An Open Letter to Surgeons Everywhere:

Firstly, I love you. 

You saved my life. 

You've also saved the lives of countless people I love and I am eternally grateful to you for that. You stitched me up so wonderfully that my stomach has a pretty cool scar akin to that excellent stitch work that got me an A+ in Home Economics from Sister Patricia.

 

But let me take a moment to reflect on my own personal experience with you and your fellow slice n' dice specialists...

We all know you are uber-skilled and uber-intelligent. We know you deal with life and death situations on a no doubt, daily basis. You probably lose patients regularly through no fault of your own. That must be a heartbreaking thing to get used to and take a level of stoicism most of us 'normal' people would find hard to muster. 

We know you are busy men and women and have demanding and hectic careers. 

But we also know you are human beings with hopes and fears just like us. Therefore when we are in a position where we have to talk to you it's because we are really sick. And probably pant-wettingly terrified about what's ahead. 

We are of course well aware there are people (on much lower pay grades than you I proffer) who are employed to assist you, and help to comfort us worried patients. But sometimes it's important we have a touch of reassurance from the man or woman who is physically going to be slicing/removing/inserting things into our bodies. I don't know about many of you, but when a man is at the stage where he's suggesting insertion, you've usually had at least a few dates/a drink or 40 beforehand. AMIRITE?! 

When a patient is brought to you to discuss their health, it's important to remember that pretty much every alternative has been considered beforehand. If our consultant or specialist is suggesting surgery we are now in a certain frame of mind. We are filled with uncertainty, fear and overwhelming hope. We are either in a lot of pain/very ill or at risk of becoming so without your healing hands. If you don't feel surgery is appropriate for us, please discuss this with us and perhaps explain why not. Don't pummel us into insignificance with science and phrases we don't understand. Consider how much your words can affect us. In particular those of us with chronic and incurable illnesses. Bear in mind that with an incurable condition we rarely have a light at the end of the tunnel. We won't ever be 'cured' but we may be able to feel better. 

We are not naive enough to fail to grasp that with surgery comes complications, cost, time and resources. We do realise you have these issues to consider before agreeing to perform surgery, however do not assume we are as unintelligent to gloss over the idea that the outcome for us is that WE MAY DIE. 

We don't want to be in a position where we need surgery. We aren't desperate for attention. We aren't exaggerating our pain. We understand the risks and put our faith in you because we feel there is no alternative. Our lives are either spent in unending pain and misery or we take the risk to possibly gain some form of quality of life. We don't need you to patronise us or attempt to baffle us with science. 

We want you to help us get better and we want to know the person we've entrusted to do that wants that too. 

Keep doing that magic with your surgical paws. We are all the better for it. Just be a wee bit nicer before you pick up the scalpel that's all. 

Yours, minus some diseased bowel, 

Kath x x

Did I Tell Loo..

Firstly, I’m well aware the topic of this blog isn’t particularly new ground to tread. It’s fairly tired material and spouted on an almost regular basis across health-sites and blogs. However as I’ve personally been pretty unwell lately and have encountered almost all of the following phrases, I felt a wee refresher was overdue. For that reason I’ve compiled a comprehensive list of the 10 things people with chronic illness do NOT want to hear. Please delight and disgust in equal measures, and utter them at your PERIL!

1.       ‘But you don’t look sick...’

(See also: ‘You look great! You must be feeling better!’)

Without a shadow of a doubt, the above phrase is the resounding Number One (or should that be number 2?! LOLZ! TEEHEE!) on every list of things NOT to say. It’s the single most infuriating thing anyone can say to anyone with a chronic and invisible illness. The frustration at these 5 words mainly stems from the insinuation that you as the patient, may be either lying at worst, or embellishing the truth at best. After many years of suffering from Crohn’s Disease myself, I’m still not even sure what the correct response should be when someone spouts this gem.  I’ve tried several retorts, from the faux-patient; ‘Well it’s an illness on the inside so it can be hard to tell just looking at me..’ to the almost explosive rage of ‘Are you calling me a liar?!’ Coincidentally, neither of which the Judge thought were good enough grounds for beating my colleagues senseless. Seriously though, it’s a hard statement to do anything with, and one which shows seemingly no concern; just judgement. At least that how it comes across in most cases. Invisible illnesses are at their most difficult when we, as patients, have to attempt to express how much unyielding agony we are in under the surface, when the outer shell looks like you’ve just stepped out of a Maybelline commercial. Pain and a plethora of other symptoms can strike at any time, completely unexpectedly in some cases, and without warning, so please don’t assume the packaging matches the product within, without all the facts.

So what to say instead?  - How about asking about our IBD if you don’t understand and would like to? Or if you don’t care and just want to be a Bitchy McBitcherson about it, nothing at all is just as good.

2.      “My friend/colleague/family member has it and she’s coping really well…/really badly…”

(See also: “You just need to learn how to manage it”)

This comment and all its different forms can be incredibly damaging to patients. It’s perhaps most detrimental to those who are recently diagnosed and still unsure of the condition they have been lumbered with and its magnitude. It’s a human instinct to share experiences, and knowledge. Having things in common with others is one of the quickest ways to build a bond, so I understand why those who hear that patients have IBD have an urge to share what they know of it themselves. However, in my experience, these nuggets of information from non-patients are often very harmful to our state of mind. In the case of a comment implying someone they know is doing better than you, it almost implies we aren’t quite trying hard enough, or that we are lying down to our illness. In the case of hearing horror stories someone they know is doing much worse it can lead to panic, massive anxiety and uncertainty about the future.

So what to say instead?  - “My friend is also a sufferer, I’m always up for learning more about the condition so I can help you both!”

3.      “You’d feel better if you just relaxed/took a holiday...”

(See also: “I read about some alternative therapies, have you thought about trying...”)

First things first, we have thought about everything. There isn’t a treatment, or potential medication left unturned in our quest for intestinal normality. But our illnesses regrettably don’t have a cure. Patronising us with such comments as ‘take a break’ won’t help. We’ll still feel awful and we’ll still have an incurable illness. And no we’re not trying to be negative, just realistic.

So what to say instead?  - “Wish you could get a break from your illness!”

4.      “Why are you always tired?”

(See also: “Everyone gets tired”)

Prolonged fatigue is an incredibly common symptom of most chronic illnesses. Fatigue isn’t ‘just’ tiredness. It’s intense and unending exhaustion. No amount of sleep is ever enough to shake it off. A nap or an extra hour in bed here and there just won’t cut it. People who suffer from incurable illnesses understand what it means to be TIRED. They feel they make collapse if they don’t catch a few hours and yet it’s still never enough. When people question this utter exhaustion it’s both upsetting and infuriating in equal measures. We know everyone gets tired, but not everyone has everyday life to deal with and a chronic illness at the same time.

So what to say instead?  - “Anything I can do to lighten your load?”

5.      “You just need to make some changes to your diet”

(See also: “Should you be eating that?”)

Please, please don’t tell us what/where/when to eat. When we can eat it’s like Christmas Day, and when we can enjoy a meal without a hint of pain or nausea, it’s like we’ve reached VALHALLA. Food and drink and IBD patients have a notorious love-hate relationship whereby we often struggle to maintain a healthy weight. When we can eat, we can be utterly and almost instantaneously floored by incredible abdominal pain, or find ourselves getting up close and personal with the porcelain for the remainder of the evening. Concern about our diets is natural for those who care about us but It’s very important we don’t feel under scrutiny whenever we are eating in company.

So what to say instead?  - “What can I make you to eat?”

6.      “You’re lucky you’re always so thin”

(See also: “Have you gained/lost weight?”)

Weight is a very delicate subject for IBD patients. We can fluctuate from drastic and life-threatening weight loss, to piling on the pounds through medications such as ‘hamster-cheek’ steroids.  Losing weight is rarely a positive for us. In fact it’s a sign things are going downhill health wise. When I was at my sickest I had lost 3stone in a month and dropped 2 dress sizes, and most horrifying, 5 bra sizes. It’s no fun being ‘skinny’ with an incurable illness.

So what to say instead?  - “How can I help you get that weight back on?”

7.      “It will get better, just be patient”

(See also: “You’ll feel better after your op/meds/a good meal”)
Again the incurable part rears its ugly head. We won’t ever get better. We may at some point feel healthier than when we’ve been at our lowest medical ebb, however time won’t heal IBD. It’s not a cold or flu where in a few days we will be fighting fit again, we’ll be fighting our conditions for many, many years to come. And if that sentence alone sounds depressing, imagine living with it.

So what to say instead?  - “I hope you start to feel a bit perkier soon”

8.      “Are you in the bathroom again?!”

(See also: “Must be great to get some many extra breaks!”)

It may be hard to believe but IBD patients don’t actually want to spend hour after hour in excruciating agony, clinging on for dear life to a radiator or a sink or whatever is closest to hand. Just a heads-up, we aren’t actually hiding in there, we are forced onto the porcelain throne through no fault of our own. It’s actually not ideal for us to be ensconced in lavatorial duties as we also have lives outside of our defunct insides.

So what to say instead?  - How about no comment at all? Or perhaps a gentle question as to whether there’s anything you can do? It’s not rocket science.

9.      “You’re too young to be sick”

There is no age restriction on illness. IBD research has shown it is most prevalent from teens to people in their 30’s. However like most chronic illnesses it really can strike any age at any time. Therefore the idea that age is a barometer of health is utterly redundant in most cases. IBD has many other off-shoots of the condition such as arthritis and joint pain, and funnily enough it’s no fun to be a teenager and having to sit down whilst out at the local discothèque.

So what to say instead?  - “I feel for you!”

10.  “It could be worse…”

(See also: “You should consider yourself lucky”)

I’d like to think it goes without saying that patients with any existing condition, and as a matter of course EVERY HUMAN BEING ALIVE, knows that things could always be ‘worse’. But what a redundant concept that very phrase is. I’ve never been sure what it’s meant to instil in the recipient; grace, embarrassment, silent reflection? It certainly makes me want to silently reflect on the bodily harm I could do to the person saying it, and not much else.

So what to say instead?  - Nothing. How about a hug?

Toot Toot

I’m generally not one for blowing my own trumpet. There are many reasons for this, one of which is being brought up in a small Scottish village where if you aimed for anything more than a job in the local corner shop you were getting ideas above your station. Another is having given up playing the trumpet when I was 8 to pursue a short lived career in running up and down hills with boys after school instead. But it’s mainly because I find the whole idea of drawing attention to myself completely and utterly abhorrent.

In this day and age of ‘selfies’ and social networking everyone seems to know everything about everyone else, including friends of friends, and people who are complete and utter strangers. I’ve met people in ‘real life’ and felt I already know them just from seeing their visage popping up on my computer screen, or from somebody I know having ‘liked’ something they once said. We make judgements on people from their ‘profiles’ rather than what they are actually like. Ideally I could just live my life without all of that, without Facebook, Twitter et all. Just live in the moment and enjoy looking at pretty things instead of my first though being what Instagram filter would look best on them. But in reality it’s one of my biggest vices. I’m embarrassingly hooked on it all. It’s the urgency and the validation; ‘15 people have liked my photo so I must be attractive!’ It doesn’t matter that the man I love and my Mum and Dad have been telling me that since day one.  

I hate the idea that validation of any area of my life from strangers seems more genuine and important to me than people who actually care about me. I’m certainly working on that, and I fear I am not alone in that way of thinking. I think it’s mainly because I’ve assumed that those who love me would perhaps bend the truth slightly to appease me or avoid hurting my feelings. Because they care they would say that I really do suit that pink shell suit, it brings out my eyes! Or that that piece of writing where I bear my soul about the devastation of living with a chronic illness isn’t actually that depressing to read.  

But what has all of this got to do with Crohn’s Disease I hear you cry, and not without good reason. Well mainly it’s my attempt to pull myself out of insecurity and into the real world where people are actually proud of their achievements. CAN YOU IMAGINE IT? It’s been brought to my attention recently that nothing in life ever came from sitting back and waiting for it to happen and recently I’ve fallen into that trap. The fact that I feel like I’m at deaths door a large chunk of the time definitely plays a part in that, but I am slowly learning to take my own advice and stop lying down to my disease. Literally, and metaphorically.

In the past year I’ve written a book about my life with Crohn’s. I believe it to be pretty good, but the more I’ve thought about the reality of people actually reading it the more I start to think it’s essentially 50,000 words of garbage. I’m now stuck in a terrifying limbo of having zero confidence in myself and taking the plunge and getting it out into the world. The thing is, I know that those of you who read my blog and tell me you like it don’t have to. You take the time to do so because you want to and that is very encouraging. Don’t get me wrong, I can handle it compliments over a phone or a computer screen but if you venture into telling me I’m a halfway decent writer FACE-TO-FACE I will go redder than my intestines after a scope and collapse into a blabbering mess about how daft you are and change the subject at the speed of light.

My blog is nominated for a UK Blog Award. I’m also nominated for 3 WEGO Health awards. This is all incredibly exciting and certainly flattering, but again I have zero confidence in winning. And that’s ok! In my case it genuinely IS just nice to be nominated. I feel my confidence build and start to believe I have some talent a little bit more day on day and that in turn helps my health. If I’m anxious I’m ill. If I’m stressed I’m ill. So I’ve decided just to enjoy the ride and see where it all takes me without worrying about a thing. Focusing on what’s important, and that isn’t winning awards, its reaching out to people who are struggling and helping in any way I can. Amazingly this blog has given me an incredible platform to do just that and for that alone I am extraordinarily proud. I’m polishing up my trumpet in the event that one day I’ll feel confident enough to blow it.

P.S. Thanks a million if you have voted for me so far. I genuinely haven’t felt this thrilled since I won a pair of 40denier women’s tights for my Mum in my Primary School raffle. If you haven’t voted for me, and that’s fine too, I’m not a violent person, and you can do so here:

WEGO Health Activist Awards (I’m nominated in 3 categories; Best in Show – Twitter, Best in Show- Blog and Health Activist Hero) –

https://awards.wegohealth.com/nominees/34

UK Blog Awards 2015 (I’m in the Health & Lifestyle Category and public vote opens on 10^th Nov) -

http://www.blogawardsuk.co.uk/ukba-2014-whats-it-all-about/

xxxx

I Feel Pity, Oh So Pity..

In being a ‘professional’ sick person, you will encounter people’s pity on a regular basis. It will mainly be well meant of course; a head tilt and pitiful glance from a nurse caring for you, a fellow patient watching as you violently throw up your cold toast, or a doctor looking at your back end and shaking his head disdainfully. These particular looks may even come from those closest to you. It will feel very strange. Especially if you happen to be someone who prides themselves on staying ‘normal’ in the face of a distinctly abnormal illness. It can feel as though you are being treated as a second class citizen. You are not. At least not by 99% of these people.

What can appear as pity may just be consideration and hurt at having to watch you suffer. Let’s be honest, we could all use a bit of consideration from time to time. Chiefly when you are feeling awful all day, every day. Inflammatory bowel disease and all chronic illnesses are hard work. They are challenging, discouraging and physically and mentally exhausting. And that’s just the good bits! LOL OMG TEEHEE!

But what of those without a long term illness? Do we as patients pity them? I suppose it would be easy to feel pity for the majority of those ‘well’ people, after having been through the health-mill. Without having been at death’s door they may never fully be able to appreciate the simpler things in life! How it feels to truly appreciate a hot bath, or a day off, an extra hour in bed or simply be able to get through the day without 45 toilet trips.

I know I for one, have a new found respect for the healthcare system since I became ill. I hadn’t realised just how much we take doctors and nurses for granted and how (literally) life-or-death their jobs can be on a daily basis. I’ve cried on nurses’ shoulders and they’ve listened while I’ve wallowed in misery, their jobs are so, so much more than merely attending to cannulas and giving bed baths. People seem to forget how much they tend to patients emotional needs as well as physical. That’s why is OK if they give me a glance that says they perhaps pity me. I’m their patient.

It’s also tolerable if my Mum tilts her head and says how sorry she is for me, because it’s done out of love.  Sometimes it’s important to choose your battles. Before you get irate at someone’s glance in what you perceive to be the wrong direction, take a moment to decide if there is anything more than genuine care behind it. You’ll usually find the people who ‘pity’ you want nothing more than for you to be well.

Ten Pin Bowel-ing

There is a certain, fairly unattractive attitude that can rear it's head from time to time in living with a chronic illness. It applies to both patients and those around then alike. There's nothing particularly wrong with it, but it can be dangerously catching. Patients of chronic illness may find themselves becoming increasingly frustrated with friends/family/colleagues who complain of ailments which can appear decidedly trifling. 

When you are (perhaps, barely) coming with an array of horrendous symptoms and feeling like you've been run over by a 10 storey bus OVER and OVER and OVER... It's hard to sympathise when the person by your side has a sniffle and is complaining as though they have mere moments left to live. It can be hard to bite your tongue when all around you, people are suffering from seemingly nothing more than acute cases of hypochondria. 

But what to do for the best when encountering these people? Grin through gritted teeth and sympathise, or tell them straight that you feel they are acting like toddlers and to get over it? Neither is a particularly pleasurable option, let's be honest. Pretending you feel for them generally makes them feel slightly justified in their whining, but does nothing but cause frustration and a bubbling rage inside your already decidedly burny-burny guts. On the other hand, getting vocal on how selfish and dramatic you feel they are being can lead to massive rifts in relationships and perhaps finding those people who were once your biggest supporters drifting off into the friendship ether. 

For me personally, I tend to go for my own form of option 1. I really wish I didn't but I find it abhorrent listening to people complain of something which amounts to nothing. Not that I WANT people to be ill of course because I absolutely do not! It's just that I've found my sympathy for people suffering from chronic illness much more acute and intense since I became ill myself, but this has, in turn lead to my tolerance for bullshit falling rapidly. If someone is genuinely ill and trying their best to make a life for themselves DESPITE sickness; I have nothing but admiration, respect (and if required, cuddles) for them. But it just makes bile rise in my throat when I hear phrases like; "Ah I had a dicky tummy last night after a curry so I feel your pain" or "I've got swollen glands this week, my throat feels like cut glass so I can't eat either" (*commence internal screaming*)

I tend to take, and again I wish I didn't, these types of comments as a personal insult. They always seem like such a disappointing lack of understanding. A total failure to grasp the complexities and serious nature of my illness. But are they? Or is it just human nature? Is it not in our make-up to compare and contrast? Share our experiences, however different they may appear? I know when I tell stories about my youth and how I could, for example, drink 5 men under the table, I may be bending the truth very slightly. [it was only 1 man and he may have slid under the table after slipping on a rogue salted peanut]. So perhaps people think I am applying the same exaggeration rules to my own condition? I certainly know patients like myself who do. I've encountered enough of them in hospital for a start. 

Either way it's not easy trying to walk the conversational tightrope between feigning compassion and punching someone square across the jaw. It's important to remember we are all intrinsically the same. We all want that little bit of attention and some see illness as a way to garner some much needed care. There's nothing really wrong with it, which is why I always feel disappointed in myself for taking things so personally. I want to be able to treat someone with flu with the same kindness and understanding as someone who has a life-threatening illness. But really I can't. And I won't. Why not continue on my crusade to weed out that drain on modern society: hypochondria? I feel it's almost part of my life's calling. I will don my cape and gold boots (I wouldn't really to wear a cape and gold boots but I would look AWESOME), and gently reassure those with "the worst headache in history" that they need to take 2 paracetamol and get on with their lives. People may call me a hero, but I'm really just a regular girl. I'm not into dramatics...

The Final Colon

A few nights ago I was in the grip of a particularly nasty migraine. Much like my Crohn's symptoms, I've had headaches going back as far as I can remember; at least pre-puberty, pre-training bra, but had always just assumed it was another hereditary complaint I would just have to put up with. However the increasingly regularity of these 'headaches' has eventually led me to get checked out properly, and now I know it's migraines I can act accordingly. Seems simple I suppose, but when you are faced with a myriad of health complaints you start to rate them in order of importance, and once a month-3 to 4 day-headaches, weren't high on my personal list. 

Anyway back to the night in question. In the grip of this particular migraine, I couldn't open my eyes or so much as hear even my own voice without feeling like someone was drilling into my skull. The pain had me sobbing and vomiting uncontrollably and I felt like I wanted to die. 

Yes, I wanted to die. 

I'm well aware that now, in the cold light of day, and migraine-free, that all sounds very dramatic and painfully over the top, but it's also pretty terrifying to look at my situation objectively and realise what relentless and excruciating pain can do to a ordinarily sane mind. 

Let me make one thing perfectly clear before I continue: I do not want to die. I've got a good and generally very happy life. I love, and am loved. I couldn't now imagine wanting to end my life. Plus I only have TWO cats for goodness sake; there's so much more to come. 

But in that few hours I couldn't see beyond the pain. I envisioned stabbing myself with a kitchen knife because it might somehow release the pressure on my head, I considered (and almost followed through with) slamming my head into the headboard in a vain attempt to knock myself out. Then I berated myself because I wasn't even brave enough to do anything at all and cried to my partner and buried my head back into a pillow. 

It's not a wholly isolated incident of course. For those of you living with pain, you will no doubt appreciate that these depressing episodes can be hauntingly familiar. Pain is subjective and overwhelming. Much like a disappointing lover it can leave as quickly as it comes. It's instantly forgettable. 

I normally wouldn't write on my experiences because I tend to prefer to focus on the positives, and on how to come out the other end of pain and misery. But this time I wanted to remember. I wanted to remember exactly how hopeless I felt so that I can perhaps act more quickly in future instead of waiting until things are uncontrollable. I wanted to change things a piece at a time. Only through realising how devastating an affect, (although temporarily), pain has on my mind as well as my body, I can start to work on avoiding these scary thoughts in future. Perhaps focus on how to get out of the situation practically, without lobbing half of my skull off or pulling my intestines out like a magician with a handkerchief. That can only be positive. 

I hope if you ever feel hopeless too, you can cling on to who you were before, and who you will be after, because pain is temporary. 

Ending your life isn't. 

My Crohn Personal, Disease

Spending more time than I probably should on social media, has brought up an interesting issue for me lately. Aside from the usual; getting disapproving looks from my significant other when I check my phone AGAIN in the middle of watching a film. 

Lots of you message and email me querying your symptoms and whether or not I've tried this drug or had that jab, whether I've felt this pain or had that side effect. What I seem to constantly relay is that no one's Crohn's Disease is the same Your Crohn's is not my Crohn's. 

Like any illness there is always a strange undercurrent of competitiveness amongst it's sufferers. It's a strange human trait that spreads like a virus the longer it's left alone. 

Comparing your symptoms to others can of course be helpful in gaining knowledge and an understanding of your condition, however it can also lead to feelings bordering on inadequacy. 'Ive never had surgery so my Crohn's can't be as bad' 'I don't seem to be in pain a lot so maybe I shouldn't be talking about it..'. 

I've seen occasions of people being shot down in flames in group discussions because they still have all of their insides or because they've only been on one treatment and so far it's working. How bizarre. How strange that other humans have the urge to 'better' one another by reminding them that THEY are worse off! The rules of logic don't even seem to apply. 

There is no positive outcome from reminding the world (or in this particular example: a fellow, and vulnerable, patient) how awful you've had it: think about this for a moment before posting graphically about your experiences; will it help to ease the worried mind of the person you're directing it towards or will it only serve to terrify the briefs off them? Will it make you feel more satisfied? Why? What is lacking in your life that you feel it necessary to play the victim? 

If after mulling those thoughts over you still post then fair enough. 

I just fail to understand what benefit comes from attempting to out do someone else in a similar position. Isn't the point of communities and help-forums to share knowledge in an informative and supportive way?

 

When I was first diagnosed I was given so much misinformation it terrified me. Amongst other symptoms I was told I'd go blind, lose my entire stomach, require a bag for life, eventually get cancer, lose all my hair, etc etc. 

In reality I lost some of my intestines and a lot of my hair. Not nearly as horrifying. 

It's a culture of shock and drama that people seem to thrive on. Always clambering for the worst case scenario. 

The reality is Crohn's Disease, and chronic illness as a rule, is really pretty rotten. But everyone is an individual and everyone suffers differently. What treatment works for me may not work for you, it doesn't mean I am better or worse off than anyone else. I'm just my own woman with my own body and my own miraculous rack. No one can tell me I  don't FEEL a certain way because only I feel it. I decide when I can't cope and I reach out for help. I don't allow someone to tell me I'm 'not that bad because I..' BLAH BLAH BLAH - I know my own body and abide by it's rules not anyone else's.

Crohn's is very hard to live with and can affect all areas of your life. You just have to decide whether you live with it or against it, because the latter is a much harder climb. Especially when you are constantly batting away horror stories. Trust your gut. Sometimes it won't let you down.