flare up. There are times when you ensure almost every single part of me is in pain. You make even my HAIR hurt, how is that even possible? In fact I’m not even angry about that one, I’m almost impressed.

Under normal circumstances (whatever they might be), you have to be factored into my plans every day, and in everything I do. Talk about possessive. I wake up thinking about you and I go to bed doing the same. In waking I have to plan my morning routine around what state you’ve put my bowels in upon getting out of bed/and or having breakfast. In going to bed t night I have to consider my real-life-human-man-partner and if my incessant trips to the toilet will keep him awake, or whether I’ll be able to get closer to him than just a cuddle without feeling nauseous. 
I know I may badmouth you sometimes, (ok a lot of the time), and I’m sorry for that, but I want you to see just how hard you have made life for me. I suppose I love and hate you all at once. Bit of a conundrum aren’t I? Like most people, there are many things in life I love and hate in equal measures. For example I LOVE Nutella, but I HATE how small and awkward they make those jars – how are you supposed to get a normal sized knife in there?! It’s almost like they are FORCING you buy more…

At first, and for a good while, I hated the sight of myself with you. You destroyed my body and mind. You left me with scars, and internal and external irreparable damage. You caused me so much stress that I suffered constant pain and continuous pounding headaches. The medication you insisted I take made my hair fall out, gave me ulcers, made me pile on pounds or shed countless weight almost overnight. In those moments I watched parts of me drift away and felt less of Me. Less of a woman. 

You were the worst relationship I ever had. 

But we must persevere. It took me a long time to face the fact that I was never getting rid of you, but when that finally sunk in, my attitude towards you changed almost overnight. I realised I had to accept you as a part of my life and begin to make an attempt at living in harmony, rather than relentlessly trying to fight you. It all became just too tiring. I didn't like the idea of you taking away my independence, so I eventually resolved that I didn't have to let you. I had to take a bit of the control back. I had let you have the upper hand for too long. There was no equal footing in our relationship because you held all the aces. You would decide what we did and when we did it, whether or not I went to work, and you had the ability to hospitalise me at the drop of a hat. You were toxic for me. I came to see that if you had your way I would be resigned to my sick-bed watching yet another Breaking Bad marathon, in hospital, or worse, the morgue. I was playing a dangerous game of denial I had no chance of winning. 

 Now I know you are with me for life it's a little easier. I treat my body with the respect it deserves. At least until the cravings for mashed potato hit, then all bets are off. I realise I'm only punishing myself in the process of trying to fight you. I have to take care of myself because you’ve shown time and again you won't. I have to ensure I do my utmost to keep myself as well as possible, physically and mentally, and for the most part I do. Life gets in the way though and it's a struggle juggling you, alongside work/a social life/my home life.

You have changed my life in immeasurable ways, but not all of them bad. Having you as my illness has forced me to open up and allow other people in. It’s cemented my relationships with the best and most treasured people in my life, and reminded me how lucky I am. You’ve allowed to me to remember just how much I am loved. Anything that has the power to be felt over agonizing pain can’t be all bad. You’ve reminded me to love, and show that love every day with a ferocity that knows no bounds.

Having you in my life has also made me acutely aware of what I can achieve if I set my mind to it. If I choose to work alongside you and not allow bitterness and anger to eat me up, I can gorge on a determination that's hard to fake. When your own body tries to set limits for you, that's when your mind puts its proverbial foot down and forces you to take action. I've surprised myself in what I can, and have coped with and what I can do when I really push myself. 

You have also taught me an amazing amount about my own body. About bodies in general for that matter, and how incredibly they function. (Or not as the case may be). It's been a thrilling adventure for a woman who was once squeamish at the sight of her own nail breaking. I've been through so many toe-curling procedures and had so many implements inserted in so many orifices I've just had to get over that girlish nausea. And that was just the weekend.

You still interfere a LOT of the time, but when I’m able to be the 'old me', even with you tagging along, I absolutely relish it. Anyway, let’s raise a glass of nutritious (and rancid) smoothie to the rest of our lives together. You may make me feel weak but I am stronger than you think and don’t forget it. I realize now it is within me to maintain ‘me’. No one can cure me of you, and no one can tell me how to feel. It’s up to me to decide if I want to lie down and be beaten or get up and embrace the good stuff.

I love and enjoy my life despite you. Now who has the last laugh? 

Yours always, in Nutella,

Kathleen x x

Won't Get Stooled Again

Often a major problem with chronic illness is the sustained and prolonged periods of sickness. Incurable illnesses are just that; incurable, therefore patients have the displeasure of walking hand in hand with their conditions until their last days. Obviously if you are reading this in the year 3035 and there is a cure, and Crohn’s Disease and/or the majority of the human race has been wiped out, then hahahaHA how daft do I sound?! Plus what kind of loser are you reading a blog about disease when you could be jetting about the moon on some sort of robot dinosaur? Get a life.

Anyway, what I’m trying to convey is the feeling that in suffering from chronic illness you are never quite able to shake it off. However well you may be feeling at any given time, it’s still always there in the back of your mind. Every day you will more than likely find yourself thinking about it, worrying about it or at the very least talking about it. I say talking about it, because although this may not be on your personal agenda, it’s 99% likely someone will ask you about it. They can’t help themselves. After all, to people on the outside, you are more than just a person now, you are a patient. You know that saying about public speaking; ‘…just imagine them naked’? Well they imagine you in a hospital gown. With your rear-end on show. People are looking at you, and imagining your rear-end. That’s what I keep hoping anyway. These people will perhaps at the very least, tilt their head and proffer a sympathetic glance in your direction. There isn’t even anything wrong with this, it’s wonderful to know people care, but it’s also more than wonderful to go one solitary day without being the ‘diseased’ one.

On the other side of the coin, I’m not sure how I’d feel if people didn’t ask after me. Offended? aggrieved? Upset at their lack of consideration? Probably none of the above due to the fact that I’m an adult and well aware of the simple fact that others around me have lives of their own. They have worries, pressures, and occasionally, illnesses, all of their own. The world does not revolve around one patient. Not me, you, or either of our rear-ends. Your illness doesn’t trump another’s. The same can be said for patients within Crohn’s communities; bettering each other with symptoms and stories of woe. In my not so humble opinion, it’s harmful and pointless.  It’s unfortunately more common than you’d think and something I’d love to see stamped out. Crohn’s and most chronic illness are incurable but attitudes aren’t, and if we work together to change our approach and outlook, we may help to lift one another up rather than knocking them down. We are all in this together, we don’t have to suffer alone and we don’t have to feel put out by others actions. Sometimes if you feel that all people see is your illness, maybe it’s time to look in the mirror and see if that’s all you convey.

Anus Last Words

The fairly recent trend within the IBD community for flashing the flesh and proclaiming pride at your scars, stomas et al, has left me feeling decidedly conflicted. 

I am of course absolutely thrilled that Crohn's and other forms of IBD are being spoken about more openly; to, and by a wider audience, but I wonder whether the various fads and trends to raise awareness often tend to alienate rather than include. 

Personally I have always been pretty averse to joining groups and forums linked to Crohn's Disease because Ive never felt I've gotten anything from them. That may sound incredibly selfish, but I feel I already dedicate quite a sizeable chunk of my life to this condition. I write very personally about my own experiences, here, and on other sites, I accept emails, comments, posts from others day and night, and I always offer support where I can to sufferers and their families in my own minuscule way. 

I also live with this disease on a daily basis. 

I feel by becoming part of a group or jumping on certain bandwagons I am being led by the hand down a road I perhaps don't want to go down. 

Often I consider that because these various groups are doing 'good work' and 'raising awareness/money' that it must be cruel and even rude of me to decline requests to get involved. If anyone dares to question the validity or aim of these activities they often close ranks and show themselves as cliques only allowing access to a select few. The first rule of IBD club is that you don't talk about IBD club, if you will. 

Well I want to talk about it, and I can because I choose to buck the trend and seek every available resource at my disposal to educate myself on my disease and my future. It's important to get a balanced view. Don't settle for one opinion; it may be based on nothing but conjecture. 

On the flesh-flashing side, I don't want to show you all my scars because they are mine and mine alone. They still scare me a little bit, and remind me daily of the most traumatic and terrifying time in my life. They have gone from something once gruesome and hideous, to a regular part of my outer shell that I am still not convinced I'll ever be 100% comfortable with. That's my problem and no one else's. It doesn't make me any less of a person because I don't want to parade my milky white body all over social media. I'm really being selfless in saving you that vision to be honest. 

I suppose the point of this blog is to remind you that you are all individuals with your own minds, thoughts and feelings on how your disease affects you. You don't have to agree with someone because they've perhaps had the condition a million and one years longer than you. You don't even have to agree with anything I say. What the hell do I know anyway?! 

And therein lies the rub. You probably read my ramblings because you like my daft sense of humour/stumbled upon this blog by accident whilst searching for Anusol/are sleeping with me/or all of the above; but what do I know? All I have is my experience. That's all I aim to share with you, and maybe try to raise a smile in the process. Because I don't for a second wish to pretend life with Crohn's is easy, it's really not, but I do wish to remind you that the help out there really is endless nowadays: it's up to you which door you choose to go through to reach for it. If that means you knock on one and find it's not for you, then of course that's absolutely fine too. 

Your disease, your body, your life.

Oh, and it's spelt A.N.U.S.O.L if you want to continue your search..