Relapses without antibiotics? How common?

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NikaNik
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Relapses without antibiotics? How common?

Postby NikaNik » Mon Apr 27, 2015 2:16 pm

Happy Monday, gang!

I'm 15 days off my Dificid taper and, thank God, BM-wise things are going well! Have some fatigue and appetite is coming back little by little (I had only made it 3-5 days off the other meds before). I'm trying to stay hopeful, but mentally I'm a mess. I've seen quite a few stories on here (recent and in the histories) of folks relapsing after six months, or even years, WITHOUT antibiotics - due to stomach viruses, respiratory infections, antifungals, or, worse, "no reason at all" etc. I thought once you got a negative PCR (after waiting the required amount of time to test) that c diff had left the building! (I think Tonja had written that her doc specified that the PCR can even detect the spores.)

My husband and I were thinking of starting a family soon (we ain't gettin' any younger!) but now I'm too afraid to even attempt it. I feel "ruined" by this thing. Like I will never feel like a healthy 35-year-old again. That I now have to worry about taking antibiotics and/or PPIs, but also that a cold, flu or other medication can bring c diff back? Please someone tell me that's wrong.

I know things could be FAR worse, I do. Just having a moment...

Nikki

Jackie25
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Re: Relapses without antibiotics? How common?

Postby Jackie25 » Mon Apr 27, 2015 3:40 pm

I don't think I've ever heard of someone having c diff strictly from a stomach bug or respiratory infection. I could 100% be wrong of course. I have heard of individuals contracting the infection again months or years later for no apparent reason at all. I understand your angst and worry about it all, I'm right there with you. But one thing I've been working on for myself is really taking the "one day at a time" approach. No one knows what tomorrow holds except our creator. Worrying about what COULD occur tomorrow or in the future will only rob you of the joys today! The fact that you are doing so well BM wise this soon after stopping medication, in my opinion, is so good! And exciting! And starting a family, how thrilling. I can't wait for that day with my husband :) I know it's easier said than done but try to focus on the positives! Your right, it could always be worse. But you are more than entitled to have "moments" Lord knows we all deserve them after going trough c diff!

justme
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Re: Relapses without antibiotics? How common?

Postby justme » Mon Apr 27, 2015 3:57 pm

I agree wholeheartedly with Jackie. Don't let fear ruin your life and affect your future. Yeah, you could get C. Diff again, but you also might never get it again. It appears that scientists are working on a vaccine and developing other types of antibiotics that C. Diff isn't resistant to. Start a family and enjoy your life. My best wishes to you for a wonderful future and very happy life.
Aloha,
Anne

seekingcure
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Re: Relapses without antibiotics? How common?

Postby seekingcure » Mon Apr 27, 2015 4:22 pm

Nikki, Don't let what is going on with me cause you to worry. I am an older lady and have numerous other health issues which complicate the c-diff infection and lower my immune system. I've also had bowel dysbiosis with IBS practically all my life. In addition, I have been on low doses of Macrobid and, for a short while, Ceftin for UTI prevention. I also took a round of Xifaxan in January for suspected SIBO, which I think started my downward spiral this time. So, I am far from the norm. I still think it's very unlikely for someone who is healthy to get c-diff without taking antibiotics. You are young and were healthy prior to c-diff and you will be again and soon this will be a distant memory for you. Don't let the fear of c-diff rob you of any more of your life. Time to start thinking seriously about that baby!
Bea

NikaNik
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Re: Relapses without antibiotics? How common?

Postby NikaNik » Tue Apr 28, 2015 11:45 am

Jackie, Anne, Bea - you ladies are incredible. I cried while reading your posts. Bea you beat this before and will again - I know you know that! Have your symptoms eased up now that you're back on the Vanco? I hope so!

Mentally I just don't think we can try to start a family for a while, if ever. Too worried about being in a hospital, needing an antibiotic etc. I'm PMSing at the moment which is always fun! We had to put our little dog to sleep last week (my other dog passed away six months ago). It's been rough emotionally and I just NEVER wish I got this thing or ever heard of it. I just want to go out to lunch with my husband, mom, friends and order whatever I want - mozzarella sticks, pizza, etc. without worrying about c diff and/or D - heck actually HAVING a full-on appetite would be amazing. I'm SO grateful God has taken me this far, but I'm still figuring out how to deal with all this anger.

teresajo103
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Re: Relapses without antibiotics? How common?

Postby teresajo103 » Tue Apr 28, 2015 4:30 pm

Oh wow...I understand how you feel on a lot of levels.
When I finished taking meds I was very scared. You know.....I cried for two days after I finished the difficid. I worried constantly Bout relapse. I think you are probably just fine. If you are not having d several times a day.....then live on the hope that you beat the beast. I am not feeling so good today.....but I have pushed my self real hard for several days...I think maybe the lasagna did me in. (Lol) the riots in Baltimore have me freaked out too. I hate the media saying the gangs are after all the cops. I was like dude....don't give all of them ideas....sorry bad tangent.just try to breathe.....sometimes I like breathing exercises that I found on you tube when I was really sick...though now after a little bit they put me to sleep. Just don't let cdiff take the joy out of life.....it's hard to do....but I am learning. Babies are awesome....My daughter was told she couldn't have children because of her seizures.....Well....I guess someone should tell my 3 yr old grandbrat that cause man her mommy worked hard for her. Rayne is a full blood cop kid...her mommy is dispatcher...her daddy is a cop...and her pawpaw is Lt. Over them all. They call her 102-1/4...at the pd. What a miracle though....My point is....have a miracle of your own....they are truly priceless.

NikaNik
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Re: Relapses without antibiotics? How common?

Postby NikaNik » Wed Apr 29, 2015 6:43 pm

Teresa, girl, you so "GET IT" like everyone here (and you know I'm right there with you with the cop stuff. I worry about hubby every day! We're very close to just doing the wedding photography full-time and even though he loves being an officer, he loves being a photographer more so we shall see!).

Today is day 17 off and no D so I'm hoping that's a good sign. My appetite is still very off/on. Like sometimes I'm super hungry but then when I think of a certain food I get nervous about it bringing on D so I end up eating something bland and am hungry again a little while later. My doc said it takes a little while to get normal again. How long after the Dificid did you relapse?

SO thrilled to hear that you're having a wonderful time with your family. You all sound like a fun bunch! 102-1/4 ha! Love the name Rayne, too. Enjoy every minute with her. Lasagna - ohhhh yum! I haven't had that or pizza in months. Have some for me!

Still not sure I will ever get over the fear enough to have a family of my own but maybe...just maybe. : )

Bobbie
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Re: Relapses without antibiotics? How common?

Postby Bobbie » Thu Apr 30, 2015 2:03 pm

Dare to live or this damnable disease will ruin your life.

Your recovery sounds normal to me, you are young with a great husband who supports you, and you are back at work doing what you love. Enjoy!

So sorry about your dog. We've had to put 3 down and have an old Schnauzer that is nearing the end of the road.I have the 3 dogs' name tags in a plastic magnet on my refrig.

Afraid loving can mean loss - a chance we all take.

Read The Rainbow Bridge - based on an old Norse tale. Very comforting. Grieve and eventually move on. Would you consider another dog?

Get out of the house and do something. Retail therapy is great. I just had my first professional bra fitting, and that was an "upper." NO mean comments, Roy.

seekingcure
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Re: Relapses without antibiotics? How common?

Postby seekingcure » Thu Apr 30, 2015 2:29 pm

Lol, Bobbie, I could use that sort of "upper" as well! Love your positive attitude!

Nikki, you are going to do great and this will soon be a distant memory.

Sorry about your dogs, Nikki. I've lost many over the years and it doesn't get any easier. I keep saying I'm not going to get another one, but then I just have to have one. Interestingly, in the article that Beth posted yesterday in Media Reports, Dr. Stollman said that having a dog was beneficial for good gut bacteria. Who knew? Read the Rainbow Bridge, as Bobbie suggested. I've got five waiting there for me and I truly do believe all dogs go to heaven.

Hang in there, ladies!
Bea

roy
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Re: Relapses without antibiotics? How common?

Postby roy » Thu Apr 30, 2015 6:41 pm

Bobbie
Me? Mean?
Was scaffolding and a hoist involved?
Hope its stopped the chaffing on your knees!
Its not Pnumonia its whiplash!

Bea!!
"Hang in there ladies"
NO NO NO!
Don't tempt me

Bobbie
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Re: Relapses without antibiotics? How common?

Postby Bobbie » Fri May 01, 2015 3:00 am

Shame, Roy, but I did "put myself out there."

Seriously, ladies, this is one iof the best investments I've ever made.i feel at least six months younger, ignore the naysayers and fun makers. Do anything that will make you feel better - anything that is legal that is, or if it's illegal, don't get caught.

Nancy1
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Re: Relapses without antibiotics? How common?

Postby Nancy1 » Fri May 01, 2015 12:19 pm

ROFLMAO Bobbie and Roy!! And Bobbie, I love your comment "Dare to live or this damnable disease will ruin your life." Very very true! I am going to post "Dare to live" on my refrigerator so I look at it every day.

NikaNik
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Re: Relapses without antibiotics? How common?

Postby NikaNik » Sun May 03, 2015 10:39 pm

LOL! Roy and Bobbie. Love it! And I agree - "Dare to live" is the perfect c diff mantra. Truly. I'm still wondering if there's data or if anyone knows how common it is to relapse without taking antibiotics. Like out of nowhere or from a stomach virus or some such. Is it pretty rare?

Thanks, all, for the sympathies about our little doggie, Hunter. Miss him so much. Rainbow Bridge is one of my favorite poems. Makes me cry every time. Not sure we will get another dog right now but someday. I can't imagine life for long without a dog! We also have a sweet, fat, cuddly cat who is the perfect snuggle buddy to help us through this time. :)

Day 21 of recovery so far and minus that one episode of watery-ish D this past Thursday, everything has been formed and my appetite came back full force the last couple of days (feels like I could eat the dang fridge!). I almost forgot what it was like to be so hungry! I'm adding new foods in here and there and praying every time lol...but so far, so good. Thankful!

seekingcure
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Re: Relapses without antibiotics? How common?

Postby seekingcure » Sun May 03, 2015 10:46 pm

Great news, Nikki. I think the appetite returning is a very good sign. Keep us posted.
Bea

teresajo103
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Re: Relapses without antibiotics? How common?

Postby teresajo103 » Mon May 04, 2015 1:08 am

Hey Nik....that is awesome. Don't feel like the lone ranger....I have eaten like porky pig for a week. Mom saw my baggy clothes and she said....we are going shopping. I got new jeans and t shirts that fit. If I don't stop eating they won't fit long though. I am so glad you are feeling better and the fact that you are hungry is awesome. Keep getting better....we are going to kick this....I just know it. Hugz for you.


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