counting success stories with fts (continued)

sharron19 said...
Hi,

Does anyone know about scientific articles which shows the benefit of Bupropion to IBD? (apart from Briggs'). My GP said there is no evidence for it thus he doesn't want to give it to me and risk his licence. Quite plausible he said that if there were it would have been sold to treat IBD.

Also, is 4-5 on Bristol Chart Scale will do? According to the Power of Poop it has to be 2-4.

Any comment would be appreciated.

Sharron

I'm afraid no one is going to fund a double blinded trial on a relatively cheap drug, so there isn't much medical literature on it for UC or CD. It would classify as off-label use since it is an anti-depressant. However, the fact that it is an TNF inhibitor with a good safety profile makes it worth trying over biologics. Your doctor is insane if he is willing to prescribe harsher drugs like biologics and not this one.

There is a plea for more studies. Here's a letter published in the journal the gastroenterology showing a few case studies of individuals with CD/UC improving on it. It is written by scientists. You could print it out and show it to him.

sharron19 -

Thanks for the update.

If the tricyclics aren't working out, I would discontinue them immediately. They are supposed to provide relief, not cause unnecessary side-effects.

It might be possible to ease symptoms without any medications. I would press for the wellbutrin, see how that turns out and then just try other things. Are you familiar with InSoFla's protocol?

She has helped many get into remission with her protocol: it's basically gluten free diet with adjuncts like slippery elm (demulcent like honey that coats the gastrointestinal tract), l-glutamine, vsl3, psyllium, etc.

But yes, you need to eat (with an emphasis), rest and get your strength up before doing any FTs. Is it possible to take some time off work to get your body relaxed?

Best.

Hi Sharron -

The whole idea of taking medications prior/after to the FMT is to calm the inflammation down to allow it to work efficiency. We know that the body will reject many substances when the colonic mucusa is badly inflamed. Some people have used pred, while others have used nothing.

It really depends on the person's situation, IMO. Hurst was awfully close to getting surgery, so he needed something to keep it controlled. For others with less severe cases, they did not need it at all since the inflammation was never really that bad in the first place

It's just something that you'll have to measure and analyze yourself. If your symptoms are so bad and you are bleeding, then something might be needed to help control the bleeding.

I don't entirely agree with the Brigg's protocol, but he is spot on about getting the inflammation under wraps first.

Best.

Sharron -

Here is InSoFla's protocol as written by her:

Some meds work for some and not for others.
For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with worsening its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) food combining
6) diet modification as in gluten and dairy free
7) rectal meds help lots of folks out


The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission.
If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.
I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: www.healingwell.com/community/default.aspx?f=38&m=1666318, and look at the 11th post.
I hope you feel better and let us know how we can help you.

Best.

Sharron -

Thank you for the update. Glad to hear you got the wellbutrin prescription. I hope it helps alleviate any residual issues you have.

I think cutting down the dose or cutting off the tricyclics is a good idea as well, if the side effects continue to be terrible.

I am glad you found a low residue diet that is working. I found rice to be really soothing and fills me up. We do need the nutrition and calories in these kind of stages. Our colons are begging for it... literally... :)

Oh how I wish InSoFla still posted. Unfortunately, some users drove her out because she was too "alternative" and they did not like the concept of not taking harsh drugs for the rest of their lives. She's like the queen of LDN and many have owed a lot to her information. You will find LDN information in that link I provided.

In short, naltrexone is an opiate blocker commonly used for heroine withdrawal. At very low doses (~4.5 mg), however, it has proven to be an anti-inflammatory agent when taken before bedtime. This is partially because it triggers the beta-endorphin cascade responsible for immune function.

People talk like they know what they are saying about LDN and therefore you will get a lot of people criticizing it, but it's effective if followed alongside an anti-inflammatory protocol.

I don't think it's for everyone, but it is sometimes the last bit that people need to go into remission, when nothing else works.

Best.

Elipon said...
Hello all,

After reading these forums for years and years I am finally posting for the first time (and hopefully my last time). I just wanted to share my experience with FMT so far, hopefully to inspire those who are thinking about trying it - I am sorry to those that FMT hasn't worked for yet!

In December I had a colonoscopy and found out my proctitis ulcerative colitis had become pan-colitis. My new GI prescribed Liada. I tried it for a couple months, but when I saw no improvements, i decided to stop. Motivated by severe condition (10+ times a day) and the expense of conventional medication, I decided to commit to the Specific Carbohydrate Diet. I immediately saw some improvement, but it was still a roller coaster ride of emotional stress, and not enough consistent improvement. Some days I was down to 3 BMs a day, others back to 10 and so confused as to what set it off since I was following the diet so strictly.

After 2 months of following the diet rigorously, again I was motivated by my severe condition and researched everything about FMT. Right before taking the plunge, I called my doctor to see if he would support me through this process. Of course he said that there is now way I should do FMT because there is not enough research done. Then he suggested I go on Humira. Ha! No way in hell I was going take that toxic stuff until I tried everything possible first.

We tested my younger sister and I started taking Berberine, a natural antibiotic to clear out my colon. I had my friend whose a medical student research the connection between depression and FMT since my sister has mild depression. I decided to go ahead and have her be my donor. After two weeks on Berberine, I did a lavage in the morning to clear out my colon and took my first FMT at home. I saw improvements the very next day. 8-10 BMs down to 3. After 5 days of FMT I started incorporating everything back into my diet, after 75 days of eating literally nothing! I have gained back my energy and my weight. I am now into my second week of FMT and it already feels like I am in remission for the first time in my life!

Resources I used for FMT:
http://thepowerofpoop.com/
http://fecaltransplant.org/
http://www.naturaldigestivehealing.com/blog/
https://www.youtube.com/watch?v=xLIndT7fuGo

/
fm, 23 yrs
proctitis UC since 2000
pan-colitis since last dec
currently no meds, possible remission?

Thanks for sharing your story. UC since 2000, huh? That's quite a while.

What are your current symptoms? How many times are going?

Hey Elipon -

All I can say is keep at it!

What supplements are you on? If you aren't already taking whey protein and glutamine, that might speed up some healing.

It's pretty amazing that your UC of 14 years is more or less gone by FMTs. I think if you aren't on medications, then it is possibly a "cure".

For me, weight gain and no symptoms is generally a sign that mucosal healing is taking place in the colon.

Best.

Hi all,

Guardian7 asked me to repost the follow reply from a fecal pill thread. So... here it is:

DBwithUC said...
I found the actual text of the poster presented at the conference.

/idsa.confex.com/idsa/2013/webprogram/Paper41627.html

I basically just followed what was written in that section of the paper and made some pills myself!!

It's been three days since I took the pills and I'm feeling very calm bowel-wise. That said, I'm not convinced I've fixed things longterm since I pretty much did the dumbest of things immediately post ingestion.

Usually I live on raw fruit and vegetables to control any bowel inflammation. I, in my infinite wisdom, decided to go and eat a very low fiber diet straight after taking the pills. This included- a dozen sausages over two days, two litres (half a gallon) of Ginger beer and other sodas (!), pizza, honey-soy crisps, potato crisps and a ton of guacamole.

I kinda had a blow out because we had people over for BBQs two days in a row. Now all these foods usually cause me massive problems. And on their own they have all previously triggered flare ups, not to mention the usual allergies that fire up due to my over-active immune system.

But...

After eating 30 of the fecal pills the day before the BBQs, I found I had zero reaction to any of the bad food.

Like nothing. No inflammation, no migraines, no sinus rhinitis. I'm not even an angry SOB. All's calm. Well, apart from some constipation and sore lower back due to the huge amount of zero fibre food I ate.

I'm actually going to make another batch of pills next week but this time I'm going to stick to my usual high-fibre, low-inflammation diet. Plus I'm going to do a pre-pill enema to ensure I give the bacteria the best hope of recolonizing instead of killing them with hind-gut fermentation thanks to, well... sausages, crisps and ginger beer!!

------o00o-------

Post Edited (CoastalChris) : 6/2/2014 2:41:39 PM (GMT-6)

Guardian7 said...
CoastalChris -


2) What was the extent of your diagnosis? UC? Crohns?

My pleasure...


I'll hit you with my background first. Then I'll go make breakfast for my family, do the school run... and return with the pill procedure.


so....

Let me clarify a few things right off the bat since my results MAY NOT BE APPLICABLE to others who are suffering different symptoms.

Firstly, I'm a 42 year old male, 6'1" and 170lbs (78kg).

I am NOT officially diagnosed with UC. I'm not even self-diagnosed!

Seven or eight years ago I had a colonoscopy but the only thing evident was some small inflammation and a few polyps. A side note: I've never felt so non-inflammaed in my life during the lead up to the colonoscopy. All those fleet enemas provided so much relief that if I could survive without eating food, I would!!


Essentially, though, I have had lived with many of the symptoms relating to UC/Crohns/IBD.

The reason why I know about UC is that an ex-girlfriend of mine had indeterminate UC/Crohns which resulted in a colectomy and ileostomy bag. My inflammation has never been as extreme as what she experienced. I used to alternate between constipation and diarrhea (almost on a daily basis), I pass blood and mucous during flare-ups and have all the usual severe allergies associated with a highly active immune system.

I have found through trial and error that maintaining a diet exclusively of raw fruit (and eating bucket loads of it) and some raw vegetables alleviates all my symptoms, ie sleep apnoea, fevers after eating, sinus infections, migraines, arthritis, depression, lethargy... yada yada... you know how it goes?! Unfortunately even on a raw food diet I have poor nutritional absorption and find it hard to maintain body weight.

I take zero meds. I drink zero alcohol. I don't smoke, eat grains, meat, dairy, sugar or supplements of any kind. I have done all these things in the past and the slightest touch of each one on their own causes me tremendous problems with regards to infections and immune response. My current diet is essentially my survival diet. I can not seem to function on any other diet. I lost a 38 year old cousin last year from cancer that ran like this - IBD > bowel cancer > tumours. She had three little children which made her loss so much worse. I lost a 43 year old uncle the same way despite him having a colectomy to stall the illness. I'm hardcore about my diet because it works for me. And, well, basically, I'm tired of being reminded (and scared) of how this bowel journey could end.

I don't do water kefir, probiotics or L-Glutamine. I find the probiotics do nothing for me. Nor natural fermented foods like water kefir and sauerkraut. I stay away from L-Glutamine due to medical research on the gene allele HLA DQ2 and HLA DQ8. What I discovered after reading medical papers and talking to research doctors was that proline-rich foods like animal products , grains and legumes cause hind gut fermentation which results in gut dysbiosis. Unfortunately if you are a carrier of these genes (30% of people are, most notably celiacs), you will have gut problems. Anyway going back to L-Glutamine... this supplement catabolises into the amino acid, proline, in the small intestine. Thus causing problems. A year ago, it was confirmed that my gut was overrun with bad bacteria, not C. Diff, but Klebsiella. I had no biffidobacterium in there.

Anyway.... apologies for the long story... but the basic gist is that I eat like an bloody ape to control any symptoms. It works for me. Amazingly well, actually. That said, any slight deviation (and let's face it we all go on blow-outs) causes flare-ups. Thus the desire to reintroduce gut bacteria via transplant so I can stop consuming $300 of fruit a week and maybe exist on some rice and $250 worth of fruit instead!!

I have a long history of aggressive antibiotic use and am certain that the majority of my problems stem from that.


Wow... what an essay. Sorry!! :)

Post Edited (CoastalChris) : 6/3/2014 3:06:30 AM (GMT-6)

Okay... time for the pills.


HOW TO MAKE FECAL PILLS (the DIY way!)

What you will need EQUIPMENT wise:

- 2 x plastic bags (for rubbish/trash)
- 1 x large ziplock sandwich bag
- 500ml (1 pint) saline solution ($2.50 at pharmacy)
- Small plastic funnel
- Section of gauze (old triangle arm sling that was in my first aid kit)
- 1 x clean plastic container/glass jar
- A spoon (to help strain sample through gauze)
- 50 x 15ml test tubes (Ebay ~ $10)
- Some cups or containers to hold test tubes upright (I used a plastic ice block/icicle maker)
- 30-50 gel caps in three sizes (Size #1, #0, #00) (Again, Ebay. ~$7 for 100 capsule bag)
- 2 x 5ml syringes (50 cents each at pharmacy)
- 1 x long thin scraping tool. I used a chopstick. A wooden cooking skewer could work too.
- 1 x small plastic container or bowel
- A cheap variable speed power drill (Mine is a 1000 watt motor with a top speed of 3000RPM. Cost $40 at hardware store)
- Homemade centrifuge rotor (see following post)
- Plastic or latex gloves (if you want ... being obsessed about sanitation is weird when you get halfway through the procedure and it dawns on you that getting poo of your fingers is kinda nothing compared to what you are about to do ... ie, eat it!!!)


PROCEDURE (I did the following in the bathroom):

1. 100 grams (3 ounces?) of donor feces (ask your donor to put it in a plastic takeaway container or something)

2. Turn ziplock bag inside out and pick the feces up, using bag like a glove. Turn bag back to right way. Fecal sample should now be in bag. This process will obviously smell but once sample is in the ziplock bag seal it up.

3. open a small section of the corner of the ziplock bag up and squirt 500ml of saline solution into the bag. (I used a cheap solution from the pharmacy. Cost $2.50 per 500ml bottle) Save a little of the solution in the bottle - maybe 50ml - because you will need this later.

4. Slowly and carefully expel any excess air in bag. You don't need to be too pedantic about this.

5. Mash up contents by squishing the poo with your hands!!! Yay!!! In all seriousness, you really need to break the fecal sample down so that the solution becomes murky and horrid! What we're trying to do here is release the bacteria from the fibre.

6. Again, open up a corner of the ziplock bag and gently pour mashed up solution through our gauze filter/segment and strain mix into glass jar/plastic container (use a rubber band or two to fix to gauze to container). Just pour the solution in. Not the chunky fibre bits. What you should be left with is a jar full of murky saline and a ziplock bag with remnant feces.

7. Seal that sucker up. I mean the ziplock bag. That's the source of most of the smell and once you seal it up you can discard it into a trash bag. Double bag it if you have too. Once done, you will notice how much more pleasant it is to work with fecal matter!


8. Take your jar/container and remove the gauze. Bin the gauze. Hopefully you should have about 500ml (1 pint) of fecal/saline solution in that jar.

9. Transfer the contents of the jar/container into two or three paper cups. (paper cups are best because you can bend the rim into a spout of sorts.

10. Pour the solution from the paper cups through a small plastic funnel into each of your 40 or so test tubes. No need to fill them to the brim, otherwise things will get messy! On the plus side, the saline mix will now have a smell that is not at all offensive in comparison to the early steps!

11. Place the test tubes upright in cups or containers or whatever. Anywhere so they can sit out of harms way while we prepare the next step. Which is...

12. Centrifuge the test tubes

13. Ideally you will have a centrifuge. Of course, few people will because, well ... who the hell has a centrifuge in the cupboard?! I made a centrifuge rotor ... but be warned, there are some issues/dangers. Please see my how-to on this in the next post I put up. Anyway, on with the procedure...

14. Where was I...? Oh, yeah... centrifuge the test tubes. I did four test tubes at a time. I tried to spin them each for a minute or more at a time. Do this a few times or until you can see a definite separation of layers. In other words... stop the spin process and look at the tubes to see if there is any separation. Sometimes I was only able to spin test tubes for a single minute before issues arose. But even those tubes had already shown some separation. What you're looking for is this -- There should be a light brown saline layer on top. This will dominate the contents. Below that will be a tiny (dependant on how long you can centrifuge for) peanut paste-like layer - this is where the bacteria are. And below that, at the base of the tube, will be a darker, sediment layer.

15. Draw off/tip out the supernatant layer (top saline solution). I just tipped it down the vanity sink and washed it away. I couldn't deal with putting it in a separate container etc. I was already anxious enough about the whole procedure due to some centrifuge mishaps, the excitement at a possible normal life, the fear at never having a normal life, my wife's poo, the test tubes, the self-doubt because I had no idea what the hell I was doing ... the whole unknown!! Anyway, back to the program...

16. Take your skewer/chopstick/scraper tool thing and prepare to retrieve the peanut paste/bacteria layer from each test tube. Squirt in a tiny bit (1 ml) of saline solution and gently stir the peanut paster layer free from the test tube walls. Do not disturb the darker sediment layer on the bottom of the tube. It is worthless. We only want the tiny bit of peanut paste/bacteria layer.

17. Tip out the newly recovered bacteria/saline mix from the test tube into a fresh/clean test tube (let's call this our 'Awesome Sauce'). This will be the tube that we use to fill our capsules at procedure's end.

18. Repeat this centrifuge > Awesome Sauce recovery process until you have filled that entire 15ml test tube with Awesome Sauce.

19. Tip Awesome Sauce into a small container/bowel or sturdy cup.


20. Using a syringe, draw up the Awesome Sauce and methodically fill your capsules. (I filled a #1 gel-cap then immediately over-capsulated it with the #0 and #00 capsules. Then I swallowed it with water. In other words... I made a single capsule and ate it immediately. Repeat this thirty (30) times!


21. Consume the ~25-30 capsules. This should be done over 15 minute period on an empty stomach. I did this first thing in the morning.


NOTE: The whole process took just over three (3) hours. I wish there was an easier way but I suspect the only easier way is doing it with a proper centrifuge rather than a power drill. You can buy cheap Chinese-made centrifuges from Ebay. I have no idea if they are any good.


Feel free to ask any questions... I'll post some pics and centrifuge rotor stuff next.


Cheers
Chris

Post Edited (CoastalChris) : 6/2/2014 7:06:17 PM (GMT-6)

HOW TO MAKE A CENTRIFUGE ROTOR

Okay, for anyone interested I tried to set up a bit of a how-to website for the fecal pill thing.

You can find it here:

gastrosolutions.org/

I hope that helps.

I gotta get back to my normal life now.


Cheers
Chris

Post Edited (CoastalChris) : 6/3/2014 3:08:11 AM (GMT-6)

Hi Chris,

Thanks you so much. You've put a lot of your time into helping the rest of us here. You must be a courageous, open-minded person who is full of initiative and a good sense of humour. The instructions are very easy to follow. Perhaps what you are doing is even better then the fecal enemas/scope. I wish you never to have bother with your digestive system ever again.

I just wonder when (and where) do these capsules dissolve. Anyone has an idea?



Just and update. I'm still preparing my gut to fts. Today I took the first Bubropion. On the whole there is a great improvement. I'm not sure whether it's due to the fact that I've recently stopped eating raw food or to two weeks of tricyclic .

Also, I've asked Prof. Lawrence Brandt his opinion on whether steroids taken rectally can interfere with fts. Very kindly he replied that they should not interfere but that he would not take them if they are not needed. So I think if I manage to keep the very strict diet and the antidepressants I might not take the steroids after all.

Wishing all of you a complete RECOVERY.

Sharron

Guardian7 said...


That is amazing work. You went beyond and above the call of duty to write this thing and help us out. I will bookmark the site for later use. Thank you again.

No problems, Guardian.

It's only been six days since I took the pills so I will keep a record of what's happening as I go and update my findings every so often.

My motivation behind the long procedure post is simply to provide another possible treatment for people. I am absolutely stunned by how different my gut feels in such a short time. Whether that lasts, is another matter entirely.

As for the L-glutamine and proline thing... we could very well have different genes. Perhaps you aren't a HLA DQ2 and HLA DQ8 carrier? I certainly know my life would be a whole lot easier if I could tolerate sources of proline. Bone broths, meat and dairy wipe me out for days on end. As a consequence I avoid it like the plague. That said, it will be interesting to note if I can tolerate those foods with a healthier microbiome. I love using myself as a guinea pig, so I'm sure I will test a whole bunch of stuff to see what nails me!

sharron19 said...

Thanks you so much. You've put a lot of your time into helping the rest of us here. You must be a courageous, open-minded person who is full of initiative and a good sense of humour. The instructions are very easy to follow. Perhaps what you are doing is even better then the fecal enemas/scope. I wish you never to have bother with your digestive system ever again.

I just wonder when (and where) do these capsules dissolve. Anyone has an idea?

It's my pleasure, Sharron.

I hope a few people give the procedure a go. It's a bit of stuffing around but probably a whole lot easier than the enema method.

From what I understand the triple-layer gel caps survive the stomach acid and breakdown in the small intestine.

soystud said...


great stuff cc - nice that you have a happy and healthy contributor living with you

Yeah, it certainly makes it easier making a weird request of someone who already knows you're weird ... but married you anyway!

Personally, I think she would be willing to do anything if it could end the decade of daily complaining and moaning and anti-social behaviour and... the list is endless.