Ready for FMT?

Please limit your post to questions only. You can ask multiple questions in the post. (One post per person per day about yourself. See exception in General C. diff.Discussion.)
FrankS
Regular User
Posts: 31
Joined: Sat Oct 21, 2017 5:22 pm

Ready for FMT?

Postby FrankS » Sat Nov 11, 2017 11:46 am

Hello. I am a new user, 54 year old male that came down with C Diff in August due to clindamycin. I had multiple trips of D the first couple of weeks but flagyl took that down to one trip and I thought I was over it. However, I was still having abdominal pains and the stool had the odor and texture of C-Diff so I went back and tested positive again. Since then I have taken:
- Flagyl 14 days (the initial onset) started Aug 4
- Vanco 14 days - started Sept 2
- Vanco 28 day taper started Sept 20, yet tested positive again
- colonoscopy Oct 19 to rule out other issues, tested negative (EIA) afterwards
- Dificid (10 days) started Oct 27 and now on the taper part.

My BM is still only once a day but it is watery and has the toxic smell. I have abdominal and rectal pain, have trouble sitting due to rectal pain and walking due to sciatica and irritated hip abductor muscle, probably from adjusting my stride to avoid the upper left abdominal pain. I am not working and find it difficult to do anything. I am restless (get about 4-5 hours of sleep a night), live alone and cannot seem to function well.

I tested negative after my colonoscopy exam but tested positive about a week later. My last test (EIA), done this week, was negative but I have my doubts. I am on the Dificid taper and this might have made a false negative (I told the nurse I was on the taper but she requested me to test anyway). I have an FMT scheduled next week, though a different provider, but am wondering if I should hold off on the FMT and retest a week or so after I have finished my Dificid taper or go ahead and to the FMT. I think the FMT will the best chance.

Thoughts?

Thanks for everyone's contribution on the forum. I have learned alot.

amg
Regular Contributor
Posts: 275
Joined: Sat Oct 01, 2016 3:16 pm

Re: Ready for FMT?

Postby amg » Sat Nov 11, 2017 1:23 pm

Are you being retested so often due to having CONTINUED SYMPTOMS?

Because retesting for a cure is not advised, and being treated for a positive test when you are not having symptoms of active c diff infection is very wrong. Seriously, testing you while ON the taper? Why? Are you responding to the taper? It sound like your treating clinicians are not very familiar with how to treat c diff.

You should only be given a new treatment course if your symptoms are consistent with a true relapse of c diff infection.

If your symptoms are improving and your diarrhea is slowing and becoming less frequent and you are feeling better, then that's good and you shouldn't need further testing or new treatments unless things head truly south again.

EDITED TO ADD: Many people with c diff take a while to return to a more normal bowel pattern. Many are left with intermittent looser stool or a bit more frequent BMs than prior to c diff, or various cramping or abdominal discomfort. The key is distinguishing those symptoms from a true relapse of c diff infection. Only a true relapse needs treatment.

FrankS
Regular User
Posts: 31
Joined: Sat Oct 21, 2017 5:22 pm

Re: Ready for FMT?

Postby FrankS » Sat Nov 11, 2017 1:45 pm

I've retested after each round because I start feeling worse. The main symptom is inflammation and pain. I only have one trip to the bathroom and its been that way since the 1st round of Flagyl. But the other symptoms of C Diff are there and seem to be getting worse, even now on the Dificid taper. I understand it will take awhile to heal afterwards but I would think I would feel better not worse - this has been going on for three months. My GI is not very available. I agree testing on the taper was not a great idea but I was trying to comply with the nurse's request.

amg
Regular Contributor
Posts: 275
Joined: Sat Oct 01, 2016 3:16 pm

Re: Ready for FMT?

Postby amg » Sat Nov 11, 2017 2:22 pm

When you say symptoms of c diff, what specifically are you referring to?

Some people, after having c diff, are left with post-infectious IBS (irritable bowel syndrome). That means certain triggers cause them to have intestinal issues such as cramps, stomach aches, diarrhea, mucous in stool, constipation, gas, bloating etc. Triggers can include various foods (dairy and gluten are two examples), stress, menstrual periods. A lot of folks here have noted that certain foods trigger GI issues during recovery. Just recently, my daughter starting eating more almonds in almond butter sandwiches and some protein type bars. She's almost a year out from several months of relapsing c diff which was cured by a Dificid taper. We were almost convinced she was relapsing because she started having cramping and looser and more frequent stools for days. But we looked at all of her symptoms and she didn't have some of the other things which, for her, indicated c diff relapse (like fever/chills, abdominal puffiness, pale face, and extreme fatigue). We finally figured out it was the almonds. Once she stopped eating almonds, she felt back to normal. (well, her new normal anyway).

So what I'm saying is that it is important to be sure that the symptoms you think are c diff are not actually some sort of IBS symptoms, brought on by your gut being more sensitive after the c diff.

FrankS
Regular User
Posts: 31
Joined: Sat Oct 21, 2017 5:22 pm

Re: Ready for FMT?

Postby FrankS » Sat Nov 11, 2017 3:34 pm

Thanks amg. My biggest issue is inflammation and feel my entire colon is bloated and inflamed - I cannot bend over, I have trouble sitting, wake up with abdominal pain, sciatica probably due to accommodating the inflammation when walking. I usually wake up after a few hours with upper left abdominal pain. It gets worse when I taper or get off antibiotics. That is why I was leaning toward the FMT, given I have had four doses of antibiotics.

I've been eating a bland diet and drinking barley water. I've been taking probiotics (Align) and drinking kefir and eating yogurt. I don't think my issue is food triggered.

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

Re: Ready for FMT?

Postby NanciT » Sun Nov 12, 2017 12:01 am

Hello Franks and Welcome to the site Please read the first thread for all new posters

I was on a similar journey and went through all the medications you have listed over a period of one year. At the time in 2014 the FDA had put restrictions on FMT's and I could only find one physician near by who would do one so I was on a 4 month waiting list. I was on a Dificid taper for 3 months while waiting. When I finally had my appointment the GI who is actually one of the few experts in my area he told me to hold off on the FMT as I was a week away from ending the taper. We were ready to go with the FMT but he wanted to see if the DIficid taper would work. I felt terrible on the taper and also terrible OFF the taper for quite some time. Lots of abdominal pain on my left side, had CT's lab work etc , had a very mild diet and had to wait out the Post IBS. It has taken a very long time for recovery.
Everyone has a different experience but I saw you went the same route on the same medications.
I never tested during this time, I relapsed after 2-3 weeks each time, I also had vomiting along with CDIFF and that is how I knew it was back along with the diarrhea( typically for me only 4x in the am)

I am not sure why they would test you while on medications, as AMG has mentioned most GI's don't test at all. They wait for a relapse and it is actually important to do that as difficult as it is so people are not over treated. These medications can be very harsh on the system as I found out but I had no options, I just could not get rid of it.

I listened to the GI and waited and I am glad I did. Dificid finally took care of it and I have been CDIFF free since 2015. I have had Post IBS and my diet has been difficult , but I attribute that to all the treatment I required.
I would consider another GI opinion, especially if you are testing while on medication.

NanciT

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Ready for FMT?

Postby beth22 » Sun Nov 12, 2017 3:26 am

I never took Dificid in my c difficile journey, as it was not out yet. However, I did vanco tapers, vanco followed by Xifaxan all to no avail. The only thing that helped me was the FMT. However, it was not a magic cure. I still had IBS and developed SIBO afterwards, but I did test negative for the c diff until I took antibiotics later on.


Return to “Questions about Clostridium difficile”



Who is online

Users browsing this forum: No registered users and 17 guests