Archive | December, 2013

Another year with Stacey complete!

30 Dec

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 :)

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 ™ 

Dec 2012

December 2012, a year flies!

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Had my iron infusion!

18 Dec
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Dad asked if I wanted a photo for my blog before he went back to work so here it is! 😀

Hey readers,

Just got home from having the day in hospital for my iron (cosmofer) infusion. To start with I had a weaker dose for an hour, then had an hour break and was monitored. If you’ve never had an iron infusion before, like me, they give you the weaker dose to start with to see how your body reacts to the iron itself and almost weaning you on to it, as oppose to giving you the stronger, full dose all in one at a faster infusion rate.

My first dose: looks like watered down Coca-Cola!

My first dose: looks like watered down Coca-Cola!

I only experienced a few symptoms mildly; a drop in my blood pressure, developed a bit of a high temperature and felt a bit light headed but these soon wore off after I’d been taken off the first infusion within about 15 minutes. For somebody of my age, the nurse said it was expected to have a drop in blood pressure and that this is what happens with a lot of infusions of different medications.

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The second dose.

After that I had the stronger dose which took about an hour and forty-fiveminutes to infuse then half an hours observation afterwards. I felt a lot better on this one, despite being a bit apprehensive about it after feeling a side effects with the weaker one. I had a joke with the nurse that it looked like she had poured the Coca-Cola that I was drinking into the infusion solution bag and that I was going to keep telling myself it was Cola to take my mind off it 😀 As I understand it, the infusion rate is dependent on factors such as your weight, how your body reacts to the treatment and whether you have had it before or not.  Throughout the infusion, they also check your blood pressure, pulse and temperature; usually in half-hour intervals. From my experience, you can also eat and drink as normal throughout and I did not have to fast or anything to prepare for it. The only thing it required was to stop taking iron tablets five days before the infusion, but I wasn’t on them anyway myself.

I’m feeling a bit like I’m on another planet at the moment and exhausted but hopefully the infusion will start to work in the near future. I’ve been a bit clammy and had a bit of stomach ache and a temperature and have had a few dozes on the sofa tonight!

Best wishes from Amy & Stacey Stoma x x

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

7 Dec

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