I am okay

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
lillychamille
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I am okay

Postby lillychamille » Fri May 31, 2013 2:11 am

My story started in June 2012 when I miscarried and chose a D&C (worst mistake ever in my mind). Less than 6 months later, I spiked a fever and wound up hospitalized with a pelvic infection (probably brewing since the D&C). I was given 3 different IV antibiotics over 2 days and sent him with 10 days more of 2 of those antibiotics, the fatal combo. Two months later after having loose bowels everyday, but no more than once or twice a day I attributed to stress, I was bedridden with horrible abdomen pain that I was afraid was the pelvic infection. OB sent me to have CT scan which came back showing severe intestinal inflammation. Referred to GI who put me on Flagyl immediately because he knew from my history it was C diff. Decided against hospitalization because of my younger age, 31, and told me to "hang in there". Easier said than done. Diarrhea after CT with contrast was debilitating to say the least, 20-30 times a day, Flagyl made me nauseous, vomiting and diarrhea to the point of not being able to drag myself out of bed to do either. But I got better after 14 days of Flagyl. Had 2 days of solid movements and consuming actual food then BAM the diarrhea hit again. Went back to the GI who ordered more stool samples and a colonoscopy. Though the prep made me want to pass out from bathroom exhaustion, I felt slightly better after being "cleaned out". Colonoscopy showed possible Crohns. Stool positive for C diff. More Flagyl and add Asacol. Put myself on Ultimate Flora, Florastor, and Phillips Colon Health. GI still wants a small bowel follow through to check for Crohns, but as a spicy food eating Texas gal, it wouldn't make a diff anyway. It is obvious the C diff was the issue and I am fine without the C diff!

Anyway....I am 3 solid months free of this HORRIBLE bacteria, still taking my 3 daily probiotics and scared to death to discontinue even one. All because we wanted to expand our family of one child to two. My body is even more beat up than when I started a year ago and the bank account more negative, but I am alive! There were honestly a million times I didn't think I was going to make it. C diff sucks the control, power, freedom, will, peace, comfort, ease, life right out of you. I met a woman just a month ago who found out I had C diff. She was a survivor as well and said the most important thing one who is suffering can hear "You will be okay". That is what this site did for me. I never posted, just read. When I was confused, when I had a new symptom, when I relapsed, I read. And it made the world of difference. Unless you have had this stuff, you can never understand truly. My husband still thinks of it as a nasty stomach bug. Uh, no. So, this is my story, this is my "you will be okay", and this is my thank you.
You WILL be okay!

Bobbie
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Re: I am okay

Postby Bobbie » Fri May 31, 2013 2:19 am

Thank you for your story. I've always thought the most important thing to say (because we are not a medical site) was "You'll be OK." Docs. are often negative altho. I think they have to tell you "the worse case scenario" because of med. mal.

We all need someone to hold our hand sometimes - someone who really understands what we are going through because we've "been there" and survived.

Am so glad the site helped you. I appreciate your thanks and know all our mods. will appreciate it, too.

gm37
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Re: I am okay

Postby gm37 » Fri May 31, 2013 10:09 am

Lillychamille,
How wonderful of you to post here! Your story will be read and bring hope to others.
I am so sorry that you have been through so much suffering. I hope your future is bright and c-diff free!
Anne

cfierro
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Re: I am okay

Postby cfierro » Fri May 31, 2013 11:31 am

Thanks for posting. It brought tears to my eyes. I just want to be ok too.

lillychamille
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Re: I am okay

Postby lillychamille » Fri May 31, 2013 1:38 pm

For a LONG time I heard that I would be okay and wanted so bad to believe it, but the symptoms and the tests and the meds (and raising a 4 year old boy!) were just too much most days. It really does a number on you mentally. I had heard of C. diff in passing, but it was just diarrhea. It is so much more than that. Other than keeping up with the meds and probiotics faithfully,the best thing you can do is know that you will be okay, eventually. I am in absolute constant worry that I will relapse. I am trying (again) to have another child and since I had a C-section the first time, I am worried about antibiotic use with another. So, these boards still help me! But, right now, I am enjoying food, enjoying normal BMs (who knew that could make for such a good day lol!), and enjoying everyday as much as I can while I am C diff free. I think that is all you can do!
You WILL be okay!

Bobbie
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Re: I am okay

Postby Bobbie » Fri May 31, 2013 1:52 pm

You are right. Live each day to its fullest.

Here's hoping for that 2nd baby. I had the same wish many years ago after a miscarriage and a preemie. During my 4th & last pregnancy (high risk) the OB told me "Don't get your hopes up. This isn't a big baby." (Fetal monitoring was its infancy.) Not only did I carry 9 months, but he was heavier at birth than his older brother. Don't give up hope.

Thx. again for posting.

lillychamille
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Re: I am okay

Postby lillychamille » Fri May 31, 2013 4:56 pm

Bobbie,

Thank you! Just goes to show you that with anything, C. diff to babies, doctors, though pretty dang knowledgeable, don't know everything!
You WILL be okay!

beth22
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Re: I am okay

Postby beth22 » Sat Jun 01, 2013 1:01 am

If you ever do need a c section, check to see if antibiotics are mandatory. I recently had parathyroid surgery and I asked not to get antibiotics and they did not give me any. Unless you have fever or some kind of infection, I bet they will do a c section without antibiotics or if it is required, maybe IV Flagyl, since it is a low offender.

Thanks for posting your story. It is really helpful to read about people's progress and gives hope to many. Good luck to you!

getwellsoon
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Re: I am okay

Postby getwellsoon » Sun Jun 02, 2013 6:39 am

I am so glad you found comfort in the site. I was one also who was deathly ill and fighting for my sanity and this site helped me hold on. I am 14 mon.out from meds and still have symptoms but am hanging on. I'm so glad you are trying again for that baby. I will keep you in prayers that everything works out for you and you continue with good health. Thanks for posting and do let us know how you do. Carol
CAROL

lillychamille
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Re: I am okay UPDATE

Postby lillychamille » Sun Jul 21, 2013 9:46 pm

I am 8 weeks pregnant and having lots of GI issues, but no C. diff!!!! Please keep me in your thoughts as I need all the good vibes I can get. I am on progesterone to try to keep my lining healthy enough to support the pregnancy until the placenta takes over and I think it is the cause of my GI upset along with some PI-IBS. I will take it any day over the C. diff. Hoping above hope that this one sticks and I have plenty of issues to discuss with my OBGYN in Feb when I will have to have a C-section!
You WILL be okay!

beth22
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Re: I am okay

Postby beth22 » Mon Jul 22, 2013 12:02 am

Congratulations on the pregnancy. Yes, progesterone can cause GI upset. I can't use estrogen supplement anymore since c diff - had no problem before.

I would ask your obgyn if you can have the c section without antibiotics. I had a parathyroidectomy without any. If they have to use some, perhaps they can use Flagyl. Let us know how everything goes.

amyc
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Re: I am okay

Postby amyc » Thu Jul 25, 2013 4:55 pm

Ugh progesterone. Makes me mean and nasty, and probably could cause GI distress as well. Best of luck to you and hope you can get off the progesterone before the end of the pregnancy.

lillychamille
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Re: I am okay -UPDATE

Postby lillychamille » Sat May 10, 2014 1:46 am

Well, I had that baby! She was born a month early due to low fluid levels. I was anemic the whole pregnancy. I also had diarrhea the whole pregnancy. I had her via c-section and she spent 8 days in NICU because of respiratory issues but she is super healthy and 3 months old now :). I did have antibiotics with the C-section but had been taking Florastor faithfully for a month prior in preparation. I also had a tubal ligation so antibiotics were policy.

About a month after she was born I started having normal BMs again and thought this was all over finally! For the last month though I have had diarrhea again. Lots of mucus, but ZERO pain. Colonoscopy was "suggestive" of Crohn's during c diff and doc wanted to do more testing via small bowel follow through. I declined because barium kills me, bad bad cramps. Anyway, I am wondering if this is (a) hormone related due the pregnancy and current breastfeeding, (b) PI-IBS almost 2 years later or (c) a combination of both! I have a gi appt may 21st but I'm guessing it won't go well since they are obsessed with testing but can never get a definitive answer so no treatment!
You WILL be okay!

Bobbie
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Re: I am okay

Postby Bobbie » Sat May 10, 2014 12:30 pm

Congrats on the baby and glad she and you are OK.

I don't know if you have C. diff. again or not. I would ask your doc. for a PCR (very accurate) test. Also, follow up with your GI appointment.

I don't know if hormones could be related to your symptoms. There is a little info. about it in CDI - Hormones.

Let us know how you are doing.

beth22
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Re: I am okay

Postby beth22 » Sun May 11, 2014 1:44 am

Fluctuating hormone levels have been implicated in IBS, so that is a possibility. I agree with Bobbie. Go to your GI apt and ask for a PCR test as well as the regular stool tests for other pathogens, just in case you picked up some other bacteria. Hopefully, by the time you go, your symptoms will have subsided. Congratulations on the baby!


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