Glued to the Loo

Today is a beautiful summer’s day, I can hear grass being cut in the distance and birds chirping across the way in the old oak tree I can see from my bedroom window.

I’m not outside enjoying the sun, nor am I at work – where I should be on a Monday afternoon, instead I’m in bed with my insides knotted up in yet another ‘flare-up’. The spasms are so tight I’m actually holding my breath and resisting the urge to breathe as this only adds to the discomfort and the increasing pain as it continues to build and build.

The end result of this spasm will be me sat on the toilet while, as I put it politely, ‘the world falls out of my ass’. Not an attractive image hey? Imagine that coupled with your entire body shaking, covered in sweat – like you have the worst fever ever, your legs going numb, and just for good measure my knees and calf muscles covered in marks where I’m gripping them so tightly while I sit on the loo and assume the ‘brace position’ and try and deal with the pain.

I’ve only been diagnosed with Crohns Disease recently – 3 December 2012, this date is etched on my brain as fresh and as painful as my most recent tattoo. The diagnosis I thought would be a major stake in the ground after suffering for over 20 years, but the magnitude of the monster I’m dealing with is a lot harder to accept than I ever anticipated.

I imagined a diagnosis would feel like a weight lifted, instead it feels like a life sentence when you know there is no cure. And don’t get me wrong, I know it’s not the big ‘C’ and it’s not life threatening and there are LOTS of people out there a lot worse off, but when you have one of the most socially-unacceptable, cruel diseases, there’s no consolation.

Let’s also get it out there, yes my surname is ‘Croney’ – I am a Crohnie Croney, I wasn’t sure whether to laugh or cry when the irony of my name sank in…

I’m not sure in all honesty why today of all days I feel compelled to share something that is so embarrassing and personal, apart from the fact I have this thing and so many people (including my nearest and dearest) haven’t got a clue what living with this disease actually means. Maybe it’s the fact that last night my hubby advised me to sit down with my Dad and try and talk him through it again, even though my parents have been on this journey with me every step of the way.

The reality of my life now, even after starting treatment – Remicade/Infliximab infusions every 6/8 weeks, which I’m not convinced are working (but that’s a subject for a future blog), is that I live my life by a day-to-day routine and not being able to plan anything more than one day ahead. The latter being a point of frustration for both me, family and friends, especially the ones who ask me if I’m going to be well a week next Thursday to go out?… I DON’T KNOW!!!!

A normal day for me is waking up and within a second assessing how I feel… on a brilliant day I will feel normal with no pain at all (this is rare), or I will have mild/moderate pain I know I can cope with, or within a second of my eyes opening I’ll be in agony and spending most of my day either on, or near to, a toilet.

After getting myself ready, which some days can take an age if my ankle joints are hurting, or my eyes are swollen, or I feel like I’m going to vom (more typical symptoms of Crohns), I can then go on to packing my bag which always includes medication, tissues and perfume, the last two are a MUST and go with me everywhere in case of an emergency – of which there are many.

If it’s a working day my hubby and I drive the kids around to the child-minder before he drops me at the train station. On a good day we can do this journey in about five minutes, on a bad day we may drop off the kids and then he has to drive me back to the house so I can go and sit on the loo. Then when I feel ‘safe’ enough to leave the house he drops me at the station. The alternative outcome to this scenario is that the ‘safe’ feeling doesn’t materialise and then I’m housebound for the rest of the day and I’m forced to work from home.

On the days I make it to the station I have the same thoughts while waiting for the train:

  1. Please don’t let the train be delayed or cancelled as the station toilet is grim. It’s also locked so I have to go and ask the guy in the ticket office for the key (really embarrassing after the tenth trip)
  2. When the train comes please let there be a seat next to the loo
  3. PLEASE don’t let the toilet be out of order or ‘occupied’
  4. Please don’t let the train be so rammed that people are stood outside the toilet door.

Once I’m on the train I then pray to God, or anyone else who will listen, that my stomach will hold out for the journey, or at least until I get to the station the other end. Nine times out of ten I try and go to sleep as this is the only thing to stop me panicking/worrying the entire journey.

When I’ve got off the train I become a toilet expert, I know every toilet in every station, cafรฉ, restaurant etc. on my route to the office in case I’m ‘caught-short’ – having to go quickly happens a lot. One minute I can be walking down the road happily and the next minute feel the initial twinge which means I need to get to a loo pronto, therefore having tissues and spray on you at all times is a necessary evil as you never know the state of a toilet you’re going into…

Train journeys are probably the easiest of all if I’m honest. Tubes and buses are like Russian-roulette and I only attempt them when I’m 100% confident I can make it without ‘incident’ as any mode of transport without a toilet is a daunting prospect for any Crohnie.

Car journeys are up there in terms of stress levels, they’re all well and good when you can stop at service stations but when you’re stuck in a traffic jam on the M25 there literally is nowhere ‘to go’ and on occasions the kid’s porto-potty has been disarmed and ready for use as has a bucket. The glamour…

I’m not going to go into every gruesome detail but you get the idea. I basically live my life by needing to know where the nearest toilet is. Having children is actually a blessing in these scenarios as I can normally take them with me into most places to use ‘their facilities’. I also do have a ‘Can’t Wait’ card from Crohns and Colitis UK, but have to say I’ve been too embarrassed to use it up until now.

Having to share the fact that you are just about to poo yourself with either a stranger or friend is probably one of the most shameful things ever, but worse than this is having to reassure your children that Mummy isn’t going to die from her naughty tummy and explain she can’t take you swimming or to the park today as she needs to be by the loo… that’s what hurts most, forget the physical pain.

xx

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40 thoughts on “Glued to the Loo

  1. Hi Nadine, I can identify with everything you’ve said, as I’m a fellow Crohnie. I find one of the toughest things is not being able to ‘plan’ and how guilty I feel sometimes when I have to let people down (even though I know I can’t help it). I also hate having to plan my life and journeys around loos the whole time! Thanks for your honesty, you write really well too. I do hope Infliximab helps you soon. I’ve been on it for nearly 7 years now and it did help me for quite a while. Take care hun, Ruth x p.s. if you feel like popping over to my blog, it would be great to see you! http://www.myhealingandcreativejourney.wordpress.com

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    • Hi Ruth,

      Have you looked into bile malabsorption too? Since starting my new drugs I’ve had no sense of urgency or cramps at all. I can now go out and feel confident without panicking where the loo is. I’m amazed by the improvement. Take care x

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  2. You are brave, funny and write superbly.
    You are going to drag this disease into the spotlight and help so many others in the process.
    x

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  3. Fantastic open and courageous piece of writing – Well Done Nadine… I can identify with all of it – aren’t we lucky ey?
    Keep writing, illnesses like this are never really discussed so people can’t understand properly what it’s all about….Take care….xxxx

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  4. A very brave and honest first post. Well done Nadine!

    I have IBS and I too know exactly where every decent public loo is in case I get caught short. I can suffer quite badly at times (I had an “interesting” experience with a train toilet in Bulgaria that I wouldn’t care to repeat in a million years), but I know IBS is a complete breeze in the park compared to Crohn’s so I take my hat off to you. x

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      • Such a totally honest and true representation of living with IBD. As a Crohnie myself I can identify with it all. Have written a stage play (comedy with serious message) based on my own experience of IBD to raise awareness and would love to use your blog in the programme if you would permit. x

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  5. A fantastically honest and open account of life with inflammatory bowel disease. I’ve lived through everything you’ve described with my colitis, and it sucks…

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      • I’ve been diagnosed 12 years, although, with the benefit of hindsight, I suspect I’d had undiagnosed episodes on and off for years previous to that. Been in remission pretty much for 10 years since I started azathioprine, with just a few short courses of pred to control mini-flares, which may have been flares of previously diagnosed IBS or fibromyalgia, which was diagnosed in November 2010. I find that once you have one ‘big’ diagnosis, doctors tend to put everything down to that rather than thinking of other options…

        I had it really bad before the aza was introduced. Was very ill for six months, vomiting after every meal, having to work from home because I couldn’t face the commute into London on the train and *shudder* the toiletless tube, basically not eating because the after-effects of food were so awful, cramping. I put off going to see my GP until I started to lose bowel control completely…

        As well as the azathioprine, I also follow a low-fibre/residue diet, which helps to a certain extent, and a year ago started to avoid liquid dairy on the advice of my gastroenterologist, which was a revelation and made a HUGE difference to my bowel habits. Not easy combining low fibre and low lactose with being veggie by choice though!

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      • Haha, I’ve just published another post about my diet – sounds like we eat similar.

        My issue is, if I’m honest, is that I’m not really sure what remission is? Is it experiencing no, or next to no symptoms? How do you know when you are in remission?

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      • My friend who is in remission explained it to me as there being no active sign of the disease. She continues to take medication and follow her diet though to ensure she doesn’t cause any re-flare.

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  6. Thanks for visiting my blog. What you describe here is so true to what us Crohnies face on an hourly basis… I’d like to say daily but we both know that would be a dream to only worry about the loo once or twice a day. Bless you for being so open about this journey of yours.

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    • Thanks for reading too! I was just about to respond to you straight away and then had to ‘run’. I just felt it was time to start sharing something I’ve kept so secret for all these years. It’s a cruel disease xx

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      • It sure is a cruel disease. What would the loo paper companies do without us! All the best with sharing your story – others will be encouraged as you do.

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  7. Fabulous first blog honey and a very brave post. When I was flying with VA I got dysentery on one of my many trips to India and spent the following two weeks with the EXACT symptoms that you have described before being admitted to hospital and getting cured (lucky for me). It was absolutely awful and like you say terribly embarrassing. I really do hope that the treatments you’re on give you some relief soon. Love to the kiddies xx

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  8. Thanks for sharing hun, it’s a really brave thing to put that out there! I can’t begin to imagine what it’s like having to cope with this illness on a daily basis. Thinking of you, Chloe xxx

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  9. Ha I too know where all my local toilets are and also at most other places I visit frequently also the quickest routes and also which ones are busier then others.
    I got rid of all shame ages ago, and if needs be I would fight for a toilet if I needed it that badly.
    Also developed what I call the waiting game where I will purposely stay in the toilet longer than needed or untill I think the ppl in the que are new ppl and don’t know how long I’ve been in.
    Also the subtle putting toilet paper down first to cut down any splash and timing the double flush right, and also dodging auto flush toilets have become a speciality of mine

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    • Laura, that’s all scarily familiar too! I sometimes feel like I camp out in loos on occasions and also know the best places to ‘go’. What a lovely existence we lead ๐Ÿ™‚

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  10. Thank you for writing this and sharing something so personal. The food intolerance I’ve been diagnosed with causes me very similar problems, I thought it was all over when I was diagnosed but despite changing my diet my problems have continued and my Dr is now testing me for Crohns so I’m just waiting to find out if I have this aswell. I have a close friend who was diagnosed about twenty years ago and take great reassurance in the fact that despite having been through all the suffering she now has this monster very well tamed and has been in remission for several years. I hope your current flare up subsides soon and you can start working towards a more normal life….fingers crossed!

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    • Hi Claire,

      Really hope they don’t diagnose you with Crohns, although sounds like you’re having a tough enough time as it is. I’m focusing on getting well and am changing my life to do it as I’m intent on getting into remission!!

      Xx

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  11. Sorry to hear about the condition Nadine, but you seem to be quite strong in dealing with it, and with a good support network of friends and family. While a friend of mine outlined briefly the logistics of Crohn’s, this account definitely has helped add a more human side to it…My fingers remain crossed that it will improve very soon for you x

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    • Thanks Mark. It’s amazing now that I’ve started this journey how many people around me have the same disease. I am strong and do cope (somehow) so definitely won’t let it stop me!!

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  12. Kudos on your first blog post about Crohn’s!! It perfectly described life with Crohn’s; the knowing where every bathroom is, the not knowing how you will feel next week to plan, and the “emergency kit” (i have several and they all include back-up undies! lol!). So sorry that you, too have to go through this but you are not alone! I am looking forward to reading future posts on your blog!

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  13. Hi Nadine, I am so sorry to hear you have Chrones, a friend of mine has suffered with it for many years. If you need a fellow suffer I could see if she would mind chatting? I do sympathise with the toilet issue, I was like it for about 6 years but I had parts of my bowel removed seems to have helped a bit, unless I get stressed or nervous. I do hope that one day they will be able to find something to help control such a disease, in the mean time take care and hope you feel better soon x x

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    • Sorry Nadine, it’s Sue Baldwin, didn’t realise it did not print my full name. You probably have people to talk too but just incase I am sure my friend would not mind x

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    • I did wonder who it was! I totally relate to the stress/nervous response too. Talking to anyone in the same boat is helpful so would love to hear from other sufferers xx

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  14. Wow Nadine I too have to admit I was completely unaware of what crohns actually was? I really hope that they finally find a treatment that eases your symptoms x

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  15. Thanks for sharing something so personal, babe. I knew a bit about it but this is definitely eye opening. Just hope the treatment kicks in soon and you start to feel better. Lots of love xx

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