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What is an Ileostomy Stoma (AKA Fred) and how did it work for me! Jargon Free explanation!

Before I had one, I had absolutely no idea what a stoma was… why it would be needed, how it worked or even where it sat in or out of the body! I don’t think I’m alone judging by the questions I faced during the 18 months I had Fred.

In my words, this is how I describe what is an Ileostomy Stoma? I have no medical training and my terminology may not be accurate but is based on what I’ve learnt first-hand.

When I was ill with what was initially diagnosed as Crohns disease, my large bowel, the colon, became severely inflamed, swollen and covered in ulcers. Medications had been unsuccessful in healing me and I reached the point that I needed it to be removed completely and a new way to manage waste, before it made me so ill I couldn’t recover.

When the colon (large Bowel) is removed you are left with the small bowel and the Ileum no longer connected to your rectum and therefore you need another way for the waste to leave your body.

In simple terms, the small bowel (intestine) is rerouted across the abdomen internally and the end, the ileum, is put through a hole made in the abdominal wall and secured to the outside, the ileum is turned back on itself to form the stoma and stitched to the edge of the hole to hold it in place. This leaves an opening from the small bowel into to outside world where waste can then be collected and managed in a stoma bag.

At this stage the rectum is often left in place but closed on the inside and stitched to the abdomen to maintain a blood supply, this can preserve the rectum and/or the anus for potential for future operations. In some cases when the stoma is made permanent, this may later be removed, and the anus sewn shut. Alternatively, it can also be used to allow the connection of a JPouch or similar, the remaining tissue will be adjusted to provide an outlet back through the anus. In many cases only a small amount of the original cuff would be used to avoid future problems with disease.

When you look at your stoma you will actually be looking at the lining of the small bowel, it resembles the inside of your cheek and will look red/pink flesh and be wet and warm to the touch. It has no nerves so technically has no feeling, however, as its attached to the stomach you will feel a sensation of something touching your skin around the stoma and where it joins the body when cleaning etc.

The output from the new Ileostomy Stoma is coming directly from the small bowel, therefore it is very different to what it would be before surgery. The small bowel is not able to remove much of the liquid from what is passed from the stomach, it also can not compact the stool, therefore the result is watery, runny, frequent stool. It can be more acidic and sometimes less digested as it has progressed through the system faster than before, therefore broken down less. For instance, something eaten can pass in just 4 hours where as it may have taken a day before, it also may still resemble what was eaten, especially if food is not chewed very well.

You have no muscle control over the output from the stoma and therefore the output is free flowing and frequent. This also means gas will pass freely and unexpectedly from the stoma. This can be managed somewhat with diet. All output can be retained in the stoma bag and emptied when needed, but volume can be a shock at first, someone who evacuated their bowels daily before surgery may find now they seem to pass enough to need to empty the bag many times a day. I was approx. 8-12 times a day and once at night.

Many people manage their bags and set up with ease, however, It is unfortunate that many people suffer leakages from the stoma bag seal, some occasionally and some really struggle often, it depends on the bag system, diet, scars etc and I will cover what worked for me in a separate blog. I was very lucky and only had 2 leaks in the 18 months I had my Fred!

I named my stoma as many do to help me relate to her and see her for the lifesaving part of my life she was! She was part of me and whilst not ideal, it was not anything to be ashamed of and was a clean, amazing way to manage my heath! Fred saved my life and I wouldn’t be here without her!

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