1 Month Post FMT and Worried

If you have had or are considering an FMT please share your experiences here.
lex20
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Joined: Fri Jul 12, 2019 2:34 pm

1 Month Post FMT and Worried

Postby lex20 » Fri Jul 12, 2019 3:05 pm

Hi everyone, I am new to this site and just wanted to post my story. I am a 20 yr female and I was first diagnosed with CDIff in January of 2019. Before all this, I was always a healthy individual, never had any serious issues. The most sick I ever got was when I got mono my freshmen year of college. Little did I know my Sophomore year would be worse. Previous to my diagnosis, I had a UTI in September of 2018 and was treated with Cephlexin. In November, I was diagnosed with BV and treated with Flagyl. It helped for a few days and then symptoms returned. I was treated with Flagyl again and the BV still came back. At this point I was sick of being on antibiotics and wanted to try something else. My doctor prescribed me Clindamyacin, warning me that it has caused gastro issues but never informed me about the risk of developing CDiff. I took a 7 day oral course of Clindamycin and was fine until a few weeks later and BV symptoms returned again. This time I went to a different doctor who put me on the Clindamycin cream, as a precaution for gastro issues as well. I was on the cream for 4 days and the 5th day I developed diarrhea. I stopped the medication and called my doctor. They informed me to go into the doctor if the diarrhea persists. (I forgot to mention I am a college student who was 4 hours away from home at this time). The next day I had diarrhea constantly and could not keep any food in my body. I knew I had to go in once I started just having blood and mucus come out of my body. I was tested for CDiff and it came back positive. I was put on Flagyl for 10 days. My symptoms cleared up but then returned 3 days after stopping my meds. I was tested again and it was positive. I was then put on Vanco for 10 days. My symptoms stopped and was doing well for 2 weeks and then, you guessed it, the CDiff symptoms were back. I went to my doctor at home and he tested me. I was put on a higher dose of Vanco and was told to continue it until my test results came back. It took a week and to my surprise it came back negative. I was so relieve and excited, I felt like I was going to get my life back.

25 days later, the symptoms returned. I was tested and it was positive. I was put on Dificid for 10 days and my symptoms cleared up again. I saw a GI specialist closer to my school so I would not have to return home again if something happened. The GI doctor told me to wait it out and if I went 2 months without a recurrence I was most likely in the clear. If it did return he wanted to do an FMT. Fast forward 2 months exactly, I was up at my cabin with my family and boyfriend for memorial weekend (also my 20th birthday weekend), and what did I get...Cdiff symptoms. The same water diarrhea with mucus and blood. I went to an urgent care and was tested and then requested an appoinment at the CDiff clinic at Mayo Clinic in Rochester. I was prescribed Dificid for 10 days again by my urgent care doctor while I waited for my appointment at Mayo.
The appointment day came and my parents and I were amazed by the doctor. Dr. Sahil Khanna was so understanding, informative, helpful and caring. I was scheduled to have the FMT the next day. I was expecting it to be weeks! I had blood tests done and began my prep when I got home. The procedure was done via colonoscopy and they used donor stool from they donor bank. After the procedure I probably held it in for about 2 hours. I started feeling more normal after about a week. However, I have had multiple bad days where I think I am relapsing. I am trying to hold on the hope of it just being IBS. Today was the worst. It has beed one month since the procedure and today I had D 4 times and the last 2 were very watery. I called my doctor and am waiting to hear back as to whether or not they want me to test again. I have not gone for a few hours not but I am still terrified. This whole experience has been terrible and I just want my life back. Thank you to those who take the time to read this. If anyone has any advice feel free to reply.

jG43
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Joined: Thu Dec 13, 2018 11:52 am

Re: 1 Month Post FMT and Worried

Postby jG43 » Fri Jul 12, 2019 11:36 pm

Hi lex20. I had a similar situation. Got c-diff from clindamycin in nov of 2018. Relapsed after flagyl then vanco the vanco taper. I had fmt via colonoscopy 4 months ago. I did have occasional bouts of diarrhea that lasted a day or so. I would eat bland and it would subside. The fmt takes time. I got d about a month out and panicked. If you do not have watery d 3 or more times a day for 3 days it is likely to be recovery and not a relapse. Eat a bland diet and hopefully the d will subside

beth22
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Re: 1 Month Post FMT and Worried

Postby beth22 » Sat Jul 13, 2019 1:18 am

Some people, like me, did require more than one FMT. However, it does take time for your system to improve, especially after all those rounds of meds. If the WD persists, then get re-tested. I also found I could no longer tolerate some foods. Are you eating dairy? I could no longer eat it after c diff and vegetables and fruit were a problem too. Maybe keep a food diary and see if there are foods that seem to make things worse and avoid them for a while.

georgina
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Re: 1 Month Post FMT and Worried

Postby georgina » Sat Jul 13, 2019 2:39 am

FMT is not a magic cure , even if it is successful to clear the infection , IBS will still linger for awhile. After my FMT i had really bad symptoms , every day for 3 weeks , i had to take Imodium to be able to work. Try to have patience ,and eat very bland foods, your gut needs time and a diet to heal. Check CDI -iBS three day rule.

lex20
New User
Posts: 10
Joined: Fri Jul 12, 2019 2:34 pm

Re: 1 Month Post FMT and Worried

Postby lex20 » Sat Jul 13, 2019 11:15 am

Thanks for the advice everyone. I called my doctor and he did order a test so I brought one in this morning. I should find out in the next couple of days. I did not have anymore D yesterday. I did feel like I was going to go again multiple times and it was just gas so I am hoping it is just ibs. I only had D once this morning and it was not quite as watery so I have some hope. There also has been no blood or mucus that I have noticed, which are usually my indicators that it is back. There have been some foods I can't tolerate as much since the FMT and the only thing I can think of that would trigger this is some pretty greasy chicken I ate on Thursday night. Before Thursday my stools were somewhat formed but still loose. I can tolerate a little bit of dairy but I have mostly been sticking to almond milk and yogurt, nothing more.
If the test does come back positive, my doctor's nurse told me he would only do another FMT if I have two recurrences after my first FMT. So I would most likely be treated with Dificid again because it has worked best for me. If that is the case I may ask for the Dificid taper or I may really try and beg for another FMT. However, I trust this doctor because mayo clinic in Rochester is one of the best hospitals in the world. That makes it a little more comforting knowing I am in good hands.

lex20
New User
Posts: 10
Joined: Fri Jul 12, 2019 2:34 pm

Re: 1 Month Post FMT and Worried

Postby lex20 » Sat Jul 13, 2019 4:13 pm

Update!!: My PCR test was negative for toxins A & B! Lets hope it stays that way!!

jG43
Contributor
Posts: 70
Joined: Thu Dec 13, 2018 11:52 am

Re: 1 Month Post FMT and Worried

Postby jG43 » Sat Jul 13, 2019 5:27 pm

Wonderful news. Be careful with your diet. After my fmt there are foods I use to be able to handle and now cannot. And their are foods I could not handle than now I can. Watch excess sugar and fat intake. When I have had d after my fmt I had a lot of luck with baked chicken and potatoes, rice, and other starches to get myself back on track. I also cut way down on caffeine. I wish you continued recovery


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