9 days post FMT -Expectations?

If you have had or are considering an FMT please share your experiences here.
Tomod
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9 days post FMT -Expectations?

Postby Tomod » Thu Apr 21, 2016 7:29 pm

I am a rectal cancer patient who developed C-Diff after my Ileostomy reversal about 10 weeks ago. I went thru the Flagyl and Vanco treatment only to show a 2nd failed test. My main issues before having my FMT last Wednesday were multiple bowel movements (upwards 20-30 per day), usually small pieces, never feeling like I emptied, excessive leakage and urgency. Doctor and Phlebotomist were stunned with positive test because stool was formed and I did not have the "awful odor". I had no real cramping or pain, no fever and no D (not sure if masked by Imodium, Metamucil or other things being taken during this time. I generally experienced long "bad" periods of going every 5-20 minutes for anywhere from 10-12 hours. "Good" periods were few and short.

Since the FMT, I believe the "bad" periods are shorter but have not gone away. I occassionally have a good bowel movement, started Metamucil a week after FMT becuase of sticky, stool leakage. Good and bad periods are very random and I have no idea when to expect one or the other but usually occur after eating. I am trying to follow a high fiber diet. Have been up at night with a 2-3 hour bad period most nights. Urgency also is an issue!!!

Not sure if my issues are related to cancer treatment which included: chemo and radiation, followed by surgery and more chemo OR the C-Diff. I know radiation and surgery can exact a heavy toll on the muscles and nerves in the rectal area. I have not been retested since my FMT but life is an excruciating nightmare right now due to bowel movements and soreness in rectal area. Doctor tells me it will take time which I understand but the improvement seems to be very slow if at all. We are considering a second opinion because my doctor feels everything "inside" looks great and has no answers if this doesn't improve & work.

Sure everyone is different, but is there a length of time I need to wait to see increased improvement? How long is recommended for a retest to see if FMT worked? Cancer related Or C-Diff related issues?

If anyone has any previous history similar to mine or any guidance as to what I should expect, I would certainly appreciate the follow up.

NanciT
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Re: 9 days post FMT -Expectations?

Postby NanciT » Thu Apr 21, 2016 8:59 pm

Hello Tomod and welcome to the site, you will find our welcome letter and posting rules in the first section.

I am sorry you are going through all of this, it's a bit more complicated due to the rectal cancer and recent surgery reversal.

I can only offer information we have on the site when people are post FMT, I have not had one but I am sure others will chime in.

A few things jumped out at me, you are eating a high fiber diet right now and just 9 days post FMT. Is this the recommendation of your GI? It usually takes time for things to settle down post FMT and many get Post IBS. Its something we have seen here often on the site.
The other is your mention of terrible rectal pain, you have been though a great deal and I would certainly consider that second opinion. I wish I had more for you, the complication of Rectal cancer and recent surgery can have a great effect. Check in with your GI about the diet and Post FMT issues, I would ask him also who he might recommend for a second opinion.
Hopefully you will see improvement, it does take time
Take Care
NanciT

Tomod
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Re: 9 days post FMT -Expectations?

Postby Tomod » Thu Apr 21, 2016 11:16 pm

Hello & Thank You

CR doctor recommended high fiber diet due to leakage and to bulk up stool in hopes of eliminating so many trips to the bathroom. Thinks bulking up stool will create space to hold more stool due to surgery.

I forgot to mention that rectal pain has been caused by the frequent trips to the bathroom and a fissure which has been aggravated by all of the bathroom trips/issues.

Also found out the day of my procedure that I was my CR doctors first FMT, so even though it sounds like a routine procedure I hope everything went the way it was supposed to.

Thanks again for your time and recommendations,
Tomod

georgina
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Re: 9 days post FMT -Expectations?

Postby georgina » Fri Apr 22, 2016 12:47 am

Hi Tomod
First let me welcome you to the site that no one want's to join! I'm sorry you are dealing with this.I hope this FMT will do the trick for you , even though symptoms might linger for awhile.You didn't mention the kind of FMT you had: enema , trough a scope or naso-gastric tube.I'm 5 month out my naso-gastric infusion and still have some GI issues.FMT is not a miracle cure , at least for me.Be careful with that high fiber , for me is still hard to tolerate even after 5 months , sometimes it gives me D.
Give FMT a little time but do keep a close eye on symptoms , if symptoms go south and or you can't get relief ask to be tested. Some people might need more then one FMT , let's hope you do not!
Feel better

NanciT
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Re: 9 days post FMT -Expectations?

Postby NanciT » Fri Apr 22, 2016 11:33 am

Hi

Are you seeing a GI ? If not, please consult one. It sounds like your Colorectal surgeon is the one recommending the high Fiber diet and did the FMT.
Post CDIFF can be difficult for anyone, but you are also Post op which complicates things. I would make sure to consult with a GI especially about a healing diet and also to see you through the CDIFF.
Take care and I hope you feel better soon!
NanciT

Tomod
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Re: 9 days post FMT -Expectations?

Postby Tomod » Fri Apr 22, 2016 12:33 pm

Geogina and NanciT,

I had a colonscopy procedure for my FMT...

So far I have only dealt with my Colorectal doctor but tried reaching out to GI this morning... Told my wife they could get us in toward the end of May (and not with a doctor that does FMT's)... We will be meeting with my surgeon on weds and will be asking him to possibly get us in sooner with a GI.. He already mentioned the 2nd opinion may be necesssary if I do not show improvement..

Thank you both for your input, certainly appreciated,
Tomod

NanciT
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Re: 9 days post FMT -Expectations?

Postby NanciT » Fri Apr 22, 2016 5:28 pm

Glad you are meeting with the surgeon and yes, he should be able to call the GI, please ask him to do that. They need to be working together. I hate to hear you are having so much pain and they need to speak with each other so you get on the right diet and they deal with your pain.
Let us know how you do. Take Care
NanciT

georgina
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Re: 9 days post FMT -Expectations?

Postby georgina » Sun Apr 24, 2016 12:07 am

Tomod , the FMT done trough colnoscopy is the gold standard of FMT's , has the highest cure rate , although some people needed more then one.Hopefully not in your case , praying that this infusion has done the trick for you.Try a heating pad for the pain , it helps and some peppermint tea.Nanci is right , your doctors need to work toghether on your case .

Bobbie
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Re: 9 days post FMT -Expectations?

Postby Bobbie » Mon Apr 25, 2016 12:31 am

Tomod,
So sorry about your problems. Am sure you are miserable. I agree with the others - a second opinion might be helpful.

Am sure the soreness is excruciating and adding to your misery. Are they using a barrier cream to soothe the area and keep it dry? Sudacrem is a good one.

Quote:

Sudocrem Antiseptic Healing Cream has a water-repellent base which forms a protective barrier, therefore helping to stop any irritants (urine and stools) coming into contact with the skin. In addition, the emollient effect of Sudocrem can help to soothe sore inflamed skin ....

Ask about this.

Feel better.


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