1 year post FMT with cdiff symptoms again

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Zapper
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1 year post FMT with cdiff symptoms again

Postby Zapper » Wed May 02, 2018 7:43 am

Hi everyone
I thought I would never post again on this board but I’m really not doing well. I am 1 year post FMT but afraid I have cdiff again. I have not taken any abx.

I had extreme abdominal and flank pain and ended up in ER. Ultrasound and CT showed an enlarged spleen and colitis/diverticulitis. The doc said my only treatment option is antibiotics (no thank you) but he was very very concerned it was my cdiff back again. I have all my old symptoms back... fever.. high heart rate.. uncontrollable mucus D. I submitted a sample and should hear back within 12 hours. I got back home and the diarrhea got worse (3 bags IV fluids). I am feeling defeated. I have had a few stomach bugs and PI-IBS flares and this is nothing like that. I even had to bust out my old depends which brought back some really strong emotions I wasn’t able to handle earlier.

I guess I am looking for reassurance that there is NO way this could be cdiff again. And advise if any of you had colitis without treatment and did OK. Thanks all & God bless.

Lid49
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Re: 1 year post FMT with cdiff symptoms again

Postby Lid49 » Wed May 02, 2018 8:20 am

Hi
It was diverticulitis or colitis?
I remember reading one person having cdiff reocurance at one year after fmt.
If it is diverticulitis you will have to treat.
Hanging in there.
Lidia.

Zapper
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Re: 1 year post FMT with cdiff symptoms again

Postby Zapper » Wed May 02, 2018 8:22 am

The labs say both just as this “colitis/diverticulitis”. Can you really relapse after one year? It wouldn’t be a reinfection cause I haven’t taken abx.

MKW
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Re: 1 year post FMT with cdiff symptoms again

Postby MKW » Wed May 02, 2018 8:57 am

Hi Zapper, I’m so sorry to hear this is happening to you. I think about you sometimes, because you were “cured” by an FMT around the same time as me, but continued on with IBS and food intolerances that it seemed you never had a clear explanation for other than c Diff “recovery”. So did I, but had mixed ibs c and d. After multiple GI specialist appointments and varying expensive blood and stool tests over months, dropping 7 lbs in two weeks down to 102 over the holidays I finally asked for a SIBO breath test, and it was positive. (I also now show I have candidiasis from a stool test my new integrative doc has done. )Since then I’ve been trying to get treatment in the alternative medicine realm which has thus far been unsuccessful. But.... the point of all this is I feel my overall health and GI symptoms were just brushed off by my practitioners as after effects of c Diff, I was just told to take Levsin and Imodium for symptoms, and as the months passed I got worse probably sustaining damage to my small intestine and my current doc says I have leaky gut. So, it is definitely possible that you do NOT have active c Diff again (will pray for you that you do not), but that you have just progressed to severe GI dysfunction and inflammation due to your symptoms not being properly addressed all this time.
Please keep us posted on how you are!

Zapper
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Re: 1 year post FMT with cdiff symptoms again

Postby Zapper » Wed May 02, 2018 10:30 am

MKW, I don’t even know where to start.
I have been on Imodium and levsin and been OK except for post infectious IBS which is crazy.
I feel so discouraged and afraid my depression has come back full force.

Lid49
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Re: 1 year post FMT with cdiff symptoms again

Postby Lid49 » Wed May 02, 2018 10:37 am

Zapper you're test for cdiff by now is available, I know my Dr told me that no pcr will be done after treatment and repeted infection, they do toxic antigen test for cdiff. To avoid false positive.
But it may be different, it is so confusing.
Lidia.

Zapper
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Re: 1 year post FMT with cdiff symptoms again

Postby Zapper » Thu May 03, 2018 4:13 pm

Update. Stool was negative for cdiff. Thank Hod.
Dx is colitis and enlarged spleen. ER doc ordered abx despite me saying no. My doc isn’t available for follow up for another 2 weeks. Wondering if any of you were able to treat colitis without abx?

Lid49
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Re: 1 year post FMT with cdiff symptoms again

Postby Lid49 » Thu May 03, 2018 4:19 pm

Zapper there are many type of colitis you need to find wath type of colitis you have, if it is infectious colitis I think they need to know wath bacteria or pathogen. Also there are other colitis .. colagenos, ischemic.... If the Dr in Er order blood work they are able to tell you more regarding infectious versus non infectious.
Lidia.

MKW
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Re: 1 year post FMT with cdiff symptoms again

Postby MKW » Thu May 03, 2018 5:31 pm

Hi, what were you prescribed? Did it turn out you have Diverticulitis or just a diagnosis of colitis? I guess having an enlarged spleen does indicate bacterial cause.

Zapper
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Re: 1 year post FMT with cdiff symptoms again

Postby Zapper » Fri May 04, 2018 8:33 am

I don’t know what type of abx. Currently I ate my first solid meal in 3 days (chicken and rice) and back having diarrhea. It’s so similar to cdiff it’s crazy but confirmed it’s not cdiff.
I am at a loss.
I can’t take anymore time off work or I’ll lose my job. And wearing adult diapers to work is getting really really old.

MKW
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Re: 1 year post FMT with cdiff symptoms again

Postby MKW » Fri May 04, 2018 9:07 am

I can relate on the job thing. I know how hard that is. When I was going through my six months of c Diff my GI doctor who I over time realized was in competent refused to sign fmla paperwork for me. He said I had an infection not a disease so would not fill out the paperwork with any duration or frequency of absence info, in order for it to get approved.
I just got my new integrative medicine doc to fill it out for me to miss one day a month.
Just getting that approved felt like a miracle.
I hope that your symptoms somehow resolve without antibiotic treatment. It doesn’t seem you’ve been provided with a thorough diagnosis or treatment plan.
I bought a nestle drink called Pronourish I am trying. It’s supposed to be like Ensure but for people with digestive problems. You might want to check it out.

Lid49
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Re: 1 year post FMT with cdiff symptoms again

Postby Lid49 » Fri May 04, 2018 1:55 pm

Zapper, you need to call or go back to the ER. To ask more questions. If the colitis is infectious and you do not treat it will creat complications. You need treatment. I do not think waiting 2 weeks for your Gi it will be a good idea. It is an adv. You are the one how decide . Please let us know how you are.
Lidia.

Zapper
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Posts: 255
Joined: Thu Feb 11, 2016 10:28 am

Re: 1 year post FMT with cdiff symptoms again

Postby Zapper » Tue May 15, 2018 2:57 pm

OK everyone, it has been crazy being sick AND having a toddler but I wanted to update.
My GI did a full stool panel again- positive for Norwalk virus (again) and cdiff. Now my diarrhea has gotten much better so the GI does not want to treat and from what I understand this is a good thing. The only way to confirm any colitis issue is with a scope since I already did the xray, ultrasound, and CT. But he also highly advised against it cause the diarrhea is getting better and my last colon prep caused my 1st relapse.

I am just drained. Post cdiff my immunity tanked and my IG deficiencies are out of control. No matter what I do or if I get weekly infusions I still contract ALL infection I come into contact with. And basically, all I heard once cdiff is positive in my stool again is that if I ever do get very ill and need abx cdiff reinfection is a sure bet.

SIGH.

I am really trying my best at this point to not focus on "recovery" anymore and just try to make each day worth it. I had my 30th birthday last weekend and went to a local casino and had fun. I had to wear a an adult diaper the entire time but I am tired of missing everything cause I am sick. I've spent the last 3 years trying to do everything "right" and still not getting anywhere. Now it is time to try to have some fun... and pray no more NORO and no more hospitals!!!

Lid49
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Re: 1 year post FMT with cdiff symptoms again

Postby Lid49 » Tue May 15, 2018 6:34 pm

I hope not cdiff, did I read correct?
Only virus hopefully you will get better.
I was thinking of you.
Lidia.

Zapper
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Posts: 255
Joined: Thu Feb 11, 2016 10:28 am

Re: 1 year post FMT with cdiff symptoms again

Postby Zapper » Wed May 16, 2018 12:14 am

Yes I was positive cdiff on the PCR test but the GI doesn’t want to treat as the diarrhea is gone. He thinks the D was from Noro and I just got too dehydrated and needed fluids.

I think it’s smart to not treat the cdiff as the D is not happening. I’ve read quite a few times of people testing potisive without active symptoms.
Last edited by Zapper on Tue May 22, 2018 12:59 pm, edited 1 time in total.


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