Tag Archives: Crohns

A rough start to the year.

21 Jan

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 ♥ ImageOn 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

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

Crohn’s & Colitis Awareness Week

30 Nov

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.

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Waiting for my iron infusion.

16 Nov

Hi readers,

I went to the hospital for a check-up the Thursday before last & got some really good news; my Crohn’s is not reccurent, so since my surgery I have been Crohn’s free… That’s 2 years & 3 months I’ve kicked Crohn’s in the ass! (no pun intended, well maybe!).

The previous tests I’ve had such as the barium enema x-ray and the barium meal showed that the stomach pains I get when I am stressed or run down are not Crohn’s related, but down to muscle spasms just behind my stoma. Buscopan is a no-no for me so they’ve given me an alternative anti-spasmodic to try – Alverine. I haven’t actually tried them yet as I haven’t been keen to since the Buscopan didn’t agree with me but will be trying them in the next week or so if my stomach spasms become more of a problem.

My latest blood test results revealed that the suspected Anaemia is at bay and that my body does have the right quality of red blood cells and my HB (Haemoglobin) levels are okay, but that it is my iron stores within my body that are rock bottom so need bringing up in order to allow my body to tick over – guess that’s the easy way of putting it! I’m waiting on my iron transfusion date to come through and hoping this will do me some good, putting my apprehension aside. I’ve always found it strange the thought of infusions as I’m usually used to having blood taken, not iron or blood pumped into me, but I’ve had a few blood transfusions so I’m hoping the iron one will do more good than give me side effects and I will notice a considerable improvement as I’m getting fed up of having no energy and scraping myself off the floor.

Thanks for reading everyone.

Best wishes from Amy & Stacey Stoma 🙂

 

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™

Craving salt.

26 Aug

Specifically more recently, I have found that I crave for ready salted crisps and a lot more extra salt on my food than normal. I’ve even found myself dipping my finger in salt granules left on my plate and having those!

From what I’ve been told, I know that craving salt for ostomates is something quite a few people experience because of the absence of the colon. From what I understand of this, the fact that we have no colon means that absorption of essential nutrients/salts etc and proper hydration is difficult to maintain as foods are passing through us at a faster pace than those with their large bowels intact, therefore absorption is considerably less.

Never before have I been a big fan of crisps, but recently I find myself craving a bag of ready salted every night and add salt to whatever food I can.

I also try to drink sports drinks loaded with electrolytes especially if I feel dehydrated to make up for those that my body has lost, as dehydration is easier to reach and in a faster time than normal people for ostomates.

I thought I’d do a post on this as I know I’m not alone and it’ll probably help other people having the same experience know they are not alone either 🙂

Best wishes,

Amy & Stacey Stoma xx

Bag odour.

21 Aug

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.

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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