A rough start to the year.

Hey readers,

I hope you’ve all had a great start to the year and have had good health. To those of you that are having problems or who are unwell or in a dark place at the moment, I hope you get better really soon and have the courage to keep on pushing on with it.

The beginning of the year for me has been tough but I am still pushing on with it and trying to get through the tough times. We had to have one of our dogs put down recently and obviously that was really upsetting and a hard thing to have to decide, but it was for the best. I think that’s the thing with pets; as heartbreaking as it is to have to decide to let them go, you can’t keep them on the planet for your own happiness. They can’t tell us how much they’re suffering so really we just have to go on our instincts and veterinary advice because from our dog’s tests and how she was behaving she was clearly in pain and unfortunately wasn’t going to make a recovery. I guess we focus on the time we had with her and the fact that we gave her a good life, despite her passing away at the age of 7, which is quite young for a dog. If they had also found out about her health problem before she was rehomed with us, they would not have rehomed her and she would have had to stay in kennels or be put down, so I guess that’s another saving grace in the sense that we gave her a happy life and a safe home. She was so cute and had the softest ears ever. Rest in Peace Daisy ♥ On the health side of things, I was welcomed into the new year in style in the first week of January with the start of a Crohn’s flare-up. Going two years and four months without one in itself though is an amazing thing for me as it’s the longest I have ever gone since being diagnosed without having a flare-up. It started with stomach pain which was really grating and uncomfortable and really tiring then it just got worse and my appetite decreased to the point where I could not even eat a snack or half a meal before the pain kicked in and I chose not to eat to combat the pain. Even smelling food gave me stomach ache, which is what made me go to the doctors because to me that is a tell tale sign of my experience with Crohn’s. I also felt really sick and very fatigued. Stacey was very loud and unhappy and I had a lot of output which was like water and increased amounts of it. I had urgent blood tests done at the doctors and got the results back in the next 24 hours and they showed that my C-Reactive Protein (Inflammation) Markers were sufficiently raised, so my GP put me on 30mg steroids straight away for a week and luckily this seemed to get the flare-up under control before the Crohn’s really set in and needed further treatment.

At present, pain-wise I still get the odd stomach ache daily and still feel quite tired and achey some days but my appetite is back to normal, if not more; I’m always really hungry at the moment! I also feel that my iron infusion has probably started to kick in as I don’t find myself wanting to sleep now in the day or suddenly feeling the need to sleep at any point before. I don’t feel like I’m running on empties energy-wise at the moment which is good. If anything, I struggle to sleep now!

Until next time,

Best wishes from Amy & Stacey Stoma x x

Another year with Stacey complete!

Hi readers,

I hope you all had a good Christmas!

I thought with it being the penultimate day of the year I’d do my final post of 2013 and just summarise how the year has been for me living with a stoma.

Compared to the many years of being ill before, it has been a great year for me & I have accomplished even little things that I could have never dreamt of before having my surgery, such as eating a full meal, having a good night’s sleep free of pain and planning a trip out that doesn’t revolve around toilet stops! I’ve had Stacey for 2 years and nearly 5 months now – time flies!

I have only really had a few minor issues with my stoma in 2013; these being the muscle cramps behind it which I got prescribed tablets for, really thick output, my iron levels and more recently, a few irritating bag leaks. Luckily, I haven’t suffered that much the last month or so with the muscle cramps but when I do I find that the Alverine I was prescribed really helps. I also had a few weeks where my output was uncomfortably thick – I felt like it was really struggling to come out at times and it made me feel really clogged up inside. This seemed to pass within a week or so by minimising foods that bulk you up such as carbohydrate-rich foods like pasta and potatoes and making sure that I had plenty of clear fluids. I also found fizzy drinks helped too with the high sugar content and gas to push things through. My iron levels I have always struggled with, before and after surgery. When my Crohn’s Disease was active I suffered with Anaemia of Chronic Disease; this is anaemia usually typically found in those with chronic health problems/disease and/or those with inflammation present in their bodies, usually in higher quantities, such as in moderate-severe Crohn’s Disease in the intestines. There are many ideas and or arguments into understanding what causes anaemia of chronic disease I understand but it seems to be that there are more than likely a few or several contributing factors to it, such as diversions of iron in the body or problems with iron stores due to disease. I had my iron infusion a week and a half ago now and so far haven’t noticed a difference, but I was told it can take up to a month in some people for them to start noticing the benefits or even longer, so fingers crossed that I do start to notice. In the New Year, I will be organising a blood test to check my iron stores within my body again and see how much the transfusion has helped internally. On another issue, the past few weeks I have had five bag leaks, which is a lot for me considering up until then I had only had a handful over the first few years. I can’t really think of what has caused them; my guess being that my stoma has been a bit up and down in size and the fact that I’ve not checked enough that the adhesive ring of the bag that fits around the stoma has not adhered to the skin properly due to me either being in a rush or not getting it properly over my stoma all the way round, causing output to leak underneath. The Coloplast bags themselves that I use are great and are very secure – the adhesive is the best I have found and works well for a lot of people I know with ostomies compared to other bags. Despite these issues, I would not swap having my stoma for the world because it really did save my life, no exaggeration about it. The issues I have encountered are extremely minor compared to what I have had to deal with before.

2013 has also introduced me to more inspirational people who amaze me with what they cope with and still manage to smile. I have spoken to many going through surgery and kept in contact with those I have known before this year and every one continues to amaze me and really inspire me with the things they achieve, no matter how small the things may seem to them. The positive attitudes of these people is really inspiring and shows you that no matter what tries to stop you, you deserve to reach your dreams just as much as anybody else, in fact, if anything, more than your average person.

For 2014, I saw a really good idea on the internet the other day that would help a lot of us, especially for when you have your down days. At the start of January, buy a jar or find a box (doesn’t have to be huge) and when something good or positive happens, no matter no small, write it down on a small piece of paper, fold it up and put it in the jar. When you feel down or downhearted, open the jar and read what you have accomplished so far; the more you get, the more you will smile and the more it will remind you just what you can achieve and why you should smile. What a lovely idea! 🙂

December 2013 🙂

Before I finish my last post, here’s a big ‘thank you’ to all those who have supported me this year, it means a great deal to me! Here’s to all the ostomates out there and the inspiring and beautiful ladies on the ‘Osto-MY fashion’ group on Facebook and my co-admins; Gemma, Amber and Becky – lots of love to you! Also, here’s to my Uncle, I miss you so much & you inspire me every day.

I hope you all have a fab New Year and that 2014 is a truly great year for you all; make it your year!

Thank you to my readers for all your continued support and I hope you continue to enjoy reading.

Best wishes & Happy New Year!

Amy & Stacey Stoma 🙂 x x

Ostomism Not Pessimism ™ 

December 2012, a year flies!

An update from me, & help to create a new ostomy product.

Hi readers,

I haven’t really posted this kind of thing before but it would be of great help to a team at the Northwestern University in Chicago if you could take a few minutes of your time to help them in creating a new, innovative ostomy product. 

Here’s a message from Joan, who is part of that team, giving you details of how you can help. I filled in the survey and it only took me a few minutes!

Hello!

 

My name is Joan, and I am an innovation fellow at the Center for Device Development at Northwestern University in Chicago, IL. I am a part of a mission to improve the management of ostomies, especially when ostomates are beginning their transition after surgery.  My team here is a group of physicians and engineers all eager to solve problems ostomates face, and our hope is to create a truly innovative product that ultimately tackles the biggest issues. (You can check our program and team here: http://cd2.northwestern.edu/innovation-fellowship/fellows)

 

We have NO current connections with any major ostomy supply companies in the industry; we are only tied to Northwestern University. However, while one of the goals of our academic program is education of innovation in medicine, we fully intend to create a product that people would actually want and one that can potentially be brought to the market.   Your feedback is invaluable and we look forward to your help! As a token of our appreciation for continued participation and feedback, we will be offering monetary compensation to show our gratitude.  We would like to begin these engagements starting next week.  If you are available for Monday Dec 9, please let us know your availability and if you are local to the Chicago area to meet in person, or if you can communicate with us via video conferencing (i.e. Skype) or by telephone.  Additionally, please complete this 5-minute survey so we can get to know a little bit about you: https://docs.google.com/forms/d/1TIEoIxIDaa5rNN1sYdR7hlUzmdT53pqTe4YmmiaqVZY/viewform.

 

Thank you again and we look forward to hearing from you soon!   

 

Projects such as this I feel are such a worthwhile cause in paving the way for new ostomy products that can help all ostomates, whether new or those that have had an ostomy for a considerable amount of time. This is your chance also to have a say in what you feel could be of help to you as an ostomate or if you are a friend or a relative of somebody who has one.

 

Thanks for reading & I hope you’re all well. I’m still waiting on my iron infusion as for some reason, they required my bloods to be checked for the third time which came back just as I said they would with the sufficient evidence to prove I need my iron infusion… Doubt I’ll be having a Christmas full of energy! I’m also very close to sending my application off to University for next year, just getting my personal statement sorted which is a task in itself. 

 

Best wishes from Amy & Stacey Stoma 🙂 xx

Crohn’s & Colitis Awareness Week

Spread the awareness!

Here’s to everyone affected by IBD and those that have tragically lost their lives due to it or related complications. Here’s to my Uncle, my reason for my strength and courage and to not let IBD win & help others with their pain, I miss you & you will always be my inspiration.

Bag odour.

Hey readers, I hope you’re all doing well & I send hugs & wishes to those of you going through a tough time at the moment.

I’ve decided to do a post on bag odour as I know it is an issue which effects every ostomate at some point or another, some more than others. 

Personally, I find that there are certain foods in particular that give me bad odour and sometimes a lot of wind too, but with foods I haven’t tried it is always trial and error really. 

The main foods I can think of that give me odour are Fish, Eggs, Mince, Indian Food, foods with a lot of flavour enhancers in and I’m sure a few more will come to mind as I eat in my daily life. Fish & eggs are the worst, and I also find that green vegetables and onions tend to give me more wind than most foods. Fish literally smells like it did before I ate it, as do eggs (sorry if too much information!) so if anyone else has this, then you are not alone! I’ve gone off fish since this happened last time as it took about three days for the smell to shift fully from my bowel, not the most pleasant of smells. 

I have found a great product that works for getting rid of odour which you place within your bag. This is particularly handy for when I’m staying away, on nights out and going out and using public toilets if I’m paranoid about leaving a smell in the toilet. I use an ostomy deodorant called No-Roma by Salts Healthcare, which you can buy in two sizes; a big 227ml bottle which I usually leave by the toilet at home or take away if I’m going to be away for more than a few nights, and a small 28ml bottle which is perfect for carrying around with my spare stoma supplies in my handbag on a daily basis. The deodorant itself does not have a fragrance, but seems to work by acting on the odour-producing bacteria (as explained in the Salts product guide). You simply add one or two drops of the deodorant into the bag, via the outlet which you use when emptying your bag, before going out and when out and you come to empty your bag so you have odour protection until you empty your bag the next time. I find the product very effective and it has made my life so much easier and given me a lot more confidence about going out with my bag and using public toilets.

The dogs & me.

Today, I have been into town with my brother then we spent some time relaxing in the garden with our dogs; Bobby & Daisy. I wore my stoma vest with a tight fit vest top over that and some jeans. My stoma vest allows me to feel confident to wear the clothes I love to wear.

Best wishes until next time!

Amy & Stacey Stoma x x

 

Today is the day…

…that I move to University, eek!

To say I’m pooing my bag would be an understatement, I am so nervous, but then part of me is also excited. It’s all thanks to Stacey I can do this.

It’s 01:28am and I am wide awake with nerves, so this is just a quick one. I feel like I have had a Red Bull, my body is that on edge and alert. I don’t really know where to put myself at the moment in all honesty.

I do know one thing though, and that is that I am a very happy girl at the moment. All I will say clues wise, until next time (maybe! (-; ), is that happiness comes to you when you least expect it, and that thanks to Stacey again and another stoma, I have met someone incredibly special.

Keep your eyes peeled guys & girls & wish me luck!

I will be sure to write when I can once I have internet access and have got the first bit settled into at University.

Lots of love,

Amy & Stacey.

Ostomism not Pessimism! ™ 

Lullaby – Nickelback

The lyrics in this song are so meaningful.
I am a big believer in the power of music, especially when it comes to helping people through tough times. Music has helped me through many dark times. I love singing, it helps me vent emotion and feel better.
This song means a lot to me. It always reminds me there is plenty to live for, even if sometimes, you feel like you just want to give up. It also reminds me that somebody else out there will have been where I am, so has an idea of how I feel, and that is comforting in itself. Nobody should ever feel alone, & I hope this blog helps people to realise that. I am always here if anyone needs to chat! Just drop me an e-mail at: amyrobson09@googlemail.com.

Love Nickelback! Can’t wait to see them for the third time live, in October 🙂 ♥

University draws closer

Less than a week until I move to University. This time next week, I will have officially moved in. It is really starting to hit home now, & I have many mixed emotions. I will have been to the Fresher’s BBQ and will have met my flatmates and lots of other new people. Nerve-racking times!

After having to adapt to getting Stacey last year and still adapting to her, it is going to be another big change to come to terms with. It scares me that all of a sudden my life is going to change in the click of a button majorly, just like it did with my operation. Then there’s the knowledge that I won’t just be adjusting to a whole new life at University, but I will be adjusting to living with Stacey Stoma there too. The fact that she might shout and grumble when I least want her to does scare me, I won’t lie. I worry about bag leaks, pain, whether I’ll eat properly, whether anyone will notice, but, it is the aspect of sudden noise that worries me more than anything, as she can be very talkative! I am just hoping she doesn’t pick her moment that often as a moment that is quiet, like in the middle of a lecture theatre or classroom, and won’t shut up. My whole body language goes tight and closed up when Stacey makes a noise, not so much as it used to or if she makes a noise in a situation where I’m comfortable, like at home. If I’m in a situation or environment where I’m not as comfortable or on edge, I do tense up when I feel Stacey is going to make a noise, or sometimes I don’t know, it just happens then I flinch and immediately move my hand over my bag. It has become a natural reaction and a habit, but I am trying to phase myself out of it, because by doing that, I am just drawing even more attention to myself. Sometimes, when Stacey makes a noise, I can mask most of it by putting something over her. My stoma support waistbands help with the noise to an extent, so that’s something I can use. There are other ways too. For example, if I have my handbag on my knee I can mask it with that so it muffles the sound, or I cough, or sit with my arms crossed slightly bent forward so I don’t make it too obvious. Still, being slap bang in the middle of a lecture theatre creeps me out. This is coming from the girl who had a life saving operation last year and came through it, but there you go! It sometimes is the simplest of things that scare you the most! C’est la vie!

Lecture theatres aren’t going to be really quiet, I guess, and some people who I’ve spoken to like my Mum reassured me that there will be other noises like people coughing and probably even people burping and farting, who knows?! I hope not, but you never know with some people! There will also be other people with other health conditions and other people with ostomies and other things they have to adapt to with University life just like me. Then it bothers me that I cannot really drink alcohol, but then I guess, the people who give me stick over not drinking alcohol aren’t worth my time and obviously have extremely narrow minds. I don’t need alcohol to have fun, but I am sure I will find a way when I am ready to cope with a few drinks without getting ill. I just have to make sure I’m very hydrated, as I have problems with it as well as my appetite at the moment. When I do get an appetite, it comes on suddenly, then I eat and feel sick for a good while after and get the runs. That could be to do with my nerves I guess, but I do have a doctor’s appointment booked for Monday…finally!

This is going to be far from a walk in the park, but with everything I’ve been through, I know I can do it. It is going to be a huge strain on my emotions, as well as physically in some ways with other things I’ve got going on health wise. It will take some settling in, and I doubt I will feel settled until a few months have passed. I will get there though.

I am glad I can go to University, even if it scares the life out of me! I am now able, and that is what is most important. I am so thankful for that, this time last year I had to defer entry, and now I am going, it seems crazy!

“Life begins at the end of your comfort zone.” 

Ostomism, not Pessimism™

A tribute to a wonderful girl.

Alison was such an inspiration to me. The first time I saw a picture of her I noticed her glowing smile that could light up a whole room, and just how much of a beautiful girl she was. The fact that she had a bag didn’t even occur to me until I studied the picture more, and when I saw her bag, I just thought “Wow, she is beautiful, she is proof that we can be proud of our ostomies!”. 

I then read more into her story, and wow, what an inspirational girl. She had been through so much, yet was still smiling and putting her effort into helping other people. Alison helped to give me strength and reassurance that things were going to be okay when I was really ill and just after my surgery. Jess, & Alison, from Uncover Ostomy have made so much difference to my life, it’s amazing. 

Alison was a fighter, determined to make out of life what she could with such a horrible disease. To have an ostomy bag is something to be proud of, she helped me to realise. Unfortunately, as much as she embraced having an ostomy bag, it didn’t work for her, and she had her ostomy reversed. What hell she had to go through brings tears to my eyes, it really does. We all go through such hell with Inflammatory Bowel Disease, admittedly in different extremities, but Alison had to suffer with IBD in such a horrible way, to an extent than more of us have suffered. She had countless operations, and had to undergo yet another operation recently.

Tragically, things didn’t work out for her and she ended up in hospital on a life support machine, just enough so her family & friends could say goodbye to her. I can’t believe I am writing this…It is so so sad and there is a place in my heart that feels numb, I will miss her. I look at her photos and the things she did and it inspires me so much to carry on raising Ostomy Awareness for her and to be proud. She will always have a place in my heart. I wish I’d told her just how much she has helped me and still does.

For Alison to be forced to leave in such a cruel way is just so unfair I cannot put it into words, let along at such a young age. Her memory will definitely live on & she will carry on inspiring people for many generations to come.

Rest in Peace, Alison. ♥

Emotional times.

So, as those who are close to me know, I’m having a rough time at the moment with one thing & another. I”m very emotional, down, feeling very self-conscious and rubbish about my changed body and don’t really know where to put myself. There is a few main issues going on at the moment, some personal and some medical. I am constantly feeling ill and weak, don’t have the greatest appetite, feel sick a lot and don’t sleep anywhere near as much as I should. I purely can’t. It’s not that I don’t want to…My head just hits the pillow and it’s like instead of the light switching off, it goes on, to its brightest setting, and its like there’s a moth just flying round and round like it won’t leave me alone, everything goes round my head bugging me.

On a personal level, I won’t say much apart from break ups are hard. That point ended right there, because, to be quite honest, anybody reads this and people make their own judgements, so I won’t give any details apart from it was for the best. Never the less, it’s damn hard. I have had a hell of a year this past year, and the last thing I want is to be feeling rubbish and ill. Looks like I may be heading back to the doctors once again sooner than I thought, when I get the guts (no pun intended this time).

Life is just as “normal” as it gets I guess, all the drama, all the sad times, and hopefully more of the good times, with a stoma…A lot more of the good times I hope. I haven’t even had much of a taster of the good times yet compared to my whole life, I am hoping. Yes, I still get fed up of it some days, and wish I could parade around with my stomach on show, but then, that’s never been me, so I just remind myself that. There will become a day when I’ll just think “sod it all” and march round regardless like I’ve always wanted to, regardless of who points or stares or passes a comment. Until then, I don’t have the confidence. I was getting there with my confidence, but it has been severely knocked recently. It is horrible. Some days I feel like I just want to give up… But I keep reminding myself that I’ve come so far..Just a pity anyone has to go through such hell in the first place.

I suffer from depression also. It’s a pain in the arse. No pun intended, again, man I’m good at this. I should be a comedian or something, not. I just seriously am not in the mood for any rubbish right now, I just need to know it will be all okay. For once, I want someone to stick around, and trust me to stick around too 😦

Truth is, right now, I’m really struggling. So if I appear quiet or short, I’m sorry, it’s not personal. I’m just going to have the guts here to say: Yes, I’m finding things very very hard, and I don’t know how much longer I can stand this… Just hope things get better, very soon. I surely deserve some happiness, right?