Tag Archives: Surgery

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

World Ostomy Day 2013

5 Oct

With it being World Ostomy Day today, I thought I’d do a post basically just giving a big shout-out to all ostomates; past, present and future ostomates.

I still have my up and down days with mine and have had a few issues with partial blockages behind my stoma and pain recently but on the whole I am extremely thankful for having my stoma. It gave me my life and meant that I met some amazing, courageous people who have every reason in this world to smile and be proud of the struggles they have got through. When I’m having my down days, I always think of my Uncle who still continues to be such an inspiration to me. My IBD Story page is at the top right for those who want to read it and see just how far I’ve come 🙂

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I’m still struggling with my anaemia and my body’s dislike to iron, which is not ideal. At the doctor’s this week so hopefully some progress will be achieved there. I’m feeling really low in energy at the moment and find it difficult to concentrate so hopefully things will improve.

I hope my readers are happy and healthy and to those who are struggling or need a talk; never hesitate to drop me an e-mail, the address is in my ‘About Me’ section or just fill in the contact form below.

Best Wishes from Amy & Stacey Stoma 🙂 x x

Ostomism not Pessimism™

Happy 2 years Stacey Stoma!

9 Aug

So 2 years ago today Stacey was created!

Wow what a journey it has been, it has been the hardest journey of my life but I’d do it all again to feel how I do now.

It would have also been my Uncle’s 50th today, and thanks to him, his journey with Ulcerative Colitis and his own experience of having a stoma, I was less scared and had the courage to go through with my operation. He will always be such an inspiration to me. Sleep tight Uncle Graham ♥♥

I’ll do a post in a lot more detail soon about how far I’ve come, the ups and downs and other aspects of living with a stoma for 2 years and how you get used to it, but for now I thought I’d post some pictures from just after my operation and now.

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My stomach when it was swollen with my abscess before my operation, my stomach a few hours after, picture from my colonoscopy before showing the extent of the disease, cannula in A & E and pics from immediately after and soon after my operation.

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“Now you see me, now you don’t.” 🙂
Ostomism not Pessimism 🙂 Me today on my 2nd Stomaversary 🙂

Hope my readers are well & I’ll post soon! Thank you for all the comments & lovely e-mails I’ve been receiving recently too!

Best Wishes from Amy & Stacey Stoma xx

First day of Summer 2013

31 May

That’s tomorrow 🙂

I don’t really know where to start or what to write as it’s been a while, a long while!

Health wise, my Crohn’s is in remission and the latest blood tests show my inflammation markers are normal. My iron levels are slightly low, they are at 8 when they should be 15, but the doctor said this doesn’t quite class me as anaemic. I’ve got some Spatone sachets to try to mix with juice etc as I don’t get on overly well with iron tablets. I seem to remember having those sachets before and not being a big fan, but going to try again as I really want to have the best chance of having good health altogether and good energy levels. Haven’t seen my consultant for sometime with one thing and another and not being in one place, so I’m seeing him towards the end of June hopefully for a review. The doctor on the phone who gave me my blood results explained that because I’ve had an ileostomy formed, and therefore have a shorter bowel than a person without, this is most likely the reason why I always have trouble with my iron levels and find it hard to absorb iron and keep a constant level within my body.

Thank you for all your comments & to my readers who have supported me & always do with this blog no matter how much of a gap I go between posting. It’s been fantastic & really heart-warming to see the amount of people still visiting, reading and benefiting from this.

Best wishes.

Amy & Stacey Stoma 🙂 xx

The waiting game.

2 Nov

So Tuesday is my procedure date. It cannot come soon enough and a decent sized meal has been calling me for weeks now.

I just want to be able to enjoy my food again without pain and hassle. My obstruction is become increasingly aggravated as the days go by, even with just eating little and even when I had soup last night. Bring on Tuesday & hopefully the solution to this obstruction.

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 🙂

Eating

2 Sep

So I’m having issues eating at the moment & have been for a good few weeks. It’s starting to get to the point where it’s really irritating me now, and I just feel weak and rubbish as a consequence. Because of not eating properly, Stacey doesn’t know where she’s at, so I don’t know what’s going on with her. I also keep getting a localised, what I can only describe as an ache that feels like a pulled muscle, under her that comes and goes. I am still managing to dilate her, but she does seem a little tight compared to a few weeks ago. I’m on a bit of a downer at the moment. When I try to eat things, I get a bit through them then just lose the will to eat and can’t face it anymore. I’ve tried Dioralyte sachets to help with my hydration, but I just brought it back up again. I’m getting so fed up now. I constantly feel dehydrated and rubbish and just want to cry most nights because everything I drink goes straight through me and things I manage to eat just make me feel sick or make me feel uneasy as they squeeze through Stacey. I’ve also lost weight, from the near nine stone I was a few months ago to seven and a half now. Bad times.

I’m all for ostomism as I call it and keeping positive, but sometimes I just want to scream and throw the towel in with it all, especially when I feel ill and rubbish and have other health issues too. ARGHHHHH! There, I screamed haha! 😀

Going to get a Doctor’s appointment tomorrow, fingers crossed. I will keep you all updated 🙂

Also, before I go, a big shout out to Hastie off my support group on Facebook who has just undergone surgery a few days back to have a colostomy formed. He is a trooper and is doing amazing. We are all so proud of you! I know he will read this at some point, I’m not just writing as if I’m talking to myself! 😀 Keep it up Hastie, you are a true inspiration and there are many people here for you 🙂

If you fancy checking out his blog: http://lifeisballbagthenyoudie.wordpress.com/ 🙂 Go read! 🙂