Hey UC’ers,
A new study was recently published that detailed some pretty fascinating results regarding fecal transplant therapy for people with UC.
It was conducted in China at one of their Gastro Disease centers and I want to share some of their results with you in this post and of course you can read the full study details here at anytime.
The study was titled: “Step-up fecal microbiota transplantation strategy: a pilot study for steroid-dependent ulcerative colitis”
Background:
The strategy of using fecal microbiota transplantation (FMT) for refractory ulcerative colitis (UC) remains unclear if single FMT failed to induce remission. This study aimed to evaluate the efficacy and safety of a designed step-up FMT strategy for the steroid-dependent UC.
Results of the Study:
Eight of fourteen (57.1 %) patients achieved clinical improvement and were able to discontinue steroids following step-up FMT. One patient was lost to follow-up. Among the 8 patients who responded, five (35.7 %) received one FMT therapy, one (7.1 %) received two FMTs, and two (14.2 %) received two FMTs plus a scheduled course of steroids. Four (28.6 %) of the 8 patients who responded maintained long-term remission during follow-up (3–18 months). Six patients (42.9 %) failed to meet the criteria of clinical improvement and maintained steroid dependence, though three experienced transient or partial improvement. Microbiota analysis showed that FMT altered the composition greatly, and a microbiota composition highly similar to that of the donor emerged in the patients with successful treatment. No severe adverse events occurred during treatment and follow-up. ***(This was one of my favorite parts of the details listed of this study!! No severe adverse events occurred….!!! that’s some good news folks!)
Conclusions:
Step-up FMT strategy shows promise as a therapeutic strategy for patients with steroid-dependent UC, likely due to the successful restructuring of gut microbial composition.
Again, you can read the full results of this study at this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4567790/
Feel free to posts any thoughts you might have on this one! And if you are one who has some experience yourself with FMT for your UC, please share a comment on how it has gone for you!
And have a great day,
Adam
there is a section of the site devoted to FMT stories that you flip through here: iHaveUC FMT Stories
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
I’ve been having Fecal Transplants or Fecal Microbiota Transplants at the Taymount Clinic regularly for 16 months now. I have treatment every two weeks which I now do at home and initially had ten treatments over ten days to kick start the process.
The results I get from the transplants are amazing all round. Increased energy levels, formed stools, greatly reduced urgency and frequency of toilet trips, better sleep and I’m also able to tolerate a lot more foods although I still eat gluten free and eat a mainly Paleo diet!
Thought I would share this for anyone considering doing fecal transplants as they’ve changed my life. I’m also on no medication at all!
Before I started the transplants I was in a medium- sever flare for 3 years constantly. Steroids, immunosuppressive drugs and pentasa didn’t help me and all made me feel drained and constantly tired. My hair was falling out. I had put on three stone of steroid weight!
This is the best natural approach to UC available right now and it really works.. It’s just not available enough!!! Good luck to anyone reading this :)
Hi Jasim, do you have Crohn’s, or which disease are you treating? Thanks for the info.
Hi Yasmin, Good to know you are in remission! I was wondering about it. So is
this bi weekly treatment is also thru the clinic but you do it at home? How long do you have to continue with this treatment?
Yasmin,
It’s so cool, i am in the middle of the second set of 5 infusions from Taymount Clinic.
I did the initial 5 at the clinic, since done 2 and am currently in Cologne on work so will come back after a week and do the last 3.
Symptoms? Results? Well I was meant to do FMT before Christmas but a flare pushed it back, I ended up doing it in January and with a flare of the sigmoid that I couldn’t do much about stopping. This appears my mom issue!
Within first infusion I kept in the transplant until the next FMT. Infact I only went to release FMT for space but in the end didn’t even do that..just kept it in.
When I was flaring I was going 5 times a day (controlled with diet) but during infusion I went 4 times in the whole week!
Since, I have seen some urgency but that was due to some gluten in oyster sauce imo. Generally speaking I am on a low carb high fat diet. Cutting out gluten but it’s been a battle whilst in Cologne.
Anyway, wanted to add…bacterial being apart of the answer for UC is evident. This is the area of solution.
I plan to do more FMT for sure, but I also want to hear my body and see what the initial FMT does.
Hi Yasmin – Glad to hear you are doing so well! My son had FMT at the Taymount Clinic in the Bahamas in January. He is home now bringing 6 implants home with him. He is doing much better doing the implants at home. The colon prep was hard on his colon. So the 10 day kick start was a bit bumpy. Did you have a difficult time holding the implant in initially? And oh so pricey not sure if we can buy more but he seems to be doing better. Would love for him to continue the implants for 2 years but as I said so pricey. You are blessed to live in the UK as they can mail it to your home. We live in the US so we’d need to travel to the Bahamas or the UK to get more implants. If I had it to do over again he’d do 1 week at the Clinic and then buy the implants and do at home. This would be cheaper as you have to pay for accommodations and food. Why does it have to be so difficulty? And just for anyone considering this treatment bring a large suitcase to bring the implants home. I was not told any of this before we went so took back only what we could put in our suitcases.
Apparantly in the states they are going to be doing studies with capsules instead of fecal transplants. The pills ( which are actually capsules) are frozen using fecal bacterias and have been given to cure the C. Dificil deadly bacteria with a very high recovery curing rate. If they can do this in capsule form it would be a lot better than people having to do enemas. A lot more practical , and less invasive. Hey Yasmin, my hair also started to fall out on Imurel. I am not on that crap anymore as I refused to take it anymore after four months of being seriously sick. I have been controlling mine with diet and mesazaline and foam or suppositories, but not in remission yet as such, but way better than I was when I was on steroids and imurel. Its good you are better. How much is it all setting you back financially to do this if you don’t mind saying? Just out of curiosity. I am in Spain and they don’t have this available here.
Tracey, I’ve heard about fecal pills. Is it used for anything other that C.Diff? Thanks for the info.
This is great to hear more about FMT. I was actually looking into this in Portland, Oregon a year or two ago when I was having a bad flare up. Both my father and a friend that are alternative medical doctors informed me of the treatment. However, while looking into it, I was informed that doctors could no longer treat people with UC with FMT in the US. I was told that if I found a way to do it, I would have to do with on the down low. They said if I moved out of the US, I could try this. I haven’t researched this lately and decided I would hold off until after having babies since I seem to be doing ok with Lialda and Aziathioprine (the generic form of Immuron). However, I would be interested in trying it in the future if I could remain in remission without being on drugs.
Hey Adam, I wonder what they meant that one patient was lost to follow-up? Did the guy die, or just went MIA and didn’t return for follow-up?
I have considered this procedure but my GI seems to think it would not help my Crohn’s. Of course my husband is very excited to be my donor… You can imagine the ribbing I get from him…
Hi does anyone know if this is available in the UK ?
Taymount Clinic Hitchin
Taymount clinic is in the UK-
Croft Chambers
11 Bancroft
Hitchin, Herts
SG5 1JQ, United Kingdom
Tel: 01462 712 500
I was able to get FMT treatment because I had C-Diff and then it turned into UC. I have found after reading the study that it is accurate to my experience. One time when I had a flare up and was so weak I could hardly walk. I went to get a FMT and I was better the next day. It felt like a miracle. Other times, I had several treatments and it took weeks. Not sure if it worked or I just was more strict with my diet and stress. My husband has been the sole donor, so I find that interesting that it would work so quickly one time and not so quickly another.
My husband and I do the treatments at home. Unfortunately he doesn’t really have the stomach for it, so it is a challenge. I am a little concerned that he in now a diabetic. Wondering if I could contract this through him. If I would then it would really mess up my SCD diet because our diets are slightly different. So, we have been avoiding it as of now. I wish I could just go to some doctor’s office close to my home and have it done.
If anyone can get this treatment, I would strongly recommend it as it is a natural way to get better. I think that you have to continue it every three months to keep it working. Maybe three days in a row to maintain. If you are really bad then maybe 7-10 days in a row to begin. After reading about all the drugs and side effects left with, seems like the way to go. I think it is a crime that it is not being used for us, since it is natural and simple. The complication is that it is not proven because sometimes it works and sometimes it doesn’t.
I get my blood work done every year. Last year I did the FMT just two weeks before my yearly blood work. I ran my own personal study. My General Doctor was floored with the improvement with my decrease of inflammation. This year, I am going to go in for my blood test not having the FMT. If my inflammation is high, I may ask for another blood test and have an FMT and see if there is a difference. But, either way the one time that I got better the next day kinda said it all for me.
So for those who want to travel to get this done. My advice is to learn to do it yourself because you will need to continue treatments. I feel blessed that I was able to experience this and feel angry that this is not looked into more seriously for all those who are suffering and don’t need to.
My doctor was giving out the fecal pills,but had to stop because the donor had the flu and continued to donate and all his patients came down with the flu. In my opinion, I am thinking the donor needs to be healthy and under 60 years old.
Jamie
I have had three fecal transplants and each have come out with a different result. The first one I tried about a year ago and it helped my gut tremendously for months. Unfortunately, I got another C-diff infection with my UC months later which convinced my doctor to try the transplant again for the second time. It helped clear the C-diff, but I still continued to battle major UC flare symptoms. I recently tried another fecal transplant about two weeks ago for the third time, I can’t say that it has helped my UC symptoms, but I will never forget how much it helped the first time I tried it, so if a doctor proposes the idea, I highly suggest trying it because everyone has a different outcome and I know from experience that if it can help with the UC pain in any way, it’s worth it.
Addie, where do you get your FMT treatments?
For all– are there locations other than Taymount that are reliable?
I have UC and am strongly considering FMT. I know everyone is different, but it would be helpful to hear how many treatments you all have needed to attain remission. I’m wondering if 2 weeks at Taymount would be enough and how I could receive follow up treatment if needed.
Thanks!!
I have a question on FMT: is it primarily for issues with the colon, or can it have effects on the small intestine? Does anyone have any ideas to get into remission specifically for Crohn’s in the small intestine? It seems I read more ideas for the colon than the small bowel. Even probiotics are more geared to the colon. Too many probiotics of certain types can cause overgrowth of them in the small bowel. My thought is that taking supplements like probiotics, or Tumeric, L-Glutimine for example, may work better if you take them at night when things are slowing down more inside. Maybe they have the opportunity to absorb better? ‘Just want to optimize my efforts…ideas?
If anyone had C-Diff , this is the window to get a FMT. Some US doctors are using this for C-Diff only. Been told immediate results for C-Diff. I believe legally you can get a FMT if you say you had C-Diff. wink, wink.
For UC’s it works sometimes and sometimes it doesn’t. I don’t mean for some it works and some it doesn’t. What I mean is it can work for you sometimes and other times not. I think that is why it is not legal here yet. I understand that it is the matter of getting good bacteria to stay in the gut. Sometimes it sticks and sometimes it doesn’t. So, many treatments for a kick start seems to be the answer, then toppers every couple of months.
This should not be expensive, it is all natural. I think some are just capitalizing on this treatment. I also think it is a threat to the drug companies. The main thing is to have the donor checked out to ensure safely.
The pills also need to come from a screened source. If a donor is sick at all, it will be passed to the patient.