“The New Normal”

[Fish1]

Okay so I finally went to see a GI yesterday. Loved her. She was supportive and knowledgeable. She reassured me that the Vanco Taper I was on for my first relapse was a good one, and that overall she thought I must have a mild case as I’m not ever in the bathroom more than three or four times a day. No profuse diarrhea, no fever, etc. She assured me that my family was indeed safe, as long as I practice proper hand hygiene, etc. Whew! That was a big one. You can read it a hundred times but the burden of responsibility for others is real. I do feel fortunate at this point, especially when I read some of the experiences of other posters. However, the last thing she said to me was, “Stay away from antibiotics unless it’s life or death.” I walked out of there feeling semi-normal and actually had a slight jaunt in my step for the first time in a while. Later that night, I began thinking about her last words to me... Stay away from antibiotics unless it’s life or death. I know this, but the emphasis she put on it finally began to register. I’m 60, and I hope to have at least a few more years of life to live. I have asthma, not chronic, but it does make me more susceptible to respiratory infections. I have a three and half year old grandson who attends daycare; and I am the one who usually watches him when he is sick and can’t go to school. When out shopping, it’s not uncommon to see a mother towing a hacking child around in her buggy, usually mom or dad are hacking too. Not critizing, I’ve been there. You gotta eat, so if there’s no one to watch the babies then they have to come with you. Anyhoo, there are a thousand scenarios I made up in my mind on how I will be exposed to germs that may potentially make me sick to the point where God forbid I need an antibotic. When my GI said, I think this taper is gonna do it for you. My heart sang Yes!!! However, the next time I’m exposed to a cough or a sneeze or some bacteria that someone left on a hard surface; I could need an antibiotic, and this may all come crashing back down on me again. Hellllloooo my brain said...you are never going to be the same person that you once were. In the past, I have been described as eternal sunshine, happy go lucky, and a real fun gal. I want to stay that real fun gal. How can I, with doom hanging over my head every time I get a sniffle? Already I’ve started packing my bag full of Clorox wipes to entirely cleanse my shopping buggy. I try to grab one in the parking lot of my local Publix store and scrub away out there so that I don’t attract as much attention. I hear them....Look at that woman with the wipes, she must have a lot of mental problems. Yes I think as they walk by and I’m furiously wiping my cart...yes I do! I diabolically give them a stare back. Now when I hear someone cough in a store, I will make a leap to the opposite side of the store that would make Spider-Man jealous. No more awww I’m so sorry, you guys must have that bug going around. Need anything, water, a mint, how about a coughdrop? Nope I will take my trusty viral mask out of my bag, put it on and run for the hills. The most important thing is, who is gonna take care of my precious grandson when he gets sick??? He also has respiratory issues and gets sick during winter often. This bug, the little diabolical devils that lurk in my gut are taking away my eternal sunshine and I’m angry about it. It’s hard being hit with this stuff. People who haven’t gone through it, bless their hearts, have no idea the mental and emotional pain it causes. Last night I was mocking a weight loss commercial on FB to my husband. “ I’ve lost 32 pounds on c-diff.” I said. He just looked at me with his eyes crossed. Bless his heart. He thinks I look hot with the pounds gone. He is trying to be sweet, but I’d put every one of them back on tomorrow if I could, and go back to living ignorant to what c diff is about. I’ve read many posts on here about a new normal and I’ve slowly come to the realization that yes, even if I’m one of the fortunate to finally get back to a “normal” life, it’s never gonna be the “same” life. It will be a new normal and I have to be thankful for that. I’m thankful if I am able to not have another relapse unless I take antibiotics. Some people relapse over and over without them. I’m thankful if I only have to take Vanco and not go through the pain of other meds. I’m thankful if I don’t have to do a FMT, and most importantly I’m thankful I’m still alive because although rare, people have died from this. My focus now is to get as healthy as I can. I don’t drink coffee anymore, I haven’t had anything alcoholic in weeks and weeks, I stay away from fats, red meat, fast food. This is good for me. I’m just trying to shine out the dark cloud that was blocking my sunshine. I truly think mental attitude has a lot to do with recovery. I am going to beat this sucker, and my prayer is that all of you will too.

[beth22]

I can understand how you feel. I am not much older than you and I have a grandson too. In fact, both my husband and I got some upper respiratory illness in March after taking care of him and picking him up from daycare. However, many people who don't have grandkids also got sick. After c diff, I visited my mom several times a week and almost every day in summers when I was off from teaching, at a skilled nursing facility where she lived. I was exposed to lots of things - including when they had to quarantine everyone due to norovirus one year. I also teach high school and am constantly exposed to germs. Nonetheless, I managed to stay away from antibiotics most of the time. In 2014 I got whooping cough from one of my students and had to go on antibiotics. A few months prior to that I had to take Levaquin along with vanco for another URI. In 2016 I wound up in the hospital from complications of the flu and was given heavy dose IV antibiotics. I did test positive after that, but did not get a full blown active infection and did not have to treat.

Should you need antibiotics in the future, I would print out the list in CDI information and ask if one of the antibiotics that is less likely to cause c diff would be one that you can take. I usually insist on a culture of some kind to make sure I need antibiotics. In March, I could have sworn that I had a sinus infection due to the purulent stuff going down postnasally, and the culture did show a bacteria that did not need to be treated unless it did not clear on its own. It did thankfully. You can also be sure to get your flu shot every year. Some doctors like to give vanco if they prescribe another antibiotic. I did that once (mentioned above) and will not do it again. It gave me more problems than it was worth and I had to do a home FMT enema in order to prevent a CDI recurrence. When I did not take the vanco the next time, I felt much better. I took extra probiotics.

Should you relapse again, you might talk to your doctor about Dificid. It is less likely to kill off good bacteria.

My life has definitely not been the same since c diff and I do some of the same things you do - run off when I hear people cough, etc. But, life does go on and hopefully, one of these days they will find a real cure for this disease. Meanwhile, don't miss out on those precious moments in life, especially with your family.

[roy]

Just want to add that almost all those bugs you mention are a virus and not a bacteria!
Antibiotics do not treat a viral infection although many US Drs still dish them out! (not so much in UK)
Most bacterial infections will resolve on their own, strep for example is cut short by only a day and that's if antibiotics are taken within a few hours of the start of symptoms.
Inner ear infections rarely need (or are cured) by antibiotics they simply go away.
What your Dr is saying is dont use antibiotics as a convenient cure all for minor things.