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Fecal Transplant - I took the plunge! PART III

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Posted 12/7/2009 8:47 PM (GMT 0)
Ok, folks, let's please start a new thread here!  Below is a link to the last page of part II.

https://www.healingwell.com/community/default.aspx?f=38&m=1647007&p=4

 

Posted 12/7/2009 8:57 PM (GMT 0)
Dr. A: How is this working for you now, what medications are you on (were you on), were you flaring badly??? You didn't use antibiotics so you were not concerned about having to clean out your "bad" bacteria, as Dr. Borody suggests?

subdued: I see now that you posted FT put you into remission another time for two years. What medications were you on and how bad was your flare that you wanted to try this? How many infusions did you do to get into remission. I'm on 80 mg steriods so I imagine that I would have to do this over several weeks in order to taper the meds; this is an involved procedure so I want to get it right. Thanks. I'm also on 100 mg imuran and I would be scared to get off that again; I'm concerned to be on it too though honestly.
Posted 12/7/2009 10:08 PM (GMT 0)
Hi Burli, no worries! I get the ABX prescription from my family MD. It is obviously necessary to have a doctor prescribe them. Although a GI is not prescribing them, I do have a GI, which is also important. I filmed the interview in Australia. Long story, but i went to do FT there at the clinic, but ended up not because i was at the time on anti-MAP and doing well (i may have CD and UC). Anyways, right now my flare is UCish, so looking to the FTs.

Subdued, which sites have the other FT patients been posting at? I agree with you about inflammation. I currently have active inflammation, but trying to reduce it with cortifoam enemas and 40mg hydrocortisone - so far the cortifoam has brought it down considerably. I am hoping to dodge a dose of prednisone, as I have taken it the past two falls.
Posted 12/7/2009 11:29 PM (GMT 0)

Burli said...

subdued: I see now that you posted FT put you into remission another time for two years. What medications were you on and how bad was your flare that you wanted to try this? How many infusions did you do to get into remission. I'm on 80 mg steriods so I imagine that I would have to do this over several weeks in order to taper the meds; this is an involved procedure so I want to get it right. Thanks. I'm also on 100 mg imuran and I would be scared to get off that again; I'm concerned to be on it too though honestly.


I waited a long time to see a GI due to insurance reasons. When I did finally get to see a GI, I was in really bad condition, extremely dehydrated, anemic, and very inflamed-so inflamed in fact that he was in a panic to get the inflammation down as soon as possible. Colazal and 40 mgs of prednisone reduced the flare substantially. However, every time I reduced my dosage to 25 mgs, the bleeding would come back. I had been on prednisone for almost three months, and I had read that three months is the cut off period for such a dosage. After three months, there is a much higher chance of getting bad side effects from the medicine. So I looked into other methods. I read about fecal transplantation on another forum, looked up information about it, and did it at home. I neither had the money nor the time to go to Australia to get it done. My daughter came for an extended weekend. I used the poo from my granddaughter who was six months at the time. She went very little, and I was afraid it wasn't enough. However, it took only three times over three days for the bleeding to stop. My daughter and granddaughter then went back to their home. I completely tapered off prednisone in about one and a half weeks. I wouldn't recommend tapering that quickly though. I got some bad side effects from doing so.
Posted 12/7/2009 11:41 PM (GMT 0)

chocolate_stains said...

Subdued, which sites have the other FT patients been posting at? I agree with you about inflammation. I currently have active inflammation, but trying to reduce it with cortifoam enemas and 40mg hydrocortisone - so far the cortifoam has brought it down considerably. I am hoping to dodge a dose of prednisone, as I have taken it the past two falls.

Hi Chocolate Stains,

It was before I found this site. There is a guy named Sheldon who advocates using Vitamin E enemas for reducing colon inflammation. I had bumped into that site and read about fecal transplantation from another post and then followed that post... It seemed worth a try, considering how many times I've been on antibiotics. So I did fecal transplantation, and I too "disappeared." It wasn't until I had to be on antibiotics again and got another flare from the antibiotics after I thought I was "cured" that I found this site. Since then, I've been for the most part only on this site. There are times I will search for something, find another forum, post something only to never post again due to a lack of activity. I didn't disappear this time after getting into remission mainly because there are so many people reading this forum and so few who have tried fecal transplantation.
Posted 12/8/2009 5:50 AM (GMT 0)
subdued:
I remember Sheldon, did you try his vitamin E enema's? Did they help?
There is another guy who does garlic enemas. Did you try those?

It's great you are sharing this experience. So you were not severly inflammed when you did FT as you said you were stable at 25 mg but would bleed if you reduced. I wonder if I'm too inflammed right now to try it. I'm afraid of getting worse.
Posted 12/8/2009 6:26 AM (GMT 0)

Burli said...
subdued:
I remember Sheldon, did you try his vitamin E enema's? Did they help?
There is another guy who does garlic enemas. Did you try those?

It's great you are sharing this experience. So you were not severly inflammed when you did FT as you said you were stable at 25 mg but would bleed if you reduced. I wonder if I'm too inflammed right now to try it. I'm afraid of getting worse.

Nope. I never tried his Vitamin-E enema approach, mostly because, if I remember correctly, he uses a ton of Vitamin E and he has to always do it. Moreover, he is treating the symptoms of the disease, inflammation, not the disease itself--that is not unless he has UC due to a Vitamin E deficiency, which I don't think I have.

My approach for treating the symptoms of the disease is to add turmeric to my food, drink ginger tea for inflammation, only consume anti-inflammatory foods, not eat anything high in fructose or containing artificial sweeteners, and take probiotics. I try to adhere to this for maintenance purposes. I hope that I will have less chance of another flare if I do. I also try not to take antibiotics unless I absolutely have too.

Nope. I never did garlic enemas either for the same reason. Garlic is anti-inflammatory. I rather add it to my foods. Besides turmeric and ginger are even more anti-inflammatory than garlic.

Actually, I was stable at 30 mgs. The bleeding would come back at 25 mgs. But yes, I was not severely inflamed at the time I did fecal transplantation. Moreover, the inflammation was contained in the left side of my colon.
Posted 1/13/2010 8:12 PM (GMT 0)
I've been reading the FT threads with interest and hope some of the folks who have done this are online to respond. I did quite a bit of research on this several months ago and am ready to give it a try. Here's my situation:

I was diagnosed with UC in May 2006. My initial symptoms were painful bloating, gas, cramping, and constipation, then blood and mucus for several months before my dx. Sulfasalazine worked for about a year. In mid-2007 I started the SCD diet, which worked amazingly well for me for almost 2 years and I was completely off meds. In spring of 2009, I had some outpatient surgery with IV antibiotics and ever since then, I've had problems with bleeding (a symptom I've never had problems with since my initial diagnosis). Canasa suppsitories stopped it for awhile but after a few months, it came back and the Canasa didn't help. I tried the Vitamin E enema protocol, which helped but the blood started as soon as I stopped them. I've started them again but they're not helping (and as posted, it doesn't really get to the root of the problem in any event).

I had to stop all my probiotics (SCD yogurt) and rectal meds to get stool testing done at Genova Labs (which results came up generally fine, except for low levels of beneficial bacteria), and since then, the bleeding has gotten slightly worse.

My husband is willing to be my donor, and we've had his blood and stool tested and he's healthy. I have an integrative doctor who supports doing the FT, but he'd like me to get the bleeding under control before doing the FT. I have some Cortifoam and was going to give it a try to see if I could stop the bleeding before doing the FT, but reading the posts of those of you who have done it, it sounds like many people did the FT with active bleeding.

Do you think it's okay to go ahead and do it with bleeding? Mine is not profuse, I'd say at the worst, I see maybe 1/4 teaspoon of blood with my morning BM. My stools are really perfect, and I only have 1-2 BMs per day.

Kathy

UC since 12/05, dx 5/06

Following SCD since 7/07

Currently on sulfasalazine 2 g/daily

Posted 1/14/2010 12:41 AM (GMT 0)
I was bleeding a moderate amount when I did fecal transplantation. Not profusely though. about the amount when I have my period.

Good Luck! I'm hoping more people will have success with fecal transplantation.
Posted 1/14/2010 1:00 AM (GMT 0)
Thanks subdued. I'll keep you posted. The logic makes so much sense.
Posted 1/16/2010 10:23 PM (GMT 0)
Fecal transplant update:

I have been having consistent, moderate bleeding for several months, but very regular, formed stools. I'm on the SCD but no dietary adjustments seem to affect (help or hurt) the bleeding. I'm hoping this will help.

Thursday 1/14 - performed first transplant using my wonderful hubby's donation. Tried the "mixing in the ziploc" theory using just plain distilled water (no saline). Hubby had eaten a bunch of almonds on Wednesday so I had a lot of clogging problems - like others have said - you have to laugh or you'd be crying! I was able to get about 1/2 an enema bottle in (apx. 2 oz.).

Friday 1/15 - Had a normal BM, a little looser than normal, and moderate blood. Performed second transplant and this time I tried using a strainer. That was pretty disgusting so I decided to sacrifice an old blender for Saturday. Inserted about 2 oz again. Friday late afternoon, I started getting crampy and my gut felt hard. I didn't bloat as I've done with cramping in the past. Throughout the night, I had a lot of intestinal activity and felt rectal pain.

Today (Saturday) - Had two BMs with formed stool but more blood than yesterday. Used the blender for the transplant, which worked much better. Got closer to 3 oz. in today. about 3-4 hours later, I passed a very small bit of stool that looked just like hubby's (weird), and about an hour after that, I felt crampy and passed about a tablespoon of D and blood.

My system is definitely active and at this point, I'm simply keeping a wait-and-see attitude. I'm so hopeful that it will help, but so far my system's response seems like it's not real happy about it. I'll keep you all posted.
Posted 1/17/2010 12:40 AM (GMT 0)
s2kredhead: If SCD worked for you then why would you choose FT over SCD?
Posted 1/17/2010 12:57 AM (GMT 0)
Hi Burli -

SCD worked great until I got some IV antibiotics for an outpatient surgery (unrelated to my UC) in March 2009. Since then, I've had this small amount of bleeding that won't go away. It went away for a few months after using Canasa but then randomly started again the end of August. I tried changing and eliminating various foods/food groups within SCD, using Canasa, and finally used Canasa and Vitamin E enemas, which stopped it again. Then I had to stop the Canasa, Vitamin E enemas, and SCD yogurt for several days to prepare for a stool test from Genova labs. The bleeding came back again, even worse, and I haven't been able to stop it since then. I was going to try Cortifoam but figured I'd just jump into FT.

I'm still following the diet because I believe in the science behind the diet. I feel like there's just some bacterial imbalance that is causing the bleeding that perhaps FT will rectify. Of course, it's also pretty tempting when I read about people that have had luck with FT and can now eat anything they want. I think the diet is great, but it sure would be nice to eat true ethnic food, pizza, the occasion nice dark chocolate ...
Posted 1/17/2010 1:34 AM (GMT 0)

s2kredhead said...
I was able to get about 1/2 an enema bottle in (apx. 2 oz.).

Is that the amount that is recommended? When I did fecal transplantation, my granddaughter was only six months old. She didn't go much. I was able to get only between one and two syringes worth and half of that was water. That's a much smaller amount than 2 ounces. Perhaps, your system won't complain if you use less.
Posted 1/17/2010 2:06 AM (GMT 0)

subdued said...

Is that the amount that is recommended?

I actually have the home infusion instructions from Dr. Borody and it says to mix the stool with 100-400 ml of saline - and 100 ml is just over 3 oz. Given the gazillions of bacteria, you may be right that (especially since I'm doing it 5 days in a row) perhaps a smaller amount would be okay. I'll have to see how tomorrow goes!

Kathy (guess I never put my name in yet ...)

Posted 1/17/2010 2:50 AM (GMT 0)
s2kredhead:
You think the diet is great but you're not eating what you want to eat. Ethnic food is so great and I eat a lot of it with no troubles. The science behind the SCD diet is junk I found out. I ate pizza too...everything, and stayed in remission, med-free for several years...Then I got mono and had a massive flare. That was early on in my UC years. I went in and out of remission like that, eating what I wanted and staying in remission, med-free and only going into a flare when I got something bad (food poisoning did it another time). My point...start eating the ethnic food you enjoy and punt the SCD like I did (I tried it, twice). You'll be much happier and you'll realize that the diet you were sold in that book just made your UC more miserable by making you avoid foods you enjoy.
I'm all about probiotics and FT makes some sense to me but the SCD...not.
I do think you should avoid foods that you know don't agree with you but don't make a bad life worse.

Good luck.
Posted 1/17/2010 3:24 AM (GMT 0)

Hi all

Have been reading about others' experience with FT, and just wanted to add to the discussion about what quantity to use.  Kathy, you haven't mentioned how much stool you collect prior to mixing it with saline.  I also have the home infusion protocol, and have only noticed now that I have gone back to check, that it doesn't mention how much stool to use!  I had already done quite a bit of research before receiving the instructions, and one of Dr Borody's previous papers mentioned that they use 200-300gm of donor sample mixed with 200-300ml of saline. He does also mention that other studies have documented using varying amounts between 5 and 300mg of donor feces.  Quite a range!!

I started doing FT's several weeks ago, and had significant and immediate improvement after completing the 5 day treatment regime. The first 4 days after completing the treatment were perfect! By day 5, I noticed some blood on the toilet paper again, and stools became less formed. It was suggested that I might need to continue to administer the enemas weekly for maintenance thereafter rolleyes .  However, I found that my symptoms would start to return about 2 days after an infusion.  I was therefore doing infusions every second day.  I am now down to every three or for days, tending to do an infusion even before any symptoms appear, feeling healthy and more confident that I am getting to a point where I may be able to stop altogether before too long.  Whilst doing the infusions, I have been tapering off of a 75mg starting dose of prednisone, and am now down to 7.5mg with no other meds.

I have attached a link to the paper by Borody where he talks about quantities to use.  Personally, I find the large volume enemas more beneficial, although it can seem quite daunting initially!!  Not necessarily suggesting that you should change the way you are doing things though, Kathy- if you are finding it uncomfortable, then starting small might be a better idea in you case.

I hope you have success with the treatment.

Amygrace

http://www.cdd.com.au/pdf/paper12.pdf

Posted 1/17/2010 5:29 AM (GMT 0)

amygrace said...
I found that my symptoms would start to return about 2 days after an infusion. I was therefore doing infusions every second day. I am now down to every three or for days, tending to do an infusion even before any symptoms appear, feeling healthy and more confident that I am getting to a point where I may be able to stop altogether before too long.

Amygrace

Hi Amygrace,

It sounds like the additional bacteria from the fecal transplantation is helping but that the bacteria are not taking hold and multiplying. As a result, your symptoms return after a few days. Hopefully, doing additional infusions will help the bacteria to multiply. Good luck!
Posted 1/17/2010 7:38 AM (GMT 0)
It also sounds like the results from other enemasL:garlic, vitamin E, mesalamine.
Posted 1/17/2010 9:52 AM (GMT 0)

Burli said...
It also sounds like the results from other enemasL:garlic, vitamin E, mesalamine.

Yep. If the bacteria aren't multiplying, the treatments would help but won't have any lasting effects.
Posted 1/17/2010 10:03 AM (GMT 0)
I'm more thinking the formed stools maynot be due to introducing doner bacteria only that you gave yourself and enema.
Posted 1/17/2010 11:46 AM (GMT 0)

Who knows?  Personally, I'm inclined to think that the more frequent infusions have assisted by giving my colon a chance to become less inflamed (because my symptoms are relieved), and that, over time, this has allowed the introduced bacteria to colonise.  I am 4 days post infusion, and not experiencing any symptoms at all yet.  And as I said, apart from a very low dose of steroid, am not on any other meds. For the first time in 4 years...

BTW, the effects of these enemas are quite different to the effect I get from mesalamine enemas.  Much more measureable improvement.  And the mesalamine enemas were totally useless during this particular flare.

Good luck to everyone, with whatever treatment they choose to use!

Amygrace

Posted 1/17/2010 3:23 PM (GMT 0)

I am drawing back to posts I recall in here where many have given themselves all sorts of enemas and reported great benefit. Some would go to great lengths to cook up batches of stuff each night while others would break open many vitamin E capsules. I would love for someone to try just a straight saline enema. I'm wondering if you would get similar results. It would definitely be a lot easier but would crush the theory.

What a mess this seems to be. I'll stick with the VSL#3DS and load beneficial bacteria more slowly...I'm not reading compelling evidence from this thread to want to try it. It seems only a few people out of many had success...

 

Oh, I threw the mesalamine enema in there as that's really my only experience with enemas...other's have not reported the connection...I should have left that off my earlier post.

Posted 1/17/2010 4:56 PM (GMT 0)
Like I said before Burli, fecal transplantation worked immediately for me, whereas diet and probiotic transplantations took a month and a half to get me in remission. A pure-water enema might help reduce inflammation, but it's not going to be as effective as it would be if I added probiotic powder or poo to it.
Posted 1/17/2010 7:13 PM (GMT 0)

amygrace said...

you haven't mentioned how much stool you collect prior to mixing it with saline. 

Hi amygrace - The stool-water ratio is probably 60% water and 40% stool. I'm just using plain distilled water because I don't see the value of adding salt even though that's how the Borody team does it. I mix up quite a bit more than I use just to make sure the blender has enough volume for the blades to turn. It does seem like there is a big range in amounts people have used. In my case, I'm not terribly worried about getting it really far up into my colon since my inflammation is very localized to the end of the rectum. I'm sure that's why I don't have any issues with my stool formation or having too many BMs like others who have UC throughout the colon.

I'm still bleeding but my gut didn't get crampy or seem as reactive to yesterday's infusion. I'm sure the colon is thinking, "What the heck! I already extracted all the water and made stools, why do I have to do this again and why is this stuff coming in from the wrong direction???" LOL!

In the Borody information, it said that the subjects showed improvement within 2 to 2-1/2 weeks after the infusion. I'm thinking that bleeding ulcers take time to heal, so I'm not going to get better overnight. One more day to go ...

Kathy

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