Everything you wanted to know about a stoma but were too afraid to ask

I know that a lot of people don’t know much about stomas and would like to know more, either because they may need one in the future, know someone with a stoma and don’t like to ask, or are just curious.

All of these are ok.

I will try and answer some questions that I have been asked in the past, also if there are any questions you would like to ask, please feel free to get in touch.

WHAT DOES IT LOOK LIKE AND HOW IS IT MADE?

Ok, you may have seen photos of stomas and no two are the same.

Let’s start with a urostomy. This procedure is used to divert urine from diseased or damaged sections of the urinary tract. The most common urostomy is the ileal conduit. The surgeon will attach a piece of small intestine to the two ureters ( these are the tubes that carry urine from the kidneys), the other end is brought through the abdomen to form the stoma. There may also be a pouch made by the small bowel that acts a bit like a bladder that can store the urine before it is released through a catheter ( continent urinary diversion).

Ileostomy and colostomy are made with the bowel. Colostomy is when some of the large bowel is brought out through the abdomen and ileostomy is where a piece of small bowel is brought through.

This is a diagram that is one common way to bring the bowel through the skin, as you can see it is turned inside out and stitched to the skin. It is from www.insideoutostomy.life  , a great site for information and keeping fit with an ostomy.

Tomas is an “outie” as he is quite long but some are almost flush to the skin.

Does it smell?

Yes, but only when you empty it. Same as going for a normal poo. The smells might be slightly stronger because the foods are not as digested.

Does it hurt?

Not the stoma itself, there are no nerve endings in the stoma. Sometimes the skin around the stoma can get sore, or we may get pain behind the stoma. on the flip side there is no control over when the stoma does its thing,so that is why we need a bag / pouch to collect the poo.

What does the bag look like?

There are various types, some are closed and you change the whole bag ( usually for colostomies) mine is a drainable bag because my output is similar to porridge, the colon was removed and that was where the water was absorbed back into my body. This also means that I can easily become dehydrated. This is the exact type that I now use, Pelican Platinum contour mini, and I really like it for comfort and neatness.

 

The drainable end is cleaned and the folded up into the bag and secured with velcro tabs, nothing can get out and it doesn’t smell at all when sealed. You can get them pre cut to size if you know the correct size for your stoma, or you can cut them yourself, this is better if for example your stoma is not perfectly round.

Can you have sex normally?

Absolutely no difference ( except it can sometimes sound like a packet of crisps rustling about ) you can also tuck it inside itself a bit to make it smaller. There are some really small ones available but non drainable.

What about bathing or showering?

Some people will shower without their bag, I personally don’t because it can get messy and you can bet that Tomas will decided to work just as I am drying myself, and because I like to sit up on the bed and air Tomas, I am happy to clean it then. A colostomy might be easier if you know when you might be about to poo, or at least you could take a chance after you have pooed. ( with some colostomies, the poo is more like a normal poo). With an ileostomy or urostomy this would be like Russian roulette.

How do you empty the bag?

Some people stand or kneel over the toilet, I personally prefer to sit. I will make sure the toilet is clean ( This is a pain in public toilets, people can be so dirty). I will then sit right back on the seat and empty the contents between my legs. I will often put a bit of tissue on the front of the bowl as this helps to flush it away cleanly. it is like a having a normal poo but quicker.

How often do you change/ empty the bag?

this can vary depending on the type of ostomy. My experience is I change it every 2/3 days, and empty it when I go for a wee, or if it is more active it can be more.

What about at night?

I will empty just before I go to sleep, and sometimes I automatically wake up in the early hours to a fairly full bag, this can be more wind ( yes we fart into the bag) and that makes the bag balloon. One thing, if someone farts and it smells, it won’t be us. I find that ballooning can sometimes cause a leak,then I have to change the bag. Once you leak, thats it, there is no quick fix.

 

Why do you need a stoma?

For me it was a bowel disease called Ulcerative colitis, part of a group of bowel diseases called inflammatory bowel disease ( Crohns disease is the other main one). For others it could be many reasons, trauma from an accident, cancer, diverticulitis ( another bowel disease which manifests as inflamed or infected pockets in the colon. others get obstructions which can lead to perforation if left too long ( as can IBD). There are some patients who require both a colostomy/ileostomy and a urostomy. These amazing people are affectionately called ‘Double baggers”.

Can you get pregnant with a stoma?

The short answer is yes, you can go on to have a baby normally. There are some small considerations that your stoma nurse or  midwife can help you with. The stoma can change shape along with the tummy, so the bags may need to be altered through the pregnancy. Scar tissue can stretch and be uncomfortable, but this won’t cause any concerns for the baby. There is support throughout pregnancy.

Does it feel different without the colon?

i have to say that no, it doesn’t feel different. I did hope to be slimmer around that area, but unfortunately other organs move into the space.

What does it feel like to not have a rectum or anus?

I still get the feeling that I need to poo the old way. It is a total impossibility for me, as nothing is connected and I have no “hole” ( unless you count the annoying  Perineal sinus after proctectomy. )

the urge is a phantom pain, like after an amputation ,which is what a colectomy is, an amputation. Everything is removed and sewn or packed shut. This is where the term Barbie Butt comes from, because it looks like a dolls bottom now.

Because of scar tissue, it is not absolutely discomfort free for now, but I hope in the future it will be normal.

If you would like to add any more questions to the list please use the contacts form.