Please help me so lost and confused

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Lostgirl
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Posts: 2
Joined: Thu Dec 06, 2018 3:43 am

Please help me so lost and confused

Postby Lostgirl » Thu Dec 06, 2018 4:45 am

Hello I would like to start off by saying I love this group so much. I’ve been reading this forum for a long time since April 2018 and you guys have given me so much knowledge that I’m so thankful for.
But I’m finally going to post my story. So Im a 27 year old female mother of two ages 3 and 17months old. I got my first positive PCR at the end of March 2018 right after treating bacterial vagnosis with Flagyl 2x. I was on other antibiotics in the past also, but didn’t seem to really have an issue back then. The things I’ve treated in the past are appendicitis h.pylori and removed my gallbladder. But even before I took the Flagyl for the bacterial vagnosis I started noticing symptoms but never knew what Cdiff really was. My symptoms were about 1 or 2 urgent bowel movements with some mucus and a trapped gas feeling in my groin area and acid reflux. So I called my gi and told him what’s been going on also that I also noticed a little weight loss. so he sent me for a X-ray and stool sample for all kinds of things. first the X-ray came back and showed that I was backed up, so i was instructed to do a 2 day liquid diet to clear my colon. 2 days later I get a call saying I was positive for Cdiff by PCR at this time they didn’t do EIA so I only had a positive PCR so we skipped Flagyl because that’s what I was taking before I got this and we did a 2 week Vanco course. I felt scared and was crying everyday bleached everything like you won’t believe. During the 2 weeks I started to have normal formed bowel movements. To be sure I did a colonoscopy 1 month after treatment and was negative for Cdiff great! moved on with my life was happy and all was well I had normal formed bowel movements once a day never felt better. About 3 1/2 months later I took my kids to the park and had a slice of pizza, Instantly i felt different my stomach turned. Then I went to go on the swings with my kids and had to run to the bathroom with cramps and urgency. And ever since then which was August 28 2018 I have been filled with confusion and anxiety. I retested by PCR and was positive but negative by EIA so I had a sigmoidoscopy on 9/19/18 and was negative for Cdiff colitis. but I’m still having symptoms which are different everyday soft stools with some mucus, urgency 1-2 times a day sometimes 3-4 and now cramps in my lower abdomen and lower back I retested again on 11/29/18 and still positive by PCR negative Eia. I’ve seen GI’s Id specialists some tell me to treat and some tell me don’t. I’m so confused and lost and don’t know what to do. I’m so sorry for the long story and apologize if it’s confusing I’ve never posted something this long before and normally I’m a very private person but I would really appreciate all your inputs. Oh I can’t believe I forgot another important factor after all my knowledge from reading on here about Cdiff I started to catch on to my son who is now 17 months old and to his stool habits long story short my son is Cdiff positive but the id specialist advised to not treat and that it’s very normal for kids to be positive and he does not think I caught this from my son he says for some reason babies do not transfer it as easy as adults because if they did then lots of parents would have Cdiff so I took his Advise and he got better with no treatment. I might have forgotten a few things I’m sorry if it’s all confusing again this is my first time writing out my story. Thank you all, especially Roy for all the knowledge you post on here.

AllisS
Long Time Contributor
Posts: 1652
Joined: Fri Sep 07, 2012 10:52 pm

Re: Please help me so lost and confused

Postby AllisS » Thu Dec 06, 2018 10:19 am

Hi Lostgirl, welcome to the site. Please read the thread for all new posters, first entry on intro page, when you have a chance.

The symptoms that you describe don't sound typical of C. diff, which is characterized by at least three days of profuse, watery diarrhea, three or more times/day. I think gallbladder removal sometimes can cause food intolerances. A slice of pizza (or any other food) might trigger indigestion but not C. diff. A couple of your symptoms (trapped-gas feeling, lower-back pain) could conceivably be due to a kidney stone; have any of the doctors checked for that?

I'm puzzled as to why your GI is performing colonoscopy and sigmoidoscopy to diagnose/rule out C. diff. Also, C. diff shouldn't be treated solely on the basis of positive lab-test results but rather on the basis of symptoms.

I understand why you'd feel confused after seeing various specialists and getting conflicting advice. Have you seen a specialist whose expertise is C. diff? I'd ask for a referral to such a doctor to see if that might help in sorting things out.

Lastly, you mention that you'd "bleached everything" at some point when you thought you had C. diff. This is totally unnecessary as well as futile. The key to C. diff prevention is thorough hand-washing with soap and water, especially after bathroom use and before food preparation.

I hope you're able to get some answers medically and that you feel better soon.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Musings
Regular Contributor
Posts: 245
Joined: Tue Nov 01, 2016 8:38 am

Re: Please help me so lost and confused

Postby Musings » Thu Dec 06, 2018 3:45 pm

I would agree that your current symptoms do not sound like c.diff and could be related to your gallbladder removal and/or IBS. Also, easier said than done (I know from experience!) but stress/anxiety can also affect your bowel movements so that could be a factor here as well so trying to lower that might have a positive benefit.

Your doctor is correct on your son, most babies carry c.diff but it does not cause symptoms so is recommended not to treat.

Am also curious why your doctor keeps doing colonoscopies, etc. They can wipe out the good bacteria, which is a critical part of our digestion and processing, and might be setting you back in recovery.

Lostgirl
Brand New Poster
Posts: 2
Joined: Thu Dec 06, 2018 3:43 am

Re: Please help me so lost and confused

Postby Lostgirl » Sat Dec 08, 2018 3:11 am

I’m so sorry I’m not sure how to reply to each of you I hope I’m doing this right? Thank you guys for replying so he did the first colonoscopy after Cdiff because I was having rectal bleeding and we did the colonoscopy and found a polyp. And the sigmoidoscopy was to see if I had Cdiff colitis because I had a positive PCR and still do unfortunately. I agree that maybe my symptoms could be due to something else but I’ve had my gallbladder out for 3 years why now is my body changing? And after I took the Vanco for about 3 and half months I had formed stools until one day my body just changed it’s just the weirdest thing to me that no doctor has yet been able to explain. And I’m on the Cleveland area and I’ve seen a dr. Who worked for the cdc in Atlanta he recommended I do a Vanco taper and said it was up to me I denied it. 2nd id specialist said don’t take anything, 3rd Id specialist said eat healthy or do fmt and lastly the gi who agreed to do the fmt told me to hold on a bit a eat Healthy and see what happens because he only wants to do the fmt once and wants to reserve it for the future. I’m just so confused and scared because I keep thinking this will never go away and I’m going to end up giving it my husband since I’m colonized. How can I get rid of the colonization? I know I wasn’t Always positive because 2 years ago before I knew what Cdiff was I was tested and it was negative I had a virus that made me sick for 2 weeks at the time. I’m sorry for the long post I’m just a mom trying to look for comfort and awnsers so I can move past this and take care of my precious babies. I’m sorry if I’m breaking any rules I’m still trying to get the hang of this amazing group. I’ve told every dr. I seen about this group and how informative and smart you all are. Thank you to the creator for this platform.

Musings
Regular Contributor
Posts: 245
Joined: Tue Nov 01, 2016 8:38 am

Re: Please help me so lost and confused

Postby Musings » Wed Dec 12, 2018 12:35 pm

Do you have the results from the PCR test? Often times, a "positive" is a positive for the antigen only which means the bacteria is present but not high enough to be generating detectable toxins which means you are currently a carrier but not actively sick.

Here's a good breakdown -

"If tests for C. difficile and C. difficile toxin are positive, it is likely that the person's diarrhea and related symptoms are due to the presence of toxin-producing C. difficile.

A positive result for C. difficile bacteria or C. difficile antigen but a negative C. difficile toxin result means that the bacteria are present in the digestive tract but are not producing a detectable level of toxin."

From this site - https://labtestsonline.org/tests/clostr ... in-testing

From my understanding, some people are always carriers while others will shed enough of the bacteria to not even detect the antigen which is what happened in my case around 2 years after my infection when I got tested after a particularly nasty stomach bug.

It can take a long time to return to "normal" after c.diff, and it's treatment, a lot of people develop a new normal. Stick to a bland diet, slowly introduce food, and try to keep stress levels down and hopefully your body will begin to self-regulate.


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