Fecal Transplant - I took the plunge! PART III

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IChaseFrisbees
Regular Member


Date Joined Nov 2009
Total Posts : 32
   Posted 7/6/2010 7:32 PM (GMT -7)   
Hi Lynn, picked them up at Walgreens for around 3 bucks I think but I'm trying a hanging bag style kit today as the disposable ones aren't as easy to use as I would have liked. They're little squeeze bottles and they're not designed very well as far as being able to use the entire bottle.

Hope this helps!

Queen of the Colon
Regular Member


Date Joined Dec 2009
Total Posts : 143
   Posted 7/7/2010 5:03 AM (GMT -7)   
Hi I reckon Subdued has it bang on the head:

the bacteria are helping but not taking hold and multiplying

maybe you have to clear some space for them in your colon first.

prepare the ground for planting as it were. Till the soil then the seedlings can take hold.

So what *I* would try would be to take an anti-fungal tablet, like the over-the-counter single dose thrush medication. That will clear some candida albicans out of there.

That and maybe fast for a day before you do the fecal transplant enema

so there is nothing going to clear that stuff out of there.

Then do the FT and rest, lying down, keeping that fluid up there as long as you can

and take a whole load of probiotics of as many strains as you can, every day for about a month (this really helped me)

Maybe that will help the new bacterial mix to take hold and actually stick to the mucosal lining of your gut.

GOOD LUCK
Female, 36. Diagnosed December 2009 after 4 months of pain, blood and mucous.
sulfasalazine prescribed but never taken as my flare went away with small liquid meals, probiotics and vitamins.


killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 7/7/2010 5:23 AM (GMT -7)   
I agree with QOTC, but instead of an anti-fungal tablet, I'd do Jini Patel's wild oregano protocol for a few weeks (phase 1) instead of the abx. This thread is very helpful. Thanks to everyone for posting your experiences of this procedure. I do think this is the way forward of UC treatment in general and judging by those on the board, it's pretty successful in it's most rudimentary form (Barody's home protocol is much more complicated).

runcycle
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 7/7/2010 7:57 AM (GMT -7)   
Hi idkwia. Things are still fine with me. I completed 10 straight days of infusions and I'm feeling pretty good. A couple of days after the infusions, I noticed a little blood on the TP, but the next day it was gone and hasn't come back. My arthritis is not completely gone, but it still feels a lot better than it used to. It might just take a little more time to resolve itself. I'm optimistic.

I'm considering performing another 5 days of infusions to see if it has any effect on my remaining arthritis.

IChaseFrisbees
Regular Member


Date Joined Nov 2009
Total Posts : 32
   Posted 7/7/2010 12:35 PM (GMT -7)   
Hi all, bad news this morning (what would have been day 4) as my donor got a stomach virus last night. We did the transplant at around 7:30 pm, I'm just hoping I didn't catch it from her that way (thus far I don't feel sick.) This looks like it's going to halt the process and probably end it, so 3 days is what I got under my belt.

This morning I had what appeared to be further signs of improvement with formation and evacuation and I'm taking these as positive implications for the future.

I also agree with the above post about "tilling the soil," that's quite a good analogy for it. I spent 10 days on a liquid diet (vivonex plus) and took an antibiotic to sort of level the playing field and rest my gut before beginning the transplant, and since then I've been loading up on high fiber fruits and foods like peanut butter and beans, plus taking a prebiotic supplement (prebiotin I think it's called.) Hopefully that'll give the little guys what they need to thrive and take over down there!

I no longer believe that this is a one day miracle cure as I had hoped it might be, but I do still very much believe that it can be a big advantageous step in correcting intestinal conditions and easing inflammation with high doses of good guys.

idkwia
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 7/7/2010 3:21 PM (GMT -7)   
IChaseFrisbees - sorry to hear that your donor has a virus. I think this is a reminder that we must make sure our donors really look after themselves during the donation stage.
I hope that you will do it again once your donor has fully recovered. It is perhaps only reasonable that you have to give the protocol a chance i.e. say 10 days of proper infusion. However, well done for giving it a try and hopefully you will have better luck next time.
 
Runcycle - that is great news well done. Keep us updated with your progress. 

berkuc
Regular Member


Date Joined Apr 2007
Total Posts : 23
   Posted 7/7/2010 3:54 PM (GMT -7)   
Is there anyone here who has gone to Dr Broody's clinic in Sydney for the HPI treatment and can share their expericne? Right now I am doing ok with VSL3 enemas. But I am quite intrigued by this approach to consider going there sometime down the line. I just want to know how long of a trip it has to be if I want to have the procedure done in their clinic.

snowinokinawa
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 7/18/2010 12:27 AM (GMT -7)   
It's about time I start sharing my experiences in this matter of poo, success and suffering.

I had the 10-day infusion done at Prof.Barody's clinic in Sydney last year in November.

Things did not go as well as I had planned due to not having my ducks aligned... and I truly believe that is the secret to success in this procedure.

So now with my ducks hopefully in alignment, starting tomorrow I will attempt a 5-day fecal transplant using my mum as a donor... then the infusions will continue once a week for 6-10 weeks as something called pulse therapy which Barody mentioned to me as being the key the success of many of his previous patients.

My opinion is that the pathogenic bacteria that exists in Ulcerative Colitis behaves in a similar way to parasites, which requires a similar notion of pulse therapy for extermination of the little critters. You see parasites are known to be a regressive species, which basically means if threatened by antibiotics for instance, they can regress into baby form, then into egg form where they are protected. Once the course of antibiotics is complete, they hatch return for the after party. Thats why Doctors (in the know, and many aren't) prescribe an antibiotic like Flagyl for 2 weeks on, 2 weeks off, 2 weeks on etc.

If parasites behave this way, why wouldn't the pathogenic bacteria in Ulcerative Colitis do the same?

So back to my ducks.

Currently, this is what my ducks look like:

DIET: Pro and Anti -Inflammatory foods, FODMAPS, Liquid Diets, etc

MEDICINAL SUPPORT: Immunosuppressants, Messalazine, Enemas, etc

DONOR: Mum, Mum, Mum, want to hear some fascinating microbial sh**?

Did you know when our mothers give birth to us, and we pass through the vaginal walls that we collect the majority of flora during those final stages of birth. Furthermore if you have a Cesarean or are born pre-maturily that we collect the flora from the nurses that handle us. Whoa!

SPIRITUAL: Man, you've got to be in the right state of mind to do this. You need to envision the healing process... I've got a little animation that plays in my head!





Anyway guys, I'm not sure if this forum is even still open so I'll leave it there and if I gain some interest I'll be sure to impart further on my experiences.


Wish me luck.









Lynn4221
Regular Member


Date Joined Jan 2010
Total Posts : 195
   Posted 7/18/2010 6:26 AM (GMT -7)   
Good luck and please keep updating.

How are the people doing who are trying this right now?

Good luck-
L
UC dx in 2008
4g Mesalamine nightly
VSL #3
Nordic Naturals Ultimate Omega x2/daily
Curcumin Plus
Vitamin C 1g/2xdaily
Hydro C and Glutamine in am


killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 7/18/2010 11:16 AM (GMT -7)   
Snowinokinawa,
Thanks for sharing your experience. Did Dr. Barody say how long you had to "pulse" on and off of flagyl before the HPI?

kk217
Regular Member


Date Joined Jul 2010
Total Posts : 43
   Posted 7/18/2010 12:43 PM (GMT -7)   
Hi Burli!
What do you currently use? Are you in remission?

snowinokinawa
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 7/20/2010 5:03 PM (GMT -7)   
Only Day 3 - I have a concern.

My donor is showing signs of slightly softer stools than usual. She's not feeling unwell, nor experiencing any sort of runny tummy. Stools are just not as formed as we last checked.

Mmmmmm.... I've done 2 days and am about to do my 3rd day infusion as long as she produces a formed stool this morning. If it's noticeably soft, I will hold out until they form up again.



I WOULD LOVE SOME HELP GUYS:




In order to keep the inflammation right down and under control, I started a Modulen IBD Liquid Diet 1 week prior to the treatment and will continue with it for several weeks. It's a product specifically designed for IBD patients (in particular Crohns) for reducing inflammatory markers over time. I've also been on a low dos of 6mp (immunosuppressants - 25mg day).

My issue is that I've discontinued my Messalazine Enemas (1per night) and Granules (3g per night) as the ladies and gents at Barody's office said it is an anti-bacterial and can have the potential to interfere.

I'm now getting a little worried that the inflammation could be rising.

If it continues, do I jump back to the messalazine enemas for saving?

VSL#3 Enemas... would that have an anti-inflammatory effect? berkuc????

Subdued? Were you on Messalazine when you did your transplants?

Or anyone else who've had success with this treatment?





I hope to hear from you guys soon.







.............






Killcolitis - I think you misunderstood what I was saying about pulse therapy. Dr.Barody suggested pulsing the transplants... not the Flagyl.

So 1 transplant per week following a 5-day infusion. I just referred to other doctors pulsing Flagyl if there is a parasite infestation.

berkuc
Regular Member


Date Joined Apr 2007
Total Posts : 23
   Posted 7/20/2010 7:47 PM (GMT -7)   
Snowinokiwana,

I am not aware of any direct anti-inflammation effects of VSL3 or other probiotics. To me VSL3 enema is a "poor man" version of the real deal--fecal transplantation. Please keep us updated about your progress. Good luck.

snowinokinawa
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 7/20/2010 8:06 PM (GMT -7)   
Berkuc,

Can you tell me how you go about doing your VSL #3 enemas... and how often you use them?

Are you a UC sufferer? Are you on any other medications?


Cheers

Poo Bare
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/24/2010 8:22 PM (GMT -7)   
Hi Everyone,
I'm new. I'm a 45 y/o woman in Atlanta and the first time I got UC I was 26 y/o. I was sick for 2 years before going into remission. I still have no idea why or how I went into remission... maybe just because I was young and strong...? Anyway, I had 15 beautiful years of remission... and then it came back. July 2008 UC came back with a vengance. I maintained pretty good with just Asacol for a long time until I needed an unrelated surgery in April 2009. I'm guessing the massive antibiotics messed me up because it was down hill after that. Around October of 2009 I was on much greater meds and my symptoms worse (1200 mg Asacol, prednisone, flagyl, Cipro, and Lomotil daily, with 20+ stools per day, mucus, bleeding, cramping, lack of control and urgency) when I decided to go holistic and try to find a cure.
 
I tried lots of diets (and I've read enough here to realize that different diets work for different people. It's trial and error to find what works for any individual.) the first success I had was with David Klien's diet. It took a month, and the diet is so strict I couldn't stay on it, but I stay as close to the guidelines as I could, and after a month I got about 90% well. I had mostly solid stools with occational mucus and rarely some blood. I was also able to get off all the meds except 400 mg Asacol daily.
 
After about 6 months I began to regress in symptoms again, so I searched for another option. I found the Gerson cancer therapy. I tried it because the diet was similar to the Klien diet but also included fresh, organic vegetable/fruit juices and a theory about detoxing the system that at least sounded like it made sense.
 
In 7 days, I was back to 90%, and I was able to get off the last medication. So now I have no meds, no blood, no mucus, and my stools were forming up, but now (3 weeks in) they have turned liquid again. I've had increased stress with final papers due (I'm in grad school), but just the same, I want to be 100% cured!
 
I went back and read this post all the way to the beginning of part 1 and I'm very encouraged. I've been on a low fiber diet for years, so I'm ready to get started. My girlfriend has offered to donate (she's totally healthy and rediculously regular). I'm hoping to start Monday (I've got to finish one more paper first). I'll keep you all posted on how it goes. But first, I want to thank all of you for writing on this threat over the last year and a half. It has encouraged me so much to read about the successes (both long and short). I'm sure I would not have the courage to try something so risky without having read your experiences. In fact, I looked into FT a year ago, but my doctor thought it was too risky, and I decided to try less invasive things. I am very grateful for the improvements I have experienced and I'm sure my improved health will help the donor flora implant and grow.
Cheers Everyone, I'll keep you posted!

Poo Bare
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/25/2010 8:56 AM (GMT -7)   
Oops! Typo - I eas on 1200 mg Asacol x 3 daily and went down to 1200mg x 1 daily, then went down to none.

Poo Bare
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/25/2010 11:22 AM (GMT -7)   
Okay, I just did my first FT, and I have to admit, I was in denial about the gross factor. I had read and read and read about this, but it stayed a mental abstract science experiment. Right up until I was faced with putting someone else's poo in my butt! OMG.
 
Luckily, I've been doing the Gerson Therapy for three weeks which requires enemas of coffee once or twice a day. So I did my best to convince myself that it was just coffee and got through it.
 
It's midday and it's been about an hour. I stayed horizontal for that hour, but I've got to get up and do stuff. I'm gonna do my best to hold this for the prescribed 6 hours.
Later Everybody!

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 7/25/2010 12:12 PM (GMT -7)   
Poo Bare, so funny you say that about the ICK factor because I think I have been in denial myself about how gross it might be. My fiance and I have been talking about it, not too seriously but I was trying to feel him out. I think he wants to do it because he would try anything at this point for me to feel better after the year I have had. Today when he went to the bathroom he said come here and see how normal my poo is, I am a good donor candidate. Just seeing another person's poo and thinking about having to mix it up and do an enema grossed me out!

Now after looking at it, I don't know if I can do it. I'll be interested to see how you do.

How did you mix it up and prepare the enema?
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 20 mg Prednisone, 2g Sulfasalzine, homemade Kefir for my probiotics, Vitamin C, Calcium, Magnesium, D3, B complex vitamin. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.


Poo Bare
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/25/2010 8:55 PM (GMT -7)   
I read the history of this posting from the beginning, and I saw that some people have tried using a fork, others mushing it about in a plastic bag, but the most effective method is a blender.
 
I was not about to sacrifice my good kitchen blender, so I went to the thrift shop and bought an old, used cheapy one.
 
The goal is a 2 cup enema of half saline and half poop.
 
Saline is made with 1 and 1/2 teaspoons of sea salt (no iodine) and 2 cups of distilled water. I warmed the water in the microwave to a little above body temp. (use thermometer).
 
put poo in blender first (to avoid spashing) and saline second. Hit mix til it looks liquified (holding breath is smart too).
 
Then I used the hot water bottle enema bag. ($5 at walmart, target, or drug store)
 
If your colon is enflamed, you will find that warm is better than cold because anything below body temp causes cramping.
also, you may need to start with smaller amounts, like one cup total.
 
I only held this first FT for three hours. But my gut feels very quiet and calm this evening.
 
Also, I've cleaned all the items used today and they are soaking in bleach/water because they have to be reused tomorrow.
 
You may want to start with some other enemas to break the ice. I've heard a warm camamile tea is soothing for an inflamed colon, or just a body temp saline enema. Don't use the premix ones at the drug store. Someone on this list said they have a laxative in them.
 
I really don't think I could have done it if I hadn't already been doing daily enemas for three weeks prior to this.
 
So far so good. I'll let you know how it goes.

DocGP
Regular Member


Date Joined Feb 2010
Total Posts : 183
   Posted 7/25/2010 9:04 PM (GMT -7)   
Did the coffee enemas hurt you or help you?
thanks

Poo Bare
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/26/2010 8:34 AM (GMT -7)   
Just a quick update: I have only noticed small changes in my symptoms so far. My BM this morning was more pasty rather than liquid. And my lower digestive system seems quieter and calmer. I'm sticking to my restricted diet (not changing to high fiber). I will alter my diet slowly (I hope) when I start to see results.
 
I'll be doing the second FT later today.

Poo Bare
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/26/2010 8:41 AM (GMT -7)   
I believe the coffee enemas helped me. But I can't really be sure. I improved so fast that first 7 days I used them, but I also ate the Gerson diet. By the third week, I had slipped from the Gerson diet, was still doing the coffee enemas, and experienced a regression of symptoms. So, it sounds like the diet and juices may have helped more than the coffee enemas.
 
I'm wondering if the coffee enemas may interfere with the FTs by washing out the new bacterial flora. Unfortunately, I'm addicted to the caffine now. I know from experience that drinking coffee or other sources of caffine have been hard on my stomach in the past. Also, caffine pills are harsh. So I'm cutting back on how much coffee vs. water I put in the enemas. I may stop all together and take caffine pills until I can get clean from caffine again.... I haven't decided yet.

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 218
   Posted 7/26/2010 9:49 AM (GMT -7)   
What is his theory about coffee enemas? I have never heard of this
Thanks
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions


kk217
Regular Member


Date Joined Jul 2010
Total Posts : 43
   Posted 7/26/2010 11:42 AM (GMT -7)   
Hey guys! I am strongly considering doing home FT! I want to use my husband as a donor! He has been on the SCD diet with me for just over a week. I was wondering if yall thought he would be a good donor.

He hasnt taken any antibiotics in a couple of years and is rarely sick.
Before the diet, he thinks he was lactose intolerant b/c of gas and very soft stools, occasional diarrhea.

Since he has been on the diet he has normal BM's everyday.
I dont know if I can find anywhere to test his stool or mine, but would consider it if I found a lab where I live.

I would probably do a liquid diet the day before the first FT and then continue with the sCD diet...lots of fiber rich foods, etc.

What do you guys think?

Poo Bare
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 7/27/2010 8:43 AM (GMT -7)   
My donor had "performance issues" yesterday (haha!), so I'll be doing my second FT today.
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