There are many stigma's attached to Crohn's Disease. The majority of which i've already been unfortunate enough to encounter in my short Crohn's career. It's understandable in most cases as not much is widely known about the disease - out-with the immediate Crohn's 'community' at least.
In my case the only knowledge I had of the disease was from someone who had suffered for years with it, and was now completely blind, and almost crippled, having horrendous stomach issues. Of course this particular case being in the forefront of my mind when Crohn's was first mentioned during my diagnosis filled me with terror and dread. The thought of going from a relatively healthy young woman to essentially a cripple devastated me. I quizzed doctors and nurses relentlessly for more information until I was happy (ish) that these symptoms and side effects were extremely advanced (and relatively rare) and went side by side with other health issues that I was lucky enough not to have.
So as I know how little is known of the disease and the various stigma's surrounding any form of bowel disease - mild or severe - I try as best I can to make allowances for peoples attitudes towards it. However hurtful or just straight up ignorant they may be.
The main issue with Crohn's is that it is seen (or not as the case may be..) as an 'invisible illness'. For most sufferers there are little to no, outward signs anything is wrong. In the initial stages or during flare-ups, weight loss is the main factor, and, depending on your size prior to this, this may be noticeable or easy to conceal. In my case I dropped 2 dress sizes and 4 bra sizes. Devastation all round ;)
It was hard to keep up, I had to constantly buy new clothes and undies for fear of some part of my anatomy making an unexpected appearance due to the gapes in my clothing. Particularly annoying as I was asked to be a friends bridesmaid that August, which meant several alterations to my dress were required, and when her big day arrived a few extra tugs of my corset were still necessary to avoid giving the vicar an eyeful.
People with Crohn's (generally) don't require wheelchairs or walking sticks and even during a particularly bad flare-up, don't look as what most people would consider to be 'ill'. I've actually been told how well I am looking when i've been feeling utterly awful! Maybe it's Maybelline?
Another common misconception about Crohn's is that it may be contagious and can be 'caught'. This is a bit of a gripe of mine - I find it a bit offensive for someone to ask this (in my presence at least) as it somehow implies that I would be reckless and selfish enough to expose my illness to others without a care. I think a few people may have thought twice about visiting me in hospital for this particular reason. Nice. (For the record there is no evidence whatsoever Crohn's is contagious).
And finally, while i'm on a roll - another Crohn's related gripe are assumptions. People assuming I can't do certain things now as I used to. It's true, I have to take things a bit easier now but i'm still the same woman - just a bit more 'diseased'. I am KATHLEEN. HEAR ME ROAR. And all that jazz. I've learned to say no to the things I know I can't handle (or don't want to - there have to be some perks!) I understand people are concerned for my welfare but I still have my voice and I'm not afraid to use it. That or my slapping hand if need be..
Being in the midst of having this disease and learning to cope with all that entails, it's easy to forget that if you have a partner, they are suddenly landed with it too. It's very difficult being the person who has to take on this disease. I suppose I don't really appreciate just how difficult, as it's me who has introduced Mr Crohn's into the relationship in the first place. Or rather he has turned up invited, like some weird-ass stalker who just WONT GET THE MESSAGE :(
Anyway now i'm stuck with him, my other half and I just have to adapt to his presence.
[ I should mention at this juncture that for the purposes of this post my Crohn's is personalised as male as they generally cause the most stress and cannot take a hint.. ;) ]
My beloved has been with me long before Crohn's was even a twinkle in my bowels, and therefore has been by my side throughout my whole diagnosis and eventual operation. For him there has never been a question of not seeing it through. I'm sure he had reservations, worries and doubts about having a girlfriend who has a lifelong disease - after all, who wouldn't? I know if the diseased guts were in the other stomach, much as I love him, I would look to my crystal ball and maybe wonder how we would cope if he became more seriously ill, if I could live with the side effects and symptoms, all all the generally yukky bits entailed in having such a disease. No one, being completely honest, could say they wouldn't.
But in the end, in our case, after a lot of me feeling sorry for myself, I realised he had the love I need to see me through. (Sorry :) )
The man in my life is very practical and bases most decisions entirely on what's logical, whereas I'm an emotional wreck and tend to see the worst case scenario as an inevitable one. So I like to think we are a good balance, he rarely lets me wallow and makes me focus on what needs to be done or to see things as they are, not through tear-stained goggles. Sometimes this can be difficult to take especially if i'm particularly down - it seems harsh not to be pandered to - but it really is the best course of action. If it wasn't for him snapping me out of it i'd probably be in a dark room somewhere, shaking back and forth, sobbing to 'everybody Hurts' on repeat. Slight exaggeration obviously! (I hate R.E.M)
Apart from the emotional side of things (which I can imagine for a man is bad enough), he has had to endure lengthy visits to A&E and trips to various hospitals, having to see me at my worst and with with multiple tubes and needles prodded in various bits of my anatomy. Running the house while I was in hospital and looking after the cat SINGLE-HANDEDLY. And now he has a woman with a big scar down her front to contend with too, which again he has been amazing about. He just simply and very matter-of-factly explained he thinks I'm beautiful and that it makes no difference whatsoever. Really, the only person freaked out about it has been me, myself and I.
He gets annoyed if I ever mention he could've chosen to leave me to deal with this on my own (as some lovely people suggested any man might) as it's hurtful for me to think that he could, just due to some tricky times ahead.
So, aside from this being a soppy, open love letter to my beloved, it's also to make it clear that whether or not you are in a relationship everyone needs support at times. Even if it's just from a decent pair of Spanx. They do things to my stomach no man (or surgeon for that matter) ever could ;)
Had a really vivid dream last night that I was in hospital getting another operation. Major 'phew' moment then when I realised I was still firmly in my own bed with the cat keeping my toes warm.
Seems a lifetime away now since I was in there getting the pesky diseased bit of me removed.
I have always been a fairly squeamish person (taken from my dad who can't even be in the same room when I talk hospitals), however now I wish I could have seen the operation being done and that bit of my insides that was causing me so much bother. Weird? I'd say so, but it's amazing how all that squeamishness goes out the window when it's your own body it's happening to. Plus the fact that I went to 'sleep' in agony and woke up what seemed like only a few minutes later feeling great! Albeit out of my tiny mind on drugs..
I was pretty cool about the whole operation thing - my Mum and Aunt took me to the hospital on the morning of my op and my mum was very anxious and on the verge of losing control of her faculties at any given moment, so I tried my best not to let her see I was feeling the same but times by 100.
After they dropped me off I was whisked away and put through my paces with various tests (they did most of the checks the previous day) and several nurses and doctors ran through what would be happening. I tried my best to take it all in but the nerves started to build and build. My op was scheduled for 8am but as the other women waiting with me were only in for "minimal procedures" and I was "the main attraction", they wanted to leave to the end. Flatterers ;)
I didn't end up getting taken until around 3 in the afternoon. Cue lots of daytime TV and gossip magazines. Hard to concentrate on 'Cash in The Attic' though when the thought i'd soon be getting part of my body removed was firmly in the forefront of my mind. Much as I was thrilled that the Jones family from Bristol had enough crap in their attic to afford a trip to the Maldives, a part of me (probably the naughty diseased part) also wanted to have them all killed, looking at their smug faces, them quite happily jetting off to paradise without a care in the world while I sat in a hospital gown 12 sizes too big (I only weighed 6 and a half stone at this point), dreading the door opening.
After that I can't remember much else - I tried not to allow myself to think too much about what was actually happening, just smiled and nodded my way through the various instructions I was given and the tubes and needles being inserted into me. When the nurses took me through to the operating room I started to feel anxious, I remember a nurse ticking off a checklist of questions- he asked me if I knew what op I was about to get - I panicked as I couldn't remember the medical name for it, as if somehow he'd say "Wrong answer, Sorry!" like some mad game-show host and they'd wheel me back to the ward showing me a scar I could've won. Thankfully I passed and was soon drifting off into a drug induced haze.
Next thing I remember is coming round and being handed a phone to call my nearest and dearest. Spoke to my mum first, can't remember what we said to one another, remember her sounding a bit emotional and frazzled. Then spoke to J, can still hear his voice saying "hello!" - he obviously was expecting my mum to have maybe called and not me. Sounded so happy to hear my voice and his voice is the only solid thing I can remember in about 24hrs. He's kind of like ointment on a burn to me, when I'm stressed he has an amazing way of putting me at ease. Truly the apple to my crumble :)
Anyway I digress.. The op was successful and after I was moved from high dependancy the nurses were keen as mustard to get me moving. I actually laughed out loud at the nurse who came over 1st thing in the morning suggesting I sit up. She came back later in a tag team with another nurse clearly styled on Hulk Hogan to exact her revenge. A few incredibly painful minutes later and several prolonged squeezes on my morphine drip and I was up and about. Well at least sitting up straight anyway.
But thankfully all of the above wasn't an elaborate dream and actually happened, meaning I now feel much, much better. Hopefully now that's out of my system (literally) I can go back to dreaming about the usual girly things like fluffy kittens, high heels and periods. Zzz...
Went out to a Ceilidh the other night. My friend's mum got married and had a big bash to celebrate. I took my mum with me and we had a couple of drinks and a lovely time. Chatted with my friend's family then we were in our way home by half 9. Poor show. This was at my request by the way, so I can't even blame my lovely mum's advancing years as an excuse.
Not so many years ago I used to be able to pull off a week at college, followed by reams of homework, a 14 hour shift in a restaurant, a few hours pulling pints in my local with ease, then out to drink said pints and have a dance until well into the wee hours. What has become of me?!
Well, I could easily blame my Crohn's but that probably wouldn't stand up in court. It probably has a lot to do with not being nearly as young as I used to be and having those horrible adult things like 'bills' and 'responsibilities' to deal with - YUK :(
When I think back to all the times in my life when i've thought something wasn't quite right (health-wise) I could probably now attribute it all to having carried Crohn's with me the majority of my life without realising there was anything wrong with me. My whole life i've assumed it was normal to feel instantly bloated and sick after EVERY meal or to have constant niggly headaches or feel shattered most of the time. Why would you question something when you've never known any different? I think my lack of enthusiasm for food slightly worried my parents whilst I was growing up, but I think it was mainly just written off as a high metabolism or something similar; All the Nicholls men can eat for Scotland and still manage to look like bean-poles. Handsome bean-poles I should add.
I hated feeling so queasy and just not quite right after having enjoyed stuffing my face , but just figured i'd eaten too much, and that this was my body's form of punishment for committing the cardinal sin of Gluttony. A few of my friends have also commented that they also had similar reservations in the past about my eating habits. One lovely friend of mine said she used to worry I had some form of eating disorder, she couldn't understand why I was getting full after only a few bites of lunch or dinner. Makes me a bit melancholy to think about people I love having harbored these secret concerns and not having been able to convey their fears. But then again how do you question something when your not even sure there is a problem?
Now in hindsight I suppose if my friends, family or more importantly myself, had brought any of these worries to light I might have been on my way to a diagnosis much quicker. Then again probably not! Can't really imagine how that would even transpire anyway, some sort of weird intervention where my friends and family force me to face my ultimate fear and eat more than half a plate of food?! Sends a shiver down my spine just thinking about it.. :)
Anyway, I think I'm now managing to reign in my wild-party-non-stop-pop-til-you-drop-don't-stop-til-you-get-enough lifestyle to make allowances for my Crohn's.. Replacing the crisps and cider with custard creams and tea, the dancing with bubble baths and the 3am taxi queues with quality zzz's. None of which makes me unhappy really, just a bit misty-eyed for my younger days.
I'm sure there's life in the old (diseased) dog yet ;)
So yesterday was the worst Crohn's pain i've experienced since before my operation. Horrible. Came on suddenly and lasted a good 7 SOLID HOURS. Had to leave work and get my mum to pick me up and take me to my house, like a bloody 5 year old, where I went straight to my bed. Took me about a hour to get even vaguely comfortable enough to lie down. Eventually passed, but the worry didn't - still couldn't shake the feeling that I was heading back down Agony Avenue without so much as a map, making stop-offs at Pain Place, Diarrhea Drive and Weight Loss Way.
It's very hard when I get a bit down about things, to try and snap myself back out of it. I've always tried to be a glass-half-full kind of a gal, but sometimes it still hits me again that my disease is for life. Life is a very long time. The longest time infact. Murderers and rapists who get 'life' are usually out of the clink well before they start sporting grey hair, yet I get a life sentence with no chance of parole.
It's quite ridiculous, and sounds even more ludicrous when I try to explain this to people, but I sometimes feel as though all this is happening to someone else and i'm just watching it all unfold like some perverted voyeur. Even though i'm well aware of everything that's happened in the last year or so (and have the scar to prove it), it still occasionally gets me very down when I remember that this isn't just going to go away. I know, in what's left of the rational part of my mind, that it's only very early days for my Crohn's career (?) and that in time i'll get used to the idea. But knowing all that doesn't seem to stop me feeling very blue about it all at times.
After a while, time passes and people don't want to talk about it anymore - its understandable - I don't want to talk about it most of the time - most people want to push it to the back of their minds as I look fine on the outside. Besides, it's not 'fun' to hear someone whine constantly about their health issues, especially when most people don't even understand what Crohn's actually is. Family and friends on the other hand want to know I am doing well and that i'm improving rather than getting worse, so constant updates on the state of my bowels just gets them down too and causes more worry.
It's often easier just to say the well worn "i'm fine" as I don't want to upset/worry anyone, when the truth is the majority of the time i'm decidedly below par. I think i'm probably my own worst enemy though as I am determined not to be seen as the "sick" daughter/sister/girlfriend/friend/cat owner; and would really much rather just be "Kathleen" :)
I've been thinking a lot recently about how my disease has affected those closest to me.
After along time trying to adjust to how having Crohn's has changed me, I've not really had much time to catch my breath and spare a thought for the people who have endlessly supported me through it all. Sounds very selfish actually saying that out loud but it's incredible how much this disease takes over your life, especially in the early stages. So, in order to get a better idea of how my nearest and dearest have adapted to the new and (what's the opposite of improved?) me, I thought the simplest way was to ask!
On finding out what disease I was dealing with, the general consensus amongst my family and friends seemed to be the worst case scenario that I would probably die. Of course, I will obviously die at some point - last time I checked I am not immortal. Although hopefully not until well into our old age and not because Crohn's has got the better of me. I'm sure my mother found the thought of losing her only daughter far from funny right enough, in fact, as she put it, she "cried a lot and prayed a lot and had a lot of headaches worrying about my little girl". Now at this juncture I should probably explain a little bit about myself. I cry at the drop of a hat. Clearly a trait taken from my mother. For example, the RSPCA adverts completely FLOOR me - kittens in danger? Are you kidding me? So when I think about someone I love being upset, especially over me, I feel incredible guilt and want to hug them intensely until they have no more moisture left in them to produce tears. Basically, I am an emotional wreck.
My family and friends also pointed out how upsetting it was to have to see me in hospital, and how hard it was to try and be positive for my sake whilst feeling so sad themselves. The fact that none of us knew the ins and (more appropriately) outs, of the disease also caused a lot of frustration and confusion. My brother, who also had the added worry of a possible hereditary link, trawled the net for info and my mum used the more traditional, pre- Google method of listening to members of the public who don't have the first clue what they are talking about. Once I started to learn more about the disease and could impart my newly garnered wisdom, everyone started to calm down a wee bit.
One of my favourite comments, which makes me smile and breaks my heart in equal measure comes from a wonderful friend of mine who, when asked how she feels about things now, says, "..a lot of the time I wish Crohn's would give me my bestie back".
So, in conclusion, my little fact finding mission has made me realise that now I am not the only one living with Crohn's Disease. When I got diagnosed all the people that I love did too. Crohn's turned up to the party uninvited and didn't even bring so much as a bottle of wine. And as it's MY party, i'll cry if I want to :)
Apart from feeling knackered, occasional bloating and bouts of feeling like someone is wringing out my guts like a wet towel, i've not had too many prominent symptoms to report recently. The main issue i've noticed lately has been the state my skin is in.
There are several ways in which Crohn's affects the skin, however as this has never really been an issue for me before, I can only assume it's the drug trial causing this slow decline of my face into that of the elephant (wo)man.
These symptoms have only come into play within the last few weeks and aren't showing any signs of improvement. My skin is usually pretty peachy, even if I do say so myself. Although the hue leaves a lot to be desired, somewhere between Milk Bottle and Magnolia on the colour-chart. But lately my face is dry beyond belief and most of it is blotchy and red and sore. My chin especially looks like i've been attacked by a cheese grater, and no amount of moisturiser seems to be helping my cause.
Apparently painful little red 'nodules' or bumps can appear on the body during Crohn's flare-ups and I would say I can feel one of those bad-boys coming on anytime soon. Not a thought i'm particularly relishing to be honest. Trying to remain positive that although I feel rubbish just now it's still a vast improvement on a few months back.
Right enough a few months back I didn't have the face of a crocodile who's just had a particularly nasty shave.
Never mind, I'll keep slapping on the E45 and hope for the best. If all else fails I think i'd make a passable bearded lady.. I always did want to be in ZZ Top after all.
