Don’t Respect Me Because Of A Disability

I’d be lying if I said we lived in a non-judgemental world. That couldn’t be further from the truth. We go through life perhaps sometimes unaware that we are judging people on a daily basis. Judging them based on what they choose to wear, who they choose to date, what career path they took, which education choices they made, you name it, we’ve judged it. And I’m not saying we shouldn’t judge people, because sometimes judgement leads to the greater good. But what I’ve noticed, since having what you would call (even though I do not agree with the term) a “disability” is that people are judging me less. Isn’t that a positive thing? You may think to yourself as you read this. Not to me it’s not. If anything I find it a little insulting.

Let me just explain a recent situation to give you a little more information on why I feel this way. I was out a few weeks ago with a friend, and we bumped into a few of his friends in a pub. I’d never met these people before, and they certainly didn’t seem like they wanted to get to know me, either. I tried to join in with their conversation as the night went on but they simply weren’t interested. They disregarded my attempts to create a new discussion and avoided as much eye contact as possible. Sneering at each other each time I opened my mouth. At first I wondered whether they just didn’t like me, or whether it was something else. Perhaps they didn’t like the way I was dressed. The initial plan was to go to a bar and so I’d dressed up a little, whereas they were a little more casual. The more I think about it, they most certainly were looking me up and down as we made our entrance. I slowly gave up trying to have any input and sipped on my drink, wishing I were as far away from the situation as possible. But then something funny happened. Whilst in a world of my own I felt a nudge on my arm. My friend had been pushing me into a conversation I didn’t even know had begun. “Tell them about your surgery” he said. I looked at him confused, as I started to catch on to that they were currently discussing. They were talking about disability. Whilst I was a little annoyed that he had associated my surgery with having a disability – for I had undergone emergency ileostomy surgery earlier this year – I took the opportunity to have some involvement in a discussion.

It’s not that I would be ashamed to have a disability and by no means am I embarrassed of my ileostomy, I just do not feel disabled. I do not see it as a disability. If anything it enabled me to live. My body is just as able as the next healthy human beings.

I watched these people with wide eyes and dropped jaws as I finished my story. All of a sudden, they were interested in me. They complimented me and told me what a brave and inspiring woman I was. They began asking me questions about my home life and career and seemed intrigued by my potential answers. It was as if I was talking to completely different people. Were these the same people that had ignored me for the past hour?

Which leads me to my point. I found it incredibly saddening how quickly these people were to change their manor. They found respect through what seemed to be pity for me. After finding out something personal about me, they became more and more interested. Would they have been interested should it have been a different story? I’ll never know. But why not take the time to get to know me? Why had my story stopped photo 1(3)you blatantly ignoring me for the remainder of the night? I feel we as a society should take more time to get to know someone, and less judging, regardless of his or her cover. Regardless of what we imagine them to be like. Because you never know what someone’s been through to be here, sitting with you today. And you never know, you just might regret not listening to their story. A story which shouldn’t have to be the making or breaking of a friendship. Respect the person, not the disability.

What It Feels Like To Be Cut Open & Have Your Insides Taken Out

Obviously I was put to sleep during my surgery. I can’t sit here and reminisce on a memory that I wasn’t aware of. From the moment I went into the operating theater until a couple of hours from coming out, I was out like a light. And the idea of the surgery was most definitely more frightening than the actual thing itself. But when I had eventually come out, I’d awoken sooner than they’d expected. According to my parents and the doctors, I’d tried to fling myself off of the operating table. Luckily I was stopped, otherwise who’d known what else could have gone wrong!

What I can tell you though, is that after the surgery, you feel weird. Not just, ouch, that hurts weird. But kind of empty. Of course, I’d had my large intestine taken out so you could say I felt a little lighter, but it wasn’t just that. I didn’t completely understand what had happened and I no longer felt like myself. I felt like it had all just been a dream, and therefore I had no need to take it in.  I’d gotten so used to feeling ill weeks prior to the surgery that I wasn’t ready for it to just be gone. It was great not having to run to the toilet every two seconds, and just being able to lay there – but it had been replaced with a whole new meaning of the word pain. My body vibrated as I forced words out of my mouth, gasping for help in a robotic, monotone whisper. My stomach stung though my scar felt numb. Not the sort of numb where you can’t feel it though. Sort of like the aftermath of intense pins and needles. It hurt to move so I didn’t even bother attempting to for a few days. I was forced to when my catheter had slipped out of place though. I’d never realised how much we take our stomach muscles for granted! The simplest tasks had become virtually impossible!

It’s odd looking down to see a big red scar down my stomach every day. It’s not as if it’s one of those scars you wouldn’t notice if you didn’t know. It’s so blatantly obviously there, in a line that tells you “I’ve been wide open!” I don’t mind the scar so much though, it’s just the image of what had happened for it to be there, sitting o prominently. I’m no more educated with the surgery than you who reads this now, either. Which is even scarier! I have no knowledge of what it looked like, how it felt or in what order things were done. And that’s slightly more terrifying, it’s almost as if it didn’t happen!

Recovery after the surgery itself isn’t what you’d expect, either. Of course I was sore. But it was more of a drain than anything else. I definitely suffered with extreme fatigue, afterwards. But again, that is one of the major side effects of having an ileostomy. Your body has trouble absorbing as many nutrients as before, and you are more at risk of a B12 deficiency (iron deficiency). It takes a while to get back on your feet and to adjust to things. But to be honest, being cut open has been the least of my issues throughout the whole experience. And it’s weird how quickly my body has adjusted to things. Although I felt different after the surgery, I’m surprised at how normal my body feels. I genuinely did think I’d notice I have such a large part of me missing. But I guess when you compare it to the rest of your body, it’s really not that bad. And when you come to think of it, I don’t think anything is really that bad. Not when you’re alive.

What’s The Difference Between An Ileostomy And A Colostomy?

I’ve seen a few confused comments regarding the difference between a colostomy and and ileostomy. Whether one is worse than the other or whether they’re just different names for the same thing. A term colostomy also seems to be more well known than ileostomy, and a lot of people get mixed up and tend to just use this term regardless of the actual name.

Although it looks and sounds pretty similar, a colostomy and ileostomy could not be more different. A colostomy is an opening of the large bowel onto the surface of the tummy (abdomen), whereas an ileostomy is an opening of the small bowel onto the surface of the abdomen. You wear a bag over the opening, to collect the waste matter from digestion that would normally be passed from the body as a bowel motion (stool).

You can also remember it from the ‘colo’ and the ‘ileo’ parts of the words. The longest part of the small intestine is called an ileum. And the colon is the large bowel. Forming words colostomy and ileostomy.

As I have an ileostomy, I had my colon taken out, but they a part of my rectum so that it would be possible to have a reversal in the future. I’m not too sure what happens with colostomies. It’s not really my grounds to talk about it and I don’t want to google it and end up misunderstanding, but to my knowledge, it seems that you still have a small and large bowel.

I think it’s important that you take in the differences.. and notice that colostomy and ileostomy are very different. I’ve had moments where I’ve found it a little insulting that it wasn’t looked into a little more, for example when a journalist was writing an article about me, and started the article writing ileostomy and finished it saying I had had a colostomy – which of course are two different procedures. You wouldn’t say you had ulcerative colitis if you had crohn’s, would you? It’s no big deal, but I find people will open up to you more and become a little more accepting when others are taking the time to learn and acknowledge.

I’m no doctor and I certainly am not wikipedia so if you did want to look further into it, please do, because I’m not great at explaining things. And it can be quite hard to explain without writing it! So I hope I have simplified it a little, and you now know the difference! I still don’t understand what’s gone on with my body half the time…. Do I have ANY organs left or??


Why The New Quit Smoking/Cancer Awareness Advert Needs To Be BANNED

If you’ve read my blogs before, or know me at all, you’ll know that I am all for raising awareness. For me, the main issue I hope to raise awareness for is IBD and Ostomy. I spend a lot of time working closely with different companies, support groups and charities, and encourage others to raise awareness also. There are a lot of things that can bring you to needing an ostomy, including colon cancer. I have met others who live with an ostomy due to battling cancer, the loveliest people who are so grateful for their stoma now, as they now live the lifestyle they always hoped for.

So to me, the new Centers for Disease Control and Prevention advert came as a complete shock. I’m not sure if you have seen it, so I will just quote exactly what was said.

“I’m Julia, I smoked and I got colon cancer. I had chemo and two surgeries. But what I hated the most, was the colostomy bag. That’s where they re-route your intestines so you have bowel movements that go into a bag. Through a hole in your stomach. My tip is: get over being squeamish. You’re going to be emptying your bag 6 times a day.

The video ends with her holding up an ostomy bag, with a voiceover telling you where to visit to help you quit smoking.

I know it may not concern many people that don’t have an ostomy, or those whom don’t know much about them, but to me, it hurt. It hit a nerve, quite hard. Watching this video bought out so much anger that I didn’t know was there. I am absolutely, utterly disgusted that they feel they can advertise a quit smoking campaign with something that has saved so many lives.

It angered me for many reasons, upset me on so many peoples behalves. Now, I understand that the aim of this advert was to help smokers quit. I understand that the aim of this advert on their behalf, was a positive one. But what I don’t understand is why they felt the need to use a condition that can be caused by a variety of diseases – not just colon cancer – to put people off of smoking? Why should we have our condition used as a negative towards something like smoking?

How the hell do they think that makes people who live with ostomys feel? People like me? Who at 19, underwent EMERGENCY Ileostomy surgery for ULCERATIVE COLITIS. This was not in anyway my fault. I did not do anything to add to my need for an ostomy, nor could I have done anything to prevent it.

This advert is painting the image that a need for an Ostomy is caused by something we have done to ourselves. Telling us that we are facing the consequences for disrespecting our bodies. Treating it as a punishment; telling us that we deserve it.

It angered me even further to know that the woman speaking had been through chemotherapy and countless surgeries, but decided that having to wear a colostomy bag was the worst of it for her. How could she forget to mention the fact that her colostomy bag was the reason she’s still here to help contribute to this horrendous advert?

Wphoto(7)hat has insulted me even more is that the company felt confident enough to use a life saving disability as a reason not to smoke, yet couldn’t get their facts right. In the videos description, it states “She needed an ostomy bag taped to a hole in her abdomen to collect waste.” This is absolute shit. You don’t TAPE an ostomy bag to your stomach. And there is NOT just a hole in your abdomen. Your intestine is bought out to keep it working. To keep you alive. There is no hole, there is a stoma. A part of your intestine that everyone is born with, just positioned differently.

How the hell does this company have the audacity to make people feel so insecure? And how the hell do they have the nerve to use my condition as an example of why you should not smoke?

Can you just imagine it. Just please, take one second. One second to think about your biggest insecurity. The thing that you feel makes you feel different to the rest of the world. The thing that you would have to talk to somebody about in complete confidence to overcome. Okay, now imagine it being talked about negatively in public. Somebody taking that insecurity, and using it as a consequence of something that could kill you.

That’s exactly what this company did. This company took smoking, something obviously unhealthy, which carries a lot of risks. Something that a lot of people deem as dirty. Something that can cause you illness in so many ways. This company took that, and expressed the opinion – not fact – that if you carry on smoking, you will end up with a stoma bag. Oh wait, they didn’t even mention a stoma did they – sorry. And what’s worse, is the fact they tell you that you will need to get the “squeamish” side out of your system to be able to cope with it.

How dare they. How dare they do this. My ileostomy bag saved my life. It does not make me feel squeamish. If anything, I am just damn grateful to be alive.

There are so many people out there with ostomys, due to a variety of illnesses. I can guarantee most of these illnesses are not self inflicted. I won’t go into detail with these illnesses because I can’t pretend to know much beyond what Google tells me. But what I do know is myself. And I know that my bag is not something to be used to counteract a negative decision. It is not something to make others squirm. And it is definitely NOT something that should be used as a fear. It is what has kept me walking on this earth, and has kept me living. Really living.

This advert should be banned entirely. Please do carry on helping others quit smoking, and please carry on raising awareness for Cancer. But do not by any means do this by making people living with other conditions feel like they’re inadequate. Because by doing this, you are making it twice as hard for people like me to speak out. To raise awareness on our own behalves. To feel normal. For people like me, my bag was a god send. It was the difference between life and death. It is not something to be ashamed of or disgusted by.

How are we meant to move on and embrace our bodies when such a large company are drilling it into the minds of society that Ostomy’s are nothing but a consequence?

We’re not an anti-smoking campaign. We’re people. Real, living, feeling people. Remember that.

Sore Skin Around A Stoma

I thought I’d blog about skin care as I’m currently having troubles myself with the skin around my stoma. As you can see from the photo it is extremely sore, but it’s not always like this, only when I run out of my trustful LBF wipes. For anyone else with a stoma, you’ll know that so many people tell you not to use the products on your skin if you have sores, as it may work as an irritant, meaning you’re stuck with all sorts of creams that just make your bag so damn loose, causing leakages. Other products such as powders and sprays haven’t worked well for me either – perhaps I just have really sensitive skin.IMG_3190

These wipes, unlike other products, are usable on your actual stoma with no side effects. You can clean up to the stoma as close as you like, without worrying about infection. The wipes also dry completely within 30 seconds, so you won’t have any leakages using them.

My skin has been like this on several occasions, but is currently in it’s worse case scenario as I am more active, causing my ileostomy bag to be pulled around more. It first got sore however, after surgery. I tried so many sprays and creams but nothing was moving it, and was just making it worse with the leakages I was getting within and beyond the flange of the ileostomy bag. As soon as I started using these wipes, my skin cleared up, and my stoma itself looked healthier because I was able to clean it with more than just warm water! IMG_3207

I always change my bag straight after a shower – of which I do without my bag to give my stoma some air and to clean my skin thoroughly. I don’t feel warm water on dry wipes is enough for my skin – but each to their own!

I know that within 3 days my skin will be back to it’s healthy looking state.

These LBF wipes come from CliniMed. What’s also fantastic about company is they will first give you a free sample of these LBF wipes just to see how your skin feels with them, so you’re not at risk of wasting any money!

This was just a quick blog post because I thought it may be helpful for others in my situation. Sometimes it’s better to read a personal opinion than one you may find on any stoma care website – especially as it’s coming from someone with a stoma!

Let’s Talk About IBD

I wanted to write something about IBD but I couldn’t work out whether I wanted it to be informative, factual, funny, or emotional. It turns out I just wanted to write something honest. I’m not sure if this is a post that many people will read, but I hope the people that do will appreciate that these are just my views, and not everybody has to agree.

I personally think that IBD is something that is not as globally recognised as it should be. I feel people shy away from talking about it because they find it embarrassing. I understand, lots of people would find it awkward talking about their toilet experiences, but for some people it isn’t just a day to day occurrence. It isn’t just a routine or something their body does on a normal time scale. IBD can take over your life. It can really, completely control you, and destroy every ounce of self esteem you once maintained.

It leaves you feeling not just physically, but emotionally and mentally drained. It can become so empowering that it consumes your entire lifestyle. It stops you going out, it stops you eating, it makes you anxious, nervous, it tires you, it disheartens any hope you could have of a normal lifestyle.

What many people fail to understand is that IBD is not just toilet troubles. It is not just constipation, diarrhea or stomach cramps… It is the thing that keeps you up all night, and leaves you heavily fatigued for the rest of tomorrow, it is the thing that makes you say “sorry, I can’t make it” to things you’ve been looking forward to forever. It is the thing that makes you late to work, that makes you stop 10 times before you reach your destination during a 15 minute drive. It is the thing that cancels your dates, because you’re too scared of what he or she might say. It is the thing that keeps you inside all day because you’re too afraid of public embarrassment. But on most of all, it is the thing that experiences too much negativity. Too many people not understanding. Too many people seeing it as an excuse.

I feel that IBD isn’t just known as a hidden disability for the fact that it is not always visible, but for the fact that we choose to keep it hidden. So many people won’t talk about it to avoid public embarrassment. To avoid misunderstanding and to avoid judgement. And I mean, that’s sad right? I don’t mean that in the “pathetic” sense, no, I mean it’s genuinely upsetting. It’s awful feeling that we live in a world where illnesses are only sympathized with when they are visible. I mean, it took me having a bag on my stomach for people to want to be there. People knew I was in hospital, yet no one asked why. As soon as people saw a large scar and bag on my stomach, they wanted to know. They wanted to understand, they wanted to sympathize. And yes, I am truly grateful for this, but it shouldn’t be this way. I mean, if I was to call in sick or cancel on someone now, people would understand that I’m recovering from what was a a very traumatic surgery. But if I was to cancel beforehand? Do you really think my boss would have understood the excuse “I’m sorry, I can’t come in because I’m scared I won’t make it in time..”?

How about we all take our heads out of the clouds and take a few minutes to learn about IBD, to learn about Ostomy’s and to learn about the dangers. It doesn’t just effect people like me, some people are incapable of dealing with it. And that’s not right. It’s not fair. We should be helping them deal with it. Treat people how you would want to be treated. Imagine being ridiculed for an illness that truly took over your life. Imagine being made to feel more alone in a world you already felt you had to hide away from.

Just imagine, and think, and learn. We should all be a little more open about IBD. Because it really would make the world of difference.

Showering With A Stoma

It’s crazy how much we take for granted, even small things we do on a daily basis that we’d never stop to think about. Things we feel are no bother at all, they’re just things we we learned to do throughout life.

I showered without my ileostomy bag for the first time, and although it felt amazing on my skin, it was a bit of a worry not having any cover on my stoma. My skin had been so itchy, so red and sore; so feeling warm water over it for longer than a couple of minutes was bliss. I showered pretty simply, but soon realised I was too scared to risk leaning over to shave my legs, or to stand fully in the shower whilst washing my hair, worried the chemicals from my shampoo may get into the wound. The shower I managed to have was very restrictive, and it made me very aware that I’d have to relearn a few things if I was to shower without my bag a little more regularly.

Getting out of the shower was the most worrying part, as it was very awkward to dry myself. Usually, when wearing my bag, drying myself is not an issue. This time, I had to keep a dry wipe over my stoma with one hand, wrap my hair in another towel with the other (so that water did not drip back down to my stomach), and slowly bend down to reach for another towel (also with one very awkward hand) and finally, at least make attempt to pat my self dry as best as I could. Of course, the towel on my head kept falling off making it very awkward for me to get dry, and then to make matters worse my stoma chose the worst time to start working, so I ended up having to race around my bathroom getting a fresh bag ready.

Normally, when changing my bag, I measure my stoma with a template, and draw it onto the “flange” part (sticky part) of the bag. But this time, I really wasn’t prepared! I had to roughly measure whilst standing still very damp with my hair dripping down my attempt at a dry body, and stick the bag over my stoma – which was still playing up. Of course, with me not being able to dry myself in time, the bag took time to stick down. This is a bit of a worry for me as I’m still a little cautious of leaks.

Well, that was pretty much most of the evening gone. I just can’t believe how quickly the simplest of things can turn into such a task. It’s safe to say it’ll take a lot of practice before I can shower without my bag again! I just wish it didn’t feel so bloody good!