Before I had an Ileostomy Stoma, my ideas of what it was and how it looked was extremely inaccurate and far from as simple and unobtrusive truth! So here it is to educate, remove the stigma and normalise what millions of people in the UK live with daily.
Below are a few pictures of my stoma and bag set up, I am always nervous sharing images of this as it does generate some abusive responses but the benefit is far more important to me, the education and normalisation is essential to let us all live our lives free of the taboo of poo and life threatening diseases remaining undetected due to embarrassment and shame.
Its not just those with Crohns and Colitis that end up with Ileostomy or Colostomy bags, but can be a result of Cancer, Bowel Damage, Colonic Motility Dysfunction, Blocked, damaged or ruptured large intestines, FAP (familial adenomatous polyposis) and many other conditions. Amazingly an estimated 102,000 people in the UK alone live with a permanent or temporary Stoma so its not as rare as people think.
Here is Fred the 2nd! My life saving bag for life!
This is what it looks like uncovered. It is the end of my small intestine that you can see, part of the terminal Ileum. It has no nerves so doesn't feel if touched and can move about at will as it is after all, a living intestine! It is stitched initially to the surrounding tissue to keep in from going in but now healed is permanently protruding from my abdomen.
I use a small barrier ring under my stoma bag to protect the skin from poo burning it as Ileostomy output is extremely watery and often acidic, this is because it hasn't been through the large colon and formed with the water/bile acids etc extracted. The seal helps give a snug seal to ensure I almost never leak.
Next comes the important bit, the bag! Personally I love the Salts BS Confidence range as they are a soft convex, look cool, stick very well and are kind and comfy on my skin. I have very sensitive skin so its taken a good year to find the right bag for me!
The attachment is important as it needs to be well adhered to the skin to ensure no leakages, the skin has to be completely clean of anything that may effect the adhesive and dry.
Below I show the bag as its is stuck on and then demonstrate how it opens to be emptied (about 8-10 times a day for me a and 1-2 at night) My output is high because as mentioned little water is reabsorbed to the body due to the colon being gone (that's one of the large bowel key jobs), in addition, transition for me, is about 4 hours mouth to bag and can be faster with some foods. This all results in high volume, watery, often undigested output! I will reiterate this is just my experience, others have reported it can take upto 24 hours for theirs to work and be a thick consistency, as I always say, everyone is individual and this extreme comparison shows just that.
And there you have it! Simple! Not scary or disgusting or dirty and smelly... well everyone's poo stinks right ;)!
Once I empty, I clean the spout shown above, roll it up, secure the velcro and move on!
I like to wear funky covers when Fred is on show at the beach or similar, why not be loud and proud! I would not be alive without it so its a blessing to me!
I hope by sharing I have shown how it is not something to be ashamed of or fear, just different from the majority, but not as rare as you possibly thought!
Thank you for getting this far and helping me to raise awareness and get rid of the taboo of poo to help save lives and empower people.
Below is a link to my bag change video if you are a stoma patient and you want more help changing and tips I have used along the way!
Take care
Love Andrea xxx