New here but not to c diff - my story & I have some questions!

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KatieW
New User
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Joined: Fri Sep 28, 2018 10:25 pm

New here but not to c diff - my story & I have some questions!

Postby KatieW » Sun Sep 30, 2018 5:41 pm

Okay so my journey started with swollen lymph nodes and interstitial cystitis.. I was put on NSAIDS for the cystitis and then a week later, amoxicillin twice a day for the lymph nodes. A few days after the antibiotics, the loose BM started with mucus and some blood occasionally.

I had to push my doctor for answers, in which he referred me to a GI doctor. He opted for colonoscopy, and I knew no better since I'm a teacher and not a doctor. Came back fine, just inflammation and diagnosed with IBS. BMs were still bad, bad acid reflux, pain, etc. Also lost 15 lbs at this point due to not being able to eat a lot, and the loose BMs all day.

Went back to GP who said you have IBS and anxiety. Left that GP and got a new one who immediately did a stool culture. She called me that same afternoon and immediately got a vanco prescription for me and broke the news of c diff a/b positive. MIND YOU, this was 3 whole months later. I suffered for 3 months with this and no one, not even the specialist, tested me!

So, to the present.. I tested negative after my vanco was over with and that was that. Ever since, my BMs have never gone back to normal. Maybe once or twice I have had a normal formed BM since. Sometimes they're formed, but still not what they were. Some days they are loose, but never watery. Is this normal or should I get tested again? I've cut out greasy and spicy foods so never any pain now. I've noticed I developed a milk intolerance as well.

New GI consult and this guy was great! Concerned and apologetic that no one helped me sooner. He ran tests for inflammation to rule out chrons and colitis, as well as tests for celiac. Everything came back ok except slightly elevated stool calprotectin. It was in the borderline average (62.6 MCG/g), but he said it was ok since it's not in the abnormal range at 120+.

My symptoms have been very broad since this all started: looser BMs that happens first thing in the AM (I can't wait, it's like I have to go as soon as I get up and move), joint pains, muscle pains that last a day and disappear, indigestion, little red dots all over (not petechiae as platelets have always been within range), peeling gums, and weight loss.

I guess my questions are: is it normal to still have abnormal BMs 4 months after a negative stool culture? Is it ridiculous to ask for a repeat culture? Did anyone share these symptoms too?

I have developed huge health anxiety since this all started and I'd just like to return to normal one day!

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

Re: New here but not to c diff - my story & I have some questions!

Postby NanciT » Sun Sep 30, 2018 9:10 pm

Hello Katie and Welcome to the site, please read the first thread for all new posters

What we often say on the site post CDIFF can become a "new normal" because often Bm's will be all over the place for some time. It can be weeks, months, or longer. Everyone is different, if things persist I recommend to do what you did...see a new GI and get a work up. Most have Post IBS. There are medicatins that can help, I was on hycosamine which did help.
My experience has been the same, months of this even sticking to a bland diet. I add new foods slowly and then sometimes back to bland. I have also continued with ONE VSL#3 per day which I feel helps the IBS.

Time is what is necessary, know that you are not alone!!

Hope you feel better soon

NanciT

NanciT

KatieW
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Posts: 16
Joined: Fri Sep 28, 2018 10:25 pm

Re: New here but not to c diff - my story & I have some questions!

Postby KatieW » Sun Sep 30, 2018 9:31 pm

Thank you, NanciT! I appreciate you replying to my post. I'll read the thread next :)

My new GI did say that if I can't put on more weight, he wants to see me back in a month to get a new plan together. I might call tomorrow morning to see if he recommends something to help the IBS. I have a feeling that might be the case because I noticed that sometimes when I get worked up, it gets worse. He recommended I try Citrucell to see if it helps to bulk. It's only been a week so far so I'm trying to give it more time.

It's comforting having this forum now. Just knowing I can vent, get opinions, and just have discussions with those that get it.

Its such a crazy adjustment because I was a 2 cups of coffee every morning, and hot sauce on EVERYTHING before haha. I was also happy to see that many on here had children after suffering through c diff. My husband and I want one more so I didn't want this to mess that all up.

Whyme111
Regular User
Posts: 58
Joined: Mon Jun 18, 2018 12:32 pm

Re: New here but not to c diff - my story & I have some questions!

Postby Whyme111 » Mon Oct 01, 2018 1:31 am

Hi Katie,
I'm 7 weeks out from my Vanco taper/pulse treatment and I, like you, have increased health anxiety. I'm trying to adjust to this new normal which is super hard. I continue to have symptoms of low energy at times, some crampiness, depending on what I eat and bm's that are way different (compared to pre cdiff). I get d at times but I believe it's due to my system rejecting some of the foods that I choose to eat. I haven't tested again and really don't want to at this point because I don't want anymore treatment unless it's absolutely necessary. I'm continuing my Vsl 3 two times a day plus 1 florastor. I'm also taking Oregamax. I have got to say that the Oregamax has been wonderful for me. When I feel symptoms start, I take 2 in the morning and then 2 at night and the symptoms decrease tremendously. Not all of the same remedies work for everyone but if you can, look it up and maybe consider it.

sophie
Regular Contributor
Posts: 171
Joined: Sat Mar 18, 2017 10:01 am

Re: New here but not to c diff - my story & I have some questions!

Postby sophie » Mon Oct 01, 2018 2:50 pm

Hi Katie,
I think the symptoms you currently have are not C-Diff. If you had it, you would be having that awful watery output that happens throughout the day. I think you need to work with your new GI to figure out what changes have happened to you. Be careful about not testing unless you truly have the symptoms of C-Diff. You may very well be, like myself, who does not have C-Diff but tests positive because I am a carrier. You may be in the same situation and that may never change. That is not a bad thing, it means you have immunity within you against C-DIff. Good look going forward, it's a process, but before you know it you may be back to what use to be normal or you may be accustomed to your new normal.

AllisS
Long Time Contributor
Posts: 1889
Joined: Fri Sep 07, 2012 10:52 pm

Re: New here but not to c diff - my story & I have some questions!

Postby AllisS » Tue Oct 02, 2018 12:41 am

Sophie, I don't think there's yet any evidence as to what might confer immunity from C. diff; it's only supposition at this point.
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

KatieW
New User
Posts: 16
Joined: Fri Sep 28, 2018 10:25 pm

Re: New here but not to c diff - my story & I have some questions!

Postby KatieW » Fri Oct 05, 2018 10:59 am

Whyme,
I'll definitely look into that! I've tried a few different things so far to no avail :( it's so frustrating being 4 months out and still not gaining weight or normal BMs.

Sophie,
These symptoms probably aren't now from it, you're right. I did have the loose bowels and constant going to the bathroom when it all started, which is when I tested positive. Luckily I tested negative after the vanco! :) I don't think I'm a carrier since I did have it and the symptoms. I think the other symptoms are my body's reaction to being sick for so long. I hope you're right about either going back to normal or adjusting to my new normal. It would feel nice to feel okay soon.

Thanks all for replying!! I appreciate the support and opinions.


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