FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon?

If you have had or are considering an FMT please share your experiences here.
dsherman
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FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon?

Postby dsherman » Thu Apr 14, 2016 4:34 pm

So I had top down FMT done a week ago today. D returned on Sunday so gastro and Infectious disease doc want to do a sigmoidoscopy to check my lower colon. Is it too soon to really be totally healed? Will it hurt more than help to do Fleet Enema so soon, it will be 11 days post transplant. Stool movements are down to one or two a day now although still bad odor and very loose. Nothing formed well since Monday. I had a severe allergic reaction to all antibiotics available to take for this a week prior to the procedure and had been on high steroids for 5 days before they did the implant fighting the allergic reaction. First two days post surgery were excellent, felt like normal then third day exhausted and barely able to get out of bed and having about 5 x's a day all loose D with some small amounts of M. Also got stupid thrush from all the meds the prior week so have been fighting that as well. Just oral thrush so I was given Clotrimazole to take for three days then switched to the oral Diflucan for two days. Stomach hurt so bad I am not going to take it again but it has not changed the stool issue. I really am just understanding that sometimes it just takes some time for things to settle back down. The last thing I want to do now is risk starting it all up again. Opinions?

beth22
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby beth22 » Thu Apr 14, 2016 9:39 pm

Sometimes you need more than one FMT. I had my best success when I did enemas. Top down did not work for me, colonoscopy did, but I did get IBS. However, I don't know if the IBS was from the FMT or just from being off vanco because I would get it when I stopped vanco before and then it turned into a c diff relapse. I don't think the Fleet's enema would do much damage, but I would ask your doctors what they are looking for. If it is something like microscopic colitis or Crohn's or UC, then I guess it might be worth doing, but ask them if you can't wait a little longer if you are concerned. Have you been tested again for c difficile? What about for other pathogens?

georgina
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby georgina » Fri Apr 15, 2016 1:15 am

Hi dsherman
Welcome to the site , sorry for having to deal with CDiff.I had a top down FMT in November after 6 months of vancomicyn and like you , i was miserable for weeks , even now after 5 months from infusion I'm still having some nasty symptoms.I was tested 6 times ( toxins test , where i live we don't have PCR) and each and everytime i was negative.Like Beth said , in some cases one FMT is not enough and the patient needs to repeat the procedure (hopefully not in your case) .I think is a little too soon to get a scopy done and i think that you should get tested first but if your doctor really feels that he needs to perform a sigmoidoscopy for you, you can ask him to do another infusion delivered trough the scope.
I hope that things start to firm up soon :) !

roy
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby roy » Fri Apr 15, 2016 4:03 am

One or two a day sounds like a perfect recovery.
I would not do anything that might change that.

dsherman
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby dsherman » Fri Apr 15, 2016 8:34 am

It is a kind of tough decision but there is pain in my right rib cage that has gotten progressively more sore. This morning had a more formed BM which was good and then some BD after that. They want to check my lower colon to make sure it still looks healthy since this has been going on awhile. I imagine that I will end up getting scheduled for a CT which means drinking all that contrast next. They cannot really try another antibiotic on me...there apparently is one more...without putting me under hospital supervision because of the last allergic reactions that I had. The first one was a bad rash and itching all over from the Flagyl, the next was hives on the following day from a Vanc intervenous infusion (like an idiot I let the ER doc talk me in to that and immediately got the redmans syndrome and they had to stop it) the other docs just could not believe they gave me that since it should have been done orally. The following day at noon after the hives had already made an appearance they tried to give me the Diflucan and 4 hours later I was in full shock, 5 trips to the ER in two days. So needless to say I am terrified to take another oral antibiotic now. But the Gastro and the Infectious disease doc both insist that it may have just been system overload and I may not actually be allergic so I know they are probably going to force me in to another trial run. I have left a message for the PA this morning at my docs office so I will see what they have to say. I will ask if there is much risk of the fleet causing any loss of bacteria. UGH!!! Just tough to know which way to go. My anxiety has been so bad this week I had to start taking a low dose of Zanax, which is helping for sure.

georgina
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby georgina » Fri Apr 15, 2016 1:17 pm

Lots of unknowledgeable doctors out there that don't have a clue on how to treat active Cdiff.I cannot belive they administered vanco intravenous.I can understand your fear about taking another treatment but you cannot play with Cdiff.It can be dangerous if it's left untreated.

dsherman
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby dsherman » Fri Apr 15, 2016 2:12 pm

I agree I have to keep moving forward. I am going to do it. They said it really is just the lower half of the colon not all of it so I should not be worried that it will totally clear all of the good stuff out of my system. One step at a time. I am not going to stop until I am clear of this mess! Thanks for the understanding folks!

dsherman
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby dsherman » Tue Apr 26, 2016 8:28 am

Well it has now been slightly over 3 weeks since my transplant. My stools are normal. My sigmoidoscopy biopsy show no C-diff at all. My colon is healing normally and had no damage. I was so very lucky to have been in a group of doctors that believe in this procedure. I am cured and I feel better than I have felt in weeks. Hang in there...it does not straighten out overnight, at least it did not for me. But in time and with a careful diet eating bland food that my system could tolerate and patience it has worked. What a miracle it is! God is Good.

My best wishes to all who read this that it will give you hope! This procedure does work!!! God Bless!!

georgina
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby georgina » Tue Apr 26, 2016 8:44 am

Hi dsherman
I'm so happy that the transplant did the trick , it seems it's been a miracle cure for you even though it needed three weeks to firm things up. I'm 5 months out of mine and i'm still not back to "normal".

gwang
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Re: FMT done 7 days ago- Sigmoidoscopy 12 days out- too soon

Postby gwang » Wed Jun 01, 2016 11:27 pm

Hi Sherman,

Do you mind disclosing your age?

The reason I ask is because most if not all PI-IBS happens to younger people after an infection because of an hyperactive immune system. Essentially, the immune system doesn't shut off and people are left with symptoms. Also steroid treatment during infection is protective against PI-IBS.

Otherwise, good to hear that you are feeling better!


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