THE POUCHCLIP

It's clear to me that people would often like to ask me questions about Vesuvius, but are too inhibited or embarrassed to ask. Here's a transcript of an interview with an (imaginary) interviewer who has no such hangups.

Bill, what is a stoma?  What is an "ostomy"

A stoma is a construction, usually on the abdomen, where the end of the intestine is brought to the surface and attached to the skin, and where waste products (faeces) are excreted.
Ostomy is the generic term for the operation to create the stoma; you can't have one without the other.

Sometimes you say you have an ileostomy, others a panproctocolectomy, which is correct? What is the difference between a colostomy and an ileostomy?

A colostomy is the least radical of the procedures, where the end of the large intestine is formed into a stoma, often with the removal of the anus and rectum. A colostomy produces normal faeces, although a bag (aka pouch) is still needed as there is no control over evacuation.
An ileostomy is where the small intestine forms the stoma. In a temporary ileostomy, the intestines, anus and rectum are left in place for eventual future reconnection. A panproctocolectomy involves the total and permanent removal of the anus, rectum, and large intestine, and sometimes part of the small intestine too. The anal sphincter no longer exists; the person concerned is sewn up tightly.  An ileostomy excretes partially processed waste products, either as a wet solid or a thick liquid depending on how much small intestine is left. Excretion is more or less continuous, into a pouch which needs emptying every few hours. I have a panproctocolectomy including the removal of about 20% of my small intestine. All panproctocolectomates are also ileostomates.

Why did you need your operation?

Because I have a genetic immune system condition which led to my large intestine attempting to digest itself, known as ulcerative colitis. If I had not had the operation, I would undoubtedly have died.

What does it feel like?

Perfectly normal.  Most of the time, I'm completely unaware of its existence.  I'm not in pain (unlike the years before the operation). I have no feeling in my perineal area, as all the nerves were removed in the operation. The stoma itself has no nerve endings and thus no sensation, but the area around it can start getting itchy and uncomfortable if my output starts leaking from the seal. Experience has led me to have a sixth sense for when I need to empty my pouch.  This can be done with a minimum of fuss in a normal toilet. Every few days I need to change the pouch itself. This takes maybe ten minutes, and I do it in the bathroom.  However, in an emergency (leaks are uncommon but not unknown) I can change almost anywhere.  I always have an emergency change bag close at hand.

Isn't it smelly?

Glad you asked! Ask those who know me.  I don't smell any more (or less) as a result of my surgery.  When I empty my bag, the smell is no worse than when anybody else defecates.  When I have a change, much the same applies.

Are there any downsides?

Nutrition!  I know that sounds ironic coming from somebody who by his own admission is considerably overweight, but there are problems arising from the lack of a large intestine.  The large intestine's job is to extract water and minerals.  Therefore, I have a tendency to dehydration (which is why I'm always drinking tea!), and  have to take vitamin and mineral supplements to keep my body chemistry in some sort of equilibrium.  To be honest, body chemistry is by far the biggest issue for me.

You're a man.  Is it "different for girls"

Only slightly.  The presence of a dirty great scar from cleavage to vagina, and the pouch means that a woman with an ileostomy is unlikely to feel comfortable wearing a bikini.  However, apart from that she probably looks better than she did before surgery because she's well.

What about sex?

There can be psychological effects, depending on the person, but I'm not qualified to talk about them. It all depends on how comfortable the individual is with their plumbing.  As for the physical side, loss of libido is a common side effect in men (it affected me slightly, others fare worse), and one that shouldn't be ignored.  Male HRT can help.  For women, this is less of a problem.  What's more, an ostomy does not stop a woman from conceiving and having a perfectly normal pregnancy and birth.

Can you tell is another person has an ileostomy?

Without carrying out an examination to which they would take great exception, NO!

You don't seem to mind talking about your ileostomy.

Of course not.  I want to break down the taboo and "not nice" aura surrounding the subject which leads, literally, to people dying where surgery could save them.  There's no stigma attached to having a heart by-pass or pacemaker. These can be talked about. Why should an ileostomy be any different?

Finally, why is your stoma called "Vesuvius"?

Because it's shaped a bit like a volcano and likely to erupt without notice.