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counting success stories with fts (continued)

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Posted 5/15/2014 4:12 PM (GMT 0)
Hi Sharron,

You're welcome. I must have missed this buried in the discussion threads somewhere, but saw in the signature for your post that you say you have been doing fecal transplants since January of this year. Did you start and then stop or have you been doing them continuously? Where are you at with that now? In any event I am impressed with your persistence and willingness to give almost anything and everything a good try to see if it can help. I think many of the same things that are helpful during the fecal transplants and for time afterward would also be helpful beforehand too. I think they could make the process more pleasant, faster and more effective.

- Steriod suppositories sound like they would be a good idea, I wish they had been presented as an option for me years ago. I also like the sound of Uceris even though it wasn't available back when I dealt with UC. The possibility of having the benefits of steroids while minimizing the systemic impacts sounds very promising.
- Proper nutrition to speed mucosal healing using whey protein shakes and as well as iron and B12 supplements to help boost red blood cells would be very effective. I also think calming urgency and diarrhea using anti-depressant and / or anti-anxiety drugs and water soluble starch to soak up excess water and add bulk would be helpful for helping to heal the mucosa too. Benefiber supplements (gluten-free wheat starch) and home made banana bread without nuts appeared to be quite helpful for this purpose.

While I believe there are many possible variations of Ulcerative Colitis I think any data that we can collect will generally show that those who have not been successful did not do them properly or not for long enough or had donor stool that was problematic and / or left out some of the other pieces of the puzzle. For example not using effective medications, nutrition or other therapy to address problems with diarrhea / muscle spasms, and mucosal healing and suppression of inflammation. For me the secret sauce appeared to be Bupropion.

While I know there are many people who believe they have good reasons for resisting certain drugs treatments, especially steroids or anti-depressants. I think that for many people using drugs to help the FTs become a permanent solution, is necessary and worth the end result. I think it is worth considering that anti-depressants like Bupropion either with or without the addition of a low dose tri-cyclic antidepressant have a much lower negative side effect profile than steroids or biologic drugs like Remicade, while also appearing to be highly effective. To that end I strongly recommend giving Bupropion a try in advance of the fecal transplants, during and even for 3 - 6 months after the illness appears to be completely gone.
Posted 5/15/2014 4:32 PM (GMT 0)
When I was begging for simponi, my doc indeed suggested tri-cyclic antidepressants as an alternative while back and said they do indeed help calm down UC symptoms.

Sharron - I think it's worth asking for if the doc is willing to prescribe it. Just know that it is temporary and is a tool to get that UC gone. I might ask for it as well when the time comes because he was willing to give it to me over biologics.

I also think that Delta would benefit from the suggestions that Hurst put out there. Getting off meds during the initial phases might have been a little premature, even if she felt great. I think the colon needs a chance to get completely healed. It's not just years of damage, but decades that has to be overridden.

Along with the suggestion of soluble fibers, whey protein and an anti-inflammatory diet, I'd like to add fish oil. It helped my symptoms considerably. Most brands out there are duds, and I can only recommend the top notch ones used in clinical trials - nordic naturals is a fine one that has the clinical backing.

Post Edited (Guardian7) : 5/15/2014 10:38:19 AM (GMT-6)

Posted 5/15/2014 7:39 PM (GMT 0)
Thanks a lot Guardian. I was just about to post a request for suggestions about what kind of medicine to start taking.

I'm badly bloated and wanting to get ready for the fts. I'm going to meet my GP tomorrow morning and will tell him about the progress with the GI. As I wrote before the 5-asa was not good for me. Antibiotics triggered the uc so I think I should really avoid it too. What kind of tricyclic antidepressants is the best for calming down the gut? I'm Scared of taking the steroids orally. Is it not better to be taken by enemas or perhaps in the form of rectal suppositories. I'm a bit lost here.

Fish is really bad for me so I'm not sure about trying fish oil just now. Also, I've never taken whey protein before I'll look for it in the local health store.

I will try to figure out what Borody and other prescribed to their subjects.

Thanks again and I wish you all a full recovery.

Sharron
Posted 5/16/2014 6:31 AM (GMT 0)
Symptoms are getting worse yesterday. I've spent the all night running to the toilet and trying to fall asleep. I've never managed to figure out how you guys manage to count BM. I ate the solid ingredients of the chicken soup yesterday but I think what really made it worse was the fresh fruit. I'm off to see my GP.

From all of you I've learned that it is crucial to calm down the gut before the fts. I will see what my doctor offers and will try to learn more from the experience of the people who were successful and also from the people who weren't successful with fts.

I feel weak but have not lost hope completely.

Sharron

Post Edited (sharron19) : 5/16/2014 9:09:40 AM (GMT-6)

Posted 5/16/2014 8:49 AM (GMT 0)
Hi Sharon -

1) I thinking waiting until symptoms are cool is a wise idea. If your son has contracted mono or isn't feeling well, be very careful and find a new donor if possible. I think Hurst will probably confirm that using a donor with mono or with any possible infection is not ideal and could cause issues down the road.

2) You also need to take care of yourself, get some rest, get your nutrition up and make sure you are physically ready for the procedure. I wouldn't do any terribly restrictive or starvation diets, except the low residue kind that Michael alluded to. Just eat anything (within the parameters of your colon tolerance) that will get your energy up - rice, salmon, chicken, potatoes, steamed veggies, etc, etc. Paul Jaminet (from the PHD) researched this matter and mentioned that the colonic mucosa relies on carbohydrates for energy (both from glucose and resistant starches), so this will undoubtedly speed up the healing process. I find that a recipe like rice butter, along with garlic salt + steamed veggies (carrots, green beans, potatoes, etc) fills me up and leaves me and my colon satiated. You should eat until you feel full, but make sure you have enough fat in the meal to do so.

3) I think for instances like these, ensure or muscle milk or some Jini Patel Thompson kind of elemental shakes might also be helpful. I'm high on whey protein shakes with almond milk and bananas for healing the lining of the colon. The caveat is to find good raw grass-fed whey protein and make sure it is whey protein concentrate (not isolate), as that contains fats which binds to the beneficial peptides to speed up absorption. I recommend looking on amazon for some well reviewed listings. ImmunoPro is one highly sought after brand.

Best.

Post Edited (Guardian7) : 5/16/2014 2:52:22 AM (GMT-6)

Posted 5/16/2014 10:27 AM (GMT 0)
Great advice Guardian7! and to add a little bit to that ...

1) Getting symptoms under control as much as possible can make for an easier experience and for those I have spoken with that started on steroids before the fecal transplants did not have a flare during the fecal transplants and started to get results immediately or within days that were sustained.

If you look at various testing protocols from published papers such as from Dr. Silverman and which I also include in my various donor screening materials Epstein-Barr virus is one of the things to test for in a stool donor. Using a screening questionnaire which looks at medical and travel history and lifestyle you can largely predict how likely your donor is to be free of transmittable diseases, which you can then further confirm with lab tests. I think its worth going one step further, as Sky Curtis advised me find someone with "the most consistently regular poo that you can." Another consideration is that metabolism has been linked to the microbiome, so pick a healthy, mostly thin person. In my case I ended up picking someone with an almost identical body type.

The tri-cyclic anti-depressant I took was Doxepin 6 mg, marketing for sleep maintenance under the brand name Silenor. Once I ran out of samples I got the Dr. to prescribe generic Doxepin 10 mg capsules and just poured half of it into my mouth, since it saved me $100 or so. Note this amount is below the lowest threshold level prescribed when using it as an anti-depressant. There are also other Tri-cyclics listed on Wikipedia as being prescribed to treat IBS too that might be worth trying. I also later tried the herbal extract Valerian root extract and it seemed to work almost just as well as the Doxepin except it took la little longer to kick in. However over time I tried to limit both of these since over a period of days they would sometimes leave me feeling a little drowsy or less mentally sharp.

2) Great advice on the food. I also sometimes had a teaspoon of flaxseed oil or olive oil as Jeni Patel Thompson recommended to add to her meal replacement shakes. I now believe limited diets contributed to the dcelince in my health around the time I was referred for surgery. Too much insoluble fiber from raw fruits, vegetables and nuts in attempt to limit starches and gluten also appeared to be problematic, so can coffee, and carbonated beverages, so I switched from beer to wine :) For low-residue I loved the brown sugar banana bread I made with the recipe from Heather Von Vorous, available on her website.

3) Totally concur. I had good results with Muscle Milk, it actually has 3 times the amount of the L-Glutamine amino acid over Absorb Plus, although Absorb Plus and many other whey shakes are also very rich in that too.

As for taking care of yourself, rest and other things are great but popping a pill is convenient and gives you one less thing to worry about. Given that there are more neurotransmitter receptors in the gut than the brain I would strongly consider the anti-depressants as part of treatment even if you do not feel that you do not have depression per se. As the gut is actually more sensitive than the brain. The addition of Bupropion (and Doxepin) on top of the other drugs had a very profound immediate impact in my case, the first well-formed stool in a very long time just a few hours after a loose mostly watery BM. And to add the icing on the case, side effects may include more energy and no negative sexual side effects! If I had it to do over again I would include those drugs from the get go, maybe even start Bupropion a little ahead of time, given its properties as a TNF-a inhibitor.
Posted 5/16/2014 12:50 PM (GMT 0)
I'm back from my GP. He is young and still not that experienced which I find great for my pursue of a real cure. I found him easy to talk to and willing to hear about different ways of going about treating uc than just taking the medicines. I asked him to give me tricyclic antidepressant and he prescribed Elatrol 25mg (Amitriptyline). Is that good enough or shall I ask for Doxepin? I saw that a rare side-effect is hepatitis and am scared after the liver inflammation caused by 5-asa. I also asked for steroids and he said he'd prescribe cortifoam next week. I think I'd better not take it orally. Should I ask for suppositories or enemas? According to last colonoscopy the inflammation goes 70 cm up the colon. What would be the dose? I've managed to show him The Power of Poop site and even this very thread. Who knows, perhaps during his long expected career he will contribute to the availability of this therapy for many sick people.

Guardian and Michael, thanks for your kind and informative replies.

So far, apart from adding probiotics about a year ago, I've tried to get better by controlling food intake only. I learned what I can't have, eliminated it of my diet as much as I could, and made my food from the basic natural ingredients. (fresh/boiled veg, etc). It had worked well up until two years ago. I've recently realized that for the fts to work I need to open my mind and allow the information gathered by all of you to affect my decision making. I've never thought I would ever take antidepressants or steroids. But now somehow it makes sense. Now I have to learn more about things like whey protein concentrate, muscle milk, almond milk, etc.

With regards to the food I don't think I would eat fish or butter because these really don't agree with me. In fact nothing agrees with me just now but these weren't good for me even before the condition deteriorated to its current state.

Guardian, my son is actually started to feel better. Tests' results show that he hasn't contracted the kissing disease and does not have clostridium difficile. I've just told my two very local potential donors about the news from the GI. They promised to get back to me with their decision on the matter. One will talk to her husband who is the better choice of the two of them due to more regular/solid BMs and the other expressed some doubts upon hearing that the health board committee has refused to approve the hospital the transplant via colonoscopy. I really do understand their difficulties in deciding whether they should take part in it and I feel embarrassed and perhaps even humiliated asking them to do something of this nature. However, these feelings of mine are not going to put me off the hope of trying to cure myself by the means of the use of fts.

Michael, did you say you took Bupropion and Doxepin. The first is defined as non-tricyclic and the second as tricyclic. Could you please explain more about it? I will not start taking the antidepressant today and I hope first to get more information about the best type to use.

Wishing you all a full recovery.

Sharron

Post Edited (sharron19) : 5/16/2014 9:11:50 AM (GMT-6)

Posted 5/16/2014 1:40 PM (GMT 0)
Michael -

I would humbly suggest that you just stick to these official FMT threads and not waste your time with any other threads. I read through your post in deltaforce's thread referring to Borody's case studies showing no incidence of UC (or a cure to be precise) up to 13 years later and quite honestly, I don't think people care or understand the significance of it.

At the same time, I understand you are trying to be nice, but again, your time would be better suited to this thread, and helping those folks who want to give it a shot. I understand you don't have any trace of UC pathology anymore (as the 4 years without meds or symptoms shows), but it doesn't matter and I am happy that you are still posting here.

Keep it up is all I can say.
Posted 5/16/2014 4:21 PM (GMT 0)
Just a note to everyone who is at the moment in the midst of fts or has done it in the past. Please feel free to share some of your experiences with us. In that way we might be able to learn from and help each other.

The variable collected are:
age at the beginning of fts
sex
diagnosis
donor's sex/age/relation to you
fts:date(from to)/number/frequency
medication before during and after fts
results
other comments

herbgarden- have you gotten to do the second round of fts to your son and if you have were you successful again.

beachlife, Ferg520, pmedic - did you go ahead with the transplants.

UC_Hater, jasherlynch and Briggs - you've all updated us recently with the wonderful news of still being UC's symptoms free. Could you please write one more time and update the details (variable) above so we could add the information to our list of success stories?

Sharron

Post Edited (sharron19) : 5/18/2014 1:24:15 PM (GMT-6)

Posted 5/16/2014 5:26 PM (GMT 0)
Guardian7,
I see your point, and it is duly noted. I know that anything new is always met with resistance and skepticism for some time before finally being accepted. I saw this as a child when my mother fought for natural foods in school lunches, the evidence was there, it just took people about another 20 years to catch up. I was told that's just how it works with people, but things will never change without those willing to stubbornly peak up for what they believe in and know to be true.

There are many people who are open to new possibilities and would do almost anything to be done with this illness, and I believe there are many who will consider what they see in discussions with an open mind without necessarily weighing in unless they feel they can contribute constructively in some way. However if someone is stuck in the place where I was about 3 and a half years ago their disbelief could be caused by being worn down and depressed after trying so many things that haven't worked and being told there is nothing they can do about their condition for many years. And then most people who have become healthy often don't bother to continue to post on a regular to forums like this one, especially when faced by resistance from cynics or skeptics. However I am quite encouraged by the rapid progress which is being made in this area and by the exponential growth in research, patient interest and the rapidly increasing number of success stories. Hopefully I can offer some support and by sharing my experience I can help make this less difficult for others to be done with this illness even if not everyone is ready to accept or agree with the possibility until they see it for themselves.

I feel an immense amount of gratitude for discovering the information I found and for the support of those people who were willing to take a stand, it takes courage. I would have never considered this credible and done this were it not for Dr. Borody's article, a supportive doctor who I almost did the fecal transplants with, the conversations I had with a woman who stubbornly fought to beat her son's Crohn's-Colitis, and my donor. I couldn't have done it without their support.

My experience was a huge wake up call to me that I can't just blindly trust others like doctors to make my health decisions for me. You have to be actively involved for your health. I would have had major, irreversible surgery when it was not necessary even as documented successful cases (13 years!) had been published in a medical journal 8 years ago. For me to have had surgery only to learn a few years later that it was unnecessary would have been horribly tragic and its a fate that I want to help others avoid.
Posted 5/18/2014 7:52 PM (GMT 0)
Hi, I've been to my GP's clinic. I wanted him to get me this Wellbutrin. He was busy but told the secretary to tell me that this drug cannot be given without a good reason. I've arranged an appointment to see him for Thursday morning and I hope I'll be able to learn enough about it and convince him that it will make big difference to the success rate of the impeding therapy.

I've still not started taking the tricyclic or in fact any medication. I should really start soon. I hope to hear good news soon from my potential donors.

Sharron

Post Edited (sharron19) : 5/18/2014 2:41:17 PM (GMT-6)

Posted 5/18/2014 8:35 PM (GMT 0)
Thanks for the update, Sharron. Take your time to plan this out, thoroughly. :)

1) If you have issues with cow dairy, you could try goat dairy, as the fat globules are smaller and easier for the body to digest. Meyenburg is a popular brand sometimes found in wholefoods, though I haven't seen it lately. Their goat butter is to die for and very tasty. They also have goat milk that you might be able to handle.

2) I would say the same thing for protein powders. Whey protein and muscle milk are both derived from cow dairy. There are some wonderful goat whey proteins and goat protein powders out there. Terra's goat whey is a good one. Mt.Capra Double bonded protein is another wonderful brand, though expensive. How well do you do with l-glutamine?

3) As far as the food intolerances, I'm not sure what to say. It sucks and is hard to deal with. :(

You have to eat something, right? Anything. Even low residue white bread in these cases would help.

I would venture to say the inflammation is causing it for the most part. Rice, chicken, low fibre steamed veggies like like carrots, potatoes, etc till soft might be helpful, but please do eat until you are full, since the colon absolutely needs an energy source like glucose to heal. I would even add soluble fiber or something like psyllium husk or benefiber as Michael mentioned. I think this is vital for the colon and gives it a rest from some of the roughage.

Best.

Post Edited (Guardian7) : 5/18/2014 2:40:57 PM (GMT-6)

Posted 5/19/2014 1:43 AM (GMT 0)
Hi- been awhile but I am still in remission since my FT (3years June). I am taking 2 Lialda a day.

I had a scope several months a go because my GI insisted and I had zero inflammation.

While I know that FT is not everyone's end game - and may not be mine it has been life changing. I have had an abundance of stress this year that typically would bring symptoms but so far all good.

Happy to share more with anyone seeking info.

Hope this helpful Sharron! Thanks for reaching out to me. to check in.
Posted 5/19/2014 12:56 PM (GMT 0)
Hi Tracy,

Thank you so much for your reply. I'm so happy to know that you are still doing well. I think we'd all appreciate if you give some more information which would allow us to add you to the list and learn from your experience. The following are the variables we're are looking at but please just fill whatever you can.

age at the beginning of fts
sex
diagnosis
donor's sex/age/relation to you
fts:date(from to)/number/frequency
medication before during and after fts
results
other comments

Wishing you all a full recovery

Sharron
Posted 5/19/2014 3:25 PM (GMT 0)
For those of you doing the home FTs, what are you having the donors poop into?  I know for fecal testing the doctor provides those toilet trays, but can the public buy those?  Thanks.
Posted 5/19/2014 3:29 PM (GMT 0)

sas said...
Hi- been awhile but I am still in remission since my FT (3years June). I am taking 2 Lialda a day.

I had a scope several months a go because my GI insisted and I had zero inflammation.

While I know that FT is not everyone's end game - and may not be mine it has been life changing. I have had an abundance of stress this year that typically would bring symptoms but so far all good.

Happy to share more with anyone seeking info.

Hope this helpful Sharron! Thanks for reaching out to me. to check in.

That is great to hear. Have you and your GI discussed discontinuing the lialda?
Posted 5/19/2014 5:06 PM (GMT 0)
Dude35- I just use those discardable plastic containers. If you watch both Michael Hurst's and Patty's video on the Power of Poop you could find solutions for practical issues.

I wish you good luck with the fts. Please do keep us updated.

Sharron
Posted 5/19/2014 8:35 PM (GMT 0)
Tracy (sas) I couldn't wait and added you as the 7th success story on the list! I'm still so happy for you. I hope you remain cured for ever. Looking for the details, I have read your thread and was so impressed with your kind support to many other members.

I hope to speak to my potential donor tomorrow and start with the fts soon. Fingers crossed.

Sharron

Post Edited (sharron19) : 6/3/2014 2:05:24 PM (GMT-6)

Posted 5/19/2014 9:08 PM (GMT 0)

sharron19 said...
Hi, I've been to my GP's clinic. I wanted him to get me this Wellbutrin. He was busy but told the secretary to tell me that this drug cannot be given without a good reason. I've arranged an appointment to see him for Thursday morning and I hope I'll be able to learn enough about it and convince him that it will make big difference to the success rate of the impeding therapy.

I've still not started taking the tricyclic or in fact any medication. I should really start soon. I hope to hear good news soon from my potential donors.

Sharron



"Good" reasons, i.e. conditions Bupropion is currently prescribed for include:
- FDA approved for depression / Seasonal Affective Disorder (SAD) / smoking cessation
- often used for side effects from other anti-depressants including TCAs or SSRIs including sexual, energy and being clear-headed
- off-label prescriptions include being for IBS, ADHD, weight loss, low libido

You could also find published articles using a Google search and / or from Wikipedia foot notes print them out and bring them with you to make your case. One thing to be aware of is that doctors are sometimes averse to what is seen as "drug seeking behavior." However there appeared to be a fair amount of compassion for severe IBS and IBD, so start by describing your symptoms, all of the things that you have tried that have not been successful then that you've found some medical journal articles and heard that Bupropion might help you with an otherwise untreatable condition. Since you already have an existing relationship with your doctor and since these antidepressants are not considered to be drugs likely to be abused I should think it won't be too much of a problem.
Posted 5/21/2014 4:53 PM (GMT 0)
Hey Michael -

What side effects, if any, did you get while taking Bupropion?
Posted 5/21/2014 8:30 PM (GMT 0)
Great news, I've just spoken to my donor's wife and she said he would do it. He doesn't even need to see the GI and is willing to come to my house and do it here! Unfortunately he doesn't have a BM every day. She said it would be difficult to get him to do the blood and stool tests. He just works during the days and never gets round to do these tests, even not for himself. Honestly, they are so kind.

I'm now thinking about starting with an ft via colonoscopy abroad using my brother's stool. That means that I will not begin fts before the middle of July. I have plenty of time to get the inflammation under control and plan everything.

Hope you're all getting better.
Posted 5/22/2014 1:49 AM (GMT 0)
Hi Sharron -

Thanks for the update.

Good to see that you've found another donor.

However, the fact that he does not move his bowels everyday presents a question mark to me. According to my GI, this is a sign of some undiagnosed bowel disorder and perhaps constipation.

There's an awesome site called gutsense that has some valuable information on bowel movements. Here's the section detailing how often people should go.

Thus, ideally, teens, young adults, and middle-aged healthy people should move their bowels at least twice a day, usually after breakfast or lunch, and after dinner. Meals that contain dietary fat benefit the process.

Best.

Post Edited (Guardian7) : 5/21/2014 7:54:00 PM (GMT-6)

Posted 5/22/2014 5:34 AM (GMT 0)
Thanks Guardian, I've read it and will try to verify with my donor about the type on Bristol Scale. See where uc takes us, never thought I would have to do something of this nature. I'm about to go to GP and try to talk him into prescribing Wellbutrin (Bupropion).

Sharon

Post Edited (sharron19) : 6/3/2014 2:07:56 PM (GMT-6)

Posted 5/23/2014 4:59 AM (GMT 0)
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 plausibly 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

Post Edited (sharron19) : 6/3/2014 2:08:54 PM (GMT-6)

Posted 5/23/2014 9:11 AM (GMT 0)
Hi Sharron -

I have to disagree with POP on this one. 2 and 3 on the scale are a sign of bowel problems and could be potentially problematic down the road.

A large majority of the population suffers from bowel problems such as constipation, hemorrhoids, fissures and even undiagnosed IBS. I believe issues pertaining to the gastrointestinal tract are quite common, as drugs like prilosec and prevacid are best sellers.

I believe 4 and 5 are as optimal.

Read more about it here.
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