Preparing for my FMT

If you have had or are considering an FMT please share your experiences here.
hiker1
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Preparing for my FMT

Postby hiker1 » Thu Jul 09, 2015 2:14 pm

Hello all, I've been a lurker on this forum since early February when I first tested positive for C.Diff after taking Amoxicillin for a sinus infection. After 2 weeks of Flagyl, 2 weeks of Vanco, then a 7 week Vanco taper, I now have an FMT via colonoscopy scheduled for July 29th with GI Doc Erica Boettcher with Kaiser Permanente. I'm back on Vanco at the moment to control symptoms until the FMT, but I experience Vanco absorption which makes me mentally out of it, and I get bad tinnitus.

I take Culturelle, the Walgreens version of Florastor (no lactase), and drink Kefir, none of which seems to be helping all that much, but I guess a little bit of help is better than none.

Hopefully this will be the end of it. I have a 3 year old daughter and I haven't had the energy to spend quality time with her in months, our summer is pretty much shot and I'm looking forward to getting back to "normal" again.

Any advice would be appreciated.

Lisa33
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Re: Preparing for my FMT

Postby Lisa33 » Thu Jul 09, 2015 3:49 pm

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 both Dr. Borody's articles. Also see the topics under CDI – particularly ABC Bible, C. diff. Tests and Diagnosis, Antibiotics, Hygiene Tips, and Nutrition.
Doctors lists physicians our posters recommended and contains a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) There is a new forum FMT’s and FE’s. Media Reports contains new information on C. diff.
The majority of patients (approximately 70%) recover with one to two rounds of Flagyl, Vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Almost all 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. You can help by educating your family, friends, neighbors, and co-workers. 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 again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested for the infection first.
The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and CDI – Hygiene Tips.) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and The FMT Foundation.

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. 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 can be.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

Hi Hiker1 - So sorry you have been going through this horrible illness. I have not had an FMT, but many on this site have and will come along with their experiences. However, I can relate going through this illness with a 3 year old. I had c-diff from September to November of 2014, which included one relapse. I was lucky enough to be cured by Vanco. However, I would say that I was ill from Aug-Jan. I was sick most of August with what was probably viral, but was given Cefdinir (generic of Omnicef). Two weeks later after finishing the Cefdinir, I had c-diff. I was negative for c-diff in late November, but the after effects lasted well into January. I still have IBS days, and I'm 8 months out. I felt so guilty as a mother not being able to give my child the attention she deserved. 3 year olds don't understand that Mommy is sick and she just can't do things with you. My husband was very supportive and would take my daughter out a lot on the weekends, which was very helpful. But, I still felt guilty that I was missing out on spending time with her. With this illness, you have to take care of yourself though and get better, so that you can get back to a "normal" life again. The FMT has a very high cure rate, so hopefully this does the trick for you once and for all. It's definitely an illness where patience is necessary as we aren't back to normal overnight once the c-diff is gone. I wish you much luck with the FMT and better days ahead!

Lisa

beth22
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Re: Preparing for my FMT

Postby beth22 » Thu Jul 09, 2015 4:37 pm

I have had several FMTs. Talk to your doctor about the prep carefully. Most people do better if they take Imodium the day of the procedure, before and after. You don't want to lose what they put in.

hiker1
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Re: Preparing for my FMT

Postby hiker1 » Thu Jul 09, 2015 9:09 pm

Interesting! Hadn't thought of that. I have a phone consult with my doc set up for next Tuesday, so I'll mention it then.

Thanks.

Bobbie
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Re: Preparing for my FMT

Postby Bobbie » Thu Jul 09, 2015 11:11 pm

Also check the info about diet and ask your doc what he/she wants you to eat. Some recommend high fiber for the donor and low for the donee before the procedure and then high fiber for the donee after the FMT to encourage the growth of new bacteria. You will be on antibiotics until several days before the procedure and then the prep the day before.

Best of luck.

hiker1
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Re: Preparing for my FMT

Postby hiker1 » Fri Jul 10, 2015 3:37 pm

My GI Doc had a cancellation in her schedule for next Tuesday (14th), so I'm going to be getting this done sooner than I expected. So far, I haven't been given any diet instructions specific to the FMT, just the general colonoscopy diet, so I'll send her an email right now about these questions.

Thanks everyone for all the help!

sevla
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Re: Preparing for my FMT

Postby sevla » Sun Jul 12, 2015 5:29 pm

I have the same questions, Hiker1!
My doctor really does not say much: he just says I can eat whatever and go on with my life as usual.. Seriously!?
I also asked him if I should take imodium right before procedure - he said no. Ugh, I have heard many people doing it!

Did anyone who had FMT before take enteragam before and also after? I just hear people also saying that it is not good to take commercial probiotics after the FMT - my GI again said to just take whatever probiotics I want..

I just don't trust his judgement mainly based on all of your experiences..

Good luck hiker1 and keep us posted!!

seekingcure
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Re: Preparing for my FMT

Postby seekingcure » Sun Jul 12, 2015 7:15 pm

If you eat a low residue diet for several days prior to the "prep day," the prep will go a lot easier because you won't have as much to get out. You also might be able to get by without drinking the entire mixture (if you have the gallon of liquid), especially if you have been having loose stools and are not constipated going into it. I used a Miralax prep and drank 64 ounces of Miralax with gatorade and was cleaned out, but I did eat lightly for several days prior to the prep and was having loose stools before I started it.

My doctor also told me not to take any Immodium prior to the FMT and said that, "I wouldn't need it." I followed her instructions, but I did need it, and lost a good portion of my transplant immediately upon waking up from the Propofol. Fortunately it seems to have worked anyway, in spite of having to take a round of Macrobid ten days after the FMT. I was drinking kefir three times a day and eating a little sauerkraut daily and/or a couple of lacto-fermented pickles and have continued those since the FMT. I use Bubbies brand. I get it at Whole Foods or Earth Fare and noticed my Publix has also started carrying it just recently. That's the only one available in my area and it states that it contains "live active cultures." Their bread and butter pickles have vinegar and do not have the active cultures in the dill pickles.

As far as the EnteroGam, I can't advise you on that, because I really don't know if it is recommended after FMT or not. That is something you will have to ask your doctor about. It is a prescription food so your doctor will have to prescribe it anyway. I would take him some information about EnteroGam and ask if it would be okay. I would also ask the doctor if there is any reason not to take Immodium before the FMT. I think I would have done better if I had taken it.

Wishing the very best for both of you. Hope this will wipe out c-diff once and for all for you both!
Bea

sevla
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Re: Preparing for my FMT

Postby sevla » Mon Jul 13, 2015 12:53 pm

Thanks a lot, Bea! I am getting nervous day by day...

hiker1
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Re: Preparing for my FMT

Postby hiker1 » Thu Jul 16, 2015 1:09 am

Well I had my fmt on Tuesday afternoon, and what an amazing difference! Unfortunately the pendulum has swung the other way and now I'm completely constipated, but I'm hoping that will resolve itself in time. I'm just going to take it day by day and not assume I'm cured, but so far, this is the best I've felt in 6 months. Hopefully I'll have a success story to post in a little while.

The doctor advised against Immodium before the procedure but required that I take 2 immediately after. I'm moving from the low fiber diet that I had before the fmt, slowly progressing into a high fiber diet. I'm also taking 1 Culturelle per day as the doc recommended Lactobacillus for at least the first few days.

beth22
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Re: Preparing for my FMT

Postby beth22 » Thu Jul 16, 2015 2:40 am

It sounds as if you are making real progress. I have heard from others that C can be a problem sometimes. If you eat foods with more fiber, that should help. The Culturelle should help too. It is probably still an effect from the Imodium. I couldn't go at all for 4 days after my first colonoscopy transfer.

Lisa33
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Re: Preparing for my FMT

Postby Lisa33 » Thu Jul 16, 2015 11:07 am

Glad to hear the FMT went well and you are feeling good! I will pray for your continued success! You sound like you are on the road to recovery!

Bobbie
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Re: Preparing for my FMT

Postby Bobbie » Thu Jul 16, 2015 11:23 pm

Stay well hydrated and add fiber as Beth suggested. That should help the constipation. If it continues, contact your doc and ask him/her for suggestions.

hiker1
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Re: Preparing for my FMT

Postby hiker1 » Mon Jul 20, 2015 11:42 am

Well the FMT failed. After a few good days, things started heading south again. I just can't believe it.

NikaNik
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Re: Preparing for my FMT

Postby NikaNik » Mon Jul 20, 2015 12:14 pm

Hi, Hiker. So sorry you're not feeling well. Many people here have had D after FMT (or any treatment) and it doesn't mean it failed. Your gut has been through a lot and it can take time for things to adjust. Many (it seems most) folks develop IBS for a while after treatment. Did you get a positive PCR test again?


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