counting success stories with fts (continued)

Sorry for taking so long to reply.

Thanks a lot Max for inquiring. I was doing kind of okay up until yesterday morning. Just to remind you, I'd experienced wonderful solid, once a day, BMs when taking both Amitriptyline (10mg) and Wellbutrin (150mg). When I stopped the tricyclic 6 days ago my BMs weren't great already. Probably because I'd been eating things which were known to cause problems. I've never regained the good BMs during the last week but it wasn't that bad either. I even started eating solid food every day. Unfortunately, yesterday I became very unwell. This time it started with UTI. Towards the evening I developed fever, nausea, complete lack of appetite, felt pressure in chest (mainly left side), very weak, high pulse, BP increased, itchiness, a sudden serious loss of memory, etc. Thank God, I woke up feeling better. Because I'd had such bad reactions to medicine in the past I decided to stop the Wellbutrin. Could be just a coincident but I can't be sure and from my experience doctors are likely to give me wrong information. Also, antibiotic will definitely be my very last resort.

Thus, I truly regret that, for the ones who want to try taking anti-depressants, and are not that sensitive to medicine as I am, I can't advise on which of the two was so helpful. Deep down I was always sure it was the Wellbutrin. I was holding on with my reply hoping to report on regaining remission after taking it on its own. Now I think perhaps it was both of them taken together.

Also, my good kind friend, the second potential donor has also become unsuitable for fts. She's had to take antibiotics last week for a bad ear infection while on holiday.

Michael, thanks for your advice. I will consider the protein shakes. But you can see know why I'm so careful with introducing something new. I took the slow release Wellbutrin. That's all I can get get here. If I try it again I might try to buy the immediate release over the internet.

Guardian, we haven't heard from you for a while. I hope all is well.


Wishing you all a complete recovery,

Sharron

Post Edited (sharron19) : 12/26/2014 10:30:36 AM (GMT-7)

Getting lots of protein is absolutely essential for healing damaged tissue. I know my available protein, albumin levels in blood tests, was very low due to restricted diets and chronic inflammation. I used Muscle Milk at the time for whey protein which is free of gluten, lactose and casein. Its about as close as you can get to a feeding tube so that or the "Naturals" version should be well tolerated. Foods that help absorb excess water and add bulk to stool will also be helpful.

As for Bupropion I don't know the details of your situation however the immediate release form is available at any pharmacy in the U.S. However you'll have to ask your doctor specifically for it because the once a day XL is the one they would normally prescribe. The IR form is the one that was cited specifically as being effective on the discussion threads here on Healingwell.com and the one I used initially when the fecal transplants.

Hi Sharron,

Are you asking Max and experience with FTs and wishing him a full recovery? I am fully recovered, the blood stopped 6 weeks after I started the fecal transplants, 8 weeks after that a colonoscopy revealed significant healing, 4 more months and I had stopped taking all medications.

Remind me once again how many fecal transplants you have done?

The protein shakes that were recommended by my colorectal surgeon at Mayo Clinic so that I would be able to heal from surgery, ended up enabling me to heal enough to get off Prednisone and then attempt the FMTs. Then the reintroduction of these was enough to help me get over the hump and beat this illness once and for all.

I can't emphasize enough how vitally important it is to have adequate or highly elevated amounts of protein to heal damaged tissue from ulceration. It is well known that your body needs protein to repair muscles after a workout, repair tissue after surgery and heal ulcerated tissue in the the body. This is especially important after having been on limited / restricted diets and having dealt with chronic inflammation for extended periods of time. At a time when your body needs much higher than normal amounts of protein it is deficient in it (albumin.) While fecal transplants and anti-inflammatory drugs may help limit and even stop inflammation, healing happens when the body rebuilds, which it simply cannot do without adequate protein. Therefore attempting to heal bodily tissue without enough protein is like trying to fix your home after a house fire without enough new building materials.

There is absolutely NO REASON not to add more protein to your diet to help heal inflammation, especially if it is pre-digested whey protein which requires no active digestion, just absorption. The whey protein would be even better than home made yogurt used for the Specific Carbohydrate Diet in that the meal replacement shakes are lactose-free and casein-free and even higher in L-Glutamine. Something like Absorb Plus or Muscle Milk Naturals would be highly effective to help speed healing and thus reducing the number of fecal transplants that are needed and the length of time that drugs are needed. Failing to do whatever it takes to get adequate protein to heal threatens to sabotage the ability for the fecal transplants and drug treatments you have been doing to work.

This brings me to another part of the CURE, that is largely overlooked - the psychological aspect of this. Actually beating a chronic illness like this is quite extraordinary and in my experience actually required having a tremendous amount of faith, actually willing it to happen by creating the experience of health in my mind and facing anything that I might be doing to hold myself back in spite of the tremendous efforts I had put into this. My roommate and donor challenged me on this when he talked about how in his hypnotherapy class they discussed how "secondary gain" causes people to sabotage their success when it comes to accomplishing goals, quitting smoking, losing weight or overcoming illness. This was after I had been doing the fecal transplants daily for over 4 weeks and was getting discouraged. He challenged me, what do you have to gain by continuing to be sick, what do you have to let go of to do what it takes? I thought about this long and hard. What did I have to lose that would stop me from doing everything I knew to do to get better. Sky Curtis told me about this too, that getting well after so many years of illness, so many years of struggle, might be felt almost like a loss of part of me, part of my identity in a sense.

I thought about this, was I subconsciously stopping or even sabotaging my healing? I came up with some answers for myself and made a final DECISION to be done with this illness such that it just didn't exist anymore. I visualized With those thoughts in mind I realized logically that I should be to the point where I should be healed and recovering, what else was stopping me? What had I done in the past that I had not continued to do? What had others told me to do that I was not?

So I reviewed what I had done and what I was doing and then redoubled my efforts to give this illness one final knockout blow, to actually DO EVERYTHING I knew I should be doing at the same time and for as long as it would take. I had stopped taking Mesalamine (5-ASA) (which helped me, although apparently it was very bad for you) so I restarted it. I had largely stopped taking the whey protein shakes, so I restarted those. Then I added on the Bupropion and Doxepin and then the illness was done. That is I had a breakthrough in my symptoms, but also in my mind this was done, the rest was just further healing.

As for the Bupropion, I did a google search for Bupropion and UTI (urinary tract infection) and it actually is listed as a possible side effect - in its entry on the drugs.com site.
If you can't get access to the immediate release form you can also cut the Extended Release tablets into pieces using a pill cutter or crush into powder and divide that into 3 equal amounts. However at this point, adding on the protein shakes could significantly reduce the amount of time you might have to take the Bupropion as well. You just need to get past a certain threshold of healing and then you will be over the hump!

Guardian7,

1) You are right it is true there are other ways to get high amounts of protein in form that require limited digestion including yogurt or Kefir. In fact meal replacement shakes like Muscle Milk say they are modeled on the complete nutritional profile of milk. The Sheep's yogurt especially sounds like it would be very helpful. As part of my diet I was also eating and drinking yogurt / Kefir at the same time with almost every meal.

I couldn't find any preservatives listed for regular Muscle Milk, however it does have artificial flavors. As a note the "Muscle Milk Naturals" form does not have any artificial flavors, nor does the Absorb Plus meal replacement shakes. Personally I can say that in spite of having what I thought was a pretty sensitive system, I was raised on the all-natural Feingold Diet, I did have any problems as far as I could tell with the artificial flavors in Muscle Milk.

I recommend shakes in addition to or instead of yogurt because the protein is already pre-digested and with a mix of vitamins and minerals already dissolved in there - it just needs to be absorbed with no digestion at all - like a feeding tube except you drink it. I also liked the relative convenience, lower cost and the standardization from the label to know precisely what is in there. However the sheep's milk / sheep's milk yogurt would most likely be an effective substitute in sufficient amounts. Although you would most likely need to eat at a good 16 oz 3 times day or so to get the same amounts of protein.

2) I fully agree Guardian7 that belief was a huge part of this, and that this took an act of faith and courage. This was both to aim my mind at health, but also to support taking the actions necessary for that health. Perhaps the most powerful realization I had both intellectually and emotionally was that I was holding back / sabotaging my own success and making myself a victim. It didn't make any rational sense, I had tried all kinds of things and gone above and beyond what almost any other person had done to fight this illness, until I identified the possible positive payoffs from continuing to be sick and decided I did not want them anymore. I decided I would get what I needed and deserved to have emotionally without using being sick as a way to get it. The turning point was a DECISION that I was and am already healthy and a determination to crush the illness and have gratitude for the future that was still in the process of occurring physically. And the faith to keep re-affirming I was already perfectly healthy while still healing. For me it was not white light and peaceful music but a mater of fact assertion of absolute dominance and power and taking control. Interestingly enough once I did it, there was no struggle or seeming effort, it was just so. Trust me this might be hard to understand until you experience it for yourself, but you're right on the verge of it. And as you find yourself having this realization you will do what you need to do and anything else you have to do will not seem overly difficult at all.

One exercise I did was to literally visualize a picture of an inflamed colon (or my own colonoscopy) and then switch it with a picture of a healthy colon in my mind and then repeat the process instantaneously fast over and over again. It was similar to the "swish pattern" from NLP which I had done many years ago to break my habit of biting my finger nails. I didn't even notice it had worked until weeks later when I noticed my finger nails poking my fingers. The key is to do this in one sitting over and over again - the pictures switch instantaneously and then let it go knowing that this is now working in the back of your mind without thinking about it.

As for struggling with depression, like you Guardian7 I also still do sometimes. Some books with helpful insight into health and managing my state of mind that I have read include Psycho-Cybernetics and The Power of the Subconscious Mind. I'm sure meditation could be helpful and while I am not a religious person myself it seems to me that for anyone who does consider that a part of their life, it would probably be a helpful part of healing too in terms of supporting the faith and courage to leave the illness behind from your life.

A final note: the amount of Bupropion I took was 300 mg a day which is the standard daily amount to take. This would be more powerful as an antidepressant and an anti-inflammatory than 150 mg.

I also think that while believe played a powerful role, that FMT, lots of protein and the anti-inflammatory action of the various drugs were all key too. I think the combination of factors were more powerful together as a whole than the sum of their parts.

success stories:
1. FecalTransplantForUC (Michael Hurst): male, 31 yrs old when started FTs; dx - XXX (date) severe UC for 12 yrs; donor - 28 yrs male friend living together during infusions; FTs - 5 weeks of daily transplants at home in June-July 2011; results and current state of UC - gained remission a week after last FT (when added anti-depressants); still in remission, no medication; last update - Dec 2014.
2. Curl: male, 36 yrs old when started FTs; dx - Feb 2012, mod pancolitis; donor - 36 yrs wife; FTs - 27 days of daily FTs in 2012; results and current state of UC - in remission since April 2012, Asacol 4 x 400mg; June 2014 - after experienced symptoms of relapse, 2 further weeks of FTs, regained remission, still eats a minimal dose of Asacol; last update - Dec 2014.
3. Bloom93: female, 19 yrs old when started FTs; dx - May 2011, pan colitis + c.diff; donor - 12 yrs brother; FTs - 5 days of FTs at home; 90% SCD; results and current state of FTs: lialda 4 tabs a day, in remission; last update - May 2014.
4. FT is the REALDEAL: male, 27 yrs old when started FTs; dx - pancolitis for 2 yrs; donor - 14yrs brother; FTs - 19 days of FTs, started beginning of April 2012; results and current state of UC - symptoms free after 10 days; results and current state of UC - completely cured; last update - June 2013.
5. Lolil: female, 35 yrs old when started FTs; dx - July 2011, severe pancolitis (first flare Dec 2010 while pregnant); donor - husband XXX yrs old; FTs - about 10 daily FTs; antibiotics prior to Fts, Imuran 2 months before, during and shortly after FTs; currently - Lialda, prenatal vit w/DHA, VSL#3 DS w/Kefir; results and current state of UC - In remission; last update - June 2013.
6. Adventureuc: female, 36 yrs old when started FTs; dx – symptoms since March 2012 "came about as a result of being pregnant"; donor - XXX yrs husband; FTs - 7-8 FTs at home in August 2013; Took Uceris March-August 2013; results and current state of UC - positive change was almost immediate, getting better every day since FTs, currently on no meds; last update - Nov 2013.
7. Sas (Stacy): female, XXX yrs old when started FTs; dx - 1996, severe pancolitis, later dx left side uc; donor - XXX yrs old husband; FTs - June 2013 scope Rochester, NY (scope prep.), Immodium right after scope, currently on 2 Lialda a day; results and current state of UC - no symptoms!; last update - May 14.


Not sure:
1. Soystud: male, XXX yrs old when started FTs, dx - Dec 2003, XXX (condition, severity), donor - XXX yrs old son; FTs - XXX (date, frequency); results and current state of UC - XXX (reaction to FTs); last update - XXX.
2 Edbar: boy, 9 yrs old when started FTs; dx - spring 2011, descending and most transverse colon; donor - XXX yrs old, XXX (relation); FTs - started Dec 2011, gained remission twice - 8 and 5 months, Used pred to allow retention at first stage; results and current state of UC - XXX; last update - XXX.
3. Loolover: Male, 24 yrs old when started FTs; dx - June 2011, XXX (diagnosis); donor - 24 yrs old XXX (male/female) friend; FTs - November-December 2014, as consecutive as possible, recently finished 14 fs over 3 weeks; results and current state of UC - during process symptoms were "roller-coaster", "have been improving since last FT but still question its efficacy"; update from Dec 2014 - condition has continued to slowly improve at the same rate as before the FTs, plans to plan to do another round of FTs in Apr 2015 with father as donor, hoping that a family member will have a more positive outcome.

Fail stories:
1. Probiotic: XXX (sex), XXX yrs old when started FTs; dx - XXX (date of dx), inflammation is more severe deep up than rectal area; donor – live in XXX yrs old gf (now wife); FTs - 4 days of FTs at home XXX (date), "didn't hold it long enough"; results and current state of UC - got worse during FTs; last update - XXX.
2. Killcolitis: male, XXX yrs old when started FTs; dx - XXX, XXX (date and condition); donor - XXX yrs old wife; FTs - 3 months of daily FTs; results and current state of UC - Condition got worse. 6 FTs???; last update - XXX.
3. Bananagirl: female, 23 yrs old when started FTs; dx - XXX (date), severe uc; donor –XXX yrs old female relative; FTs - 8FTs, XXX (date, frequency); fever, nausea, diarrhea during transplants; last updated - XXX.
4. Joma: female, 41 yrs old when started FTs; dx - 1998, pancolitis after taking antibiotics; donor – 1yr old son; FTs - daily FTs for about 3 weeks?, good retention; results and current state of UC - (what was the reaction to fts?); last update - XXX.
5. MaxMillan: XXX (sex), XXX yrs old when started FTs; dx - 2010 IBS, proctitis, 2012 crohn(?) (mild ulcers on terminal ileum) fructose and sorbitol malabsorption, non toxigenic, c.diff; Donor - CDD in Sudney; FTs - 6 FTs XXX XXX(date, frequency); results and current state of UC - condition got worse after FTs; last update - XXX.
6. delta30: female, 35 yrs old when started FTs; dx – March 2013 procolitis, later colitis with inflammation in the rectum and right colon; donor – XXX yrs old husband; FTs - 4 month of nearly daily fts, XXX (date), took 1 month antibiotics before FTs, Believes stopped meds too early; results and current state of UC - XXX; last update - May 2014.

In Progress:
1. twiggs: XXX (sex), XXX yrs when started FTs; dx - Crohn's Colitis Feb 2012, Patchy UC to 30cm Nov 2014; donor - XXX (sex, age, relation); FTs - Dec 2014, XXX (number, frequency); results and current state of UC - XXX; last updated - Dec 2014.
2. Kamakaya: a girl; 10 yrs old when started FTs: dx - moderate to severe pancolitis XXX (date), shortly before FTs was also diagnosed with Crohn's Colitis, C Diff in Nov 2014, before her colitis symptoms started she was on antibiotics; donor - XXX years old mother; FTs - first 21/12/14 done at hospital, after 2 days FT at home, gave another 2 days gap to see any reaction, after that did 3 straight FTs and are planing to do another 7 FTs till winter vacation, good retention thus no need for Imodium; results and current state of UC - "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", after a few more FTs still abdominal pain ,bloating, burping and sometimes heart burn, stool is still vey formed, no blood, increased food intake; last update - Dec 2014.
3. Nenuss - male, 20 yrs old when started FTs; dx - severe colitis diagnosed 2011; Donor - 34 yrs old aunt (gave birth to twins 11 months preior to FTs; FTs - started November 2014, initially 5 trasplants everyday to try it out, felt some improvements, skipped a week, did a lavage, and then a transplant every night (doing them at night have helped him hold them in) for 16 days (skipped only 2 days), use rectal syringe 8oz, uses destilled water (no salt), takes Wellbutrin 3 times per day, Protein shakes, Asacol and Immuran. Took Imodium (at the beginning to help with gas cramping and pain due to the initial FTs), retention increased with time; Result and current state of UC - after the 16 days wrote: It's been going Wonderful!!!, so far excellent results. No more blood or diarrhea, no more urgency - 2 or 1 bowel movement per day. Stool is fully formed now. No more pain (stopped after about 10 days after lavage). at the middle of January reported that FTs had been reduced to twice a week and that nephew gained 34 pounds in total! ;Last updated Jan 2015.


If you are on one of these lists please do complete the information as much as you can. Any update on your situation is welcome.

wishing you a complete recovery,

Sharron

Post Edited (sharron19) : 1/19/2015 2:20:23 PM (GMT-7)

You can fill in on your stats that I'm around 38 just as is my wife

Great news Curl. I've learned a lot from your experience and I hope you stay sound and never experience another relapse. I've updated your entry on the list and put 36 for the age of you and your wife when administrating the first transplant. I hope this is right.

If I ever gain a recovery by the use of FTs I plan to maintain it by shooting up poop once a month. That's what I was advised by Prof. Brandt and I think it is also suggested to be the right thing to do from what we read on this board.

Sharron

Post Edited (sharron19) : 12/14/2014 10:11:02 AM (GMT-7)

sorry, i've just realized that this article has been already talked around here :) but maybe someone has got some new info on robogut and synthetic poop ?

I've tidied up the list above and noticed that there is quite a lot of missing information, in particularly for those who didn't have much success with the treatment but also for the successful ones. If you are on the the list, please check the accuracy of the information, let us have the missing data, update on your condition and add anything else that you think might help us learn about FTs.

Also, If you've tried FTs and you are not on the list yet, please let us know about your experience.

Sharron

Post Edited (sharron19) : 12/18/2014 12:46:16 PM (GMT-7)

Thanks twiggs. I wish and pray that you're successful with the transplants.

I started a new list and named it "in progress". You can see it above. You're the first one to enter this list. Could you please let us have some more information. I copied the detail from your signature. Do you actually have Crohn? Has it changed to Colitis.

The information that we are looking for is:

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

I hope you soon move up to the top list of the successful ones.

Sharron

Post Edited (sharron19) : 12/20/2014 12:29:46 AM (GMT-7)

Loolover: Male (sex), 24 yrs old when started FTs; dx - June 2011; donor - 24 yrs old, friend (relation); FTs - November-December as consecutive as possible (date, frequency) recently finished 14 fs over 3 weeks; results and current state of UC - during process symptoms were "roller-coaster", "have been improving since last FT but still question its efficacy"; last update - XXX.

My condition has continued to slowly improve at the same rate as before the FTs. In April I plan to do another round of FTs with my Father this time. The most success seems to come from a healthy equivalent to yourself or family members, I'm hoping that a family member will have a more positive outcome.

LooLover: Thanks for update. I've already added the information to the list. I thought you were doing FT before Nov this year but I might be wrong. I understand you can't credit FTs to the slow improvement you are experiencing for a relatively long time. I really hope you will stick to it and get better when you try it the second time round. GOOD LUCK!

kamakya - Great. I hope it works for your daughter. I've added her to the list of 'in progress'. Could you please let us know the detail as listed above? We can all learn and benefit by sharing this information. With regards to the enema tool, I've tried the one that most people use, I'm not sure what it's called but it's what Michael Hurst used and it's shaped like a pear. It didn't work for me. I didn't manage to squeeze it properly and I had to cut the nozzle quite a bit to allow the flow. I moved to the bucket, which was familiar to me from my trial with Gerson Therapy years ago. I still had problems with clogging and eventually ended up inserting the tube itself without the nozzle. Perhaps next time I will try to liquidize the stuff better. My fingers are crossed for your daughter. GOOD LUCK!

Sharron
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Post Edited (sharron19) : 12/28/2014 10:41:40 PM (GMT-7)