2nd Relapse...so scared!

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sammi79
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Joined: Wed Mar 30, 2016 11:02 am

2nd Relapse...so scared!

Postby sammi79 » Fri Jan 17, 2020 9:56 am

Hi All,

I'm back! So, I was diagnosed with my 2nd relapse on New Year's Eve. My first infection was March of 2012, 1st relapse in spring of 2016, and now my 2nd relapse. This time was due to multiple uses of antibiotics to treat a recurrent UTI (hello pre-menopause).

Why I am so scared is that my 1st episode was in July. We were out of town and eating out for every meal, I just assumed my system hated me. I was off for a few days but then went back to normal-ish until September. That is when I started having blood in my BMs. No other symptoms, just blood. Occasionally, stool was soft but no pain, no fever, just a little blood now and then. I chalked it up to a colitis flare. End of November, I started having crazy abdominal bloating along with the continued bloody BMs. I wondered for a nano-second if it could be CDiff but thought "no way". Stools were still formed and I had no frequency or anything else aside from blood and bloating. Another month went by and bloating turned into excessive gas, like EXCESSIVE, blood was in every BM and I was going a few times a day, although still mostly formed. I called the Dr. and brought him a gift which was positive. Literally, I turned in my sample in a mini Merry Christmas bag. I needed humor at this point.

I started on Vanco 125mg 4X/day for a month and then we'll start a taper. He said since I can pinpoint my 1st bout back to July which technically never returned to 100% normal, and that I was having blood in every BM, he was considering the infection to be severe. A week went by, blood had all but disappeared and I was feeling great. My mom and I went out for Mexican at our favorite restaurant and we both ended up with bad D for about 2 days. Something we ate wasn't right. Well, that made me worse than I had every been. Frequency increased, I constantly feel rectal pressure, I have pain after I eat sometimes and I've been having accidents. I never thought I would be 40 years old and having accidents...I try to laugh about it, but it's pretty darn embarrassing.

I called the Dr. office back yesterday and they upped my Vanco to 250mg 4X/day and I go into the Dr. in 5 days to see how it is going. She kept asking me about fever, severe cramping and I don't have those. She said if I do to go to the ER immediately. I had a panic attack 2 nights ago because I had convinced myself at 12:30am that I was going to end up with toxic megacolon. Now that my Vanco dose has been up, I've been reading about kidney poisoning and that is not helping my mentality. I know I went a little crazy last time I had CDiff, but I am so worried because this went on longer before I went for help. This morning, things were trying to form again and I don't have the ridiculous rectal pressure that I've had for a week. But the 250mg dose of Vanco makes me so nervous. I have a 13 year old, an 8 year old and a husband I love more than anything. I worry I harmed myself by not being more proactive when this all started.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: 2nd Relapse...so scared!

Postby NanciT » Fri Jan 17, 2020 11:19 am

Hi, sorry to see you back again with another infection. These sound like "new" infections, a relapse is when you complete treatment and it returns with in a short while. These sound like new infections. The Vanco 250 is typical, if D has stopped and it is working continue on and hopefully this first round will take care of it.
I know how scary it all is......the fear is terrible. One thing that is good , your have done well on your past infections so hopefully this will be gone with the Vanco. If it's worked twice in the past, hopefully it will again. Just give yourself time to heal.

Remember the Gut/mind connection, it can be very difficult as you push through this especially since it is the 3rd time.

Hang in there...think about how you beat it twice and will will again!! If for any reason the Vanco is not working, ask for Dificid

Take Care

NanciT

sammi79
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Posts: 74
Joined: Wed Mar 30, 2016 11:02 am

Re: 2nd Relapse...so scared!

Postby sammi79 » Sat Jan 18, 2020 10:28 am

Thank you so much Nancy for your reply!

When you say "new" infection, do you think I am picking up new infections from the community? Or is it considered "new" because it has been so long and the antibiotics have just re-awakened the beast?

I have now been on the Vanco 250mg QID for 2 days and I am seeing changes. Things are definitely trying to form more and the rectal pressure has decreased. It actually didn't start until after dinner last night, so to have a daytime of relief was heaven! I also slept through the night last night without running to that bathroom every 2 hours and I haven't had an accident. One concern I have is that I have started bleeding again, but with the BMs starting to form, I am sure that is also creating more friction in areas that haven't seen it in a few weeks. The nausea is not fun and I feel like I spend most of my days on the couch. If someone was to stop by our home right now, I would be so unbelievable embarrassed. All of my cleaning efforts go into the bathroom everyday and leaves little energy for anything else. It's a treat for my family if I am left with enough energy to make them dinner at night. My goal today is to get the living room cleaned.

The anxiety is TERRIBLE this time. My blood pressure has been running high since July and I wonder if this infection has contributed to it? I am overweight, but otherwise healthy and haven't had a BP problem in the past. I haven't been able to work and I do enjoy my job. I substitute teach and work 3-4 days most weeks. I confided in the school nurse about my condition because I never would want to put anyone at risk. She said that the protocol is that I can return once I have been symptom free for 72 hours. I am hoping that with this increase in the Vanco, I can return the beginning of February. I'm praying for no more set-backs!

Oh, this is the first time I've lost weight having CDiff!!!! I need to take some excitement out of this. Last time I gained 14lbs. My doctor laughed with me about that one and said it was a 1st to see someone gain. But I'm down about 12lbs as of now. I know it isn't optimal weight loss but it is the only stinkin' positive about this whole mess!

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: 2nd Relapse...so scared!

Postby NanciT » Sat Jan 18, 2020 12:09 pm

Yes, if you did not have CDIFF for a long time, it's a new infection. We call a relapse when you finish treatment and it returns. I have 5 relapses over 1 year period. Most came back 2-4 weeks after treatment.

It sounds like the Vanco is working, great to hear!! Yes, the anxiety is horrible!! It's a gut/mind relation we see everyday on this site. Even though we know about it, it's a very tough battle for most including me. It took me a long long time to battle.

I just finished a week of Keflex, the anxiety has returned and I have been CDIFF free for 5 years. I am trying to be reasonable with myself but there is a fear. One day at a time

Wishing you brighter days ahead!

NanciT

Bobbie
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Joined: Sat Aug 06, 2005 8:00 pm

Re: 2nd Relapse...so scared!

Postby Bobbie » Sat Jan 18, 2020 4:32 pm

Sammi79,

So sorry about your relapses. Yes, they are mind boggling,

I had my first episode of c diff in 1993. It lasted 4 years. I worked most of the time. My second was in 1999. My last and third was 12 years later. All were antibiotic related - for pneumonia or a UTI. A year ago last summer,! I took several broad spectrum antibiotics for a UTI. I was fortunate to escape c diff. I also had cataract removal surgery - it did not turn out well.

NancyT gave excellent advice. Take it a day at a time. Stay away from antibiotics if u can. The emotional toll is horrific. I have had several episodes of PTSD.

You sound educated and informed; hang in there and keep posting.

With every good wish.


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