I try to keep my posts positive on here. I try to be more insightful. I even had a rough outline of what I thought my next post would be (sketched out during one of my “it’s 2am and I can’t sleep episodes). It would/will be a good one. Once I’m back to my happy place.
But for now, I’m struggling.
Those of you I see regularly know I’ve been having a lot of trouble with leaks from my ostomy bag. This is for a variety of reasons, and is not the norm for most people, or at least that’s the impression I get. First, let me explain how ostomy bags work.
Ostomy bags are plastic bags that adhere to the skin of the abdomin, for the purpose of collecting waste from the digestive track. Part of the intestine system is pulled through an opening in the abdomen and sewn in place, called a stoma. There are different reasons people get ostomy bags. Some have part of their large intestine some out, some small. Some ostomy’s serve as the permanent end point of their digestive track, some are temporary diversions. In my case, my small intestine comes out, as a temporary diversion – an iliostomy.
A ostomy bag is needed to catch the waste from the body. Like most products, ostomy bags are created by a variety of vendors, and in variety of sizes, shapes and features. Ideally, the opening to the bag fits snugly to the stoma (the piece of intestine that sticks out). Most permanent stomas are very circular and between 1-2 inches in diameter. That’s how mine was right after surgery. However, it is normal for them to shrink as the swelling goes down, which mine did. Because my ostomy is temporary it became very oval shaped, requiring a bag that allows for a custom shape to be cut in the opening.
A couple other obstacles that have proven difficult are that it seems to have retreated back into my abdomen, making it hard to get a close and tight seal. Too close chances the potential of covering the opening, and any dense waste is a candidate to get under the seal and push it off. Too far away and my outer skin is exposed to my digestive acid, which will slowly deteriorate.
My stoma is also on the smaller side, which leads to smaller openings to the bag. I think this increases the chances of blockages just within the bag.
Since I’ve backed off weight lifting and intense exercise, my bodies weight has subtly shifted to form a mini belly. I’m not really concerned overall as my doctor recommends I try to keep putting on weight, but has created new folds when put under pressure (like my leaning forward). This can cause gaps between my skin and the seal, and allow for waste and moisture to work its way under and eventually out of the bag.
When Bennie leaks, it is because the bag won’t adhere to my skin. Or, it did, but my powerful poop continues to find ways to get out.
On Thursday, my stoma nurse in Lincoln gave me a giant bag of different products to try. I recently have been burning through 2-3 a day. One bag should last 3-4 days. Not only does this become expensive, it irritates my skin. The constant leaks around my stoma prevent that skin to ever really heal, though the bleeding seems to have subdued. It also causes the skin where the bag adheres to become very irritated. Imagine a giant band-aid you have to put on and rip off several times a day, every day.
It’s become debilitating. It’s all I can think about. When I leave the house, I’m constantly touching and looking for leaks. My mind is always patrolling for any hint of a sensation for a leak. Usually I have about 10-15 minutes to get it off once a leak is detected, otherwise things get very messy. This also has caused me to be leery to go anywhere where restrooms aren’t immediately in range, or that is foreign to me.
It’s extremely stressful to think about this nonstop, to always be touching around there, to try to not lean forward or bend over too far, to make sure I always have twice the back-up supplies, and to be in tune with the area 24/7.
As I’m posting this blog, it’s been a full 24 hours since my last change, which is really good. All I had to do was cancel all today’s plans, lay in bed, and try to move as little as possible. Super.