Update from Buffalo
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Hi all…
quick note from Buffalo. My family is keeping me busy busy busy!! Almost as soon as I flew in (11 pm Sat night), my father ended up with a fever. So I drove him to Roswell at about 1 am. I was up until at 4 am.
His C. diff is back and it’s taking its toll on him again. He’s suffering so badly (physically and emotionally). He has no control over his bowels. He’s really having a rough time now.
He DID finally get up and take a walk with me today (his PT asked him to do it yesterday but he’s afraid of having a bowel problem and not making it anywhere safe in time). However, he still has a fever and the Flagyl he’s on apparently isn’t making a dent in the c. diff.
It’s definitely rough on him and it’s hard for me to see.Mom, on the other hand, is doing really well. She went through her surgery on Friday very well and got home on Sunday. I’m taking care of her during the morning and afternoon, then visiting dad in late afternoon and then coming home to make dinner. She’s keeping me on my toes!
Tomorrow my mom is going to get on the message board and do some reading. I’ll introduce you to her in a message. She’s a wonderful, strong, and very brave person. I can’t wait for you to “meet” her.
P.S. OOOPS… Nevermind this P.S. … the FDA didn’t approve Revlimid. I got my info wrong
.Thanks for listening,
CarrieHi Carrie,
My father has had C. diff four or five times now. It’s so persistent and it’s hard to get rid of it for good. I’m new to this forum, but I have a couple of thoughts for you in case you haven’t heard them already from someone else here.
Has your father’s doctor called in infectious disease docs for a consult? C. diff does fall under ID, and we found the ID specialists to be very helpful. Sometimes, for some people, C. diff is resistant to Flagyl and another med needs to be used. One of the times my father had it, they gave both Flagyl and Vancomycin and that worked within a couple of days.
I don’t know if anyone has mentioned to you that beside feeling yucky, C. diff can cause depression. When my father had C. diff, he got really down. I mean very depressed — ready to give up his fight. We found it helped to remind him that he’d be feeling better physically, mentally and emotionally within a few days when the C. diff was under control. And that was always the case.
There are a few other things you can try to treat the C. diff besides meds. My guess is you’ve heard about yogurt and lactobacillus pills, and those may be helpful.
My father’s doctors consulted with a GI specialist, and she recommended a product called DanActive instead. It’s made by Dannon and sold in the grocery store near the yogurts. This GI doc believes in it so strongly, she went out and bought eight bottles of it for my father and brought it to him in the hospital! It’s kind of like a thin milkshake, and it comes in several flavors, all of which taste pretty good. They look like small milk bottles (only 100mL each). Each bottle contains 10 billion active cultures — that’s better than yogurt or lactobacillus. When my father had C. diff, he drank two of these per day, and it really helped. He now drinks one every morning with breakfast, just to keep the good bacteria in his digestive tract. Do I sound like I’m doing a commercial for DanActive yet?
My father’s doctors said they can’t say C. diff is gone until they have three negative tests in a row, and those tests have to be at least a week apart. Once they think it’s gone, they tend to stop the Flagyl. Each time they’ve done that, my father gets C. diff again within three days. They’ve decided just to keep him on Flagyl, and he hasn’t had C. diff since. Our doctor says that for some people, once they have C. diff, they’re lifers on Flagyl. They consulted with ID, and the risks to staying on Flagyl are few compared to the benefits of it.
It sure does sound like you have your hands full caring for both of your parents right now. I care full-time for my father, and I can’t imagine trying to care for my mother in addition. You and your parents are in my prayers.
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