counting success stories with fts (continued)

Sharron, just tell him it's a fresh stool.

I think most stool samples can be stored in the fridge for at least a day or two prior to analysis so it's highly likely that the bacteria will be fine for use in an FMT. It's not like you've been storing it in a cupboard for a week.


On a side note: I'm 9 days post fecal pill eating (I guess I should say 'treatment' but I was just sitting in the bathroom swallowing them as I made them. Which is not really a clinical treatment!). Anyway, I am currently feeling no inflammation was so ever in my colon. It's been at least ten years since I've had no feeling of inflammation down there. I'm not UC though. So I have no idea how someone with a severe inflammation would respond.

Post Edited (CoastalChris) : 6/8/2014 2:38:49 PM (GMT-6)

Does anyone know a doctor in Finland who has already done an FTS colonoscopicaly?

Thanks Guardian. I suppose I'll have to do with the GI who is willing to do the transplant.

an update: I'm starting feeling a little bit better. I still have diarrhea from time to time and am very careful with what I eat. I eat mainly home made, very condensed, chicken soup. Unfortunately I can't go on the SCD because most of the things on the 'legal' list will definitely worsen my condition. I think the Bupropion(Webutrin) has made a difference. I would recommend it as a preparation to fts. The only side-effects at the moment are: dryness of the mouth, blurt vision and lost of appetite.

I have read through Dr Briggs' thread again: https://www.healingwell.com/community/default.aspx?f=38&m=2541306. Great thread! Lots of important information in one place. His theory about destroying the biofilm before the transplants makes sense. I was very impressed with his profound belief in his theory which allowed him to carry on taking the enzymes despite the pain experienced and the symptoms, which many other people would perceive as another flare. I've ordered the same ones that Dr Briggs used. http://klaire.com/images/InterFase_Update.pdf. I was debating whether to get InterFase formula or InterFase Plus formula. The latter has more types of enzymes in it and from inexplicable reason costs less. Not having the information about the difference and getting short in time I decides to get just InterFase Formula. For anyone else who wants to give it a go, that's where I've found it: https://puremedix.com/search/?searchstring=interfase&brandid=120. I've paid for express delivery so I should have in 3-5 days.

Gary, I read that you had similar experience with these enzymes and stopped taking them. Have you tried them again since?

The SCD worked well for Briggs which is great. During the initial 12 years of UC I could not tolerate: gluten, dairy, yeast, millet, citrus fruit, all pulses, corn, nuts, seeds and anything of the animal apart of eggs, chicken and honey. We've already agreed that we are all different in terms of what causes the symptom to get worse but anyone else has a list which is close to mine? I used to have lots of brown rice, potatoes, fresh/cooked vegetables, fruit, tahini sauce, eggs, chicken. Since 2012 my condition has got much worse and it's hard to tell what food I cannot take. Fresh fruit and vegetables seem to make it worse. If I could have just a few nuts back then and still do fairly well, now it will send me to this so familiar hellish place.

I decided to avoid carbohydrates just now and perhaps by doing that to starve and get rid of the bacteria in the colon. I'm not sure about it 100% and can also see the logic in the opposite argument which other people, like Guardian, support. We still know so little about these tiny creatures in our guts so it wasn't easy to decide.

Probably due to the restriction on food intake, the tricyclic, Bupropion and probiotics I am feeling much better now. However, I still have diarrhea and some bloating and from what I gathered my colon is not ready for the the first transplant. I will see a GI on Monday and try to get a prescription for steroids off him. Like Dr Briggs I'm also concerned about getting better after fts and not been able to discern whether the improvement is due to fts or the steroids. Also with my bad reaction to medicine I really don't want to spoil everything just now.

I hope you are all getting better.

Sharron

Post Edited (sharron19) : 6/18/2014 11:24:28 PM (GMT-6)

Another interesting old thread about the bacterial biofilm : https://www.healingwell.com/community/default.aspx?f=30&m=1898888

I think EDTA is actually crucial here but I don't think Dr Briggs mentioned it.

Does anyone has any information/experience related to enzymes designed to destroy biofilms?

Post Edited (sharron19) : 6/15/2014 1:36:27 PM (GMT-6)

Hi Sharron -

Was this the same brother who you said has a bowel movement every other day or two? It's possible that the parasites could be causing those issues.

Yes, finding a donor is difficult.

Hi,

I've received an answer from Prof. Brandt. He strongly recommended that I do NOT to my brother's stool. I'm back to square one now.

I've managed to see a GI today. It was arranged awhile ago. My plan was to get some medicine in order to reduce the inflammation and be ready for the transplants. Like Prof. Brandt he thinks I should avoid the steroids as much as I can. He said I'm better off keeping my very restricted diet (chicken soup) and not touch the steroids. Interesting, actually I've just remembered that this same doctor told me to take steroids after seeing the results of the colonoscopy at the end of last year. I'll look at the papers. Anyway, now he's suggested I take one of these immunosuppressive. I'll have to think about it.

I still remember the nice feeling of passing a solid stool after my trial with my son's stool and I really hope to find a suitable local donor soon. Just to show how vital these tests are.

I will keep you updated.

Good luck with healing well.

Sharron

an update: solid stool this morning! a nice surprise. I ate nearly a whole watermelon today. I really shouldn't but I couldn't help it. It'll be interesting to see the effect. I will carry on taking both antidepressants for a few days and if everything goes well I'll then stop the tricyclic. Just experimenting on myself at the moment and checking my options with regards to fts.

Sharron

Post Edited (sharron19) : 6/19/2014 10:04:09 AM (GMT-6)

Thanks Guardian. I've just had quite a lot of fresh fruit and some nuts. Really tasty after the heavy restrictions. I do think it's the Wellbutrin. I might be able to tell better in a couple of weeks after I've stopped the tricyclic. It would be good to know because I think there is no point taking both of them if one is enough. Also I'd never got this result when I took the tricyclic on its own so it's very likely to be the effect of the Wellbutrin. However, I hope I haven't ruined this experiment by overdoing it with today's food intake. I'll try not to feel too guilty and just be more careful. Yes, it does say in its the leaflet that it can cause constipation. To be honest, I don't mind being constipated, after completely losing control over my gut and for so long.

My order of interfase enzymes wasn't lodged properly. I've just placed another one.

Thanks again Guardian. It's great that you can be so in tune with what your body needs. I seem to crave for food that makes me flare. I'm not sure why, but my list of 'don't have' is much longer than the lists of many others on this form. It became even longer in 2012 when the condition became worse. I wasn't aware of it then but between 2000 and 2012 I was actually quite lucky. At least I could gain some control over the bowel by avoiding certain food. Saying that, I don't think it helped much with the joints (in particular the knees).

I would have loved to follow Dr Briggs steps and starve the bacteria by going on the SCD prior the FTS but I can't. I definitely can't tolerate anything of the animal apart of chicken, eggs and honey. Can't have any nuts or seeds, beans, lentil. I would appreciate any comments on food that starves bacteria. I didn't feel guilty about overeating but because I ate fresh fruit which lately seems to make things worse but apparently also encourages bacteria growth. I'm really okay with rice and potatoes but I have avoided them recently from the same reason. I'll have to read more about it. Just difficult to be on chicken soups for an unknown period of time. Once I get a clear date for the start of the transplants it might be easier. Unfortunately, I don't think any of us can tell how long it takes to starve the bacteria off the gut.

update: another solid stool this morning! I've been to my GP and he's given me a three month prescription for Bupropion. Great!

Wishing you all a full recovery,

Sharron

Wow sounds like your UC is under control, albeit at the cost of a few side-effects. It could indeed be the tricyclics... Keep us posted!

This makes me want to ask my doc for wellbutrin...

I'm also curious - do you have access to sheep dairy in Finland? This really helped me when cow and goat could not. It is richer in whey protein and more tolerable by the population.

Best.

Ramble all you want Chris. We are all listening!

Sounds like colonization is taking place in your gut! They are thriving!

Here's an odd FMT side-effect... I'm not getting zits anymore!!

Very weird.

But welcome. :)

Hi Sharron,

I just thought I'd drop in and it looks like you are doing pretty well. Are you taking whey protein shakes? This was a key part of the cure for me and helped me get into something closer to remission without steroids before I started the fecal transplants. Ironically the protein was recommended by the colorectal surgeon who would have taken my colon.

I strongly believe Wellbutrin was the missing link for me to make the fecal transplants work, that's great it seems to be helping for you. What dosage and what form are you taking? I started with 300 mg a day first the immediate release 3 x 100 mg a day which I had read was the most effective for treating inflamation, but then later switched to the twice a day sustained release and then once a day extended release (XL.) This is the study I found where Wellbutrin was tested as an anti-inflammatory after lab tests showed its effect on mice. "A Trial of Wellbutrin for Crohn's Disease" http://clinicaltrials.gov/show/NCT00126373

While no results were released from this trial I think the fact that it went to stage 3 trials is very significant. They also only tested the Sustained Release version rather than the immediate release form that is taken 3 times day. If the anti-inflammatory benefit comes from the period of time where the drug levels are increasing in your body, then 3 more sudden peaks of plasma levels could be more effective. See the figure I included in this article: I also have some info on my website: http://fecaltransplant.org/bupropion-as-a-treatment-for-ulcerative-colitis/

At this point since all forms of Bupropion are available as low cost generic drugs there is no incentive for a drug company to test the effect of this drug which would compete with expensive, patented biologic drugs with significant side effects like Remicade and Humira (as TNF inhibitors.)

Also what kind of tricyclic antidepressant are you taking and what dose? I actually stopped taking 5 mg of Doxepin, the tricyclic antidepressant, every day and then took it intermittently after the first few weeks because it left me feeling a little sluggish or drowsy sometimes. However it was effective for helping with sleep and slowing diarrhea.

For both Bupropion and Doxepin the drug half life is less than a day and less than 3 days for the metabolites so within 3 days the drug is completely out of your system. However positive effects that would last after you stop taking either or both could be due to the TNF-a inhibiting activity from Bupropion (a study revealed it has this effect in mice) and the potentially greater amount of tissue healing that can happen without diarrhea and urgency.

Chris: What is your website? It sounds like things are working out great for you.