Paint the world purple for World IBD Day!

Hi readers,

So as many of you may already know, tomorrow is World IBD Day.

Worldwide, around 5 million people live with Inflammatory Bowel Disease and it seems to be becoming more common and/or more talked about as time goes on. In the UK alone, there are around 300,000 of us who have IBD. It also seems to be becoming more evident about the vast span in ages that people start showing signs and/or are diagnosed with IBD. For me, I was diagnosed at age 7 and I am now 23, but I started showing symptoms before my diagnosis for a good number of years.

blog1

Symptoms are not just the things that make it a “toilet” disease. IBD can take over the whole body in different ways and in different severities, and even when somebody is not classed as having active inflammation (also know as being in a “flare up”), they can still suffer from long-lasting symptoms, for example, from the effects of medication on the body that has built up over the years. I do not have active Crohn’s Disease, but I do suffer from the effects of what steroids have done to my body, and I find stress extremely hard to deal with at times, alongside having quite a poor immune system down to being on a lot of immuno-suppressants for getting on thirteen years. Fatigue, joint pain and mouth ulcers are something that are really proving to be troublesome at the moment. Joint pain mainly occurs in my wrists, knees and my hips. I get recurring mouth ulcers as soon as I start to feel a little bit run down. I also have the on-going problem of my stoma having abdominal spasms which cause narrowings behind it, sometimes for up to weeks on end with little or no relief. Inflammatory Bowel Disease is by no means a short-term thing or something that should not be taken seriously, & something I find myself wanting to repeat time & time again on behalf of all the other sufferers is that just because we look okay on the outside, it does not mean we are okay on the inside. Many of us have become experts at maintaining face when we are actually falling apart inside and struggling to see the light. It is exhausting.

Even though Inflammatory Bowel Disease is a frightening & challenging disease, the expanding awareness that it is receiving is fantastic and the support that the IBD community gives to others in similar positions is so inspiring and warming. I have made many friends due to this illness and even though it is not something that I would ever wish on anyone else, it is nice to know that you are not alone and that people do actually understand. I have found that a lot of people with this illness would do anything to make others smile, maybe because they know what it is like to have been in a bad place and may have been alone with little support or understanding from those around them at one point. This in itself is so amazing and inspiring that even people who feel like they do not have much strength themselves can find it within them to help those others.

Nationally, there are a number of landmarks that are going purple tomorrow in support of World IBD Day which is a huge and great step for the IBD community. These landmarks include Blackpool Tower, Gateshead Millennium Bridge and Leeds First Direct Arena as a few examples.

So what can you do to raise awareness and/or money for World IBD Day?

  • WEAR PURPLE! 🙂 I will be wearing purple to work tomorrow, as is my Mum and my Dad will be wearing one of the #GetYourBellyOut awareness wristbands in support.
  • Share World IBD Day related info and get involved on social media such as Twitter – #WorldIBDDay and #PurplePower.
  • Donate as little or as much as you want to Crohn’s & Colitis UK. It’s as easy as texting “IBDA99 £(insert amount here)” to 70070.
  • Do your #GetYourBellyOut selfies and join in with showing the belly support! You don’t have to have IBD to join in.
  • If you have a stoma bag, maybe ask those around you to wear one of them for a day so they can gain some insight into what a day feels like for you. This is something my boyfriend did with me recently, which meant more to me than words could ever say.

    My boyfriend wore a stoma bag for the day to get an insight into what daily life is like for me & to show his support ♥

    My boyfriend wore a stoma bag for the day to get an insight into what daily life is like for me & to show his support ♥

  • Obviously with more time and planning, you can plan a fundraiser; this could be anything from a sponsored silence to a sponsored run, or a sponsored read to a sponsored skydive for those who are really daring! This does not have to be done on World IBD Day; anytime is as good as any to raise money and awareness.
  • I will also be painting my nails purple! 🙂
  • Have a collection box at work.

There is currently no cure for Inflammatory Bowel Disease, but we will not stop hoping or fighting. Raising awareness and funds can help contribute towards many vital elements in the IBD world such as funding medical trials and research, helping to train IBD nurses and support services, and helping to get medical supplies such as stoma bags to less fortunate people worldwide. These are just a select few that need continued support so that the IBD community can carry on moving forward and hopefully one day find a cure and beat IBD for good. Having severe IBD myself which led to my life-saving operation and having lost my Uncle due to complications with IBD, it is as clear as ever that we should not stop raising awareness and fundraising until we have better treatments and finally get that cure. I would not wish on anyone what I have gone through and what I go through, and I would not wish the pain I feel through losing my Uncle on anybody either; I miss him more than I could physically ever explain and he is a major part of the reason why I carry on fighting as I do now. Even though he is not with me physically, his love and inspiration always lives on in my mind.

bellyhosp

We are warriors. We do not quit. We will fight. We will support one another. We will let the tears flow then half an hour later in public, bounce back with a smile. We will cherish every moment where we are not in pain. We will cherish a good night’s sleep and enjoying food when we can. We will cherish life… We will cherish life purely because we know the true harshness that can be reality of having no quality of life due or having experienced our lives hanging in the balance.

We will face our fears, because are fears are not going to stop us facing our future ♥

sig3

11224121_805884122840416_8459687312210785518_n

Advertisements

Coping with cancellations

Hi readers,

So on Tuesday I was meant to be having my re-scheduled procedure which had been cancelled already around 6 weeks ago. On Monday afternoon, I received a voicemail message whilst I was at work telling me again that my surgery for Tuesday had again been cancelled due to the “bed situation” still not being resolved.

Having to go through the mental process of keeping myself strong and seeing a light at the end of the tunnel with the one cancellation, let alone to experience the same thing again is something I would not wish on anyone. I was absolutely gutted (no pun intended) and still am.

Dealing with pain is absolutely exhausting; not just physically, but mentally too. You’re at a low before you even have to start the day ahead of you, and yet you still have to go out and fight every day. Having a goal to work towards like surgery in a way motivates you. You know that after the operation and recovery period that, chances are, you’re going to feel significantly better and that the pain will decrease, if not disappear altogether. Mentally, you tell yourself this, and somehow you find the strength to keep up the fight and set your energy reserves in every way to keep on pushing as hard as you can until you have that relief. Having that hope suddenly ripped out from underneath you is a feeling I can’t explain but one of helplessness, frustration and upset. After I received the voicemail message, I rang the hospital back and they explained further that they are unable to give me another date because of the fact that the lack of beds situation has still not been resolved even six weeks on. I expressed my concern and the pain I am having to go through each day and the man explained that he is worried about my situation, but until he can give me another date there is nothing that can be done. Even then, there’s nothing to say that my procedure will not be cancelled for the third time. I broke down at my desk at work and was distraught that I had been taken off the theatre list again; that light at the end of the tunnel once again had just been extinguished right in front of my very eyes, and there was nothing I could do as the situation was out of my hands. Not often do I break down and cry with all this. I have had bowel problems for as long as I can physically remember in my life so I am fully aware of a lot of the situations and trials that it throws at you, but I cried my eyes out uncontrollably for about half an hour straight. Everybody has their limits, and in that second, that was mine.

I am fed up of feeling like I am passing glass through my stoma. I am fed up of having to rely on painkillers which only make me feel disorientated and drowsy and unsettled. I am fed up of having to overthink food and whether I eat or how much I eat, and what I eat. I am fed up of the sore skin around my stoma due to the constant swelling and change in size and shape of my stoma. I am fed up of the unsettled stomach I experience and being woken up in the middle of the night due to horrendous stabbing pains and cramps down my back and around my stoma. I am fed up of the inconsistency in output due to the blockages I keep experiencing; there is either very little or suddenly what I can only describe as torrents of output after severe cramps. Most of all, I am fed up of being given hope and then just being let down by what is supposedly meant to be a health service… What sort of service is that?!

I will be hearing back from my stoma nurse tomorrow once she has spoken with my surgeon and then I will take it from there as to what the next course of action is. For now, I am working as much as I can, taking it easy when I can and surrounding myself with the love and care of the genuine people in my life. My family and boyfriend are absolutely incredible beyond. Without them, I would be struggling so much more.

sig3

Introducing my first IBD/Ostomy Video!

Hi readers!

As requested, I have now produced and uploaded my first IBD/Ostomy video. I have also created a YouTube channel for my videos so if you wish to view my channel or subscribe to it, you can do so here: http://www.youtube.com/user/ostomismnotpessimism.

With it being my first video, obviously there are areas for improvement, but I gave it a good go as my main aim is to just provide help and support/information to others.

I will aim to do at least one video a week on different IBD/Ostomy related topics as well, as covered on my last blog post.

Please feel free to view my video & subscribe, or even leave me a link to your YouTube if you share your own IBD experiences and I will check them out. Also, you can leave comments if you wish at the end of this blog post or on my channel, but please be constructive as this is something I have put a lot of effort and care into in order to hopefully spread Ostomy Awareness and make others feel less alone.

I hope you enjoy watching!

Until next time,

sig

I’ve found a bag! (Fingers crossed)

Hi readers,

Hope you all had a good Easter weekend and aren’t feeling too rough this morning after last night’s bank holiday! I am feeling fresh myself so I can’t complain. Hopefully the infection I had last week is finally clearing off too.

So I tried the Coloplast Sensura Convex Light One-Piece for a few days and I got on really well with it. I cut the bags myself to about 24mm to give my stoma a bit of extra room as it tends to swell when it’s active. The adhesive on that particular type of bag itself is the best I’ve ever used in all fairness and even seems to be a little stronger than the flat Coloplast Sensura One-Piece.

imageThis is the last sample of the lot I got (pictured left). You can see from that photo that I haven’t cut that one yet, and you can also quite clearly see the convexity.

Pictured right, at the bottom is the front of the bag. As you can see it has a split cover and is clear not opaque underneath the split cover so you can see the stoma (through the ‘inspection window’).

As far as I’m aware they don’t do the bag in opaque with a split cover, which is the only  drawback I see in my opinion as I’ve always felt more comfortable not being able to see into  the bag. The bag also has belt loops for those who use stoma belts and the baseplate is really strong and comfortable against my skin. The emptying outlet is also really good and easy to empty from and clean after properly.  The only other thing I’ve found to be different when wearing the bag itself is it’s a tiny bit bulkier, which is understandable because of the convex baseplate. I was out for the day on Saturday and the bag material itself I had no problems with against my skin like the previous, so that’s a definite bonus having that comfort. image (1)

I’ve ordered some more of the Coloplast Sensura Convex Light on my next prescription.

Hopefully I will continue to use these. I am also thinking about changing delivery companies so if anyone has any recommendations about which to use, please drop me a comment!

Until next time,

sig

Trying new bags: An update.

Hello again readers 🙂

As I explained in my last post, I’ve been trying out new bags recently to try stop leaks. I tried the Pelican Select Convex and initially got on with these really well besides the few sticking issues round the edges. However, I had a full day out away from home yesterday and found a few issues with them; the material and the emptying outlet. Even at the start of the day shortly after I had put the bag on, I was worrying I had leaks as the material became damp against my skin quite easily and was making my skin sore down near the outlet as it rubbed against my skin. Also, I found it wasn’t that good to empty in my opinion – it was quite fiddly and messy. The way the outlet has two sides and isn’t so much a flap that you can just drop down on top of that made it really hard to clean output from around it properly, especially in the creases at the sides and I found that each time I emptied it output had been seeping out because of this between empties. I had reached the end of my tether with it towards the end of the day and changed it. If the material was softer against my skin (admittedly my skin is quite sensitive) and the outlet was different, then it would be okay, but all in all this bag doesn’t work for me. That’s not to say it won’t work for others though! What works for one person doesn’t work for another so it’s always good to try these things out.

My Coloplast Convex Light Sensura One-Piece samples arrived today. I’ve got on really well with these so far and I’m glad as the Coloplast adhesive has always worked the best for me. I’ve also cut the hole size a bit bigger on the bag (around 24mm) to accommodate my stoma when it moves about more and becomes more swollen when it’s active. These samples have a clear film on underneath the cloth cover though so it’s quite novel being able to see my stoma peeking through when I lift the split cover up as I usually have and will be ordering the opaque version.

Been to the doctors today and got a viral infection he thinks in my throat and altogether, so keeping on top of the ibuprofen and getting rest whenever I can. However, I’m not letting feeling poorly stop my plans for the Easter weekend! Got to keep smiling 🙂

I hope you all have a good Easter Bank Holiday weekend if I don’t post before then & thanks for reading.

Please feel free to follow me if you have a WordPress blog yourself (I would love to follow back & read yours) or subscribe my e-mail which you can do in the sidebar, if you wish 🙂

Thank you in advance.

Until next time,

Image