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counting success stories with fts (continued)

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Ulcerative Colitis
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Posted 12/30/2014 5:18 AM (GMT 0)
Hi Michael, thank you so much for your post and for posting all your information online... You have made a huge difference in my nephew's life and our whole family.
I wanted to ask you, how did you stop taking the meds for UC. My nephew is doing great with the FMT (almost a month since we started - I am the donor). We don't know how to taper off them. Any advice would be appreciated.
Ps: A few days ago I sent you an email to thank you for everything you have done! Thanks again!
Posted 12/30/2014 4:16 PM (GMT 0)
Michael,

We are doing FMT for my daughter. We have done so far about 7 FMTs and plan to do even this week daily FMTs.

Her stools are well formed with no blood and has a BM every day once or twice.

However, so far her abdominal pain, bloating and burping has not reduced yet after FMTs. How much longer will it take for these symptoms to go off.
Posted 12/30/2014 8:07 PM (GMT 0)
You're welcome Nenuss! As for tapering, it depends on the drugs and how important they are for keeping inflammation in check until the tissue has healed past a certain point.

I rapidly tapered off of Prednisone within two weeks after I stopped the fecal transplants. I then stopped the mesalamine (canasa) suppositories. Then Apriso (once a day time-released mesalamine.) However I had a slight comeback of symptoms, which in retrospect may have been caused by the biopsy they did during a colonoscopy, so I went back on Apriso until I started forgetting to take it, although sometimes I would still have some occassional diarrhea, which may have been diet-related and then I went back on for a few days. By December, about 4 months after I stopped the fecal transplants I decided I was done for good unless I ever saw blood in my stool again. Honestly I was just done paying $500 a month for the prescription and trips to see a doctor who told me this was only temporary, it couldn't last.

Kamakya: It sounds like you might already have things in good shape and might consider tapering down the fecal transplants. I assume you are talking about Ulcerative Colitis and that you did enemas for the FMTs. Also is your daughter still taking any other medications to suppress inflammation? FMTs administered by enema should not directly cause adverse effects in the small intestine and stomach.

Bloating in the colon from bacterial die-off and also from competing bacteria due to the continued fecal transplants is a likely cause. Gas-X (Simethicone will help greatly for gas bloating, it will help break up the gas bubbles so she can ... expel the gases :) Warm wash cloths or towels on the abdomen and massaging and sort of working / pushing gas through the colon to get it out are helpful. Some of this will also fade in time as the muscles regain proper strength and movements and the mucosa regains elasticity that may have been lost by inflammation or scarring. Things have to heal and get used to the new normal.

Moderate physical exercise can definitely help even simple jumping jacks. Exercises to strengthen abdominal and pelvic muscles like kegel exercises were helpful for me in terms of controlling bowel movements, expelling gas and preventing it from accumulating in the first place. And you can even do these while watching TV or at a desk.

If the gas is a problem in the small intestine and stomach then other possibilities include food allergies or intolerance including dairy, emerging Irritable Bowel Syndrome or secondary effects from bacterial die off in the colon, or some sort of vitamin or mineral deficiencies which could result from problems absorbing nutrients due to prolonged inflammation, or medication or restrictive diets used to help treat the illness.

My overall hunch is that after you stop or at least taper down the fecal transplants and the body and microbiome adjust to the "new normal" the gas and cramping will subside and everything will be just fine. The new microbiome might already be established so more fecal transplants at this point might not be necessary or can at least be tapered down. In the meantime try light exercise, gas-x, and experiment with digestive enzymes or eliminating certain foods to see if that helps. Also try Valerian root extract at night for sleep, this herb is also calming in general and helps calm the bowel muscles.
Posted 12/30/2014 9:15 PM (GMT 0)
Hi Michael, your information is so helpful!
We have done aprox 20 FMT (5 daily, skipped 1 week, lavage and almost daily ever since). My nephew has almost no pain, maybe a little on his left side for a few minutes, stool is well formed, no more blood, no urgency. He is taking Immuran and asacol. Do you think we should stop? Taper down? We started skipping one day and he saw a tiny bit of blood (but I think it was du to pain medication that irritates the colon- he is not taking it anymore and the blood stopped yesterday)... I wonder if there can be too many FMT? hiw often should we do the FMT?
Thank for taking the time to help us! What you have done is wonderful!
Posted 12/30/2014 11:06 PM (GMT 0)
For healing the ulceration and stopping blood the whey protein shakes that contained L-Glutamine were highly effective for me. I have also heard good things from others who have used just L-Glutamine supplements. I credit the protein shakes with helping me recover enough as my surgery date approached so that I could give FMT a try. So I strongly recommend protein shakes / L-Glutamine as a first step to healing tissue and making sure that bleeding is gone for good.

Also consider supplements for Vitamin B12, iron (I used comfort iron from Vitamin Shoppe) vitamin K supplements which help your body produce more blood coagulants to stop bleeding (take with some sort of fat to aid absorption.) Having a good red blood cell count will help with healing, energy and immune system function.

I would continue the Asacol for several months after you seem to have symptoms completely under control. Asacol (mesalamine) can also help promote healing and also has limited systemic effects. So this could be the last to go.

I could see wanting to get off Immuran sooner, since the side effects and risks are much higher. I got off Prednisone very rapidly after my big breakthrough, although over the years I have often had some problems with a weakened immune system, so I want to get away from anything that suppresses my immune system as soon as I can. While I never took Immuran, a pro-drug that the body converts into Mercaptopurine (6-MP,) I was on Remicade (Infliximab,) a TNF inhibitor, which can also act to suppress the immune system, for almost a year ending about 9 months before I started the fecal transplants. However positive results from Remicade were fleeting at best and I stopped it after being hospitalized for 4 days with a secondary infection on my leg.

I would wait at least a month or two until after things are pretty consistently stable before messing with the Immuran, then see if you can taper down the dosage over time, kind of like you would with prednisone. This may cause some minor disruptions along the way, however hopefully those would stabilize within a few days and then you can step it down again some time later.

Of note, for me improvements continued for some time after I finished the fecal transplants. There was still loose stool and diarrhea here and there, some ups and downs, although over time the periods of time for symptoms that were "less good" became less noticeable and for a shorter duration. However I noticed that this was somewhat dependent on my diet and I also noticed that this did not happen at all at times when I went back on Bupropion for use as an antidepressant. In my case I think diarrhea-predominant Irritable Bowel Syndrome (IBS) related to some degree of emotional stress or depression was a factor for most of my life even before I got Colitis and contributed to my case of Ulcerative Colitis. So I basically counted my victory over Ulcerative Colitis as when I reached a point where I consistently had no blood or mucous in stool, a lack of urgency, and no more than 3 bowel movements in a day. For those without IBS, or those who manage it properly, I think problematic digestive symptoms might improve and be gone much faster than they were for me.

By the way my DIY Fecal Transplant video was just featured in an article today. io9.com/home-fecal-transplants-are-on-the-rise-1676170584/all Word is continuing to get out there!
Posted 12/30/2014 11:13 PM (GMT 0)
Michael -

I think they'll dub you the FMT messiah. The savior of people with "incurable" diseases.

I enjoy these updates and suggestions very much. Keep fighting the good fight, brother.

Best.
Posted 1/1/2015 1:25 AM (GMT 0)
Hi Michael, honestly I can't think of the right words to thank you!
He has been taking the protein shakes since we started. We are pretty much doing every thing you said, in your blog, to do ;)
We will definitely follow your advice on the meds.
Congratulations on your video being featured!
I cannot thank you enough for the valuable information... If there is anything I can do for you, now or in the future, please let me know!
Oh, quick question, how did you know it was time to stop the FMT?

Happy new year!
Posted 1/3/2015 1:37 PM (GMT 0)
Does anyone know the dosage of bupropion Michael hurst was on during FMT treatment? Was there a reason why the immediate release version was used instead of the sustained release version? How long was Michael on bupropion for?
Posted 1/3/2015 4:32 PM (GMT 0)
Hi Michael

I love your posts, they give me a lot of hope for the future. Like you, I was diagnosed with pancolitis back in 2011. I've flared 3 times, my last was fairly minor in that it was subdued with 2 weeks of rectal steroid foam. Previous two flares required oral steroids, 2 weeks at 40mg with a taper.

I've taken a lot of steps to get myself back into remission, using advice from TheAnswersYouSeek and the Briggs protocol, not sure how familiar you are with those. Anyhow, I'm at a point where I now go either once a day or once every two days. Solid, usually well formed. It's a little softer and thinner than way back when but no big deal. That said, I know I can't just eat anything I want. A weeks worth of just eating anything I wanted would probably kick something off. Would you say this was the ideal time to add fecal transplants into the mix or bring out some heavier guns until everything is "perfect"?

Kev
Posted 1/4/2015 10:23 PM (GMT 0)
What are people's thoughts on taking complementary probiotics orally whilst performing FMTs?

Wouldn't taking oral probiotics be important, especially if you had used antibiotics as preparation prior to starting the FMTs? On the other hand, could taking oral probiotics hinder the FMTs success? (ie. bacteria from probiotics fighting against bacteria from FMT infusion?)
Posted 1/5/2015 12:35 PM (GMT 0)
Hi Michael, thanks a lot for coming back with more advice. I've updated your current statue on the list. No symptoms and no medication!

Kamakaya - I hope the improvement continues and your girl does not suffer any abdominal pain or heartburns. If I were you I would take Michael advice into serious consideration as he is probably one of the few people who have both personal experience and vast knowledge of other people's experiences with FTs. Kamakaya, there are probably other mothers in your situation who read this thread and consider starting doing FTs to their dear children. Your information has helped a lot of us. Could you please let us know the age of the girl, date of dx, severity of uc and detail about the donor.

Nenuss - please keep us updated and let us know when you think your nephew's story can enter the top list of 'success stories'. I suppose it should happen when transplants are done no more than once a month and he is still in remission (could be with a low dose of Asacol etc).

Maxmillan - I'm not sure but I think Michael was taking 150mg twice a day. From what I know the consumption of Bupropion has been restricted to 300mg per day. I remember he wrote that he wasn't sure why it is more efficient than the slow release. I might try to get the IR before I start the FTs. For me, I've had to learn not to try too hard to understand the reason for everything but to listen to people's experiences and to by own body. With regards to oral probiotics, In my opinion there shouldn't be a problem with taking them while doing the FTs. I've started consuming sauerkrauts lately and I hope this will be sufficient.

Sharron

Post Edited (sharron19) : 1/5/2015 2:33:07 PM (GMT-7)

Posted 1/5/2015 3:30 PM (GMT 0)
Hi Sharron. Thanks for answering my question. From my understanding, I think Michael got better when he started using bupropion after his 5 week stint with FMTs. In other words, he was no longer administering FMTs when he started bupropion? I think he did 5 weeks of home FMTs, then 2 weeks after that, he started bupropion. Correct me if I am wrong here.

This would mean the FMT bacteria were still colonizing his gut 2 weeks post FMTs.

I am also interested to hear other's thoughts on how to perform the procedure around your daily work schedule. If the donation is in the morning, it's hard to do the infusion, then subsequent tummy massage (ie. 10 mins on left side, 10 mins on back etc) and still arrive to work on time. Can you chuck the stool in the fridge then do it when you get home?

Lastly, does anyone have any idea if the bowel cleanse 1 day before the first infusion is necessary? I know it would be necessary for an FMT administered via colonoscopy, but if you are just doing enemas, do you really need to bowel cleanse? What benefit would it provide?
Posted 1/5/2015 6:46 PM (GMT 0)
sharron

My DD is 10 yrs old and donor is her mother. She had pancolitis moderate to severe. Recently she was diagnosed also as crohns colitis. She had come C Diff positive once in Nov. Before her colitis symptoms started she was on antibiotics for sometime and that may have caused all her IBD issues.

She is having so far formed stools once a day with no blood. Her appetite seems to have increased.

Her bloating and burping is still there as of now.

Post Edited (kamakya) : 1/5/2015 1:38:28 PM (GMT-7)

Posted 1/8/2015 9:47 AM (GMT 0)
Kamakya - I was very sad to learn that your DD has had to deal with the symptoms of UC, Crohn and C. Diff at such an early age. My DS had been having lots of problems with his digestive system from the age of about 6 which lasted for about 7 years. I noticed then that if I eliminated from his diet the ingredients which I myself could not have (which was a long list) he was fine. Sometimes I thought it was a psychological reaction to my condition, but there were plenty of incidents when someone gave him, by mistake, something which had an ingredient he was not suppose to have and he still reacted to it badly, despite the fact that he had been told that the food had been checked to be safe for him to have (double blind test). I now remember there were also incidents of cheating and embarrassing moment for him but on the whole he'd managed to keep a restricted diet for all those 7 years. At the age of about 12 and a half, all of a sudden, there was a great positive improvement in his condition and we noticed that the only thing that was causing diarrhea was dairy. To a less extent he remained also sensitive to red meat, lentils, beans and corn but he is not too bothered about it. He is 17 now, keeps a healthy diet out of his own free will and knows to stay away from diary. Today he does have a sensitive gut but nothing like what it used to be before. I'm not sure whether it was the strict diet that he had had for such a long time or my many prayers to God that caused the change. Probably both. I really sympathy with what you are going through and told you about my son because I wanted to tell you that the condition can get better.

Kamakya, thanks a lot for your update. I've already added it to your entry on the list. Could you please let us know the date of diagnoses (doesn't need to be exact) and the age of the donor.

MaxMilian - You are right about Michael getting better not immediately after the 5 weeks of FTs but actually after starting taking the Buprion. I agree with you on the thought that the process of colonization is long and one does not always feel better while it is happening. I don't see why colonizing can't continue to take place after the administration of Fecal enemas had ceased. I think the rest of the people wrote that they felt an improvement right away or after a few transplants. However, we already know that there is not 'a one fits all' with this illness. Nowadays, I try my best not to let the rational thinking block me from being open to listen to the experiences of others and also from using and following my own and other's intuitions. Otherwise I will become an MD-like and MDs IMO, despite the vast money spent on research and drugs, haven't yet managed to come with any good answer. With regards to how to perform the infusion around a busy work schedule, I intend to take two weeks off work to begin with and then work only part time for four weeks when I administrate on alternative days. I was advised that it's ok to keep the stool in the fridge but only for a few hours. I do plan to get a small freezer (second hand) and use frozen stool when I can't have a fresh one. With regards to the bowel cleanse prior to FTs, I don't intend to do it or take antibiotics. However, I do intend to only drink condensed chicken soup for about 3 days prior to the first FT. I have been keeping a very strict and restricted diet lately, free of everything that is known to upset my gut. Also I am trying to starve the bacteria by avoiding the carb all together. My BMs are far from being normal but I can control it, which for me is a great achievement. I've recently tried to have fresh fruit and the symptoms came back. Perhaps dr riggs was right when he wrote that in that way one can cure oneself but I remember that he wrote that it may take years for it to happen following this method. dr riggs had a great success with FTs and I think his case is very inspiring.

Kevin Watson - Welcome to this thread. Good Luck with FTs and please keep us informed.

These are my thoughts at the moment and what I plan to do when administrating the FTs but I might alter them as I gain more understanding from reading new posts. Thanks a lot for all of you for adding valuable information to this thread.

Sharron

Post Edited (sharron19) : 1/8/2015 9:12:57 AM (GMT-7)

Posted 1/16/2015 4:24 PM (GMT 0)
Dear UCers and relatives/friends of UCers,

I would like to share my current situation, plans and thoughts about FTs with you.

My colitis started in 2000 after a course of antibiotics. Luckily, shortly after I was diagnosed I decided to try the Gerson Therapy, which did not cure me, as I expected at that time, but provided a remission while I was on it. After 11 months of this intensive therapy I decided to stop it and observed that I could be on remission (more or less) by only following the diet regime of this therapy (didn't need to do the coffee enemas, juice, inject the enzymes and B12 or take the supplements that goes along with the Gerson Therapy). I could also add chicken and egg to the Gerson Diet. Which means I could have some control over my bowel movemens but the problems with weak knees and lower back had been progressing over the years. It worked for about 12 years and then about two years ago, from an unknown reason, my condition got worse and I stopped being able to tolerate fresh fruit and fresh vegetables. I took 5-asa for 3 months (first meds ever since those antibiotics that caused/triggered the disease) and was hospitalised with a severe liver infection. That was when I found about FTs and decided to try it. I had a short trial last year of 3 transplants, using my son's stool, and I did feel some improvement. However because my son fell ill, and because he'd had problems with his own gut himself, I decided to wait until I would have a more suitable donor and until I would manage to get my gut to a better state. As part of preparation for FTs I took Wellbutrin (Bupropion) for about a month. I then developed UTI which went to the kidney. I was given IV antibiotics. I'm not sure about a connection but just to be on the safe side I stopped taking the Wellbutrin.

update: I've recently started taking Interfase (Klare Labs). I bought both with and without EDTA and I alternate between them. I try to take two capsules every night. No side effects that I'm aware of. Also, for a couple of months now I eat home-made saurkraut every morning. I've had some fresh fruit just recently and it made me feel bad again.

I decided to set a date for the transplants and I'm hoping to start it at the beginning of April. So I have two and a half months to do my best to bring my gut to its best state I can.

I'm aware of the debate about imbalanced gut flora vs. a faulty autoimmune system. I personally think these two interact with each other to maintain the UC state. However, I don't see a reason why we can't sort one of them with treating only the other. Just like with many other things in life and in nature. (For example, a drastic emotional development in an individual can be ensued by a positive change in one's old relationships) So, the immune system from some known or unknown reason started at one point of someone's life to relentlessly attack the 'good' bacteria in the colon. Many people agree about this and it is the reason for the success of attaining long term remissions with many of theses drugs we are given. I believe that by inducing a good, rich and balanced bacteria through FTs the immune system can re-learn its old and familiar way of behaving. However, sometimes this may take a long time and there might be a need to continue with the transplants for some years, but maybe only in a very low frequency.

Wishing you a full recovery.

Sharron

Post Edited (sharron19) : 10/30/2015 10:53:30 PM (GMT-6)

Posted 1/19/2015 11:47 AM (GMT 0)
Hi,

Just a reminder to everyone who is on the lists of this thread (page 7) to post an update. We would love to know how you are doing.

I'm thinking about adding a new list at the bottom and name it 'Coming Soon' but feel too arrogant to put myself before anyone else. Any volunteers?

I've added some missing details to by previous post.

Post Edited (sharron19) : 1/31/2015 2:02:50 PM (GMT-7)

Posted 1/19/2015 1:41 PM (GMT 0)
Hi Sharon!
Good luck with your transplants! Who is going to be your donor?
I just posted an update about my nephew. In summary, he is doing great, not 100% yet, but everyday he gets a little better. We are doing FMT twice per week. We will probably continue twice per week for a month at least, and then do a couple of months once per week. Oh, he has gained 34 pounds and has almost no pain :).
Good luck!
Posted 1/19/2015 1:54 PM (GMT 0)
Thanks for the updates Nenus and Sharron.

I'm aware of the debate about imbalanced gut flora vs. a faulty autoimmune system. I personally think these two interact with each other to maintain the UC state. However, I don't see a reason why we can't sort one of them with treating only the other. Just like with many other things in life and in nature. (For example, a drastic emotional development in an individual can be ensued by a positive change in one's old relationships) So, the immune system from some known or unknown reason started at one point of someone's life to relentlessly attack the 'good' bacteria in the colon. Many people agree about this and it is the reason for the success of attaining long term remissions with many of theses drugs we are given. I believe that by inducing a good, rich and balanced bacteria through FTs the immune system can re-learn its old and familiar way of behaving. However, sometimes this may take a long time and there might be a need to continue with the transplants for some years, but maybe only in a very low frequency.

Agree with this entirely. The immune system is mutable and not entirely pre-determined. Thinking the opposite way is a cop out IMO and gives pharmaceutical companies more reason to develop pills and other treatments that do not even get to the root cause of the problem. Latest research on epigenetics suggest that environmental factors (stress levels, diet, antibiotic usage, sunlight, etc) act as the trigger for diseases.
Posted 1/19/2015 3:02 PM (GMT 0)
Nenuss After how many weeks did the abdominal pain reduce or stop? If you press along the colon does your nephew have any pain?
Posted 1/19/2015 9:47 PM (GMT 0)
Hi Nenuss, I was so happy to learn that your nephew is still doing well and has been gaining so much weight. I think he was lucky to respond to it so quickly. For many others it takes longer and IMHO people give up sometimes too soon when facing an obstacle. You are wise to keep at it for a long time and to reduce slowly the frequency as he gets better. That's the way I plan to do it myself. I wish and pray for your nephew's full recovery. Thanks for the update, I've already added it to his entry on the list of 'in progress'. Please try to keep a good record of the transplants frequencies, their number and changes in symptoms, etc, so hopefully one day, and maybe soon, when his entry moves to the success list, many people will be able to make a good use of his and your experiences.

With regards to your question, at the moment I have two different donors and I intend to use both of them. One is a very good friend of mine who doesn't live nearby so I plan to use her frozen stool. The other is another friend's ten year old daughter who lives in my neighbourhood.

kamakya - I was just thinking, could it be that the pain your little daughter experiences now is, at least partially, psychological? I remember she is only 10 years old. When was she first diagnosed and what was the diagnosוs? It is wise to do all medical tests offered and try to make sure there is not a physical cause for the pain. However, sometimes we hold on to old familiar things, like illnesses, for a little bit longer than justified. Is the pain severe? Is it less than before FTs?



Sharron

Post Edited (sharron19) : 1/21/2015 6:22:18 AM (GMT-7)

Posted 1/20/2015 4:40 AM (GMT 0)
Her abdominal pain has not changed. When you press with little bit of pressure along her colon, she will scream. So it is not psychological. We unfortunately were not able to give her fts last weekend as she was very sick with condition similar to flu and sinus. However her flu test came negative. She is still suffering very hard with flu type symptoms. Now she is developing ear infection. Hopefully I can give her some fts this coming weekend.
Posted 1/20/2015 12:42 PM (GMT 0)
i love your posts because they give real hope, i'm also thrilled about the ongoing trials with fecal transplant pills. I've recently read an article about the top selling medicines which generate the greatest income for the pharmaceutical companies, and guess which were the number one and two? Humira and remicade. I think this may be the main reason why there are so many "life threatening side effects" of fecal transplant...
Posted 1/27/2015 4:06 PM (GMT 0)
Kamakya, how is your little daughter doing? Has the pain subsided? I hope it has.

Sharron
Posted 1/27/2015 6:21 PM (GMT 0)
She is doing fine with 1 BM daily formed stools and no blood. Her abdominal pain when I press along her colon is still there. I think it may take long time for inflammation and ulcers to heal. I'm taking one day at a time. We were not able to do FMTs for last 2 weeks (her last one was Jan 12th) as my DD and my wife had flu in between. Hopefully will do couple of fts this coming weekend.
Posted 1/31/2015 3:50 PM (GMT 0)
Hi Kamakya, I agree that the pain might be due to the long time the body takes to heal. Do you give her protein shakes or L-glutamine? Could you please describe the symptoms she'd suffered prior to FTs. For how long has she had it for? After how many transplants did you stop seeing the blood in stool?

My plan is to start Fts in two weeks from tomorrow (1/4/15). Yesterday I ate a very small portion of fruit and some dates and I am badly bloated now and suffering from diarrhroea again. Just another small test for the reassurance of my condition and hopefully from now on I will be able to restrain myself to the food I can digest for at least two months.

This is another call for anyone on our lists (page 7) to fill up the missing details and update us with his/her condition.

Good luck to all of you and a full recovery.

Sharron

Post Edited (sharron19) : 1/31/2015 2:14:26 PM (GMT-7)

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