An open letter to the people who’ve made me feel guilty for using the disabled toilets

An open letter to the people who’ve made me feel guilty for using the disabled toilets

To the people who’ve made me feel guilty for using the disabled toilets,

I know what you see as I open the door to leave the disabled toilets. You see a young girl, whose legs and arms work just fine. You see a young girl, who’s dressed well and had time to do her makeup that morning. You see a young girl, who looks just fine.

You see a young girl, who looks healthy.

I know this. I know this from your judging eyes, the way you look me up and down with a sneer. You don’t even need to say anything.

Though sometimes, you do. You’ll tut under your breath in disgust that a young girl has used the disabled toilets when there looks to be no need.

You’ll make a comment on my being physically abled to your friend, as they nod in agreement.

You’ll approach me and tell me off for using something that I’m not in need of, even questioning my need for using it.

Worst case scenario, you won’t even let me explain myself through shouting at me, disgracing me in public in front of a crowd of people who assume I’ve taken something from a person in need.

When I first started using the disabled toilets, I wasn’t worried about it. I’d been diagnosed with ulcerative colitis, a form of inflammatory bowel disease, and after my bowel nearly perforated I was operated on and given a stoma bag – I knew the use of disabled toilets would be something I’d need when out in public.

When I lived with a stoma bag, the disabled toilets were a necessity for me. I needed the space to change the bag – and the changing table to ensure my products had a sanitary place to sit. I was sure people would rather this than watching me change it in the public toilet sinks.

After having my stoma reversed, I continued to use the disabled toilets. Due to the side effects of the operation, I needed to have privacy, and again, a sanitary environment to put aside products I was using for treatment.

I wasn’t just using the disabled toilets for the sake of it. I was using them because it was much easier to sort myself out in a larger room than it was in a tiny cubicle as people huffed outside because I was taking too long.

But the bottom line is, I was allowed to use the disabled toilets. I am both a ‘Can’t Wait’ card holder and I also have a Radar Key – a key that gives me access to thousands of disabled toilets across the UK. I had been given actual permission to use the toilets because I live with an invisible illness.

But unfortunately, some people don’t get that.

Even when I’ve explained my situation to strangers, strangers like you, my needs have been disregarded because I’m not in need of a wheelchair or a walking stick. You disregard my needs because I’m young and therefore assume I’m healthy.

And because of this, I have over time grown weary of using the disabled toilets. I’ve grown fearsome of using them, in fact.

The comments, the stares and the tuts have become too much to bear. I can no longer use a disabled toilet without worrying about who’s going to be on the other side as I come out, what presumptuous comments I’m going to be subjected to and whether I’m going to be shouted at or not.

These experiences have deeply hindered my health progress, both mentally and physically. From being made to feel so embarrassed and so guilty about using the disabled toilets, I’ve developed ‘toilet fear’, which as discussed in a recent blog post, has left me seriously blocked up inside.

But it doesn’t matter how much I try to change this – the awful comments are far too prominent in my mind.

Recently, so many supermarkets have been trying to make it easier on those of us who live with invisible illness, by introducing disabled toilet signs that depict those who are physically able.

But while it’s a start, it’s still not enough.

A real change can only come from you. You who refuses to believe that disability comes in all shapes and forms.

You who’s convinced yourself that it’s okay to shame someone for using a disabled toilet without even knowing their story.

You who believes it’s okay to dictate whether someone needs to use the disabled toilets or not.

The sooner you come to understand that the disabled toilet is a necessity for more than just those who are physically impaired, the sooner those with invisible illness, including myself, will stop feeling scared about – or even guilty for – using them.

Please, if you see a physically-abled person leave the disabled toilets, remember that not all illnesses are visible. Remember that that person is probably terrified of the looks and comments they’re going to receive just for using them.

Be a person who gives them a smile, instead, letting them know that you understand that despite them looking well on the inside, their needs for the disabled toilets are just as important as those who present disability on the outside.

They’ll thank you for it more than you’ll ever know.

How to decide if stoma reversal surgery is the right option for you

How to decide if stoma reversal surgery is the right option for you

Yesterday, to kick off the start to this new blog, I wrote about my experience with having had reversal surgery. Unfortunately, it wasn’t a very positive blog, but in order to introduce what will be one of the main subjects on this blog, I felt I needed to write it.

However, after reading, it seems many of you who live with stomas and are thinking of reversal surgery felt disheartened about making your decision, and for that I am sorry.

Just because I’ve had a bad experience, doesn’t mean it’ll be the same for everyone – and there’s still hope for me in terms of fixing it and allowing me to lead a ‘normal life’.

After receiving this sort of feedback, I thought it would be good to write a post on actually making the decision to have stoma reversal surgery, in hopes that people won’t continue to feel conflicted.

Firstly, I chose to undergo stoma reversal surgery for several reasons. I had been having problems with my stoma. My output was always very watery no matter what I ate meaning I’d have up to 10 bad leaks a day. I’d spend so much time fretting about whether or not my bag was ‘clean’, which resulted in bag change after bag change. I’d have to do this at home, in public toilets and while at work – the latter of which was very frustrating.

Because of the leaks, my skin was always red raw and often bleeding. One time the changes had irritated my stoma so much that it turned purple and I ended up in A&E. I’d use different products to try to look after the sore skin – with only the LBF barrier wipes working – but every other day the soreness would come back, which meant bag leaks were very painful.

Alongside this I found living with a stoma to be hard for mental health reasons. As someone who lives with OCD, my life was revolving around whether or not I was clean, convincing myself that even if the bag was stuck on properly, it wasn’t, and therefore needed changing. I couldn’t kick the worry of a leaked bag out of my head which caused me to become very anxious about it all of the time – especially when out and about and not near a toilet.

While the bag didn’t affect my confidence or my social life, these reasons alone were enough for me to warrant the idea of a stoma reversal. And the bottom line for me was, that if I didn’t do it, I’d need to think about making my stoma permanent to avoid the rectum deteriorating – and so for me there was no doubt about it, I was going to give the reversal a go.

Obviously, a stoma reversal is a huge decision as it can introduce so many lifestyle changes – especially some that you don’t have to deal with when you have a stoma. With a stoma, you’ve got the comfort of having a bag and knowing that if you can’t reach a toilet immediately at least you’ve got some time to find one. It’s not quite the same with a reversal, depending on how much you need to go during the day, it can often be very urgent, leaving you in pain or even at the point of having an accident.

But on the other hand, with the reversal you’re not spending time changing bags or worrying about taking different appliances with you when you’re not at home.

Again with a stoma, people are usually very healthy and gain weight back after being poorly, but with a reversal can come weight loss in the beginning due to your bowels re-adjusting to ‘normal toilet life’, and there may be a need for further medication to slow your bowels down so that you’re not visiting the toilet as much as at first you may need to.

The bottom line is, there are so many pros and cons to having a reversal, just like there are with a stoma bag. But it’s up to you to make the decision over what you’re going to do.

It’s always good to read up on other people’s experiences – though you need to remember that everyone is different and everyone has both good and bad experiences. It’s also important to remember that you’re less likely to find positive experiences when searching online – simply because nobody normally feels the need to write about it for the sake of it if all is going well.

However, a stoma reversal is a serious surgery that needs to be thought deeply about before any decisions are made. Not just the surgery itself, but you’ll need to prepare yourself for recovery and getting back on your feet, which depending on how quickly your body heals, can take time.

As with everything, there will always be good days and bad days – you’ve just got to decide whether you’re prepared for them.

Many people choose to stick with a stoma bag because they’ve been so poorly in the past that they’re so happy to have a new lease of life that they don’t want to change it, and that’s great.

Then there are people like me, who won’t want to miss out on the chance to go to the toilet ‘normally’ again if it’s offered.

For me, it really was down to a ‘What if’ decision.

I didn’t want to make a decision to have my stoma made permanent if there was the option not to, as I feared that in years to come, as I was so young at the time, it may’ve been a decision I’d have come to regret.

And I think that’s the most important deciding factor of all who are questioning reversal surgery – forget other people’s experiences and the possibilities of it not working out – and ask yourself, is not going for the reversal something you may come to question in years to come?

If the answer’s ‘yes’, forget about everyone else, and do what’s right for you.

What life’s really been like since having reversal surgery

What life’s really been like since having reversal surgery

Over the past two years, I’ve written little bits here and there about my reversal surgery in a number of articles, but I’ve never actually written a full run-down of what’s happened since getting rid of my stoma. 

For a blog like this, I think it’s vital that I do so for people who may be finding it in hopes of searching for some advice or past experiences. Though for those people, I’ve got to admit my experience has so far been a negative one – but it’s good to remember that everyone is different.

I underwent the knife again in October 2015. Basically, the operation consisted of putting me back together. They pushed my small intestine back inside of my stomach, cutting through my stomach muscles, and attached it to my rectum. This is called a ‘straight re-join’ reversal.

What this means, is that with no colon – which is there to solidify your poo and hold onto it – my digestive system works very quickly, and the stool is unformed. Yep, you pretty much have diarrhoea for the rest of your life. Fun.

When I was told this, I wasn’t that bothered. I’d had so much trouble with the stoma – including constant leaks and burnt skin – that I was willing to give anything a try. Especially as I’d been told I’d likely only use the toilet between 2-3 times a day anyway, which was much less than the amount of bag changes I was having to do per day.

As mentioned in a previous post, the surgery took a lot longer than expected. One hour turned to three, and a three-day stay turned into two weeks.

Over the two weeks in hospital, I was very ill. I couldn’t eat for the first part, as my digestive system refused to work properly. Everything I attempted to eat wouldn’t digest and therefore I spent a lot of time vomiting. As I’d had a stoma for the best part of a year also, it took a while for my bowels to re-adjust to ‘normal’ life, and so for the first month I was pretty incontinent – which didn’t make me feel very nice.

After the blip in hospital, however, the recovery was pretty quick. The surgeons hadn’t stitched up the hole where the stoma used to be, as it needed to heal from the inside, and so it was pretty weird to be able to see into my stomach for a while, but apart from that, I felt fine.

I was having to use the toilet between 6-8 times a day, but I assumed my body would adjust over time and things would eventually slow down.

With this in mind, I decided to go back to work. Now, my work is a bit tricky. I live in West Sussex, and I work in London. Unfortunately because of all my health problems I haven’t been in a position to re-locate to London, and so I’ve always commuted. This has worked fine in the past, even with a stoma bag, but with my reversal things were made very difficult.

I’d be up early, needing the toilet as soon as I woke up, and then I’d end up needing it again on the train, and then when I arrived to work, and then again and again, and so on.

Soon after getting back into work I developed ‘public toilet fear’ – aka a fear of going to the toilet in a public bathroom.

This fear stemmed from several occasions while on my lunch break, where I have actually been confronted by several people for taking a long time in the stalls and for using the disabled toilets despite having a radar key. Because of this, I struggle now to use them which leaves me feeling incredibly blocked up and in pain – one time I became so blocked up that it actually caused an intestinal blockage.

Over time, the need to use the toilet excessively started to make things even harder, and by the time I’d reach the end of a working day I’d be in an excruciating amount of pain, to the point of actually collapsing upon arriving home.

It didn’t matter what I ate, what I drank or how much medication I took, my bowels refused to re-adjust to life without a stoma.

Eventually, my surgeon referred me to a physiotherapist to see if they could help. This was a three-month process of which I had to take off of work to avoid travel messing with the routine. However, sadly this didn’t work out and I was left with the same symptoms as before.

Since going back to work in February 2016, I have been on and off in the office due to my bad health. Luckily I am able to work from home, but of course I would much rather be in the office and I can’t wait to go back full-time.

It’s something I’m really looking forward to and is motivating me to get better, because currently, I’m at a loss of where things are heading.

Most recently, I have been experiencing horrible symptoms including abdominal cramping, blood and I still have to use the toilet up to ten times a day. I have been to the doctors on numerous occasions, to be given steroid prescription after steroid prescription.

And now, at a loss of what to do next, my surgeon has referred me to St. Marks Hospital in Harrow, London – a bowel specialist hospital that will hopefully be able to help me.

They will be doing a full physical and psychological investigation in hopes of fixing what my surgeon has dubbed a very ‘complicated bowel’.

Currently, all I can do is try to keep myself as comfortable as possible, not fret too much about what other people are doing, focus on my work and await this appointment that will hopefully be exactly what I need for a new lease of life.

It’s been a long, tedious ride and there are times where I’ve questioned the point in life, wondered whether I made the wrong decision to have a reversal and blamed my poorly body.

But at the end of the day, if I hadn’t gone for the reversal, I know I’d have been forever wondering ‘what if?’.

Why I’ve decided to start blogging again

Why I’ve decided to start blogging again

At the end of 2015, I bid farewell to my old blog, morethanyourbag.com. 

If you’re not familiar with it, I spent the best part of a year documenting my time living with an ileostomy bag after undergoing emergency surgery for a stoma after unknowingly suffering with ulcerative colitis, a form of inflammatory bowel disease.

In October 2015, I opted to have the stoma reversed, which meant my small intestine would be stitched back to my rectum to allow me to go to the toilet ‘normally’ again.

Of course, I was excited. I thought it’d be a clean slate for me and that I’d be able to get on with my life and forget the surgeries had even happened. I even finished up my blog in the process, deciding that I’d no longer have anything to write about.

But I was so, so wrong.

I can’t believe it’s taken me this long to set up a new blog. I’m not sure if it was out of fear or just because I didn’t know how to put everything into words, but I’m hoping that writing about things once again will prove to be both helpful and therapeutic.

It’s been nearly two years since I had my reversal surgery, though it only feels like months ago.

Sadly, things didn’t go to plan from the get-go.

Prior to the operation, I had been told it’d last an hour and I’d be out of the hospital within three days. The operation ended up being three hours long as they had to re-cut down my original scar and through the stomach muscles, and I was in hospital for two weeks, incredibly ill.

I went back to work within 6 weeks of being out of hospital, and while at first things seemed fine, my health quickly deteriorated. I couldn’t get through a day without having excruciating stomach cramps until I’d reach a point of collapsing.

This was not helped by my need to use the toilet up to ten times a day – despite previously being told I could expect to use it around three times a day.

Alongside the cramps and the toiletry needs – which still go on two years later – I still experience other nasty symptoms that leave me feeling generally rubbish.

So basically, long story short (which I will be going on to talk about in future posts), my reversal hasn’t been very promising. And it’s been a real struggle to deal with, in all honesty.

Currently, I work from home, as I am waiting to see specialists at a new hospital for a full investigation into what is going on with my reversal – and why things still aren’t as they should be.

I am very lucky to have amazing employers who have been incredibly supportive of me and for that I couldn’t be more grateful. However, I can’t pretend that it’s not hard.

I’m happy to work from home but I find it so very isolating and lonely. I watch as my colleagues and friends venture out into the world, working in luxurious places and travelling, and I’m constantly stuck in my bedroom.

I know I can’t moan too much, but I feel my life would be so different if I’d never suffered with IBD.

But, as mentioned on my ‘about me’ page, I will be writing about more than IBD on this blog – focusing on other invisible illnesses I live with – including bipolar disorder.

I was diagnosed with bipolar disorder type 1, a type of mood disorder, around a-year-and-a-half ago. Type 1 means I have more ‘manic’ episodes than depressive – though each are as severe when I’m in either or.

Living with both IBD and bipolar disorder has been very hard because I find they can often counteract each other. You can feel good physically but awful mentally, and vice versa.

And in all honesty, there have been times where the bipolar episodes have made me feel worse than I ever have physically.

But with the right medication, I cope – and I’d really like to use this blog to venture further into each diagnosis, how I live with them and the repercussions that come alongside, in hopes that it helps other people going through similar things.

The name for this blog, ‘But you look great’, is inspired by comments frequently heard by people with invisible illness – usually coming from others who don’t quite understand that you don’t need to look bad on the outside to feel it on the inside.

Comments such are these show that so much more awareness for invisible illnesses – be that physical or mental – is needed.

For future posts, I will be talking about life with mental illness, mental breakdowns, self-harm, mental health medication and seeing mental health professionals – including the Crisis team – to highlight what it can be like to live with bipolar disorder.

I’ll also be talking more on my progress with my reversal, problems using public toilets, body confidence, all things poo-and-taboo, hospital trips and how the medical team intend to put me on the mend.