Confessions of an ill person

If you looked at me you wouldn’t know I had an incurable disease. I look like everyone else. Ok, maybe not exactly, I’m a

You're ill?? You sure?

You’re ill?? You sure?

little (ok a lot) on the thin side, I’m often covered in bruises from millions of blood tests, and sometimes, if I’m lucky, you’ll spot me sporting a rather trendy hospital bracelet with my name on (in case I forget) and a gown that shows my bright red bum off to the whole world like I’m a baboon. Anyway, what I’m trying to say is that I’m not in a wheelchair; I don’t have to walk with crutches; I have all my hair; I have all my limbs; I don’t look a weird colour, pale or sickly; and I don’t have any disfigurements…so to the naked eye and to the world I’m not ill and I’m most definitely not disabled, which you would think would be a good thing right?

Most of the time it is! I am so grateful everyday that I can walk, jump, run, swim, and that I have the freedom to do the things that I want to do without being confined to a wheelchair..and I have to add that I have all the respect in the world for those who aspire to amazing things despite the preconceived limitations of their disabilities (aka ParaOlympians). But just because you can’t see my aliment it doesn’t mean it doesn’t exist. As a Crohns/Colitis sufferer I don’t want anyone to treat me differently, but I don’t want to have to walk around waving a sign saying “I’m ill…honest!” just so that people will let me into the disabled toilet without shaking their heads and muttering “how disgraceful, how dare that young woman use the disabled loo…there’s nothing wrong with her”, or maybe let me sit down on the bus when I’m obviously about to collapse through the effort of trying to stand up.

So as a long-term sufferer of Crohns/Colitis (still don’t 100% know which one, they’re now leaning towards Colitis) here are my confessions:

Before the op smiling as ever, but seriously ill!!!

Before the op smiling as ever, but seriously ill!!!

I know I’m a positive person. It’s a skill I have moulded from years of crippling pain, disappointment, broken promises and self hate. For most of my life I have lived a lie that has been so bloody convincing that I don’t really know what’s real anymore. If you were to meet me you would see what everyone else sees – a confident, happy person, who never gives up and never lets anything get her down. No matter how much it hurts, no matter how much I want to scream in pain, no matter how bad your horrible judgements because of my skinny frame or endless toilet visits, no matter the blood, injections and fatigue, I still manage to plaster a smile across my face.

You could spend all day with me and never notice that I am holding myself together with a tiny string of energy that is fraying and threatening to snap at any moment. I spend every day as a different person, a determined person, a workaholic, the sort of person who would never let anyone down, who won’t quit until the job is done and who gives everything 110%. I’m like a whirlwind in the office, and I guess my pet hate is lazy people. I never stop, my energy to others seems unrelenting, and my positivity in the face of so many issues seems to be endless. But inside I’m screaming as my body eats itself alive. If you were to look closely maybe you would be able to see the pain in my eyes, perhaps behind my blue eyes everything is empty? Perhaps if you stopped and really looked at me, pushed aside my over-the-top laughter, thick make-up and endless chattering, you would be able to see me my hands twitching with pain from arthritis as I attempt to scribble down an interview, or the way my body twitches as pain rips through my bowel or the deadness in my eyes as I try to cope with the face every morsel of food I ate for the past year has just ended up in the toilet bowl again.

Smiling so much can hurt. Living a lie every day takes a lot of energy and being positive when so many things are quite frankly shit is just draining. I don’t let many people see the real me. I guess I’ve never liked her. To me the real Rachel is ill all the time, she is weak, she is sick and she is not worth bothering with. The real Rachel is the person who crawls into bed and gives in to the pain and the fatigue. She is the side of me who throws up food quicker than it’s cooked. She is the person who is afraid of social events where people will see how little she really eats. She is the person who lives in track suit bottoms and baggy t-shirts, is covered in bruises from endless blood tests. She is the person who knows that feeling well will never really last, that the treatments will never really work and that it’s just a matter of time that my illness will kick off again.

That Rachel is the one I become on the night’s I arrive home alone, she is who I become when I unscrew that positive grin and put it to bed on my nightstand every night.

You could say there are two versions of me. There’s the Rachel that people see in public and then there’s just me, bare, naked and exposed. That’s the person people see when they visit me in hospital covered in wires and trying to hold back the tears. So now you know why I always want you to call ahead if you’re visiting – it’s so I can transform into the better Rachel, you know, that positive person you all know and love. She’s not for me…no, she’s for you.

Well she used to be….now the lines blur. I’ve been living this lie so long I might just be starting to believe that I really am as determined, hopeful and positive as she is every day. 

Why am I confessing all this? I guess it’s because of what happened yesterday…

Yesterday I woke up full of hope, questions and enthusiasm, ready for my meeting with ‘Mr Miracle Hands’ my

TRENDY

TRENDY

life-changing (I may as well say life-saving) surgeon, whose amazing handy-work brought Winnie into the world and banished some of the evil disease that has tormented me for the past 13 years. I was almost excited to see this ‘wonderful’ man, who I hoped was going to be full of answers and solutions to some of the weird problems I have been experiencing since my Ileostomy operation nearly 12-weeks-ago. I guess I thought that he would be able to snap his fingers and every issue would just vanish in a puff of smoke, that he would smile sweetly, say “don’t worry it’s all over, you’ve suffered for long enough and that’s it.. you can live your life now. We will fix you and from this day on your only worries will be whether your bum looks big in an outfit or which weird combination of coffee, milk and syrups to order from Starbucks”. He said some things, but to my disappointment it was nothing along those lines.

I guess I should be grateful, since the operation I have felt better than I have ever felt – well, that is, ever since I can remember. The crippling pain that caused black-outs, screaming ‘kill me now’ in public bathrooms, and left me literally crawling up cubicle walls, is gone. But it has been replaced by something else…something so much further down the scale that most of the time I don’t even notice it, but it’s still more pain than most people could deal with on a daily basis. You see the complications, the infections and the scar bursting open following my life saving operation have left me with more problems than before. I was used to the old problems caused by UC/Crohn’s, but these are new, alien and confusing problems and pains that, honestly, I am finding bloody hard to figure out.

My hope had been the ‘miracle hands’ surgeon was going to have all the answers. My hope had been he was going to say “let’s take out that remaining bit of colon, I should never have left it in, it is far too diseased”. I hadn’t expected him to take it out there and then, but I had hoped it would be soon. When he cocked his head to one side like a sad puppy and said ‘at least six more months’ or ‘possibly never’ due to scar tissue, complications and risks,  I have to admit something inside me died. I think the little flame of hope of living a totally normal life flickered and gradually burnt out. Obviously, me being WELL ME, I didn’t burst into tears or throw the all mighty ‘it’s not fair’ tantrum (believe me I wanted to), I think I made a totally inappropriate joke or laughed. In fact I even carried on doing it when he peeled back my wound dressing to reveal a very sore and oozy patch of skin that was like a scene from Alien, and expressed his horror that I’d managed to put up with such pain in the sweltering heat! I even made a joke when he declared he would have to put a THIRD stoma bag on it to drain the never-ending stream of puss:

ME: (something along the lines of)  “ooh so your adding another tool to my tool belt!!!”  (I’m sure he saw through my little act, I know my mum does (she always has)…

My three bags and some very sore skin

My three bags and some very sore skin

Anyway I couldn’t believe it A THIRD BAG!! I didn’t sign up for this. I signed up for just the one, when I signed that consent form and allowed this man to hack away at me I was under the understanding that their would be no complications. he would simply whip out my bowel, fit me with an ileostomy and that would be that…BUT NO!!! I should have known, I really should, nothing I ever do runs to course…my body screams DRAMA QUEEN!! I even joke to my surgeon that I am the most dramatic patient he has ever had – unfortunately he agrees! I was so desperate not to get another bit of plastic bagging attached to my skin that I wholeheartedly agreed when he said the only other option was to stick a knife in the over-granulated scar tissue and drain out the puss! Anyone passing the room at that point would have thought he was offering me a package holiday by the OH YES, FANTASTIC, PLEASE that was excitedly coming out of my desperate mouth. unfortunately he refused to do that, and I found myself whisked to another room, nurses buzzing around me, sticking one bag after another to my skin in an attempt to find one that wouldn’t make me look like Michelin Man once I had my tshirt back on.

Anyway, back to the surgeon. I quizzed him on everything. Now that they had my large bowel did they finally know what I had..surely they did? The truth was, after looking at the results he still couldn’t tell me 100% if it was UC or Crohn’s. He confirmed the results ‘swayed’ towards UC, but that it looked like they wouldn’t 100% know until they removed the rest of my colon, then it would be a waiting game to see if the disease attacked my small bowel…if so, it was Crohn’s Disease. What a fun game 🙂 I can’t wait to play that one, maybe we should put bets on it!

Hmm hope all this isn't for forever

Hmm hope all this isn’t for forever

By the end of the appointment I had been called brave, tough and a ‘good coper’ – I didn’t feel any of those things. It must have shown as at the end of the appointment, as I was being whisked off to get my third bag plastered to my ever-growing tool belt, the surgeon grabbed me in a big bear hug and held onto me like I was being taken off to die. He told me how brave I was, how well I was looking, and how much I had been to stay so positive despite what I had been through. It was awkward but nice…despite everything that has gone wrong, the wonky epidural, the split-open scar, the infections, I would still, if I had to, trust this man with my life (even if he is a bit touchy-feely and holds my hand during appointments).

And after all this crap what did I do? I didn’t go home and cry did I NOOO!! I went off to the beach with my parents and pretended I was happy as larry about the whole thing…and because I did I had a really nice day. But today as I ring the specialists and surgeons for the 10th time and get “ring the other team” or an answer machine message, as I desperatly try to force them to put me on meds for my remaining colon, which is becoming more and more diseased and painful by the minute, I am feeling desperatly low and upset.

Me smiling at the beach

Me smiling at the beach

I guess I have figured out, finally, that I’m really bloody ill and a quick-fix operation is not going to cure me. I’m frightened. Frightened about what the future holds, about my health and the impact it will have on my life, about future surgery, about more time off work. The truth is that despite my happy face, quick wit and go get ’em attitude in life, underneath it all I am bloody terrified.

And you know what???? That’s ok, I’m allowed my bad days.

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13 thoughts on “Confessions of an ill person

  1. Yes you are ALLOWED bad days, you show so much positivity and passion for life it astounds me. I didn’t have Crohns or Colitis so I have little understanding of the day to day pain you endure, however having had the emergency colostomy I understand the hope that that was the only bag you would have and the need to accept/focus and move forward with your life. I feel for you at the lack of an absolute diagnosis I was lucky they found the cancer cut it out, then the chemo did the rest I have a sort of closure. Yet now 12 weeks after the reversal op I still get slightly panicky if my habits and routine change. Is it back? Will I have a bag again? Reading about your courage ( yes it’s courage) and resolute determination to LIVE I know if it happened again to me I would survive. Stay strong.

    • Hi

      Thank you for this kind comment. I think I have been unlucky with the lack of firm diagnosis, but I am also incredibly lucky not to have gone through what you have been through…When they first did a colonoscopy they were looking for cancer and to be fair that is exactly what I thought I had. I thank God everyday that although this illness is dreadful and did almost kill me that he also gave me the mentality and down-right stubborness that I needed to fight and most of the time win the battle. It sounds like you have that as well.

      I repeat your own words back to you…Stay strong. I hope you never have the bag again and that life starts treating you better from now on, sounds like you’ve been through hell and I hope that you manage to embrace all the things you couldn’t before 🙂 like farting. I don’t think I’m as strong as people give me credit for, but all these lovely comments and knowing other people are going through the same thing is giving me strength every single day.

  2. I just wanted to say how refreshing this post was for me. It’s not that I don’t love your usual positive happy go lucky posts, because I really do but I just connected to this today. Sometimes I am sick of saying I’m fine because frankly I’m not which is probably why I started my blog, somewhere to be totally honest without getting the awkward ‘oh crap what do I say to her now…’ look. I don’t have the same problems as you and I think you cope a lot better than I do but if you feel like reading someone else’s ramblings and sometimes moaning this is my blog http://georgiasurvivingtheunsurvivable.blogspot.co.uk/ (I’m trying to get it up to date!). You are allowed to be unhappy and I hope you know how inspiring your blog is xxx

  3. Hey hun confessions of an ill person really made me cry. You are an amazing person with such strength. At Jd you were always so happy and bubbly and you still are in your writing. Your illness is incredibly shit but what your doing writing about it is great as your helping people. you really are a lovely person the real you and the image you xx

    • Hi Katie

      great to hear from you, it’s been so long since the days of footwear, sweets and cups of tea at JD Sports. I’m shocked you guys never noticed when I was at work, i think that was why I was always racing around like a crazy person to keep myself from noticing the pain 24/7.
      Thank you so much for your kind comments, I just hope it helps people to understand Crohns and Colitis and what living with a stoma is really like, the poo and all 🙂
      I hope you are well and enjoying life.
      Keep in touch.

      Rach xx

  4. Hi Rachel

    What meds are you on for the rest of the colon they left in place?

    I had colifoam, which didnt work and now theyve got me “administering” predfoam. Its like shooting a shotgun up your arse lol.

    Where were you when the person made the comment about you using the disabled toilet? It hasnt happened to me yet but i swear everytime im in the disabled loo im mostly thinking about a comeback to any snide comment once i open the door. Kind of dissappointed i havnt had to use any of the comebacks yet as ive thought up quite a few but cant remember them as i havnt written them down. Maybe we should come up with a book called “101 ways to embarrass people who question your genuine need for using disabled toilets”. It could be a best seller. Or not lol

    What date was your op?

    Anyway take care and keep your chin up 🙂

    Tom

    • Hi Tom

      They are currently trying to figure out what to give me! I’ve been on salfolk enemas since my op and now they’ve got me trying predfaom..none of this is new, i’ve had all these millions of times before for my IBD so i’m not confident they will work. Oh I know what you mean holding it in is a nightmare!!

      I was in the train station, but it has happened in M&S and also a couple of bars and restaurants. It’s always humiliating, especially if there is a ‘disabled’ person waiting, who is more obviously disabled than I look on any given day. I even got the ‘glare of doom’ when using the disabled toilets at the outdoor Shakespeare in Chester last week, I tried to tell the woman in the queue there wasn’t any loo roll in there, and she totally blanked me, and despite there being no ‘disabled’ people in the vicinity NO ONE would use that loo 😦 or maybe they thought I’d done a rather smelly dump…either way they refused to ease the queue by using a perfectly clean loo.

      That would be funny…I’m thinking of taking pics of the Best and Worst of public loos I have visited! But that might be just far too minging.

      Oh gosh the op was yonks ago…well it feels like that most of the time, but sometimes it feels like I had it done yesterday. It was April 24…feels like forever ago.

      How about you??? any tips for me as I keep going, what about showering bag on our off, I keep mine on but hate the damp feeling after.

      Love Rach xx

  5. Hey, hope this is only a small blip and you can have a better day soon. Of course you can have a shit day, they make the good days even better. I’m loving how you can write so positively about your condition, it is helping me greatly to think about and come to terms with the future.
    Take care.
    Julian

    • Hi Julian

      I hope you are as well as you can possibly be at the moment. It is a damn horrid condition, and I spent a lot of the early years wondering why it was happening to me, which I have since realised is a terrible mindset to be in.

      Thanks! It is great to hear that my random ramblings are helping, I wish that someone had been 100% positive with me years ago about the realities of surgery, I would probably have had it done sooner if someone had just said “Yes it won’t be perfect, yes You will still have worse days than normal people, but you will never feel like you are going to pass out in pain again”…I think I would have jumped at it.

      Love Rach xx

  6. Pingback: I’d shoot for the moon but I’m too busy gazing at stars | Dave Has UC

  7. Thank you for sharing all of your heartfelt stories, I hope things will go more your way soon. I have had a bag for 5 years after suffering 18 years with ulcerative colitis. It’s nice to find somebody on here who knows what it’s like. Sometimes I feel quite isolated so thank you so much x

  8. Could/can empathise alot with this blog especially the part about there being 2 of you- I am exhausted doing that and have given up for a few weeks – so much going on in my head as I prepare to have my ileostomy made permanent – not something i signed up for 10 years ago and still finding it difficult to accept.

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