The Ostomy Fork in the Road...
...or everything you kind of wanted to know about ostomies but were too afraid/polite to ask.
First of all, what is an ostomy? It is "an artificial opening in an organ of the body, created during an operation such as a colostomy, ileostomy, or gastrostomy; a stoma." I have an ileostomy. You and I have about 23' of small intestine, the last part of which is called the ileum. The ileum of the small intestine empties into the large intestine, the first part of which is the colon. The large intestines (all 5' of them) terminate in the rectum and anus. The rectum and anus are remarkable in that we have voluntary control over these two workhorses, which is really amazing when you think about it. Everything else happens automatically, but we decide when we actually go to the bathroom. Unless there's coffee involved. Then those two do what the coffee tells them to.
My cancer was in the rectum, just barely inside. When they removed it, they took my rectum, a good part of my colon and all of that shared blood supply and surrounding tissues. They then took what remained of my colon, made a bit of a pouch and reconnected that to my anus. Of course, that's pretty major surgery, so in order to give the whole works time to heal properly, they diverted everything coming out of my small intestines to the outside of my body through my abdominal wall. Because that last segment I'm using for now is the ileum, my surgery is called an ileostomy. It will be temporary. In theory, I am sufficiently healed from the surgery now, but with the stresses chemo puts on a body (especially the reduced ability to fight infection), this is not the time to be doing gut surgery, so we wait until AFTER chemo for the reversal. Make sense so far? Had the cancer spread to the actual anal tissue (we were within 1 cm), they would have removed all that and instead brought the remaining colon to the outside of my body. That's called a colostomy would never be reversed. And yes, by default that would mean the anus was gone and thus the normal opening we're all familiar with would be permanently closed.
So, life without a colon, what's it like? Well, one of the colon's big jobs is removing water from the digesta. That is why your excrement is relatively solid. Prior to that, it is necessarily a pretty liquid substance. So, what do you do with all that unconcentrated digesta? (Sidebar - there's a squiggly red line under "unconcentrated." I was pretty sure I spelled it correctly but right clicked on it anyway to see. Spell check wants to change it to "unconsecrated," which I find almost ironically funny, given our topic. If I had no self-control, I'd say "(un)Holy Shit" here, but I have plenty of self control. So there.)
Back on track! The ileum now comes to the outside of my body and a bit of it is turned inside out on itself, so I have what looks somewhat like an outy belly button about an inch in diameter with a hole in the middle of that. And since we already established that almost all of your digestive tract does what it wants when it wants, stuff is constantly coming down the pike. Sometimes noisily, like when your stomach growls. Mine now sometimes growls pretty vociferously, but most of the time is quiet. But since stuff's always coming, it needs somewhere to go. Thus, I have a plastic bag which is attached to a stiffish plastic disk about 4-5" in diameter. It has a hole in the middle, which is cut pretty precisely to the shape and size of my stoma. The whole assembly is then glued to the skin that surrounds the area. Underneath the adhesive and directly on my skin, I add an additional wax ring that helps give a better seal. One of the trials of dealing with this is that the contents of my gut still have all the digestive juices, enzymes, etc., at this point, so the contents are corrosive to skin. Thus, a good seal is ESSENTIAL. Otherwise, the skin can disintegrate, and that's a bad thing. The bag has an opening at the bottom which I use 5 or more times a day to empty the contents when I'm using the restroom. Not a big deal at all. I have to pay more attention to my clothing now, because of the bag, but no major changes. Tight jeans are a no-no, but since I'm not a teenaged girl, that hasn't been too big of a deal for work at least. If I have to sit much however, jeans become a no-no. I find the waist is too restrictive and makes my stoma site uncomfortable and subject to stress that might make it more likely to lose it's seal. Right now, you're just liable to find me driving down the road or at my desk with my pants undone. One of the girls suggested maternity jeans, but I've not had the cojones to purchase those just yet. Winter may find me with a bit more courage.
Remember how I told you that stuff is constantly coming down the pike? Well, that makes the "Changing of the Bag" a sometimes interesting production. The bag needs to be changed out every 3-4 days. Conventional wisdom dictates you attempt the feat when the stoma is quiet, generally in the morning before you've had something to eat. But remember I've told you I'm not a morning person, at least not without coffee. Also, flash back to paragraph #1, where I alluded to the effects of coffee on the digestive system. This has made for some interesting trials that make for a lot of false starts, clean ups and do-overs. I must admit to losing my temper on a couple of occasions. This necessitates creative swearing. Or maybe not so creative, since I have my go-to old favorite strings of invectives. This, by the way, does not seem to have any calming effect on my guts and they continue to go on their merry, digestive way unabated.
All in all, being an "ostomate" (how's that for a stupid word???) has not been too bad. Aside from a couple of violent swearing sessions, I've dealt with it alright. I'm having a little trouble with my skin, but hope I'm getting that resolved. The day-to-days are fine and totally manageable and have not impeded much on my activity. The worst change has been my need not to sweat, which means I've not been running at all. Sweat, glue and skin are not a good combination. I walk but need to find something more aerobic. I'm going to try a recumbent bike, me thinks. That way, I'll be constantly cooled by my forward motion. Recumbent means less pressure on my ostomy site. I've got to find something, because you ought to see my chicken legs. I have always had muscular legs, but lost a LOT of muscle mass in the hospital and haven't rebuilt it yet. Thus my case of chicken legs. I would say it is the most visible manifestation that something's not right with me. I miss my big ol' calves and want them back. Now!
And, once more (I say this every time), if I've failed to answer any question, please ask. I am happy to answer! And like any question, if you're wondering about it, so are 5 other people. Just ASK. Folks say my matter-of-factness helps them, and you'd be surprised how many people you run into who have ostomies. Not just cancer patients, but folks dealing with inflammatory bowel disorders (Crohn's, ulcerative colitis, etc.), injury, etc. As with almost everything, it could be a whole lot worse!
back to Barb's Blog
My cancer was in the rectum, just barely inside. When they removed it, they took my rectum, a good part of my colon and all of that shared blood supply and surrounding tissues. They then took what remained of my colon, made a bit of a pouch and reconnected that to my anus. Of course, that's pretty major surgery, so in order to give the whole works time to heal properly, they diverted everything coming out of my small intestines to the outside of my body through my abdominal wall. Because that last segment I'm using for now is the ileum, my surgery is called an ileostomy. It will be temporary. In theory, I am sufficiently healed from the surgery now, but with the stresses chemo puts on a body (especially the reduced ability to fight infection), this is not the time to be doing gut surgery, so we wait until AFTER chemo for the reversal. Make sense so far? Had the cancer spread to the actual anal tissue (we were within 1 cm), they would have removed all that and instead brought the remaining colon to the outside of my body. That's called a colostomy would never be reversed. And yes, by default that would mean the anus was gone and thus the normal opening we're all familiar with would be permanently closed.
So, life without a colon, what's it like? Well, one of the colon's big jobs is removing water from the digesta. That is why your excrement is relatively solid. Prior to that, it is necessarily a pretty liquid substance. So, what do you do with all that unconcentrated digesta? (Sidebar - there's a squiggly red line under "unconcentrated." I was pretty sure I spelled it correctly but right clicked on it anyway to see. Spell check wants to change it to "unconsecrated," which I find almost ironically funny, given our topic. If I had no self-control, I'd say "(un)Holy Shit" here, but I have plenty of self control. So there.)
Back on track! The ileum now comes to the outside of my body and a bit of it is turned inside out on itself, so I have what looks somewhat like an outy belly button about an inch in diameter with a hole in the middle of that. And since we already established that almost all of your digestive tract does what it wants when it wants, stuff is constantly coming down the pike. Sometimes noisily, like when your stomach growls. Mine now sometimes growls pretty vociferously, but most of the time is quiet. But since stuff's always coming, it needs somewhere to go. Thus, I have a plastic bag which is attached to a stiffish plastic disk about 4-5" in diameter. It has a hole in the middle, which is cut pretty precisely to the shape and size of my stoma. The whole assembly is then glued to the skin that surrounds the area. Underneath the adhesive and directly on my skin, I add an additional wax ring that helps give a better seal. One of the trials of dealing with this is that the contents of my gut still have all the digestive juices, enzymes, etc., at this point, so the contents are corrosive to skin. Thus, a good seal is ESSENTIAL. Otherwise, the skin can disintegrate, and that's a bad thing. The bag has an opening at the bottom which I use 5 or more times a day to empty the contents when I'm using the restroom. Not a big deal at all. I have to pay more attention to my clothing now, because of the bag, but no major changes. Tight jeans are a no-no, but since I'm not a teenaged girl, that hasn't been too big of a deal for work at least. If I have to sit much however, jeans become a no-no. I find the waist is too restrictive and makes my stoma site uncomfortable and subject to stress that might make it more likely to lose it's seal. Right now, you're just liable to find me driving down the road or at my desk with my pants undone. One of the girls suggested maternity jeans, but I've not had the cojones to purchase those just yet. Winter may find me with a bit more courage.
Remember how I told you that stuff is constantly coming down the pike? Well, that makes the "Changing of the Bag" a sometimes interesting production. The bag needs to be changed out every 3-4 days. Conventional wisdom dictates you attempt the feat when the stoma is quiet, generally in the morning before you've had something to eat. But remember I've told you I'm not a morning person, at least not without coffee. Also, flash back to paragraph #1, where I alluded to the effects of coffee on the digestive system. This has made for some interesting trials that make for a lot of false starts, clean ups and do-overs. I must admit to losing my temper on a couple of occasions. This necessitates creative swearing. Or maybe not so creative, since I have my go-to old favorite strings of invectives. This, by the way, does not seem to have any calming effect on my guts and they continue to go on their merry, digestive way unabated.
All in all, being an "ostomate" (how's that for a stupid word???) has not been too bad. Aside from a couple of violent swearing sessions, I've dealt with it alright. I'm having a little trouble with my skin, but hope I'm getting that resolved. The day-to-days are fine and totally manageable and have not impeded much on my activity. The worst change has been my need not to sweat, which means I've not been running at all. Sweat, glue and skin are not a good combination. I walk but need to find something more aerobic. I'm going to try a recumbent bike, me thinks. That way, I'll be constantly cooled by my forward motion. Recumbent means less pressure on my ostomy site. I've got to find something, because you ought to see my chicken legs. I have always had muscular legs, but lost a LOT of muscle mass in the hospital and haven't rebuilt it yet. Thus my case of chicken legs. I would say it is the most visible manifestation that something's not right with me. I miss my big ol' calves and want them back. Now!
And, once more (I say this every time), if I've failed to answer any question, please ask. I am happy to answer! And like any question, if you're wondering about it, so are 5 other people. Just ASK. Folks say my matter-of-factness helps them, and you'd be surprised how many people you run into who have ostomies. Not just cancer patients, but folks dealing with inflammatory bowel disorders (Crohn's, ulcerative colitis, etc.), injury, etc. As with almost everything, it could be a whole lot worse!
back to Barb's Blog