‘Donate Don’t Throw’ – Give Your Ostomy Products To A Good Cause

This week I went to see my Stoma Nurse, and I asked her what I should do about the products I have left over from swapping and changing my prescriptions. I don’t have a cupboard full, but I want do to something other than put them in the bin! She began to explain that in some other countries sufferers have this life saving surgery however cannot afford to buy the bags and products needed to keep a healthy Stoma. I had always thought that this would be the case and wondered if any of the companies ever donated, with all the billions they make a year!

After no evidence found, it wasn’t on Google, I had a look at charities that might accept unused and sealed products or if they had any information to where I could donate myself. Below are two links that seem to be the most popular. However I encourage you do some research too. You would be shocked and appalled at how  some people are expected to live, not being able to afford a standard medical Stoma Bag, or reusing the ones they were given post op. So I do encourage you Donate Don’t Throw!

Links;

Ostomy Aid who donate to people in the UK and around the world- Moldova, Iran, Zimbabwe, Ethiopia, Malawi and Sudan.

Friends of Ostomates Worldwide are based in the USA however donate to over 79 countries to people in need.

You can also donate to your local Hospitals or give them to your own Ostomy Nurse for demonstrations and  samples, I would just contact them first! :)

Get Yourself a Radar Key

When I was in hospital I was told that I was now able to use disabled toilets, because having a bag and an IBD earns you this privilege. However, whenever I have asked an attendant to open the toilets for me because of a large queue etc, it is usually received with a frown and a reluctance to unlock the door. I get it, I don’t look ill or disabled so sometime I have to use my ‘can’t wait card’, this is generally followed with more confusion, anyway…

Last week I did a bit of research and found out that anyone can buy a key for the disabled toilets in the UK, so the first chance I had, I went onto Amazon and bought myself a RADAR KEY. (see image at bottom of post)

You can buy them for a few pounds and it should allow access to most if not all the disabled toilets in the UK. There is no need for registration, no questions and you have access to most toilets. So now you have no need to panic in queues or feel embarrassed explaining yourself to a reluctant toilet attendant!

radar key

What’s on your MIND

I have noticed that there is plenty of information out there about Crohn’s and UC on the internet never mind the hundreds of leaflets you are pounded with at the hospital. However, amongst all this friendly jargon they never touch on the subject of mental health. It has been noted that people who suffer with Inflammatory Bowel Disease can become depressed due to severe symptoms and being unwell for long periods of time. This well-known, I was surprised to see that I myself was never approached or given material about mental health or the relevant help that is available to people if they begin to feel anxious or down. Especially after a life changing diagnosis like an IBD .

When I was first spoken to by my head surgeon they explained that due to the stress on my body, my memory will be affected and my cognitive skills. And oh how they were, knocking drinks, banging legs and toes. I can’t even remember what I’m talking about sometimes mid sentence! It’s frustrating and funny most of time.
However now my mood swings have become a part of my personality, I feel rage like I did in my teens and the thought of going back into hospital brings me to tears.

So what do about this?

Who can I talk too?

I don’t want to go to a Crohn’s support group, I don’t think that would be for me. I try not to read too many articles on the Internet as there is a lot of miss leading information. My GP told me to contact MIND* and yesterday I completed an assessment over the phone and they will be in touch in 7 days to see what they can do for me. Some of my family members have seen a councillor before and really felt it has helped.

Anyway, here is their website www.mind.org.uk . Have a look to see what they can do to help you if you have similar feelings or if you just want to talk to someone. Remember it’s always better to make an appointment with your GP first.

Hope you all had a Happy New Year~!

:)

* United Kingdom Only

Bake Sale & #PurpleFriday

Yesterday I organised my first bake sale for Crohn’s and Colitis UK! As I only had the time to bake 3 full cakes they sold out before 10am so there was potential if I had made more! I had made some information sheets to be displayed, just easy reading facts and figures about IBD. As I couldn’t be there myself my Mother had to tell me how the information was received. She began to tell me that when she was approached by her colleagues, they would go on to explain that their friend or family member has Crohn’s or Colitis. Which I find happens a lot and i’m sure you have probably already notice this too.

I came away with just over £33!!   

AND I must thank everyone at the Stockport Headquarters for their donations yesterday and the support you have given my Mother this past year!! x

GetAttachment-3.aspx

 

mf-totally-awesome.regular

We are coming to the end of Crohns and Colitis Awareness week! Today is #becrohnsandcolitisaware #purplefriday ! And in support of this charity today we wear purple and people are urged to take a photo of themselves wearing the colour and upload this on social media! Well, I don’t own a purple top so i’ve had to wear my Thai pants, they’re mostly purple.

Processed with VSCOcam with g3 preset This is Dexter looking like a racoon.

Crohn’s and Colitis Awareness Week!

From the 1st December it is Awareness Week! On Facebook, Crohn’s and Colitis have shared a VERY good picture explaining the sorts of symptoms that can be related to Crohn’s or Colitis, such as abdominal pain and diarrhoea and some information about the differences in the 2 Inflammatory Bowel Disease (this is another ‘umbrella’ term for these types of diseases)

984253_1040146066011449_6750311439839333720_n

If you are worried about yourself or someone you know who has had these symptoms shown for a long period of time have a look at these links below;

Here is some information about IBD’s

Symptoms and concerns

Some information on tests and treatments for IBD

There is also an information line for people who would prefer to speak to someone 0845 130 2233

#BECROHNSANDCOLITISAWARE

Bag Tricks & Tips

You will learn your own ‘stoma personality’ and slowly you will figure out which products you like and dislike. I am one of those lucky few who have to use every product they make just to make my bag last 1 day leak free. My advice to those who are just dealing with having an ostomy put in, be brave and be strong. It is more than likely you will get upset from time to time as it gets frustrating when for THIRD time you are cleaning your stoma and cutting sticking a brand new bag, applying paste to a ring, using the skin protector spray, drying properly all because your stoma JUST WONT STOP FOR ONE SECOND! :@

But just KEEP ON! Bag changes WILL become easier and it WILL become second nature. I’ve had to do many in the most awkward of places, just before modelling job in a Booths (the Northern Waitrose) disabled toilets, or the time I was on a surf holiday in Devon and I had to change it in my car in the middle of a wheat field, it didn’t go well.

Below are a few tips just to take note as you develop and hopefully perfect your technique;

Products- with the guidance of your stoma nurse, try LOTS of them and eventually you will find the best for your ostomy.
Coloplast
Pelican
(Other brands are available)

Time- The best time for a bag change I think is before bed. Have a shower, use Adhesive Remover Spray to minimise the pain, ease the bag off, reduce skin damage too. Make sure you DRY PROPERLY. Try not to use toilet paper as it leaves residue on your skin, fluffy bits etc. If you use the protective spray make sure this is DRY TOO.

Heat- Your body’s warmth is the best adhesive for this product, the warmer the appliance is the better it sticks, this is why it’s also a good idea to shower so your skin is extra warm. I also use my hair dryer, especially if I manage to get water on my mouldable ring or bag just as I’m about to fix it to my body, it will dry off and you can go ahead and stick it!

Paste! I have to use lots. My Stoma is high and right next to my now deformed belly button so I have to pack the gap with paste and I need it for extra adhesive. It’s good to use if your stoma isn’t stuck out very much.
The benefits of an alcohol base is that it lasts. I won’t have to change it for at least 2 days but it is harsh on your skin. After 2 applications my skin can be bleeding and sore to the touch. Then changing using the paste again, it’s like squeezing lemon on a sore!
When it gets like this I use the Paste with NO ALCOHOL. It’s a nice paste, good for damaged skin however for me it will only last a day, it’s not very sturdy if your output is generally loose!

Lying down, stood or sat- I would not recommend lying down to change, if you have a small stoma it sinks inwards not allowing it to stick properly, think about how much your skin moves and stretches. Sat on the toilet, side of the bath or stood you might find is best. Get one of these things -> 9143779_R_Z001A_UC1402264

for storing your products, put it in your bathroom near where you sit to change. Makes everything a lot easier for you.

And remember if there is any change in your stoma, the colour, smell, swelling, excessive bleeding ( a few drops is normal) you MUST get in touch with your stoma nurse or doctor.
Please add your own Tricks & Tips in the ‘Leave a comment’ link at the top!

AMERICAN PANCAKES

Preparing for the family Christmas bake off I had a go at making American pancakes (they count, right?) and now I think they are my favourite easy meal. The recipe is simple and you can add so much good stuff or take away what you feel is bad stuff. I’m saying things I’m sure you already know.

Here’s the link to the recipe I use curtesy of the BBC.

If you want it light, use 0% milk, margarine, everything thats light, skimmed or diet. However if you’re like me, I load on the good stuff. Try tayloring it to yourself, dig out that sheet your nurse gave you for the do’s and don’t of food.  Stay away from fruit with skins and seeds.  Add Bananas to thicken output, natural yoghurt to reduce odour and manuka honey, known for its digestive health benefits, immunity against those winter colds and of course energy!

IMG_1263.JPG

24 year old girl with Crohn's and an Ileostomy. All things poop, food, fashion and advice

Follow

Get every new post delivered to your Inbox.

Join 365 other followers

%d bloggers like this: