Tag Archives: University

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

Here I am now :)

22 Nov

So it’s been a while since I uploaded some photos of me and my ostomy bag, so I thought I’d upload!

My weight has been coming and going really, and as a lot of you will probably know, it is hard to keep a good appetite up when you are under a lot of emotional stress. Despite everything going on, I am still extremely pleased that I have Stacey and I still maintain that it is one of the best decisions I have made in my life.

A stoma doesn’t mean stopping your life, in fact  it enables you to lead a new, happier and hopefully much healthier life. Yes, it takes a lot of adjusting to, but then again, I think anyone with a bit of bowel brought out through their abdominal wall would be exactly the same. It’s not something you see in everyday life, unless you have one or someone you know has one, even then you may not see it or hear about it that often, it all depends. By no means is a stoma disgusting or something to be ashamed of. Be proud of it, most of us are here because of our stomas! 🙂 & let’s be honest, a stoma excretes waste from your body… it is hardly going to be the prettiest of things, but it is by far not the worst or ugliest of things.

Every stoma and scar has it’s own beauty in it’s own way. Behind each of our scars and stomas are individual stories, inspiring stories and people who possess great courage, beauty and strength 🙂

This is something I could never have done without my stoma. I couldn’t go to University, let alone live in University accommodation. I couldn’t leave the house or even stay in the house without my life revolving around pain, misery, not being able to eat and living on the toilet. But here I am! 🙂

Image

Best wishes from Amy & Stacey Stoma 🙂 xx

Hope = ‘Hold On, Pain Ends.’

21 Nov

Wow, what a strange few weeks it has been. I don’t really know where to start or what to say, but I’ll give it a go.

Things are very difficult and numb for me at the moment. Very recently, we lost my Uncle unexpectedly. He was only 49. Words cannot possibly begin to describe how hard it is to face, and how it still hasn’t properly sunk in. My Uncle was someone who never complained, never had a bad word to say, never gave up. He always made people smile, and he didn’t even have to try. His personality itself was one in a million, you could rely on him and he made me less scared, by a long way, of having my big operation. He had a stoma, and he always reassured me that I would get my life back and everything would be okay. I saw him transformed from being really poorly, to having his stoma created and him going from strength to strength. I remember the time when he was able to go in a plane for the first time at an air show and fly in it, his body no longer held him back. Just something so simple as that meant so much to him, to see him free of pain and starting to enjoy his life was fantastic and brings tears to my eyes just thinking about it.

When I was little, we did a lot together. I have so many memories, all good, of us. That’s the thing, looking back, I don’t have one bad memory of him, he was a total gem and would do anything for anyone. He was such a fighter. He beat Colitis which had ruined his life and he beat cancer. He was just starting to live the life he deserved all along when he was taken so cruelly and unexpectedly from us. They say the bad things always happen to the good people…

For every tear that I have, I also try to smile, because he would have wanted that. I look back on so many good memories we had, and giggle at the times that so effortlessly he made me laugh until my sides ached. Deep inside, I like to think he’s watching over me and protecting me, because even though he was asked to leave us, he still lives on in a lot of people’s lives and gives us strength. Rest in Peace Uncle Graham. ♥

My procedure went well, was very simple and even though they said they didn’t do much but have a prod and a poke about in my bowel to make sure it was dilated properly, it has really helped me so far. I still get the odd days of pain, but on the whole it’s been great. After the initial soreness, I’ve been able to enjoy food again without having to worry.

Trying to concentrate on University is proving very tough at the moment. Emotionally and physically, I am exhausted, drained and trying to hold on. Ever had that feeling where you’re in a room full of people yet feel so lonely? That’s how I feel everyday at the moment. Hope = Hold On, Pain Ends…

I hope everyone is well, and apologies for the lack of updates at the moment in this hard time.

Amy & Stacey Stoma xx

An update on the outcome of recent hospital visits…

25 Oct

Hi readers! 🙂

Sorry it’s been a while, had so much going on in the way of Uni, health and a few problems.

To update you all, I’m having a flexi-sigmoidoscopy with bowel dilation on the 6th November to widen the kink in my bowel. The surgeon said it’s now not to have thought to have been caused by adhesions, but is simply just a kink in my bowel that can hopefully be sorted with this procedure whilst I’m put to sleep. He said I could be in a bit of pain when I wake up, but hopefully this should solve the problems and obstruction. If that doesn’t work, I’ll have to have my stoma redone but he said hopefully it won’t come to that and he’ll do everything he can to make me better. Top guy 🙂

Hope you are all well! I’m currently staying at my boyfriend’s in Wales for a few days as I’ve had a few stressful and upsetting issues involving people at my University accommodation which isn’t helping my current health situation and stress levels. I can’t honestly believe the extents some people will go to to harass and make other people’s lives a misery. That’s all another story I guess! At the moment taking a quick break from University work on Educational Policy! Better get back to it…Fun times!

Just thought I’d update you all and check in! 🙂

Until next time,

Amy & Stacey Stoma xxx 🙂

Home for the weekend & World Ostomy Day!

6 Oct

HAPPY WORLD OSTOMY DAY to all my strong, inspiring, and beautiful ostomates. You make me so proud to be an ostomate and give me the reassurance that I am not alone. To every ostomate reading this: keep smiling, you are amazing, never forget that…You are strong, you are courageous, and you are incredible ♥ Thanks to my ostomy, Stacey, I have made some amazing friends and met my somebody special ♥

So I’m home from University for the weekend. It’s so nice to be back and to spend time with my family and dogs, I have missed them so much! I am going to see Nickelback tomorrow night, for the third time live, with Mum and her friend and her friend’s son, exciting!

Even though I am feeling pretty low and fed up with my stomach problems at the moment, there is something deep inside me that just keeps saying “keep going”, as much as I want to give up. I guess that thing is hope. My patience and willpower to get through this varies greatly at the moment, I try to keep a smile on my face, but in all honesty, most nights I tend to just sulk and feel like crying. I’ve already got a lot of work on at University, so being ill and having little energy is the very last thing I need. I’ve been doing 3/4 hours on top of lectures pretty much every day and the other night I had to just get into bed and sleep as I pushed myself too much to the point where I was nearly sick and was in a lot of pain. My mind is a lot stronger than my body at times..It is a big thing I guess to learn when your body is telling you to rest and accept that it needs rest and we aren’t invincible, as much as we’d like to be.

Things are pretty tough at the moment, got a few issues at University on top of my health, and to be honest, I just want things to get sorted. Having to deal with a lot of crap for getting on 14 years of my life makes me feel I should be allowed a decent sort of rest and good luck from it all soon, no? Going for my x-ray next Friday to see exactly where my partial obstruction is, then seeing my surgeon the Friday after, we will see what those results bring.

Somehow, I still manage to smile everyday. Despite the continuing pain, feeling sick, horrendous output and other things going on. I guess things can’t stay bad forever, right?

Ostomism not Pessimism™

Just a quick update.

1 Oct

Hey everyone,

So I haven’t written for a while, I apologise for that, but it has been mental settling into University and I still am settling in. Some days I really enjoy it, whereas other days I find it a bit overwhelming and hard to manage. On the stoma front, things have on the whole been really good, but I’m not even going to comment on the noise or lack of noise in lectures, because that’s just tempting fate and Stacey can be a bit of a drama queen.

I’ll write soon when I have more time to write a more detailed post.

Hope everyone is well.

Best wishes from Amy & StaceyStoma xx

Today is the day…

15 Sep

…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! ™