2. What's this ileostomy all about then?

I'd like to share a few things about the upcoming Ileostomy surgery which I am going to be undergoing within the next few weeks. As you may know already I suffer from Crohn's disease and I have come to the "end of the road" with the medications offered to us Crohnies. I'm at the stage where I'm actually looking forward to getting the surgery because there's a good chance of a permanent Crohn's remission for me. I expect my quality of life to be greatly improved post-op, fingers crossed ;-)

There are going to be some reasonably frank explanations of matters of the digestive system within this blog post so if you are at all squeamish then be prepared for this if you choose to read on.

The objective of my Ileostomy is to no longer rely on the part of my digestive system affected by inflammation due to Crohn's disease, in order for my digestive system to function. This should drastically reduce or eliminate the symptoms I have come to call 'normal'. For me, Crohn's affects around 80% of my large intestine (known as my 'colon').

A very short anatomy lesson:

Disclaimer: everything written in this blog constitutes my personal opinions and current understanding of the many facets of living and dealing with inflammatory bowel disease. This is in no way intended to constitute medical fact, opinion or advice and it should in no way be taken as such!

The small intestine (or small bowel) is the part of the digestive tract which follows on from the stomach. It's main function is to absorb nutrients and to further digest food which passes from the stomach. It is a fascinatingly long (about 7m) tube which is crammed into one's abdominal cavity. It terminates at the 'ileum' and passes the residual soft, liquid waste on to the large intestine through the ileo-cecal valve.

The colon (or large intestine, or large bowel) is the last part of the digestive system. It is a tube about 1.5m in length connecting the small intestine to the back passage to allow waste (stool) formation. It functions by removing water from the waste passed on from the small intestine. In a healthy person this water removal provides some hydration to the body along with slowing down the passage of waste meaning that bowel movements need only occur once a day or less.

Back to the business of the Ileostomy:

So, I am going to have an Ileostomy. I'm now going to try to explain what this means. 

More specifically, I am having a 'total proctocolectomy' (removal of the colon, rectum and anus) with a 'terminal ileostomy' (AKA an 'end' ileostomy). 'Terminal' in the sense that instead of my rectum and anus terminating the digestive tract, the Ileum (end of the small bowel) will become the termination point of my gut. The 'Ile' part simply refers to the ileum and the 'ostomy' part means that the surgeon will create a 'stoma' from the ileum. I hope you are still with me here...After having undergone the proctocolectomy, this will leave the small intestine with nothing to attach to and therefore, for a short time on the operating table, it will be just a tube with an open end. Obviously something has to be done to ensure safe passage of food waste. My stoma will be created by cutting a hole in my abdomen and passing the ileum through the abdominal wall to the outside world for all to see. This will allow waste to pass out of my abdomen rather than out my bum hole. The stoma is formed by folding the ileum back on itself, rather like turning down the collar on a turtle-neck jumper and stitching it to the skin on the abdomen about 3 inches to the right of my belly button (see Figure below)

End Ileostomy

For three main reasons this approach to "waste management" is radically different to the normal way of pooping. Firstly, poo will exit from my abdomen. Secondly, I will have no control as to when I pass waste (I will no longer be able to rely on my anal sphincter muscles to control this). Thirdly, because the large intestine won't be around to remove water from the stool it will never form a 'poo' as such. It will always be soft and paste-like. Loverly! 

Day-to-day, what all of this will mean for me is that I will be required to wear a pouch to collect the waste that is expelled through my stoma. I have often read and heard this pouch labelled as 'The Bag' but I don't really like that phrase. It is a bag, but why label it the bag - it's not that special :-). This is the part of the Ileostomy which requires a major lifestyle re-adjustment. I don't want to get too involved with the details at this stage since it would be better to talk about it once I have some experience of ostomy bags post-op, but suffice to say I will be carrying around a glorified poly-bag around with me to catch my poo for the rest of my life. I have made this sound like a big deal - and in a way it is, of course - but I am optimistic that with the support of my family and friends it won't really be a big deal. Hopefully I will be able to adjust to it and have a lifestyle which is no longer blighted by the physical pain and anxieties which are typical to us Crohnies. 

As always, please feel free to post any comments or questions you may have below. And finally, to paraphrase a favourite quote of mine:

"Never pass a toilet...and never trust a fart" - Jack Nicholson, The Bucket List (2007).