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Finished my FMT :( no improvement

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Ulcerative Colitis
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 7/12/2019 10:22 PM (GMT -6)
Hi everyone thought I would send out a quick update .
I finished my Fecal microbiota transplantation this week . Won’t know till I have my scope on Wednesday what the official outcome will be.
My symptoms are still present so I can only assume I still have pouchitis or cuffitis . Still vistiting the bathroom on a average of 15 times a day and the back door pain is still there . The gas spasms have decreased a small amount but there are still around .
I truly hoped this would work

I was talking to a nurse at the hospital who is working with a gastro they are also conducting a study with 200 patients who suffer with UC. She said their success rate is 80% so far .
Omg that’s amazing ... I know it’s not helpful to think “ what if “ but dam I would suggest to anyone to try it out . I so wish my gastro would have suggested the trial of FMT when I was suffering with my UC 2 years ago .

So now I wait till Wednesday to hear what the doctor has to say .
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imagardener2
Veteran Member
Joined : Jan 2010
Posts : 5896
Posted 7/13/2019 3:08 PM (GMT -6)
So sorry your symptoms are so bad, wish you had a good response to FMT.
Are you thinking you will go on a antibiotic now?
Just wanted to respond to your post to empathize, I've been in the hell of 15 a day BM's.
You are brave. Thanks for posting and best wishes.
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 7/13/2019 3:51 PM (GMT -6)
FMT didn't work for me either. Actually, it made me a lot worse. I was also told that the success rate is high, but keep in mind that they don't generally include the drop-out numbers in their end results, unless those people come back in to do the follow up surveys. Most don't because, say you drop out in the second month, and the study continues for over a year. How many drop outs will come back in to do the paperwork when it didn't work for them? Not many. I certainly didn't.

In my case when I added FMT to my severe inflammation, it made me immune system 10x more reactive because now it had foreign bacteria on top of dealing with what was already there. I developed an abscess that required surgery. It was really awful.

In the FMT community research groups, the consensus seems to be that the higher your level of inflammation, the less chance FMT will get you into remission. Bacteria live on the healthy mucosa and if it's inflamed or ulcerated, bacteria won't form thriving communities. If you can get yourself more than halfway to remission, there's a higher chance it'll work. The people who achieved remission (or close, like 90%) and then did FMT were able to stay in remission for much longer, and many indefinitely. In other words you still need to address the underlying cause of your UC before FMT can really work. For only a small percent of patients, the absence of diverse flora is the root cause. For most people the lack of diversity is just a symptom.

The only thing FMT is guaranteed to work for is c. diff infection. The success rate is 90% regardless of what stage of UC you're having.
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1668
Posted 7/13/2019 8:28 PM (GMT -6)
Valli all the best for you.Your a power of example to me.
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 7/13/2019 11:16 PM (GMT -6)

imagardener2 said...
So sorry your symptoms are so bad, wish you had a good response to FMT.
Are you thinking you will go on a antibiotic now?
Just wanted to respond to your post to empathize, I've been in the hell of 15 a day BM's.
You are brave. Thanks for posting and best wishes.


Thank you imagardener2 I agree it’s been hell some days living in the bathroom . I had done many courses of antibiotics before the FMT, problem was it was causing serve heart palpitations each time I stayed on longer then a week . So lateen antibiotics isn’t going to work sad
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 7/13/2019 11:27 PM (GMT -6)

MarkWithIBD said...
FMT didn't work for me either. Actually, it made me a lot worse. I was also told that the success rate is high, but keep in mind that they don't generally include the drop-out numbers in their end results, unless those people come back in to do the follow up surveys. Most don't because, say you drop out in the second month, and the study continues for over a year. How many drop outs will come back in to do the paperwork when it didn't work for them? Not many. I certainly didn't.

In my case when I added FMT to my severe inflammation, it made me immune system 10x more reactive because now it had foreign bacteria on top of dealing with what was already there. I developed an abscess that required surgery. It was really awful.

In the FMT community research groups, the consensus seems to be that the higher your level of inflammation, the less chance FMT will get you into remission. Bacteria live on the healthy mucosa and if it's inflamed or ulcerated, bacteria won't form thriving communities. If you can get yourself more than halfway to remission, there's a higher chance it'll work. The people who achieved remission (or close, like 90%) and then did FMT were able to stay in remission for much longer, and many indefinitely. In other words you still need to address the underlying cause of your UC before FMT can really work. For only a small percent of patients, the absence of diverse flora is the root cause. For most people the lack of diversity is just a symptom.

The only thing FMT is guaranteed to work for is c. diff infection. The success rate is 90% regardless of what stage of UC you're having.

Wow !! Sorry you had complications after you tried the FMT that had to be rough? When the nurse mentioned such a high success rate I too was surprised because like you the only high success rate I read about was for C diff. Then I am sure there is no way I would have had success with my UC my whole colon was all ulcerated , unless they caught it in the beginning.
How are you feeling now Mark?
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 7/13/2019 11:32 PM (GMT -6)

3timechamp said...
Valli all the best for you.Your a power of example to me.

Ohhhh 3TC yes your example is “ stay off the crapper “ Happy to hear you’re doing well. How’s the business , kids and dating going ? Is the ex out of the picture completely now?
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 7/14/2019 3:11 AM (GMT -6)
I'm in remission now, but no thanks to the FMT smile
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17767
Posted 7/14/2019 10:58 PM (GMT -6)
Thank you for the update. I was just thinking about you and hoping for good news. What's next? I guess it's one thing at a time. If something doesn't work, something else will. You're taking the right steps toward finding what works for you. It just takes time. sad
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 7/14/2019 11:26 PM (GMT -6)

notsosicklygirl said...
Thank you for the update. I was just thinking about you and hoping for good news. What's next? I guess it's one thing at a time. If something doesn't work, something else will. You're taking the right steps toward finding what works for you. It just takes time. sad


Thanks NSSG will find out Wednesday what the next step is ?
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4545
Posted 7/15/2019 9:25 AM (GMT -6)
I would take the 80% with a grain of salt. Not only because of the dropouts, but also because ina proper study the nurse should not know who is getting treatment and who is getting placebo. The subjects are supposed to be blind, and only key personnel who prepare the treatment are supposed to know the group assignment.Not something a GI nurse would know, unless s/he was actually doing the treatment prep.
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1668
Posted 7/18/2019 4:51 PM (GMT -6)
Buisness is great,we do Interior and Exterior Residential Painting and Carpentry.Not many Painters do Carpentry but we do alot of both so customer just has to hire one contractor.Most houses are 1-2-3-4 mil so i like working for people who want the best.My 19yo daughter Teresa comes over to help with paperwork,office stuff so shes a big help.My son is mommys little boy so it is what it is.Older daughter is like her mom always angry at the world.Too busy to date,alot of hurt last few years trying to keep marraige together, so not sure if i want relationship yet.Now if a supermodel wants to come over and spend the night then.......................NO NO NO-cant go there......or can i??? Relationship are not easy as we all know.Ill leave that in Gods hands .Dont see Ex ever,had to call ambulance for my mom 2 weeks ago on a Sunday.My 2 younger kids came out[Ex lives across from my mom] to see Grandma but wife wouldnt come out.Beyond sad,borders on mental illness with things shes done.Moms in rehab had fracture on spine.She had minor procedure Monday to correct it,4thround of chemo next week so alot going on.Jpouch doing well=hope your all well
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 7/21/2019 9:07 PM (GMT -6)
Business sounds like it keeps you busy and that’s great 3TC. And regarding the ex most will never change and that’s ok that’s why they are our ex’s .
Glad your one daughter is helping you out with the business end of the company. Regarding dating you have time for that once you get settled into a new routine .
I remembered your mom
was battling cancer she is one tough cookie and needs a break from all these issues hope all goes well for her.


Doctor said I still have some inflammation in my pouch there was some improvement from my scope 5 weeks ago but not completely healed as of yet . He started me on another antibiotic to try.
Didn’t take it this weekend because we were traveling up north cottage country no where near a hospital and since it’s in the same family second generation as the one I am slightly allergic to I thought it would be best to wait till Monday to start it .
Fingers crossed it will help .
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 7/21/2019 9:59 PM (GMT -6)

DBwithUC said...
I would take the 80% with a grain of salt. Not only because of the dropouts, but also because ina proper study the nurse should not know who is getting treatment and who is getting placebo. The subjects are supposed to be blind, and only key personnel who prepare the treatment are supposed to know the group assignment.Not something a GI nurse would know, unless s/he was actually doing the treatment prep.

The nurse might be speaking from clinical experience rather than a study... i.e. how many people she observed got a lot better.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 7/22/2019 9:44 AM (GMT -6)
So sorry to hear it did not work for you. I hope you find relief soon.
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