So what exactly is an “ostomy”, and how did I get one? Many of you have probably heard of a colostomy, or a colostomy bag, but, much like me, had no idea what it meant or what happens to those who get one.
An "ostomy" is an opening created somewhere on the body to remove ‘stuff’ from your body, i.e. waste. In my case, we're talking about a colostomy, the most well-known ostomy, where the colon is detached and routed out of the body to a "stoma", where the ‘stuff’ exits. Your colon sort of circumnavigates around your entire abdominal cavity, starting near your right pelvic bone and going in a big, upside-down U shape up your right side (roughly along your oblique) , across the abdomen about halfway between your belly button and chest, and then back down the left oblique side before being routed out the back.
The colon functions as the final gathering place for waste that needs to be removed from your body. When something damages the colon – often colon cancer, but there are quite a few other reasons the procedure is performed – the damaged parts are surgically removed, the end towards the rectum stapled shut, and the healthy end routed out of the body to an opening called the stoma.
The stoma then becomes your you-know-what. There are a couple differences; the most notable (besides it being on your side and not part of your butt) is that you have no control over it. The ability to “hold it” is a function of the rectal muscles and nerves; since mine are no longer involved in the process, there’s no way to keep the ‘stuff’ (including gas) from coming out whenever it wants. This makes for some interesting social situations, especially in quiet rooms.
To manage a colostomy, there are two main things – the infamous bag, and the wafer. I was surprised at how minimal these appliances, as they’re called, affected normal life. The wafer is applied directly to your skin and has an opening that goes around the stoma. Depending on the type, the bag is either part of the wafer (meaning every time it fills up you have to change the entire thing), it’s a one-time disposable thing, or it is “drainable”, meaning the bag can be emptied as needed. I use the disposable and drainable in tandem, depending on the situation.
In my case, a bunch of bad luck contributed to the need for the colostomy. I had a diverticulitis, which is when a pouch or pouches form on the intestine and become inflamed. Although mine was being held in check by my immune system (there were no signs of the typical side effects), there was a perforation that allowed fluid to collect next to the sigmoid colon (the last part of the colon before the rectum).
The problem was, my immune system was basically going away – as part of my TIL treatment, a specific chemotherapy was given for a week to lower my white blood count to near-zero, before the TIL was infused back into me. Unfortunately, this meant that this somewhat-under-control situation could and likely would have become uncontrollable quickly – and once the bacteria spread, it would likely result in death.
The ironic part is that the colon perforation is still a bit of a mystery. It was assumed that tumor would be found in the colon, but that wasn’t the case. This rupture just happened on its own; separately it still would have been a medical issue, but considering my recent medical history, it was a surprise to the surgical oncologist that tumor was NOT involved. Literally, I just had some bad luck.
I certainly could have avoided, at least for awhile, the colostomy, but it would have required getting off the TIL trial. At the time, the TIL t-cells were growing at an “unprecedented rate”; my choice was to move on to Plan B or suck it up and get the colostomy. As much as I didn’t want this bag hanging off me, we believed in the path we had chosen, and were going to see it through. In hindsight, the TIL did not have any immediate effects on my melanoma (although I believe it still may have contributed to getting the tumors weakened) and the additional surgery added both an extra month for the tumors to grow, and the added risk that comes with a major surgery. Plus, as the surgical oncologist told us, he’s seen antidotal evidence that tumors tend to get worse every time a surgery is performed – something that our internet research seems to confirm, and common sense validates (if your body is busy healing from surgery, its ability to fight the tumors becomes much less effective).
While the colostomy is permanent, it is also reversible. For the reasons mentioned above, they won’t even consider reversing this thing until I am tumor free, and I won’t be pushing for it – yea, the colostomy bag kinda sucks sometimes, but if I need to live with this to live another 30 years, it’s a very small sacrifice.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »