Had FMT - still sick. Anyone else?

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.)
cshell
New User
Posts: 7
Joined: Thu Jan 07, 2016 2:53 am

Had FMT - still sick. Anyone else?

Postby cshell » Thu Jan 07, 2016 3:03 am

Hi all, After 2 consecutive rounds of Cdiff and treatment with Vanco, then Dificid, I was still having cramps and the runs - though much better than when I was at my worst and going every 5 minutes. Dr. did an FMT via colonoscopy a week ago - said FMT always cures Cdiff. But I've still got the runs, and it's getting worse now. Nurse says it must just be IBS that got aggravated by the colonoscopy/prep (which definitely does tend to happen to me after colonoscopies and flex sigs.) But I'm getting a bit nervous. Has this happened to anyone else? How long did it take you to get back to somewhere near normal?

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: Had FMT - still sick. Anyone else?

Postby georgina » Thu Jan 07, 2016 7:40 am

Hi Cshell
I am a 6 weeks post FMT via naso-gastric tube and still feeling miserable , no pain or high frequency thank God but i am still waking up in the morning with the urge and nothing has firmed up yet.It takes time for that good bacteria that is reseeded in your gut to implant and grow.Have patience , eat good food to feed your new bacteria (food high in fiber) stay hydrated and SLOWLY you will get back to normal.It takes a lot of time unfortunately,but there is no choice but to wait.I'll pray that all goes well and your FMT will be a success!

Lisa33
Long Time Contributor
Posts: 2430
Joined: Mon Sep 29, 2014 1:45 pm

Re: Had FMT - still sick. Anyone else?

Postby Lisa33 » Thu Jan 07, 2016 11:34 am

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.
“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.
Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.
For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.
This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.
No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it is.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

Hi cshell - Welcome to the site. Georgina is right. Try not to worry, as many have experienced D after an FMT. If you search through posts on this site on FMTs, you will see that D seems to be the norm for many. I was lucky enough to not get to an FMT, so I can't share a personal experience, but many on here can and I'm sure will reply.

FMT's via colonoscopy do have very high success rates, so stay positive. Feel better soon.
Lisa

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Had FMT - still sick. Anyone else?

Postby roy » Thu Jan 07, 2016 11:50 am

How long before the FMT were your last c.diff meds?

cshell
New User
Posts: 7
Joined: Thu Jan 07, 2016 2:53 am

Re: Had FMT - still sick. Anyone else?

Postby cshell » Fri Jan 08, 2016 10:35 pm

Thanks for the info, folks. I'd read accounts about people seeming to be back to normal within a few days after FMT, so was getting quite nervous! Mornings are particularly difficult in terms of frequency, and I'm sometimes concerned I won't make it to work. I'm still concerned about that, but, good to know this isn't necessarily a bad sign.

Roy - I think it was 2 weeks between the end of the Dificid and the FMT.

jds0870
Regular Contributor
Posts: 136
Joined: Tue May 12, 2015 8:43 pm

Re: Had FMT - still sick. Anyone else?

Postby jds0870 » Fri Jan 08, 2016 11:31 pm

Hey Cshell. I am one go had two FMTs by enema one on 12/16 and 12/23. I had d for a week after and it was watery d and still do on and off...I definitely did not feel better right away. Still bloated and gurgly stomach. I also have what I assume are food intolerances. My Gma had a FMT via colonoscopy in August and she had d for a little over a month after. Even now sometimes she has bouts of d. I think some people just take longer to heal. I also freaked cause I read a lot of stories with instant relief. Not the case for me. I hope you start seeing improvement and get to feeling better. I just wanted to share with you so you know that there are some out there who take a while to heal. Stay strong! Jeri

cshell
New User
Posts: 7
Joined: Thu Jan 07, 2016 2:53 am

Re: Had FMT - still sick. Anyone else?

Postby cshell » Sat Jan 09, 2016 12:24 am

Thanks Jeri! Some symptoms seem to have improved in the past day and a half while others definitely haven't. So I'm not sure if it's one of these "fake improvements" that I've experienced temporarily now and then over the past couple months or the real deal. I'll keep my fingers and toes crossed!

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Had FMT - still sick. Anyone else?

Postby Bobbie » Sat Jan 09, 2016 1:27 am

I,too, had a FMT which took a long time to "take." Some docs recommend fiber as it is supposed to help grow the new bacteria.

Halng in there. It should eventually work. See the info in CDI - c diff tests about retesting. Best to wait awhile.Also see CDI - IBS and CDI- three day rule.

cshell
New User
Posts: 7
Joined: Thu Jan 07, 2016 2:53 am

Re: Had FMT - still sick. Anyone else?

Postby cshell » Sat Jan 09, 2016 2:19 am

Thanks Bobbie! Yes, I've been experimenting with slowly adding fiber, just in hopes of helping with urgency, etc. Didn't know about the theory about helping good bacteria grow - interesting.. Yeah, doc says to wait 6 weeks before retesting, as the c-diff spores would still be there and cause a positive test. So they said since the FMT is 90% effective, I should wait it out and treat it as IBS, unless it gets really really bad.

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

Re: Had FMT - still sick. Anyone else?

Postby beth22 » Sat Jan 09, 2016 3:13 am

After my FMT, I was no longer able to eat fruits and vegetables and dairy became a much bigger problem. I don't know if it was the FMT actually or just having been on vanco for so long before the FMT. When I was on vanco, I could eat more, but coming off, the food intolerances were bad. Turned out I had SIBO. Give it some time. See what foods aggravate the situation and avoid them for a while.

cshell
New User
Posts: 7
Joined: Thu Jan 07, 2016 2:53 am

Re: Had FMT - still sick. Anyone else?

Postby cshell » Sat Jan 09, 2016 4:00 pm

Yeah, I was definitely better toward the end of the Dificid than I am now. After the Dificid somewhat of a rebound, then had the FMT. Since having the FMT I don't have that dull cramping anymore, but the restroom symptoms haven't really improved - they have just changed somewhat. It's nowhere near as bad as when the c-diff was at its worst. But it's bad enough that it can be difficult to get out of the house on schedule in the morning, sometimes I have to go to the bathroom in the middle of the night, and I have to keep taking anti-spasmodic medication to get through the day without embarrassment. I did also take 1-1/2 rounds of Vanco before the Dificid (I was having a reaction to the Vanco so they switched me to Dificid midway through the second round.)

Since I've had ulcerative colitis for many years I generally avoid dairy and am pretty careful about what fruits I eat, but thanks for bringing that up. I did try a fruit cup yesterday, and today my symptoms are worse than they've been for the past couple of days - so it could be that I'm just even more sensitive to these foods than usual.

skizamii
Contributor
Posts: 91
Joined: Tue Jul 07, 2015 12:18 pm

Re: Had FMT - still sick. Anyone else?

Postby skizamii » Tue Feb 02, 2016 11:06 am

I had the same thing, while on Vanco I could eat more than after stopping and having my FMT. I don't understand why we are all having this...

I'm 3 weeks out from a top down/bottom up FMT followed by FMT capsules and having lots of issues. They put me on VSL#3 right after the FMT as well. Body aches, chills, fatigue, cramps, abdominal burning/pain, intestines are churning; in general it feels like I have the flu 24/7 but no D. Also having significant joint pain/stiffness. The cycle of lots of BM's in the morning also changed, things have been spread out more despite the flu like symptoms. I'm only taking Enteragam for GI stuff. I seem to have severe food intolerance to everything after this FMT even though I'm on low FODMAP Diet, so I switched to only eating whole foods. The crazy thing is that my legs started giving out last Monday...felt like I had run a marathon, they were warm, aching, and kept buckling under me. I did some research and wondered about lactic acidosis, got tested, and my lactic acid was elevated (not significantly, but up there). My PCP told me to stop the VSL#3, but the issues persist.

Based on all you are saying I'm not thinking c. diff is back, but SIBO is a possibility? Why on earth would I feel like I've got the flu 24/7, still the FMT seeding and fighting off the c. diff? SIBO? Life is not easy walking through the day feeling like you have the flu.

Lisa33
Long Time Contributor
Posts: 2430
Joined: Mon Sep 29, 2014 1:45 pm

Re: Had FMT - still sick. Anyone else?

Postby Lisa33 » Tue Feb 02, 2016 9:29 pm

Skizamii - I have not been through even a quarter of what you have been through, but I experienced flu-like symptoms for quite some time after fighting c-diff for 3 months. I had terrible fatigue, achiness, foginess, and just felt completely rundown. Your body has been through a lot of trauma, and has taken a beating. I went to an internal medicine doctor who also believed in alternative medicine. She ran a complete blood work, and checked for any vitamin deficiencies. A lot of us have had deficiencies after this infection, especially in Vitamin B-12 an D. These deficiencies can lead to flu-like symptoms as well. I was only deficient in Vitamin D, so I added that as a supplement. My doctor also suggested that I eat gluten free for several weeks to see if that helped with my digestion and with boosting my immune system. After 2-3 weeks, I really felt a significant improvement, especially in my energy level and achy body. I continued to eat gluten free for quite a few months after. I still try to stick to a gluten free diet during the week. Everybody is different, but I felt that this is what got me out of that flu-like state. My doctor also recommended a natural supplement called Solgar-7. I actually never tried it as my gluten free diet and vitamin supplements were working. I don't know if you want to look into it with your doctor to see if it's something worth pursuing. It's supposed to help with joint pain. I was so sick of putting meds in my body, that I wanted to feel better going the natural route. Everybody is different, but this is what worked for me.

I hope you start to see improvement soon, and at the very least, it is awesome that the D is gone. Praying that c-diff is in the past once and for all.

Lisa

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

Re: Had FMT - still sick. Anyone else?

Postby beth22 » Tue Feb 02, 2016 10:22 pm

SIBO is a possibility, especially after the top down FMT. When I did that, my breath test went off the charts! Eating gluten-free will help SIBO too, but you probably should be tested for it to see if that is what it is. It also gives joint and muscle pains/fibromyalgia. There is also a blood test for IBS called IBSchek. I tested positive for the toxins for that as well. It does take time, but hopefully you will see improvement as time goes by. I did not go gluten-free, but I do only take a small amount of the VSL#3 because it is not recommended to take probiotics for SIBO. However, if I take a small amount, it did seem to help the post c diff symptoms some.

cshell
New User
Posts: 7
Joined: Thu Jan 07, 2016 2:53 am

Re: Had FMT - still sick. Anyone else?

Postby cshell » Wed Feb 03, 2016 1:09 am

I had the flu-like symptoms when my C-diff was active, but I assumed that was the infection and dehydration at work. My post FMT symptoms have all been the GI ones.

BTW, a followup since I'm the OP: Things remained steadily awful for 4 weeks, at which point I noticed a sudden improvement. Yay! I'm at 5 or 6 weeks now and things occasionally backslide, but have not been as bad as they were. I'm still not back to normal, but with Imodium, etc., I'm generally able to function without have to make constant restroom trips. I'm not quite sure whether the improvement was the FMT finally kicking in, or my colon finally calming down from the colonoscopy+prep, or whether I finally eliminated one or more dietary triggers that were major offenders -- or a combination of things. As some of you said, it seems that my colon is just more sensitive to things now, even when it feels OK. I've noticed that foods that might have given me a minor problem in the past seem to give me more dramatic problems now. And I suspect some foods that didn't give me noticeable problems before are causing some trouble now. On the other hand, I've tried some things that were well beyond the BRAT diet and somehow everything was fine. Every meal's a new science experiment in the mysterious world of post-cdiff-FMT colon. :-)


Return to “Questions about Clostridium difficile”



Who is online

Users browsing this forum: Google [Bot] and 32 guests