This is probably going to be one of those "too much information" posts but I feel compelled to write it anyway.
On a fairly regular basis I come across posts on some of the colon cancer groups / blogs that I follow written by someone (or actually more frequently the loved one of someone) who has been told they are going need a stoma, or in some cases just woke up from surgery to discover one, having not expected to. They are often pretty distraught and scared by the idea because, lets face it, a stoma is a kind of scary idea.
I also find that people love to quiz me about my surgery, the chemo, the radiation etc but if I mention "the bag" there is generally an effort to quickly change the topic of conversation. In my experience the stoma is the unspoken of part of colon cancer treatment, which I suppose is a pity because they are a pretty amazing medical innovation. I'm fortunate that my ileostomy is temporary (at least that's the plan right now), but for many people the stoma is a permanent and life changing part of treatment.
So, given I'm unlikely to have this conversation in person, I thought I'd clear the air about my stoma here, and hopefully put some minds at ease where folks are fearful of having to get a stoma.
What is a stoma
A stoma is really a class of thing. A stoma is an artificial opening that allows faeces or urine either from the intestine or from the urinary tract to pass. There are several different kinds of stoma (including urinary stomas) but I'm just going to mention the two most commonly used in colon cancer treatment.
In a colostomy operation, part of your colon is brought to the surface of your abdomen to form the stoma. A colostomy is usually created on the left-hand side of your abdomen. Stools in this part of the intestine are solid and, because a stoma has no muscle to control defecation, will need to be collected using a stoma pouch.
Ileostomy (what I have)
In an ileostomy operation, a part of your small bowel called the ileum is brought to the surface of your abdomen to form the stoma. An ileostomy is usually made on the right-hand side of your abdomen. Stools in this part of the intestine are generally fluid and like a colostomy there is no muscle to control defecation, so a pouch is required.
I don't want to gross anyone out too much here but if you're really interested you can see what the ileostomy exit looks like here.
Living with an ileostomy
I can only speak for ileostomy's here. Here are the highlights of living with an ileostomy:
- You have to empty the bag around 5-10 times a day. How often really depends on what you're eating and what you're doing. I won't lie, even after two months this occasionally grosses me out, especially if I'm already feeling really nauseous from chemotherapy, but it's not to bad. As an aside....one of the many jobs I had at University was cleaning a corporate office building at night and I remember times when my fellow cleaners and I would stand around a toilet and marvel at the position of certain, ummm, marks in the toilet bowl. Knowing what I know now I realize stomas create a world of other possibilities - I think you follow :)
- In terms of diet, you are meant to follow a fairly strict stoma diet in the weeks after surgery. I was terrible at this (eating broccoli and carrots was a major no no for example) and luckily had no issues. Now, several months post surgery, there really isn't anything I can't eat although you learn what effect certain foods have and naturally avoid them.
- I think some people change the bag itself everyday. Personally I hate changing the bag so I try and make it last a few days and that's been working fine. There's a whole kit of equipment and a huge range of different designs from different suppliers. I've settled on the Coloplast Sensura Mio Convex. Sounds more like a beauty product or car brand right ? Incidentally Coloplast makes an exciting range of products you never wanted to know existed - anal plugs for example.
- There is not much you can't do with an ileostomy. You can bath, swim, run, cycle. Obviously it adds a bit of complication to these activities and if I'm honest, as a previously avid swimmer, it has taken the joy of swimming away for me - but this is not a big deal in the scheme of things.
- It's quite likely you'll get a hernia around the site of your stoma. I got one within days of leaving the hospital. This is when your intestines push through the muscle in your abdominal wall. Because they have to cut through your abdominal muscle to create the opening for the ileostomy, you're a sitting duck for a hernia. It sounds awful I know and honestly I freaked out when I saw it - a massive bulge in my abdomen - but it's really no big deal. No one else can even see it, and I rarely have to look at it myself because its under the bag most of the time (it's one of the reasons I hate changing the bag). Personally I've experienced no pain. The worst thing is that it feels like my guts are going to fall out when I cough or sneeze. It's also easy to correct surgically and mine will be fixed when I undergo the ileostomy reversal surgery. In the meantime it just means avoiding picking up heavy things. Funny isn't it - before this cancer shit show I didn't know the difference between a hernia and hemorrhoid, and now I've been lucky enough to personally experience both !
- Some words of advice for anyone using this setup:
- I was lucky to experience an 'adhesion' issue while I was in hospital during a physio session. Had it not been for that event I probably would not have known that you can buy extra adhesive strips. I use these all the time - one on the top of the bag ring and one on the bottom - and frankly I don't know how it would all work without them.
- Your stoma nurse might tell you that one of the biggest issues is minimizing contact between the bag contents and your skin because of the hydrochloric acid in the output. Take it from me, it really is like a chemical burn if you get this wrong - so make sure you get the bag aperture right (this might change because the stoma itself can shrink a lot in the weeks after surgery). I was also late discovering Stoma protective powder. This stuff is amazing - totally use it.
My post surgery setup - sadly my abs have been affected :)
Having an ileostomy is bad in the sense that, for me, it serves as a constant reminder of this whole cancer thing. It's also quite lonely. No one else is emptying this bag multiple times a day. You feel like it's so easy for others to forget what you're dealing with - for them it's out of site, out of mind (how many times do people say to me "wow, I can't even tell you're sick). Meanwhile you're silently spending an hour in the bathroom covering a patch of burned skin with proctective powder while you do a bag change. But when you consider what the ileostomy has allowed your surgeon to do, and the impact this has on your survival, these are small prices to pay.
As I said, my ileostomy is meant to be temporary however the reversal surgery I must undergo is not without risks (you can read about LARS - Lower Anterior Resection Syndrome), and I've learned that you need to be ready to deal with any scenario with cancer. So, I'm keeping an open mind in case I need to keep a bag for longer, or even forever. If I do, it really isn't a big price to pay for staying alive.