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08-05-2017, 10:16 AM   #841
wildbill_52280
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Video titled, The Microbiome May Reinvent Medicine As We Know It.
https://www.youtube.com/watch?v=YWXbpbIvADw
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Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
http://www.crohnsforum.com/showthread.php?t=52400
08-12-2017, 11:59 AM   #842
Lady Organic
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Anyone know if complete cleaning with prep is needed just before colonoscopy transplant with most doctors and researchers performing it today? Thanks.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
08-13-2017, 05:26 PM   #843
wildbill_52280
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Anyone know if complete cleaning with prep is needed just before colonoscopy transplant with most doctors and researchers performing it today? Thanks.
At this point i think everyone is trying different things still and documenting them, with not much of a clue how each variable effects the efficacy rate. look up a few of the latest studies i suppose, that could give you some answers but it would be along the lines using antibiotics before hand to better prepare the microbiome to accept new organisms which i vaguely recall did show greater efficacy rates. Don't quote me on that though ,so again, that could be looked up.

I would personally like to keep as many original organisms I had, skip the antibiotics, and just increase the treatment dosage of bacteria and use other means to increase the transfer of bacteria like a high fiber diet which also has been shown to increase FMT efficacy, or I'm referring to the pectin study which showed that. But I assume most types of fiber found in food could do the same thing.
08-14-2017, 01:23 PM   #844
lucycui
 
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Hi,

I'm new to this forum and very interested in this topic. I have viewed all in this thread and didn't see any canadian clinic trial on CD. Is there any doctor doing this in Canada?

Thanks,
Lucy
08-14-2017, 02:50 PM   #845
Lady Organic
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Hi,

I'm new to this forum and very interested in this topic. I have viewed all in this thread and didn't see any canadian clinic trial on CD. Is there any doctor doing this in Canada?

Thanks,
Lucy
Hi Lucy and welcome!
there is a trial for CD in Toronto, but the main criteria to meet is: Admission for IV steroid therapy.
https://clinicaltrials.gov/ct2/show/...NA%3ACA&rank=3

Last edited by Lady Organic; 08-14-2017 at 04:53 PM.
08-14-2017, 02:52 PM   #846
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Thank WildBill, but by ''prep'' I meant the cleaning of the colon with PG-Lyte to empty it!
Do we have to do it for most trials? Do we know?
thanks again!
08-14-2017, 02:53 PM   #847
Scipio
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Yes, they are investigating this in Canada too:

http://crohnsandcolitis.ca/Research/...h#project-arcc
08-14-2017, 03:10 PM   #848
lucycui
 
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Thank you all!

My husband got CD more than 16 years ago. He used to take both Imuran and Ascal and stopped Imuran after diagnosed merkel cell carcinoma. We decided to not take any immune suppressor drugs as these are the root cause of the cancer. He's doing ok for now but we are seeking alternative way to treat CD. This is very good news for all of us. Hope it will be approved soon. Looks like we don't meet the requirement of the clinic trial in canaca.

Regards,
Lucy
08-14-2017, 10:17 PM   #849
wildbill_52280
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Thank WildBill, but by ''prep'' I meant the cleaning of the colon with PG-Lyte to empty it!
Do we have to do it for most trials? Do we know?
thanks again!
That is kind of along the lines/similar goal of clearing out the former microbiome, to make way for a new one, kind of like antibiotics would do. I'm not sure its necessary, but for an enema, perhaps it is beneficial.
08-31-2017, 11:27 AM   #850
wildbill_52280
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FMT was given to someone with C.diff and FMT seemed to also eliminate their celiac disease symptoms, pretty cool!

Treatment of refractory celiac disease type II (RCD II) and preventing the development of an enteropathy associated T-cell lymphoma in these patients is still difficult. In this case report, we describe a patient with RCD II who received fecal microbiota transfer as treatment for a recurrent Clostridium difficile infection,
and remarkably showed a full recovery of duodenal villi and disappearance of celiac symptoms. This case suggests that altering the gut microbiota may hold promise in improving the clinical and histological consequences of celiac disease and/or RCD II.
http://www.jgld.ro/wp/y2016/n3/a20.pdf

Last edited by wildbill_52280; 09-01-2017 at 11:12 AM.
09-07-2017, 04:23 PM   #851
wildbill_52280
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Advancing Bio is the second stool bank to open up recently in the U.S. since Openbiome started in 2012. These stool banks collect and store stool samples to perform Fecal Microbiota transplants for C. difficile infection.

https://www.advancingbio.org/Trusted-Services

http://www.openbiome.org/
10-02-2017, 02:41 PM   #852
wildbill_52280
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Seres therapeutics tests Fecal transplant pill in Ulcerative colitis and soon will test it in crohn's disease.

http://ir.serestherapeutics.com/phoe...cle&ID=2303923
10-03-2017, 03:08 PM   #853
wildbill_52280
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Early studies for FMT in Diabetes shows some promise.
https://medicalxpress.com/news/2017-...recipient.html
10-10-2017, 02:19 PM   #854
Guerrero
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Any succes of FMT with CD in the ileum?
10-10-2017, 02:38 PM   #855
Spooky1
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I'd be happy to know that too, but I also have Crohn's in the mouth.
10-10-2017, 06:41 PM   #856
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Any succes of FMT with CD in the ileum?

26 out of 30 crohn's patients achieved remission with one oral FMT in 2015. These were patients that failed all medications. There are other studies as well they should be in the first post of this thread although I'm not sure.
https://www.ncbi.nlm.nih.gov/pubmed/25168749
10-11-2017, 06:17 AM   #857
Guerrero
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Very interesting. Why this therapy is not tested widely?
10-11-2017, 08:06 AM   #858
Spooky1
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I wish they would hurry on with this. It really could make a difference to the quality of our lives.
10-11-2017, 02:15 PM   #859
wildbill_52280
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Very interesting. Why this therapy is not tested widely?

There are some more studies they should be in the first post.
It's hard to find donors that are willing and educated, and also hard to determine that the donors are healthy. Also, the concept of FMT has challenged roughly 100 years of how the human body works, the prevailing theory is that bacteria are all bad for us so the concept of a probiotic and the degree at which it can influence our health takes time for people to learn and accept.

One piece of good news is that FMT is FDA approved for a similar but more deadly G.I. condition called C. difficile, but not for any other condition. This does seem odd given all the evidence for IBD, but there are still studies that show no effect, so its all this contradictory information that confuses some people, one problem is that many of the protocols that are followed aren't well documented in these studies so they are sometimes hard to build upon and interpret which variables play a role in doing it successfully, regardless, we have still made progress even though it isn't super perfect and organized.

One solution is a stool bank that was started mainly to find healthy donors and store frozen stool samples for supply doctors to treat c. difficile, but last year they also created a pill version, and I vaguely recall some studies have used it for c diff, but I know it's available and could be used to treat IBD but I don't recall if they have done that yet. That could be more successful and super easy for the patient's and doctors but we don't know that yet, Still waiting for that FMT pill study. Openbiome makes full spectrum FMT pill, where other companies are trying to use a small selection of bacteria. Either strategy could work to restore the healthy diversity of microbes that live in the intestine.
10-11-2017, 07:54 PM   #860
wildbill_52280
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Pretty amazing study using FMT on U.C.

https://www.ncbi.nlm.nih.gov/pubmed/28991839
10-11-2017, 09:36 PM   #861
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I have been doing FMT for a while now (to address my Crohns not caused by C.Diff).. more frequently before and gradually tapering out. It has provided fantastic results (thanks to my donor). My colonoscopy last month for the first time ever showed no traces of inflammation.
(Had 2 resection surgeries before I started this).

I however did a combination of food restrictions, enteragam, probiotics and FMT (for a year and half).
10-12-2017, 10:29 AM   #862
wildbill_52280
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I have been doing FMT for a while now (to address my Crohns not caused by C.Diff).. more frequently before and gradually tapering out. It has provided fantastic results (thanks to my donor). My colonoscopy last month for the first time ever showed no traces of inflammation.
(Had 2 resection surgeries before I started this).

I however did a combination of food restrictions, enteragam, probiotics and FMT (for a year and half).
how often have you done FMT? how are you doing it, enema?
10-12-2017, 11:57 AM   #863
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started with doing them 3 times/week for 2 months, later down to 2 times/week. Now down to 1 time/week. Will stop this for good in Dec. I may have done a few more but I started tapering out based on the Calprotectin test results. Enema worked for me as it could be self-administered.
10-12-2017, 12:11 PM   #864
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Are you doing it by yourself or under the supervision of doctors or at the hospital?
10-12-2017, 12:18 PM   #865
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I am doing this on my own (since FDA permits FMT in a hospital setting only for C Diff. induced Crohns). I do have a doctor monitor my overall health though.
10-12-2017, 08:13 PM   #866
wildbill_52280
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vnag, how old is your donor and did you get a blood test for your donor, and other precautions? I assume you did but just making sure.

Have you ever frozen any of the samples? it seriously damages the bacteria and I've seen some people do this but not understand that it should not be done unless you use glycerol as a cryoprotectant, freezing kills about 80% of the bacteria or more.

Also, did you request the donor and yourself follow a high fiber diet? Doing All this will help your success.
10-12-2017, 09:16 PM   #867
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I took the recommended precautions (screened the donor for all possible diseases).

I did not really have any food restrictions for the donor. Based on my personal research and knowledge from others, I picked a donor in my age group and ethnicity and a vegetarian (just like me).

I am not freezing the samples because of the reasons you described.. which is probably what got reflected on my biopsy (which came out as negative for colitis) and colonoscopy results (which showed no traces of inflammation)..
10-13-2017, 09:29 AM   #868
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Really interesting Vnag! Before trying FMT, did you try the food restrictions and probiotics? In other words, do you think had you only done the FMT without the other things, it would have worked?

In any case, bravo!
10-13-2017, 10:14 AM   #869
Spooky1
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I wish I had the courage to do this. Not that I know of someone willing. Most don't know anything about FMT. Good on you. Please keep us informed.
10-13-2017, 01:24 PM   #870
vnag
 
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Spooky 1,

Since there was at least 1 research paper on the nih website based on clinical trials for FMT for Crohns, that gave me more confidence to try this out. It is a calculated gamble (supported by research papers that I had to read to convince myself to try this) .

I took a bit further when I found a research paper on 'tara gum' where tara gum (a food additive to icecreams, etc) with s. themophilus helped fixed the leaky gut by tightening the cell junctions in the gut as tara gum makes the flora stick to the gut walls longer.

I did FMTs with tara gum powder mixed to it .


I can share the research papers if it helps..
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