I don’t feel very well today. Hard to describe what’s wrong. It’s such a vague feeling. But this is how it is sometimes when you are paralyzed from chest down. The sensations are odd, you know you don’t quite feel right, but it’s hard to put together right away.
Let’s see – for a couple of days last week I didn’t feel like eating at all. I know Wednesday was one of those days, where I just couldn’t make myself eat lunch. Thursday I made myself get a Bullet sandwich from Quiznos – the smallest size – because I know I should eat, but I wasn’t hungry. Friday and Saturday were better, but today again, I’m not hungry. No, the words should be stronger – I don’t want to eat at all, and it’s an effort to do so. But, I’m not nauseous, or feeling really sick.
2 days ago, I noticed the clear tubing that runs from catheter to legbag was showing some sediment – so yesterday I changed all my tubing. It’s a little early in the month, but not out of the ordinary. Perhaps I have an infection – so first line of attack is to change tubing. Then drink lots of fluids. My stomach hole (stoma? I really should find out the technical word for that hole punched in my abdomen) bled a bit when I pulled the old catheter out. That isn’t unusual, the urine irritates the tissues it passes through, and the movement of the catheter can scratch as well. Usually the bleeding only lasts a minute, and then clots up.
This time though, while I was in the shower I could see much more blood coming out. Another sign of possible infection. It reminded me of an incident that happened in the 1980s.
At that time I was intermittent cathing every few hours. I woke up at night, knowing I should get up to empty my bladder. I don’t remember how I knew – perhaps I had leaked in the bed, or perhaps I was having a dysreflexia reaction. But it was 5 in the morning, and I got up to pee. What came out of me looked like flat coca-cola! It was urine, but was a dark brown color –and scared me to death! I called the urologist’s office right away. My regular urologist was not on call that night, but I knew the doctor on call too. He advised me to come in first thing in the morning.
I couldn’t go back to bed. There was no way I was going to sleep. About an hour later, now around 6 AM, I cathed again. This time the stuff that came out of me was blood, and some of it was coagulating. I was sure I was bleeding to death in my bladder, and panicked. Called the doctor again, who was not too happy about my waking him up, but he calmed me down saying that I wasn’t bleeding to death, but that I should be at the office when it opened.
I was grateful that my regular urologist was actually in the office when I got there. I’m sure they thought I was exaggerating the situation. They put me up on the table, put a scope into my bladder, and that immediately let out a torrent of blood all over the room. It was like an explosion – blood all over everyone’s clothes, the floor….
My husband at the time, Ranjan, was with me and was instructed to push me over to the nearest hospital – about 2 blocks away – and get me admitted immediately. The urologist would be there shortly, and take me into ER. They had to go inside and cauterize the bleeding.
It was a scary experience all around. But the scariest part was actually post surgery. Now, I can say I was probably hallucinating, but who knew at the time! I woke up in recovery, and there was a man in the bed next to me, and I thought he had said that the doctor had just visited me, and was so sorry to hear I had bladder cancer. It wasn’t till a couple of hours later when I really did see my doctor, and most likely was less groggy, that I learned I was really ok.
Their theory was that I had a bladder infection that irritated an artery in the bladder enough that it couldn’t clot – not rare, but not common either. I was in the hospital overnight. And then everything was back to normal.
So, every now and then, when I change my tubing, I think about that event. This was one of them. While I was in the shower, before putting in the new tubing, the hole continued to bleed, and I was watching. I put in the new catheter, still a little blood. I wanted to get dressed, but was afraid that the activity would make it bleed more, and make it harder for me to see, as well as get blood on my clothes. On the other hand, I wasn’t going to be sitting still enough to let a clot have time to set, until after I got dressed! So, I put Neosporin around the catheter, and stuffed some Kleenex around the hole, and got dressed. Half an hour later I took out the Kleenex, and was relieved that the bleeding had stopped.
But all of this, and my not feeling like eating, does make me wonder if I have a bladder infection. I have no fever, no pain, none of the signs that people with sensation would pick up. I am drowning my body in water, washing my insides out. So, we’ll see. If I still feel this way tomorrow, I’ll start antibiotics.
The point of my story though – is that when you do not have full sensation in your body, you have to learn to notice other more subtle signs. And sometimes it isn’t so easy to interpret these signs. It’s possible I have some mild stomach bug. It’s possible that I have some annoying things (like seeds or nuts) working their way through my intestines that is triggering a mild IBS reaction, totally unrelated to my bladder. Or maybe I have something more serious – an ulcer, or bladder cancer! But my money is on a bladder infection. So, for now, an easy diet, lots of water, and waiting and watching. If tomorrow I start antibiotics, and that doesn’t make me feel better by Thursday, I’m off to my GP’s.
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