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counting success stories with fts (continued)

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Posted 10/22/2016 7:25 PM (GMT 0)
Hi Jesper, Great News! Hope you manage to eradicate UC with FTs. Please keep reporting on your progress on this thread so I can add you to the research we are running together on the efficacy of this treatment. I hope you become the next one to be added you to 'success list'. Please keep a record of what you are doing. You can look back at out table so you know what variable we are looking for.

Hi Poopme, how are you keeping? Perhaps you can ask Michael Hurst about the tests in NY. You can find his e-mail address on his web-site. I wrote to him once and he kindly replied promptly.

Yesterday I had another infusion after 4 months had past since the previous one (20th June). During the last few I've experienced ups and downs. That's after really good 3 months. I'm so jealous of these people reporting here a smooth easy path with FTs and great immediate results. I'm also very happy for them. Unfortunately yesterday's donation was small and by accident, after I'd prepared it for the infusion, I spilt most of it :(

Best wishes,

Sharron

Post Edited (sharron19) : 10/25/2016 10:47:53 AM (GMT-6)

Posted 10/25/2016 1:51 PM (GMT 0)
Thanks for the support.

Have now had 4 FMT's over the course of 6 days. Due to guests and other events, I went 2 days without FMT . After the break I experienced blood again. I'm still down to only 2 BMs a day though :)

I have yet to try having solid BM's, but nevertheless I know this stuff is working:
For a long time I've had red eczema around my eye making me look like a drug addict or something. Super annoying!
But the eczema was almost entirely gone after the 3 consequtive days of FMT. And since skin-conditions are gut-related, I really know that something is improving in my gut.

I think though, that I might need significant more FMT's, and maybe another doner (a young male instead of my girlfriend as currently).

/J
Posted 10/26/2016 3:18 PM (GMT 0)
Eczema/red, burning skin around the eyes has come back - big time!
Really frustrated, as it was almost gone just a few days ago :(
Now I'm back looking like a wreck, making my outgoing job very difficult for me to cope mentally.

I've had som white rice and potates during the last two days, and I suspect it to be the cause. That's the only change I can think of. Will cut it out totally and see of it makes a change.

Had FMT #5 today with my brother as a donor.
He was harder to convince than my girlfriend, but he made a perfect stool for me to work with.
I have no trouble holding the FMT in. I only make 100 ML, so its not a lot.

/Very frustrated, but optimistic J
Posted 10/28/2016 6:31 AM (GMT 0)
Update:
Did FMT #6 yesterday afternoon. My girlfriend and I are becoming very effective in the process :)

After studying some more, I decided to take some fiber supplements and Inulin before and after the FMT. I really think it have had an effect.
This morning, the skin around my eyes is almost normal again - I guess 1-2 days more like this, and the the eczema will be gone.
Also this morning I had a BM with first a small, thin stool, and then some mushy stool (consistensy like oatmeal - sorry :) ). Still no blood and no pain during the day. And only 2-3 BM during the day.

So once again, I'm very optimistic about the progress.

Have an appointment with my doctor today. I have not informed him about the FMT - but my girlfriend demands that I update him. I am a bit nervous about his reaction.

/J
Posted 10/31/2016 1:27 PM (GMT 0)
Update:

Friday: No FMT due to work and social arrangements. Had a bad day stomach-wise. Had kale-salat at work and also a very raw salad in the evening (we were visiting some friends who served the salad). A lot of gas and some blood dripping.

Saturday: No FMT due to girlfriend (donor) not having any BM. Had an okay day with only a couple of BM's.

Sunday: 1 FMT in the morning. Did not go to the toilet the entire day.

Monday: This morning I had a BM with 3 solid stools!!! 10 minutes after I had another BM with loose stool. So its not perfect, but it's really moving the right direction.

Continously been adding fibre supplement and Inulin powder. Creates a lot of gas, but that is just a by-product from the bacteria feeding off the supplements. I really feel it makes a big difference. And it makes a lot of sense too.
FMT is only half the solution. In order for the bacterial flora to colonize, one needs to feed them the right stuff.
People with our problems tend to eat a very strict/limited diet, resulting in no food for the bacteria. I think that is why some people fail with FMT. (You should do some research on Fibres, Inulin and resistance starch).

Well, I've seen my first real stool for months, but I have not declared victory yet. Will keep on going!

/J

Post Edited (Jesper Poulsen) : 10/31/2016 9:19:24 AM (GMT-6)

Posted 10/31/2016 5:38 PM (GMT 0)
Jesper, I was so happy to read your posts. You are doing great and luckily you seem to be the type that doesn't give-up when results are not immediate and perfect. This thread needs people like yourself who can show that in many cases the success of this therapy is a matter of perseverance and more and more and more enemas than for others. I'd experienced lots of ups-and-downs and for a long time before I could tell for sure that the therapy was working. I've not completely recovered from UC but life is now bearable. When reading your posts I remind myself that I need to do more infusions. I know I'm not as lucky as others here but I'm grateful for my own achievement.

If you agree, I would like to add you to the 'in progress' list. However, we will need some more details about you, the donor and the therapy. Please look back at the list of criteria.

Also, please keep updating us. Like many other viewers, I read the posts on this thread regularly. Sorry I'm not good at always replying quickly. Perhaps sometimes updating without getting any replies might feel alone with it, but I know many of us are at your back supporting your path and wishing to see you on the 'success list' soon.

Pete, thanks for your update, great news! No blood in Stool test! Interesting what you wrote about the recent wave of stress experienced. Although stress probably had had a major role in the onset of my UC (triggered by antibiotics taken during a stressful period), I've never felt that since then it has had an effect on my UC symptoms. Please let me know how you would like me to update your entry on the list to be most accurate.


Best wishes,

Sharron
Posted 11/1/2016 9:19 AM (GMT 0)
Sharron: Thanks for the support! I know people don't neccessarily check this site every day, and that is perfectly fine. I don't expect answers to every post - but it is a great way for me to keep a journal.

In the beginning of doing FT my girlfriend had vacation and I was able to work from home some days. Now we are back in the daily grind, and we cannot keep the FT cadence as high anymore. So will probably just update every week or so.

You are welcome to add me to the list:



age at the beginning of fts: 31 years

sex: Male

diagnosis (date, area affected, severity): Ulcerative Colitis, mostly in the left side. Diagnosed in 2007 or 2008. Has been hospitalized a couple of times. The frequency, length and severity of flame-ups has increased over time.

donor's sex/age/relation to you: Donor is my girlfriend (29 years old). She is slim and healthy. She get constipated when eating wheat products, so maybe she is not perfect as a donor, but is super convienient. We have not made any blood or stool tests.

fts:date(from - to)/number of fts/frequency: Started 20/10-2016 and is continuing. Have had 7 FT's to date over the course of the ~2 weeks. It's difficult to be regular with it during work days, so we hit it in the weekends and 1-2 times during the week.

medication before during and after fts: Have had at least 6 rounds of Prednison (50 or 60 mg and the tapering over 3 months). Also tried Imurel which made we really bad and did not help on the UC. Has been taking Asacol for years. The first years 3*800 mg which controlled it somewhat. Later we upped it to 6*800 mg/day, but it could not hold it down.

results: On day 1 the bleeding stopped. After 7 FT i saw solid stool. But it is still in a very unstable state, so I also see loose stool. Down to 1-2 non-urgent BM's/day from ~8 dierrea BM's/day prior to FT.
Also, very red skin and eczema around my eyes has significantly improved during the FT period.

other important comments: Not stable yet, so will continue. We mostly do FT in the weekends when practically possible. Besides normal vitamins etc. i'm adding fibre supplement, Inulin and resistant starch that feeds the new bacteria.
Posted 11/8/2016 6:45 PM (GMT 0)
Hi Sharron,

Sorry for the very delayed reply! I got a HW update and meant to check but somehow it totally slipped my mind until now.
about the testing -- I was able to finally get my donor's stool run -- I got the results back a couple days ago and good news: all the tests came back negative:) Right now, I am trying to get my hands on some empty 4oz enema bottles and then am planning on starting the infusions asap.

I actually had a small question related to the nitty gritty of the procedure, as I am now trying to get all the materials together -- I was wondering if you know whether it's ok to clean the enema tube using tap water, since in the US it has chlorine in it, and my (maybe OCD) thought was that some trace amounts of it on the enema bottle might affect the microbes. I am going to use distilled water as per the POP guidelines for the actual infusion, but just figured I'd be extra careful if you or anyone else knows if that could be an issue at all.

I hope you are continuing to do great!

Also, good to read about everyone's progress and positive signs.

Best,
T

Post Edited (poopme) : 11/8/2016 11:46:25 PM (GMT-7)

Posted 11/10/2016 11:49 AM (GMT 0)
Hi all
Just a quick update.
After doing FMT's whenever it was convenient, we learned that the healing was not yet good enough to follow this procedure. After 2 days of break the good results lingered.

Therefore, we decided to go more "all in" and do FMT everyday for a while.
We have done so for a week now, and it really rocks. I'm mostly on 1 BM/day, but sometimes 2.

For three consequtive days now, I've had 80% solid stool.
Once in a while, one of the stools has blood in it.

So still, we are not there yet - but hopefully well on the way.

p.s. Still using Inulin, Fibre supplement and resistant starch to boost bacteria colonization.
pps. The total FMT count is now 15 the the course of a month.

BR,
Jesper

Post Edited (Jesper Poulsen) : 11/10/2016 4:57:17 AM (GMT-7)

Posted 11/12/2016 8:57 PM (GMT 0)
Hi all, I'm still doing well. I'm just after another short virus or something like it, which had a bad effect on the BMs, and now so happy to learn that my new little adopted friends in my colon have handled it well. Just to be clear, I'm not cured of UC yet, but so much better and without any medication. Thank God and a special thank to my great two generous donors.

Jesper - I've added you to the list of 'in progress' and I hope to move it up to the top list soon. For the time being I've just quoted what I wrote and will make it shorter once you are ready to summarise your experience. Well-done for your perseverance albeit partial results. It took a few months and 2 donors for me to realise that I'm in the right direction.

Poopme - Great for donor's result! I use tap water to clean my enema kit and everything else and distilled water for the enemas. I also used to leave everything soaked in tap water and lots of coarse salt between infusions. I've never even checked whether there is chlorine in the water here, in Israel. And, don't worry about your OCD, you definitely need some of it for the FTs ;) You can always call me again if you want to talk more about the process. I'm praying that yours will be another success story.

Lastly, Twiggs and Nenuss, you are still on the 'in pregress' list. If you read this post please let us know how you are getting on. I think it is very important to have as many participants as possible.

Best wishes,

Sharron

Post Edited (sharron19) : 11/12/2016 2:05:46 PM (GMT-7)

Posted 11/12/2016 11:19 PM (GMT 0)
Sharron,

Thanks so much -- that makes sense, and that is what I figured but just wanted to be safe. I've got my enema bottles, am eating a low fiber diet to prep for the first couple infusions and am waiting on my donor for the first "batch":) So hopefully any day now. I will keep you posted.

And yes - I know it's good to have things exact although I'm also hoping that the FTs will put a dent in the OCD too.

Also I'm really glad to hear that you're little adopted friends are stable! I too am hoping you're completely UC free soon.

Best,
T
Posted 11/15/2016 4:40 AM (GMT 0)
Dear Pete,

Thank you so much for your post. I'm always so happy to hear from you and to know that this method has worked so well for you. You inspire us and give us all hope for the future.

I've updated your entry on the list. Now, after your success is long lasting, could you please let me know what would be the most accurate words to write as the 'current condition/results' and also what would be the best words that summarize your therapy process (in term of frequency. especially in terms of number and frequency of infusions). I will just copy-paste your words, as this is an experiment that we, all the participants, conduct together.

Best wishes to all of you and a special good luck to Jesper and Poopme who are at the beginning of this path!

Sharron

Post Edited (sharron19) : 11/17/2016 11:52:20 PM (GMT-7)

Posted 11/21/2016 7:24 PM (GMT 0)
Hi all
Just a quick update.

Still doing FMT's close to daily. Yesterday we made FMT #23. Due to work, we won't make it today.

It's now been 12 days since I last saw traces of blood in the stool.
I am currently having 1-2 bowel movements each day, with very close to perfect stools (actually, today I had a perfect "morning stool" and a perfect "evening stool").

Today I feel super great. Has facilitated an 8 hour workshop and don't feel as mentally drained as I use to.

Conclusion: This stuff is working - but I will continue a bit more to be sure that I'm in a fully self-sustainable condition before we stop FMT's.

Will check in later. Happy FMT'ing to the rest of you!

BR,
Jesper
Posted 11/22/2016 4:21 AM (GMT 0)
After doing the FMT, what are you guys specifically eating to promote growth of the transplanted bacteria? I currently do the SCD and I'm afraid it won't be good if I do FMT since it tends to starve out all bacteria. Although SCD beans might be good since it has resistant starch.
Posted 11/22/2016 8:11 PM (GMT 0)
I have been taking VSL#3 DS daily ever since my FMTs in 2012. I also still take lialda because my doc said it has a coating affect and they find it reduces cancer. I strongly believe the VSL is an integral part of my treatment plan. Even though my insurance doesn't cover it, I go ahead and bite the bullet.

I'm getting a colonoscopy in January. My 2nd colonoscopy. First one since 2011 diagnosis. I'm a bit nervous and sad that this starts my lifelong colonoscopies of every 1-2 years.
Posted Today 8:04 AM (GMT 0)
Bruce36:

In my view, the challenge with SCD, paleo etc, is that it can turn into a low-fibre diet - at least it did for me.
The bacteria you transplant has to have something to eat - otherwise they won't colonize. Dietary Fibres is super important here.
FMT is the pro-biotic, fibres is the prebiotic. Both things need to be in place for the system to function.


I use, on a daily basis:

- Inulin (Gut bacteria loves this, and they produce Burytate from "eating" it. Butyrate is a crucial factor in healing, and the lack of it may be the reason the gut breaks down)

- Husk (also a fibre for the gut to eat)

- Fibre supplement (FibreSmart)

- Resistant starch (also a source of butyrate. I use Bob's Red Mill - Potato Starch)

- Fiber-rich veggies (peas, onions, broccoli, avocados etc.)


In the morning i make a green smoothie with spinach, peas, avocado, apple, ginger and almonds (+ inulin, resistant starch and fibres)

For lunch, veggies with some protein (served at work, so not fully in control here)

For dinner, lots of fibre-rich veggies + fish or chicken.

Before bed, a mix of the fibers mentioned above in water.

BR,
Jesper

Post Edited (Jesper Poulsen) : 11/28/2016 1:09:03 AM (GMT-7)

Posted Today 11:18 AM (GMT 0)
Very useful information from LoLil and Jesper!

Bruce 36:
I just want to add that in my opinion it is crucial to listen to one's body when trying to answer such questions. Although we've all been given the diagnosis of UC it is by now quite obvious that in many ways we are very different from each other with regards to this title. This also includes the way we react to the fecal enemas. From me it was a very slow process and for a long time a huge struggle to just keep it in. Therefore I had to carry on with the low fiber diet and to continute avoiding the food which had known to upset my gut for a very long time. I used to lie on my back on the sofa with my buttocks raised on its arm for hours after every enema. Sounds crazy but eventually it's worked so who cares! I slowy introduced the good food for my new little adopted friends.

Great to see this tread becoming more alive lately!

Best wishes,

Sharron

Post Edited (sharron19) : 11/28/2016 4:50:57 AM (GMT-7)

Posted 11/30/2016 11:45 PM (GMT 0)
Hi Sharron and everyone,

I wanted to give an update. I started the FMTs a couple weeks back.
Unfortunately, I have a bit of an issue which is that my donor -- who is a toddler -- doesn't go every day. In fact, she sometimes goes 3 days without a BM. I thought that maybe the parents weren't delivering every "shipment" or didn't know that I needed it everyday, however it appears that she's just not a frequent producer.

It looks like the frequency of her BMs is not in line with the "1-2" initial microbial punch that most FMT-ers recommend. I know that there were some studies, like Moayyedi's, that did infusions only 1/wk (for 6 wks), however most DIY-ers and other Docs recommend a higher initial frequency.

For the record, I've done 5 FMTs since 11/13, not including a small initial trial one to make sure I didn't have a reaction. It's hard to tell what kind of impact it's had since my BMs have been in a relatively better state recently, thankfully. My BMs are generally pretty hard but I have a small amount of blood which comes and goes -- possibly b/c because it's sometimes hard to pass as I've been eating a super high fiber diet which I credit for this better state - it's good to see others have benefited from this as well.
However, there seems to be a change in my BMs' smell and texture after the FMTs so maybe something is happening.

So... I am trying to figure out where to go from here.

One option would be to buy a little freezer. I just called open Biome and asked them abt their protocol for freezing samples. They said they freeze within the day from collection time and it goes to -80C˚, however they do allow receiving physicians to freeze at -20C˚. I found a -20C˚ one online for $200. This would allow me to stock up on say 10, and, assuming she goes every third day, do 15 daily initial infusions.

Otherwise, I guess I will have to find another, or maybe supplemental donor.

It's a bit of a drag b/c I already trust her stool and had it tested. On the other side though I know that fresher is generally better.

Has anyone had experience with freezing or have any other ideas in general?

Thanks so much!
PM

Post Edited (poopme) : 11/30/2016 10:17:26 PM (GMT-7)

Posted 12/4/2016 6:40 PM (GMT 0)
Congratulation poopme for starting FMT. You'd been waiting to get the right donor for a long time. I hope you achieve a complete cure!

The freezer is a good idea. I also contemplated it in the past but somehow I've managed without it. I'm so much better now. I think I hardly need the infusions but I will try to do them once every few months or so just to be on the safe side. I probably can only benefit from it.

I think if I were you I would just use the toddler's fresh stool and at the same time look for another donor. If there is no improvement with the low frequency you can always try the your freezing method.

Also, I would like to add you to the 'In Progress' list. I you are happy about it, please summary the detail according to the 8 criteria mentioned above the lists on page 15 of this thread.

Best wishes,

Sharron

Post Edited (sharron19) : 12/5/2016 3:50:14 AM (GMT-7)

Posted 12/7/2016 2:28 AM (GMT 0)
Sharron, I am so glad to hear that you are doing that well. It makes me happy to know that you're in this new stage -- I'm wishing that all of this becomes just a distant past phase of life.

I'm not sure about the freezer.. I feel like fresh is best - I had wanted to ask the mother or father of my donor if they'd be willing before trying the freezer.. but it's a little hard to ask + I haven't seen them in a week or so.
However, I spoke with the nanny yesterday and she took my phone number, and hopefully this way it will be more direct communication -- I got a diaper yesterday and today. So we'll see. If I can get the weekday diapers from the nanny everyday or close thereto, then that might be okay.

I also scheduled an appointment with Dr Brandt this week, so I'll go over this with him as well.

Regarding the "In progress" list:

1. age at the beginning of fts: 34
2. sex: M
3. diagnosis: UC, up to 70cm
4. donor's sex/age/relation to you: F. 2.5y/o. No relation to me.
5. fts:date(from to)/number/frequency: 7 infusions from 11/13/16 - 12/6/16
6. medication before during and after fts: Lialda - 4x1.2g + Rowasa + abt 3X(450 CFU VSL Sachets)/day
7. other information:
8. results: so far nothing major, possible change in bowel texture/smell however too infrequent infusions to tell

Best to you,
PM
Posted 12/8/2016 2:11 AM (GMT 0)
Update here:

I just saw Dr Brandt -- it's great to see him and talk to a real person (and expert) after just researching FMT on my own. It feels optimistic and that all this is heading somewhere.

He said that I should be using spring water instead of distilled as the latter is hypotonic and can result lysing the bacteria. So will try that going forward.

about the freezing question it seems hard to say now that there was just a case study that used sterilized fecal solution for c. diff (basically they took a fecal solution as used in FMT, but killed all the bacteria in it) and that was still effective in curing it -- The plot twists of UC and FMT are about as good as any psychological thriller I've seen recently.

We talked about using more than one donor, for example my donor's parents. I would have to test them though. I'll have to feel it out and see if I can ask them or maybe someone else in my building.

There's also a trial coming up at Mount Sinai (starting next year?) but not sure how soon exactly it's going to start. I wasn't really considering that, but having access the "super-donors" of open Biome might be worth it.

PM

Post Edited (poopme) : 12/7/2016 7:26:54 PM (GMT-7)

Posted 2/6/2017 4:40 PM (GMT 0)
thanks for the update OC - so good to hear things are going so well for you - nice that it's been an almost systemic response , and that other nagging "insults" have been negated - just awesome !
Posted 2/8/2017 10:24 AM (GMT 0)
Hi
Great to hear all the progress in here.
Here's a quick update from Denmark.

Around 10th of December, at FMT #27 I think, everything was going really well. We actually stopped the transplants. Not by deliberate choice, but because everything was completely normal with me, so one day took another without the urge to do transplants.
During Christmas I ate everything with no real consequences. Chocolate, coffee, christmas dinner, beer, wine.
"this stuff really rocks" I thought.

I kept trying my luck, and new years eve I again consumed all kinds of stuff, including Vodka and Gin. This was too much, and a couple of days later I was back where I started.
(Can you imagine how much I hated myself to fool around with my health now that I finally had defeated 10 years of CU? We humans tend to forget too quickly).

So we started the FMT's again, but irregularly as I was on some business travels without my GF (donor).
The FMT's did not really help me this time. Kept having bloody diearrea.
So revisited Briggs protocol who underlines the need to be in a steady state without too much inflammation when doing FMT. Maybe that was the answer to the lack of success.

So turned to an almost entirely "cold white rice" diet for the past week to calm the intestines. This has given me relief, and most days I only go once or twice, and without blood. Since i don't get much fiber, my stools are quite small.

So now I think I'm ready to restart the FMTs and introduce some fiber at the same time.
I am very confident I can reach a stable state again.

ps. I've mentioned very red skin around my eyes earlier in this thread. Since christmas I've totally cut out all citrus fruit and it had an immense effect. I never have the red skin/puffiness/eczema anymore. Even when i have a down-day stomach-wise.

All the best. Jesper
Posted 4/17/2017 3:29 PM (GMT 0)
Hi again, sorry, I had to take some time off and enjoy life away from this thread. I've just read some of my old posts and remembered the long uncertain way I took with the Fecal Transplants and am so happy I hadn't given up too early to learn the great success of it.

I have not had another transplant since the last one in June 2016 and I am doing well. Had I known about this treatment from the beginning of the symptoms I could have saved myself many years of misery. It's a thought I
had when reading the post. I usually don't think this way and simply enjoy and appreciate the present.

Another great thank to my lovely two donors and your great support and encouragement.

Wishing you a complete recovery and CURE

Post Edited (sharron19) : 4/18/2017 9:46:50 AM (GMT-6)

Posted 4/18/2017 9:19 AM (GMT 0)
Hi Sharron
So great to hear that you are living life!

After my down-period after new years eve I have had a couple of months with ups and Downs. But now I am now on top again.
Solid stools and no blood. Last week I did not have a BM for 2 straight days. Insane.

We did some follow-up FMT's in january and february, but none after that. But everything has been great for a couple of weeks now.

Have a doctors appointment at the end of april, including blood test - looking very much forward to the result.

/Jesper
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