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counting success stories with fts (continued)

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Ulcerative Colitis
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Posted 12/25/2014 11:07 PM (GMT 0)
Nenuss -

That is wonderful news. Keep us posted on his status.

Did you use Hurst's protocol? Where did you get the information from?

Thanks.
Posted 12/25/2014 11:19 PM (GMT 0)
What is hurst protocol?

This is our status. We had FT done at hospital in a trial last week. We did at home trial FMT last Sunday after two days. We gave another 2 days gap to see any reactions. After that we did 3 straight FMTs and plan to do another 7 FMTs till her winter vacation.

She is getting solid well formed stool once a day. We are not able to see blood.She was complaining of pain 1st few days after FMT and so we stopped adding sea salt as we thought sea salt may be hurting her ulcers and that seems to have helped a bit. We are seeing that my daughters BM timings and number of times is becoming similar to my wife who is the donor.It is still very early days for us.

One tip for all
=========
The cheapest rectal syringe is 8$ online. We used that initially first few days. After that we have been using fleet enema bottle after disposing the contents and washing it with distilled water and also removing inside flap which controls the flow. The cost of this is 70 cents per bottle if you buy at costco. To filter the stool, we are using kitchen drain stainer from dollar tree for 1$. Each FMT costs less than 2$ per day literally.
Posted 12/26/2014 12:36 AM (GMT 0)

kamakya said...
What is hurst protocol?

This is our status. We had FT done at hospital in a trial last week. We did at home trial FMT last Sunday after two days. We gave another 2 days gap to see any reactions. After that we did 3 straight FMTs and plan to do another 7 FMTs till her winter vacation.

She is getting solid well formed stool once a day. We are not able to see blood.She was complaining of pain 1st few days after FMT and so we stopped adding sea salt as we thought sea salt may be hurting her ulcers and that seems to have helped a bit. We are seeing that my daughters BM timings and number of times is becoming similar to my wife who is the donor.It is still very early days for us.

One tip for all
=========
The cheapest rectal syringe is 8$ online. We used that initially first few days. After that we have been using fleet enema bottle after disposing the contents and washing it with distilled water and also removing inside flap which controls the flow. The cost of this is 70 cents per bottle if you buy at costco. To filter the stool, we are using kitchen drain stainer from dollar tree for 1$. Each FMT costs less than 2$ per day literally.

Hey Kamakya -

Michael Hurst has a youtube channel and some DIY videos explaining how to do FMTs here. He posts on this forum as FecalTransplantforUC and provides some tips as well.

Glad to hear your daughter is doing better. Keep us posted.

Thanks.
Posted 12/26/2014 12:45 AM (GMT 0)
I have seen his youtube video many times and had not paid attention to his name.

By the way the protocol that I'm following is based on Texas clinical Trial.

FMT treatments:
First FMT will be delivered through colonoscopy. Enemas will be given periodically to complete a total of 12-week period of therapy.
Days 2 through 5 (Week 1): Subjects will present to the ambulatory clinic daily for clinical symptom evaluation and fecal retention enema (60-250 ml rectally [as tolerated] with retention for at least 60 minutes) administration.
Week 2: Enemas will be given 3 times a week.
Week 3-12: Enemas will be given weekly for a total of 8 weeks.
Posted 12/26/2014 5:31 AM (GMT 0)
Hi Guardian7,
Yes, we are doing Hurst's protocol. We use the rectal syringe 8oz, Imodium (he doesn't need it anymore), Wellbutrin, protein shakes, we've done it over 16 days straight. We do it at night. The first couple of times my nephew couldn't hold it for more than 45 mins. But now he holds them for over 6 hours no problem.
The only thing we do different is that we use Destilled water (no salt).
Tonight we decided to start doing them every other day.
I will keep you posted, but please, ask anything you want... I'll be happy to answer and help in anyway...
Posted 12/28/2014 4:44 AM (GMT 0)
Need advice from FT experts.

We have done so far 6 FTs. The only issue/symptom that my daughter has is abdominal pain. We plan to continue FTs for another one week. How much time do i need to give for FTs abdominal pain to go away?
Posted 12/28/2014 5:23 AM (GMT 0)
Hi kamkaya,

I would keep doing them daily, she will notice the change little by little. With my nephe the first few FMT gave him a lot of gas, cramping and pain (due to the gas). he started taking gas x, it didn't help. He took Imodium and immediately felt better.
Is your daughter taking Imodium? It also helped him to retain the transplants.
I read somewhere that the pain/gas at the begging get of the transplants can increase because the bad bacteria is fighting the good bacteria.
We have been doing them for a month almost and he looks and feels amazing. Still a bit of pain when he has gas, but he thinks that it might be the normal feeling people get with gas, he just has to learn what normal feels like :)
Posted 12/28/2014 6:17 AM (GMT 0)
My daughter is able to retain the donor stool for more than 10 hours and so we are not giving her imodium. In fact we are worried if she is holding more than required.

Our only symptom is abdominal pain,burping and bloating and these were there even before fts.
Posted 12/28/2014 7:56 AM (GMT 0)
Does she feel any changes at all?
Also, just going back to your previous post... I don't know if it makes a difference, but we are doing 8 oz (240 ml) each time. The first change we notice was the color and smell of stool. The pain changes took a bit longer. We did 5, then skipped a week, then lavage and then daily... He noticed changed in the pain level after the lavage... Maybe a week or 10 days into it.
Posted 12/28/2014 3:25 PM (GMT 0)
The main change we have seen so far is consistency of stool which has become very formed and no visible blood.The frequency has reduced to 1-2 times a day. We have seen her food intake has increased.

How did you do lavage? I thought it would need a medical expert to perform it.


We started FTs on 12/19 and it is now about 9 days. We have done so far 6 fts.These symptoms are still there are 1>abdominal pain 2> bloating 3> burping 4> sometimes heart burn. How much time did it take for you for these symptoms to reduce or stop?
Posted 12/28/2014 5:28 PM (GMT 0)

nenuss said...

Thank you for every one of your comments. I wanted to mention that we take this extremely serious; UC has changed my nephews life in many ways... unfortunately he has been in and out of the hospital for over 3 years and he has not been able to live a "normal" (what is normal really?) life.
In any case, he is been doing amazing with the transplant.
Due to UC he lost aprox 40 pound and since we started he gained 20 back.
The improvement is amazing! We wont just stop the medicine cold turkey, I just wanted to know if anybody had experience in how to reduce it gradually and then see how he does.
I hope the new Dr. we are going to meet on Feb is supportive of this treatment. His previous Dr. was very supportive and encourage the DIY FMT ( he does FMT for C.Diff, obviously not allowed to do it for UC).
I read a post with the issue of "cure" came up... and I respect everyone's opinion. IMHO, if you don't have symptoms, it doesn't matter what you call it :)
If my nephew can live without going to the hospital every few months... go to school, go out with his friend, etc... honestly, that's all that matters.
I truly appreciate all your comments and concern.
All your advice and guidance has made a difference so far...

Thanks so much!

Hey nenus -

I pulled this from the other thread. I am glad the previous doctor was supportive of the FMT. Who is this new doctor and where are you located?

As for me, I have not done FMT yet though I do plan on doing it once I find a suitable donor (this is turning out to be harder than I thought).

Thanks.

Post Edited (Guardian7) : 12/28/2014 10:32:10 AM (GMT-7)

Posted 12/28/2014 6:11 PM (GMT 0)
@kamakya,
the changes in the stool are a great... to me, it show that some change is happening! His previous dr told us to look up a cleanse for a colonoscopy... I am trying to remember the name... oh, just google mirilax prep.
As far as the symtoms go... every day we see a little improvement. We did the first 5 and he noticed changes in the stool, he said the color changed. Then we skipped one week. We did the lavage, and I think the pain started to decrease, mmm... maybe 10 days after that. He mentioned that Imodium helped with the pain because it helped with the gas.
now he doesn't even take the imodum because he doesn't need it. When he eats something very heave (burrito), he felt a little bit of gas and a little pain, but it was relieved with a little bit of walking :)
Posted 12/28/2014 6:17 PM (GMT 0)
@Guardian7,

I am glad you are going to start the FMT. I am sorry you haven't been able to find a donor...
This is really out there... but I will be happy to be your donor :) I live north of Houston. Where are you located? I know the logistics might not be easy, but might be easier than going to Australia ;)
I would gladly get all the test done ( I didn't get tested before, because the dr didn't think it was necessary since I just gave birth and had lots of tests done)
anyhow... just a thought...
Posted 12/28/2014 6:22 PM (GMT 0)

Nenuss said...
@Guardian7,

I am glad you are going to start the FMT. I am sorry you haven't been able to find a donor...
This is really out there... but I will be happy to be your donor :) I live north of Houston. Where are you located? I know the logistics might not be easy, but might be easier than going to Australia ;)
I would gladly get all the test done ( I didn't get tested before, because the dr didn't think it was necessary since I just gave birth and had lots of tests done)
anyhow... just a thought...

I would love for you to be my donor, but I'm afraid I live close to the DC area. If I am around Houston at some point, I will definitely seek you out. Thank you very much. It means a lot.
Posted 12/28/2014 6:31 PM (GMT 0)
Absolutely, just keep it as an option... You just never know...
If you can, add your email address for a few mins so I can send you and email and, in the future, if you ever want to contact me... Feel free to do so...
Posted 12/28/2014 6:36 PM (GMT 0)
Sure thing, love. :)

My email is [email protected].
Posted 12/28/2014 7:27 PM (GMT 0)
Done!
Posted 12/28/2014 9:26 PM (GMT 0)
Hi Guys, I was so happy to see the new development on this thread. We now have more people reporting their recent experiences with FTs, more useful information is gathered and people offer each other their support and even practical help. I love it!


Nenuss, I've added your nephew to the list of 'in progress'. Thanks for being so thorough with the details. I pray and hope that he will be another one of our success story. Also, thank you for being so kind, understanding and compassionate towards the UCers.

 
Kamkaya, glad to know about the solid stool with no blood! Are these symptoms of abdominal pain, burping and bloating she is experiencing now are worse than they had been prior to FTs? Hard to tell another one what to do, in particularly when it comes to kids, but I think if I were you, and if symptoms were not worse than before, I would carry on with the FTs for a bit longer. When I do get to do the therapy, I intend to follow Prof Brandt protocol and do FTs every day for 2 weeks, then every other day for 4 weeks, then once a week for 8 weeks and then continue once a month for maintenance. I've added some more detail to your entry on the list but some important information is still missing such as your daughter's age. Please let us have the information so we can help each other even more.

 
Guardian, so great to see you back on the thread! You are very valuable to us and your great belief in and enthusiasm about FTs is greatly needed here. I feel I owe you an apology for disappearing at such a crucial time and after you had been very supportive. Sorry. I really hope you get to find a suitable donor and gain a CURE.


It looks like we can start the new year with a more optimistic feeling and hope for the new ones who are currently on the therapy.


Good Luck to you all,


Sharron

Post Edited (sharron19) : 12/28/2014 10:36:47 PM (GMT-7)

Posted 12/29/2014 7:48 AM (GMT 0)
Kamakaya, I've just e-mailed Hurst asking him to visit us again and advise you on how to deal with the issue of pain, heart burns, etc. From what I understand, he's been communicating with many people who were doing and still doing FTs. Hopefully we'll hear from him soon.

Post Edited (sharron19) : 12/29/2014 5:16:01 AM (GMT-7)

Posted 12/29/2014 1:52 PM (GMT 0)
Sharron -

Apology accepted.

I'm kidding. There's no need to apologize. We are all in this together, and as such, we all have our struggles to deal with. You've done a great job of compiling information and making this thread searchable. Valuable information like this is literally life when it comes to diseases and cancers.

Will keep you posted.

Best.
Posted 12/29/2014 2:42 PM (GMT 0)
Sharron

My DD had abdominal pain, bloating and burping even before FTs. So these symptoms are currently no change after FTs (week 1). Another issue is before FTs her stool where very soft and now after Fts it is bristol chart 2 or 3 in consistency. She has two big ulcers one in ascending colon and one in transverse colon. We are thinking when the stools are passing these two spots her abdominal pain is increasing. After BM she says her abdominal pain has reduced. We are planning to do this entire week FTs and hopefully even these symptoms become better gradually.

Another interesting thing is that my daughter is able to hold donor stool for more than 10 hrs. We give her fts in morning and by late evening around 08:00 PM we have to ask/force her to have a bm. The donor stool comes out properly formed back and is not in liquid format. Our guess is donor stool comes late evening and her stool is next day morning.

Post Edited (kamakya) : 12/29/2014 7:48:59 AM (GMT-7)

Posted 12/29/2014 4:20 PM (GMT 0)
Hi Kamakya, it's interisting that you mention that the properly formed stool might be hurting her..
Just last night, I was talking to my nephew and we saw a little bit of blood in his stool, not like UC. More like a drop here or there, and he has no symptoms of UC.
He is going to stop 1 medication (not UC related) because it causes bleeding... (Yeah the pain Dr prescribed something that causes bleeding for the pain - he doesn't need it anymore since he doesn't have pain and the medicine is "take as needed").
Going back to your post; we were talking about his bm, and how he doesn't know how to poop like a healthy person, he is just so use to the diarrhea.... I told him not to force it, since this can hurt him (and cause hemorroids), and just let it flow when it's ready (sorry tmi).
If you ask me, I would say, maybe don't ask your daughter to try to poop. I read of people holding the transplant for more than 24 hours. So don't worry if it stays there for long, if anything, I would think it is helping.
Is the new stool like the donor stool? At what time does the donor have a bm? Is she eating any fiber? Protein?

Post Edited (Nenuss) : 12/29/2014 9:33:53 AM (GMT-7)

Posted 12/29/2014 5:41 PM (GMT 0)
The new stool is mostly like donor stools. She is taking fiber and protein diet. If I do not force her then I think she can hold donor stool for 24 hours. But we are guessing when she complains of mild abdominal pain we think the formed stool is close to her ulcer and ask her to go for BM. After BM most of the times, she says her abdominal pain has reduced a bit.

Post Edited (kamakya) : 12/29/2014 11:12:07 AM (GMT-7)

Posted 12/29/2014 8:54 PM (GMT 0)
Hi Kamakya,

In my opinion, if the transplants aren't causing any adverse reaction, I would continue until he pain is reduced. I am convinced that the pain will decrease.
When we started the FMT, we decided to do them as long as it takes, until his symptoms are completely gone; and that is what we are doing. For example, 4 days ago, we decided to start skipping one day... but with the little blood we saw yesterday, we are going to continue doing daily transplants.
I think of it like this, if you have a cut in your hand, it takes at least one week to heal a bit (and for pain to stop with a deep cut)... then an ulcer in your colon also needs lots of time and help (fmt) to heal.
Please let me know how it goes and I will keep you posted.
Good luck!
Posted 12/30/2014 4:36 AM (GMT 0)
Hi there,

It's been awhile since I've been on HealingWell and these threads, I haven't had a chance to wade through all of this yet, but it looks like there is a lot of activity and success stories continue to roll in. Sharon reached out to me through my website to see if I had any advice for a girl who is going through this right now.

As a quick update on my own heath 3 and a half years after using fecal transplants to treat my Ulcerative Colitis along with some other treatment methods including protein shakes and Bupropion (Wellbutrin.) I still live in the Washington, DC area and am still free of Colitis without continued drug therapy, nutritional or herbal supplements or highly restritive diets. All of this after 12 years of Colitis that brought me to within days of surgery to remove my entire colon and rectum. More details about my story can be found on this forum I also go into detail about methods / protocols in my YouTube videos, website and ebook and offer private support to readers of my book.

I believe that FMT can be effective most of the time or almost all of the time for Ulcerative Colitis and quite possibly for many cases of Crohn's Disease too. The times people have contacted me and were struggling it was due to missing one of the following.
- Doing the Fecal Microbiota Transplants (FMTs) long enough with a healthy donor. This may require doing them on and off over time, switching donors, attempting a top down approach through "poop pill" capsules or a nasal gastric tube, a round of antibiotics followed by fecal transplants. Other factors may include the location of inflammation and severity as well as the amount of diarrhea or less commonly constipation.
- Effectively limit / suppress inflammation using drugs like Mesalamine or Prednisone for some time until tapering off them.
- Effectively limit IBS related diarrhea / muscle spasms with certain anti-depressant or anti-anixiety drugs or supplements if necessary. This could help proper digestion, alleviate stomach pain, help the new gut bacteria become established and help the mucosa heal without being aggravated.
- I consider Bupropion to be both an anti-inflammatory (lab tests with mice show it to be a TNF inhibitor) and helpful for dealing with IBS related abdominal pain, diarrhea and related symptoms. I really believe this was key to my success.
- Over the counter drugs are very helpful too, Gas-X (Simethicone) is very helpful for bloating and does not have any negative side effects. I popped those like breath mints while I was doing the fecal transplants.
- Getting the necessary nutrition to heal the mucosa - pre-digested whey protein shakes (most of which are high in the amino acid L-Glutamine which can also be taken separately.) Whey protein shakes don't have to be fancy or organic, as long as they itemize what kinds of proteins / amino acids they have and the name has something to do with muscle, power or strength :) The one I primarily used at the time was Muscle Milk is actually more of a meal replacement shake that is high in whey protein and is free of lactose, casein and gluten and also has some vitamins and minerals.

I hope that helps a little. Does anyone have any questions where they are at an early stage of doing the FMTs and haven't yet hit the tipping point of success or is stuck on how to get started?
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