These last couple of weeks have been a doozy for the Robison household. A couple of weeks ago, I came home from work with a constant need to pee. I would pee, and five seconds later I felt like I needed to go again. I felt a lot of pressure in my lower abdomen as well. I didn’t have to google the symptoms to know what I was experiencing-my first urinary tract infection (UTI).
The next morning, I woke up with blood in my urine. It freaked me out, to say the least! As soon as the CF clinic was open, I called to let my nurse know. It wasn’t long before I had a urinary analysis scheduled the same day.
I had started taking over-the-counter Azo pills to help with the symptoms, so my pee turned bright orange. The next day, my nurse prac called to confirm the UTI and to talk about treatment options. See, I am very sensitive to medications, but especially antibiotics. When I have a CF exacerbation, I am normally placed on ciprofloxacin and bactrim. With UTI’s, cipro is a common antibiotic that is given. However, if taken too often, I can develop a resistance to it and it won’t work for me for anything. So our next step was Amoxocillin/Augmentin. My nurse prac was nervous because of my sensitivity, so she cautioned me to carry benadryl with me in case something happened.
I started the augmentin, and a couple of days go by before my nurse prac calls me again to tell me I am growing E. Coli in my urine. I was floored. She said it was very common, and was unsure on what caused the UTI. She asked how I was feeling-I told her I was back to my normal self and all of the symptoms were gone. She said that was good, but augmentin is actually not resistant or effective against E. Coli. But, because of my sensitivity to medications, she said we would keep me on the augmentin and just do a repeat urine analysis at the end of the two week antibiotic stent.
I have been on culturelle (a probiotic) for a few months now. Unfortunately for me, even a week of augmentin is not good for my gut. This past Friday, I started having on and off stomach cramps. They weren’t too bad. By Monday night, I was on the floor, in tears, with severe cramps. I couldn’t move. They would let up for a few minutes, but then I was back on the floor, doubled over in pain. On top of that, I had been experiencing severe diarrhea all weekend. Thankfully, Jason was home to help me to bed. We considered the ER, but we knew it was the augmentin. I texted my nurse prac to let her know what was going on and see if she had any advice. She told me to stop the augmentin and to call Dr. Burk in the morning. She told me that the symptoms I was having were typical of augmentin.
Jason held me as I attempted to fall asleep.
The next morning, I woke up with cramps-not as bad as the ones from the night before, thankfully. I went to work with my heating pad and called and spoke with my nurse. She spoke with my doctor and told me to watch the symptoms since I stopped the augmentin.
The cramps have ceased, I’m just waiting for the diarrhea to do the same. Before the UTI, I had started having other issues with my digestive system that I also spoke to my nurse about. So today, I bought colace, a stool softener.
These may seem like small issues, and really, they are.
But when you have CF and know that these are common issues for other CFer’s, it’s a hard pill to swallow when you experience them for the first time. You see, I’m already on two other antibiotics chronically, meaning I don’t have a choice. One I’m taking to decrease the inflammation in my lungs, the other I take every other 28 days to help with lung function. So you can imagine what adding a third antibiotic does to me.
Sometimes, CF is a tiring disease to live with. I’m tired of worrying about what new meds will do to me. Sometimes, I’m just plain tired.
This past weekend, Jason was at a bachelor party, so I ran a lot of errands by myself that Jason and I normally do together. I came home from going to the grocery store and was wiped. I woke up the next day with sore EVERYTHING. It was quite comical, but again, a little hard to swallow.
Cystic fibrosis is a progressive disease. You can’t stop it. No matter if you do everything you’re supposed to. People die. Now, that’s a lot for just a blog post, I know. But it’s the truth. Unless a cure is found, CF will most likely take my life one day. Of course, I plan on doing everything I can to stop that, and that includes keeping a positive outlook and trusting in the Lord and His plan for my life.
P.S. I did my repeat urine analysis yesterday, so let’s hope the E. Coli is gone!