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counting success stories with fts (continued)

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sharron19
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Posted 4/30/2014 11:32 AM (GMT -6)
Continued from https://www.healingwell.com/community/default.aspx?f=38&m=2758195&p=6
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Guardian7
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Posted 4/30/2014 11:53 AM (GMT -6)
I don't think it's fair that you have to start another topic for this. If the Uceris threads and other threads pertaining to pharmaceutical drugs can go on longer, why couldn't the other one have.

*shakes head in disbelief*

Anyhow- I'm looking forward to the updates, Sharon!
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sharron19
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Posted 4/30/2014 11:41 PM (GMT -6)
To be honest Guadian7 I though it was just to do with a standard number of pages. It just shows that I don't want to/can't look at these matters right now. I suppose people can always look at my old thread and get the information from there.

Update: Yesterday my son had a BM at 17:00 when I was still at work. He never kept it for me because he was sure he'd have another one later on in the evening. I arrived home at about 19:00 and he did not! Of course I was disappointed but I can't be upset with him. The all thing can't be easy for him. The good thing, I've now learned two things. First, his gut can't be that bad if he goes to the toilet only once or twice a day, second, he goes to the toilet in the evening which can be a great advantage for me.

Last evening I ate for the first time since Saturday evening but only a parsley root of the soup I'd made. I believe it's very important to have an empty gut before the first infusion. Despite this long fast I don't feel it's completely empty. I might do a chamomile enema shortly before the fecal enema.

Hope I can manage without food for one more day and the first treatment go well.

Sharron
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linc497
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Posted 5/1/2014 3:19 AM (GMT -6)
Sharon.. don't really know how to console you other than to tell our experience. Loved one has this four years no real success always reckoned it was the chemicals in our food caused it so adopted this approach and it works..80 percent drop in UC affects already Virtually gluten free, wheaten free and sugar free diet, no junk food sop food takeaway, scrutinize everything toeat got new probiotic VSL 3 and strong exercise, remarkable because it works. Nothing really worked prior to this so the result is amazing. We firmly believe that UC is a bug which gets n when the digestive system is heavily stressed and working on this we are reversing the process to get rid of the bug, It has to be a bug because when read the expeiences of people with UC it shows this and that is why we did what we have done with loved one.Get out into the sun for vitamin D and get alovera in pill form.
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linc497
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Posted 5/1/2014 3:35 AM (GMT -6)
Sharon,,,to continue...found a UC site from England wherein a medical person was fielding questions from UC people. One person related that dad had stopped smoking but got UC 3 weeks later medical person said yes its because the cigarette has some small form of cyanide in it which keeps UC in check, they put him straightway on nicabates and UC went away...other people wrote in about food and he indicated yes it was a major concern in UC he could describe everything food did good and bad to a UC sufferer..Sharon find a site like people cured of UC to look for answers..we did just to see and got some good ideas but avoid the scams looking for money. All UC people different but found good results with food they eat. Each persons experience is unique but look Sharon somewhere in there you will find something for you never never surrender to it we wont and lately very happy so far
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sharron19
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Posted 5/1/2014 5:52 AM (GMT -6)
Thanks linc495. I've already been on a very very very restricted, no processed no sugar no anything, diet for 14 years! I make my own food from scratch. I've already written above what I have and what I avoid. Unfortunately at the moment even having just boiled vegetables, which wasn't too bad before, causes all these horrible symptoms to come back.

Have you done the fts every day?

Hope the loved one keeps doing well.

Sharron
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sharron19
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Posted 5/1/2014 11:44 PM (GMT -6)
update:
so far so good! I did the first infusion last evening! My son had a BM at 13:00. It was put in the fridge and I could only start preparing it at 16:15. The preparation lasted for about 15 minutes. It wasn't as bad as I expected. Luckily I watched those videos and new what to do. I've no idea how Michael managed it without sieving the stuff. Even the sieved liquid got clogged at the end part of the tube several times. (I am using the bucket set type of enema). I wore a respirator all through the procedure so I didn't smell it at all and I treated it as medicine and bacteria so it wasn't that bad. After the infusion I ate for the first time after a long fast (clear liquid only). I ate: the vegetables, herbs and chicken from the soup which I had made on Sunday and used its broth during the week. I also ate some almond, which I usually can't tolerate. I didn't go to the toilet until 7:30 this morning which means it was in me for 15 hours! I didn't have diarrhoea but of course it's not normal yet either. My gut is far from being at ease but It's not too bad either. I can't at the moment whether the ft had any affect as from my experience my body behaves the way it does after a long fast.

If I do get better I wonder whether the pain from the lower back and the joints will subside. I haven't seen anyone using fts writing about it yet.

I will update you all tomorrow.

Just the remind you the list is still open and you are invited to tell us all about your experience with fts. Please include the detail asked for at the beginning of the previous thread. This might help us all in determining what are the creteria that make it works.

Sharron
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sharron19
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Posted 5/2/2014 9:07 PM (GMT -6)
Update:
The bad news - I couldn't do it yesterday because, as often happens, my son had diarrhoea. I wish the local people that are willing to donate their stools would call and say they don't care about a Dr's supervision. I'll get in touch with the GI and see whether there are any news from Helsinki committee. She was very optimistic but I really doubt it's going to be approved.

The good news - I am feeling better! Although it's too early to tell, I think it does work for me. Yesterday I ate fruit, fresh and boiled vegetables, boiled and fried chicken, some home made Tahini, which had always been least problematic for my gut. I also had quite a lot of almonds which had always caused lots of suffering. In general, eating nuts and seed, which I truly love, causes not only the normal symptoms from the lower part but also very very embarrassing uncontrolled smelly burps. It's the one thing which evey so often caused me to lose my good control over the food intake. I ate them yesterday because I couldn't wait having them and also couldn't wait knowing whether fts are worth doing. It's not that I feel 100% cured but I know for sure there is an improvement. Even my lower back doesn't bother me that much just now! Perhaps one of these days the joints will be back to normal again. I find it difficult going up the stairs due to inflammation in the knees.

I'm also happy to think that, despite all the problems my son has with his digestive system, this trial suggests that he has in fact a good balance of bacteria in his colon, a better one than mine anyway!

Good luck to you all and just ask anything you feel like.

I will update you tomorrow.

Started home fts on 1/5/14. 1 infusion so far.

Sharron

Post Edited (sharron19) : 5/3/2014 4:15:52 AM (GMT-6)

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Guardian7
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Posted 5/3/2014 4:11 AM (GMT -6)
Sharon that is amazing to hear. Keep us posted!

What is your son's diet now? If he's traveled in the past, did he get traveler's diarrhea?
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sharron19
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Posted 5/3/2014 9:57 PM (GMT -6)
update:

My son hasn't been back to himself yet so I couldn't do another infusion. Yesterday (Saturday) was a strange day in terms of the symptoms. I had ample of visits to the toilet but it is was all solid! I've no idea where it all came from. Tons of it. I've done only one transplant so far, it wasn't a great amount that I put in and that happened on Thursday evening. I don't remember the last time seeing a solid stool. Also it didn't have that horrible smell I'm so used to. I didn't see mucus. However, I wasn't feeling great. In the morning I was okay but as the day proceeded I became weak and somehow feverish. The visits to the toilet were so frequent that I didn't manage a simple task such as fixing a meal (my nephew was staying over). I suffered from discomfort but definitely not the type I had ever experienced before. First I had pain coming from the appendix area. Then the pressure was more from an upper part of the gut. Perhaps from the stomach area. The ft definitely had an effect. This morning the old familiar symptoms are back again. No solid stool.

Despite the uncertainty I feel at some moments I'm not going to give up on fts. From this forum I gathered some people get worse before they get better. This week I'm working tomorrow and on Wednesday so I will not risk it and wait with the next infusion for when I get back from work on Wednesday. (as usual, I started my clear liquid fast last evening) Hopefully my son will have a nice stool ready and waiting for me in the fridge on Wednesday evening.

Guardian7: thanks for your encouragement. My son doesn't have traveler's diarrhoea. I think I've already written quite a bit about the history of his digestive problems. I know I should you a better donor but unfortunately that's all I have at the moment. If I don't get the permission from the health board and I don't get better using his stool I will work hard on getting a sifferent donor who doesn't ask for a doctor's supervision. I already have two of them by they don't live nearby.

Started home fts on 1/5/14. 1 infusion so far.

Sharron

Post Edited (sharron19) : 5/18/2014 3:05:44 PM (GMT-6)

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Guardian7
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Posted 5/3/2014 10:49 PM (GMT -6)
Well formed stools is a good sign, but I'm not fond of the weakness you are exhibiting.

Do you think the weakness is the result of the lack of calories you are getting? I know I get very lightheaded when I don't get enough food, and let me tell you I've tried all sorts of crazy starvation diets so I know that fatigue-ish feeling very well.

You mentioned eating smaller amounts of food. The colon needs carbohydrates as a fuel source to function more effectively and to augment the mucosal lining (one of the reasons the SCD often fails is because people go too low-carb and even ketogenic). Have you considered adding in more safe starches like rice, potatoes, plantains, taro, cassava, etc? You should eat and try to stay hydrated! Coconut water works wonderfully when I run into hydration issues.

The way I see it your body is showing that sign for a reason. Maybe it's telling you to do something about it.

Best.
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sharron19
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Posted 5/4/2014 9:44 PM (GMT -6)
Update: No much to write. about to leave to work. Have my clear concentrated chicken soup packed in a flask. Hardly slept at night and that happens quite often recently. Hope I will be able to do the next ft on Wednesday evening and not wait until Thursday like last week. Otherwise, I'll have to carry on the fast for a day longer and that might be more difficult this time. I am losing weight.

Guardian7: thanks for you kind concern. You might be right, the weakness could be the result of the lack of calories. I'm not sure about the carbohydrates. People have written completely opposite opinions with regards to its consumption. I used to eat a lot of brown rice and potatoes and it was okay with me. However, recently I've become cautious about feeding the bad bacteria with sugar. Anyway I think I will start having it again as soon as the fts start kicking in. I've never tried the coconut water. Where do I get it. I'm very cautious about introducing anything new just now.

Wishing you a full recovery.

Sharron

266

Post Edited (sharron19) : 5/18/2014 3:08:15 PM (GMT-6)

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Guardian7
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Posted 5/4/2014 11:21 PM (GMT -6)
Oh the weight thing is concerning, Sharon. :(

about the carbohydrates -

Please don't fear these and go too low carb. Paul Jaminet, PhD and Shou-Ching Jaminet PhD (cancer researchers) basically questioned the GAPS/SCD diet paradigm (low carb) and said they starve out the necessary flora and lead to poor musocal lubrication of the joints and colon (dry eyes is a common symptom of low-carb diets). The pancreas also needs to pump insulin to properly absorb amino acids in the blood stream. Because low carbers don't do this enough, they run into sleep issues, and this is mainly due to the fact that tryptophan needs carbs to be isolated and absorbed. Tryptophan is the vital amino acid necessary for sleep, as it is a precursor to 5HTP and melatonin. One will not produce enough by going on starvation diets.

Yes, it's true that carbohydrates feed the bad critters, but the converse is also true in that they will feed the good bugs. "safe starches" and "resistant starches" is a new trend in the paleo community, but one that has significant scientific and clinical backing. I encourage you to look into non-gluten grains like rice, properly soaked beans, potatoes, etc for your calories.

Elaine Gotschall's work on the SCD is heavily antiquated, but if she were alive today, there's no doubt she would latch on to the current research and data on starches and change the SCD diet around. She was, after all, a scientist herself.

Hope this helps you on your path to healing.

Post Edited (Guardian7) : 5/4/2014 11:38:35 PM (GMT-6)

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sharron19
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Posted 5/5/2014 9:27 PM (GMT -6)
Update:
I'm off work tomorrow so yesterday evening I allowed myself to eat . I had the boiled vegetables, herb and chicken from my soup, boiled beetroots, a small amount of fresh salad and a home made tahini sauce (tahini, lemon, parsley, garlic and water). I'm back to square one with the usual horrible symptoms. Just to remind you, all these ingredients had the lease effect on my gut until the condition deteriorated in 2012. My son was still not feeling great and didn't go to school. He had one BM and it was diarrhoea again. I really hope he produces a nice solid stool on Wednesday evening and on each consequent day at least until the following Saturday. That might allow me some understanding toward the efficiency of the fts.

Thanks a lot Guardian7 for all your informative advice and support. Perhaps that explains why recently I couldn't fall asleep easily. It was never an issue before unless it was due to the obvious symptoms. Now I find it difficult to fall asleep even after a long clear liquid fast. However' perhaps it is the low consumption of calories itself that is causing the sleep problem. In any way, I plan on not having anything to eat until the next ft and then very little until the fts kick in. That was the reason I gave myself when decided eat something last evening. I know it is imprtant to eat during fts but after my initial experience I can't see how I will be able to administrate it unless the gut is clear.

I hope you are all getting better.

Sharron

325

Post Edited (sharron19) : 6/5/2014 4:06:56 PM (GMT-6)

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sharron19
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Posted 5/6/2014 9:26 PM (GMT -6)
No much news. I'm still on clear liquid. Yesterday I cooked a lot of spinach leaves had the water from it. I've kept the leaves themselves for after I have the next ft. I hope it's going to be soon. I'm not suffering at the moment but this is the usual during the fasts. It's hard to believe the one ft has anything to do with it but I can't tell for sure just now. During the night I had some of this pain again coming from appendix area. So much I hope to be able to do it every single day soon.

Best wishes to all of you there.

372
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Guardian7
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Posted 5/7/2014 4:46 AM (GMT -6)
Thanks for the update Sharon.

That your son has diarrhea and that you are waiting because of it is probably a good idea. Could be a gut bug or something going around. Your son also is around tons of other people @ school, so his bacterial diversity must be... interesting to say at the least.
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sharron19
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Posted 5/7/2014 11:27 PM (GMT -6)
Again nothing much to write. My son is just off to school after spending 5 days at home but still not feeling 100%. He didn't have a BM all day yesterday so late in the evening I couldn't wait any longer for the next infusion and started eating solid food again. The usual, boiled chicken, veg, fruit and herbs from the soup and boiled beetroots. I also ate quite a lot of almonds. This has caused problems since the onset of the UC (2000). Yesterday at work I couldn't help the temptation and had some sweeties that someone left on my desk. I know it's against everything that has been written here and elsewhere, but sugar and fat have never caused me bother throughout the life disease. I just don't usually have it because I prefer good healthy food.

So far I don't feel too bad. I slept well for about 6 hours and I feel I can leave the house without having an accident again. It is probably the effect of the long fast but just maybe this one ft from the problematic digestive system of my son made a slight different to the bacteria. I can't tell yet. I hope to be able to do an ft tonight. Lt's see.

Thanks Guardian. I appreciate your support.
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Post Edited (sharron19) : 5/18/2014 3:12:46 PM (GMT-6)

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sharron19
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Posted 5/8/2014 4:43 AM (GMT -6)
I can't believe it. No horrible smelly burps (one of my reactions to seeds and nuts from uc onset). Could it be due to this one ft I administrated a week ago??? My son came back from school not feeling well. He is weak but doesn't have diarrhoea any more. In fact he hasn't been to the toilet since the day before yesterday! At about 12 he called me saying he needs the toilet but can keep it in for a few hours. Great, seems like I'm going to perform the next infusion this evening! So far I've been eating the chicken soup, walnuts and almond this morning.
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Guardian7
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Posted 5/8/2014 5:41 AM (GMT -6)
The no burp thing is interesting! Could be due to colonization of bacteria that were previously absent. From my understanding, reflux symptoms are due to an underproduction (not overproduction) of stomach acid and the critters in our gut produce the acid necessary to breakdown certain compounds. This is in part the reason that acid reflux medications are counter-intuitive down the road, as the scientific literature links them PPIs to osteoperosis, c. diff and various complications - we know that these complications have something to do with the harmful bacterial colonies thriving in low acidic environments and not being able to kill off pathogens effectively.
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Bloom93
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Posted 5/8/2014 9:10 AM (GMT -6)
Sharron...So happy to hear about your improvement and praying this to continue...

 You mentioned your son not feeling well, If thts the case, I  would recomend to slow down  FT infusion,until he gets better. I really dont want your positive climb going down....

Best wishes and prayers....

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sharron19
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Posted 5/8/2014 11:46 PM (GMT -6)
I rejoiced too early yesterday. Shortly after posting the reply the symptom were creeping back (including the these disgusting burps), Though, it wasn't a full blown. I administrated the second infusion at about 17:30 and somehow managed to keep it in until this morning. After the infusion and during the night I lied down with a cushion under my bottom to allow the bacteria travel deep into the gut. Since I'd had problems with the mixture clogging the nozzle and valve of the enema (I use the bucket type) I decided to try to be a bit creative...I took off the nozzle and the valve and inserted the bare tube directly into the anus. It did work. Then I though why not just inserting it deeper. I pushed it about 20cm into the colon. Since the mixture didn't flow in easily I kept squeezing the tube next to my body. MDY FT via colonoscopy! Please don't try it at home! It is risky.

Guardian-Thanks for the information. Are you saying that in UC there is normally overproduction of stomach acid and I actually have the opposite? I must say the burps were unpleasant yesterday but nothing compare to what it was like a few weeks ago when I had a much smaller amount of nuts. I do beieve the first infusion had some effect. I just hope some of the bacteria from it have colonized despite the long wait for the second infusion.

Bloom - Thanks for being happy for me and your concern. I know I should be more careful but once I decided to no longer wait on the official approval I became so anxious to go ahead with fts at home. I did feel down when symptoms started coming back but I'm not likely to lose my hopes on this therapy at this stage.

2 fts:1/5/14; 9/5/14

Wishing you all a full recovery

493

Post Edited (sharron19) : 5/9/2014 12:59:54 AM (GMT-6)

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Guardian7
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Posted 5/9/2014 10:20 AM (GMT -6)
Thanks for the update, Sharon.

A vast majority of acid reflux cases (including even non-UC pathology) are due to an underproduction of stomach acid. I learned this the hard way because I was on reflux pills for a darn long time and it just made my symptoms worse after each subsequent withdrawal. Then I found studies linking PPIs to a plethora of health issues and had to get the hell off.

This is in part due to the absence of lactic acid bacteria or due to the absence of conditions required to necessitate the fermentation of lactic acid bacteria. These bacteria include both the lactobacilli and bifidobacterium genus. Many of these lactic acid bacteria thrive in acidic environments and thus need to be resupplied every now and then. Apple cider vinegar, condiments like mustard, and even wine may seem counter-intuitive at first for fixing reflux, but will give the bacteria the environment to thrive and ferment the foods we are eating.

To me, fermented foods help solve this because they have billions of the same lactic acid bacteria found in our digestive tract, except everything is predigested for us (thanks to the lactobacilli in these foods). This is why some can tolerate fermented cabbage (sauerkraut), but not cabbage by itself.

I can't explain it any better than Chris Kresser did in the article here. Scientific studies and data are all provided for anyone that wants to verify.

Post Edited (Guardian7) : 5/9/2014 10:25:26 AM (GMT-6)

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sharron19
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Posted 5/10/2014 12:15 AM (GMT -6)
I didn't feel like writing this morning. the situation is getting worse. However, I vowed to daily report until I either lose hope on fts or am cured by it. Neither has happened yet.

I administrated the 3rd infusion yesterday at about 18:30. My gut was already in a bad state before the infusion. My stomach was bloated and rumbling all day . In addition, yesterday's donation was softer than before, but I decided to use it anyway. I have to do with what I have. I've managed to keep the mixture in for a while but the symptoms just got worse. (diarrhoea, fatigue, lower back pain, joints pain, etc).

I know that I shouldn't have had these almonds. It was very silly of me. Perhaps if I hadn't I would have been in a different stage of this therapy. Something I couldn't help and I'm not sure why. Perhaps there is a subconscious resistance to let go of the illness. Over the last 14 years I have learned what food makes my condition worse. It is similar but also very different from what other people described on this forum. If interested you can read the list I've prepared on one of my initial posts.

I'll try to have another ft this evening. Hopefully my son will have a more solid stool to offer. I've not decided what to do next week during these days when I usually fast in order to keep my job going. Perhaps I should stop fts tonight until Wednesday when I'm back from work for the week? On the other hand maybe ft without having food will allow me to have more control over BM? I think someone said that in order for it to work one needs to eat. What happens if one can't? I suppose it's a matter of trial an error. Dr Brandt advised me to do the fts every day for the first 2 weeks. He said that by then I would know whether it works.

My brother, who lives in Finland, has an appointment tomorrow to see Dr Eero Mattila in Helsinki. He's on the list of doctors who might perform ft colonoscopically on the Power of Poop website. If he agrees to it and I don't get good results at home, I might fly there and use my brother's stools. My brother reports he has a strong digestive system.

Thanks Guardian. I''ve started reading the articles. In fact, the last test showed that I also have esophagitis and gatric hiatal hernia sliding. They said the former is caused by that latter. But I don't understand why this specific reaction (very smelly uncontrolled burps) is not to carbohydrates but only to nuts and seeds.

Wishing you all a full recovery.

3 fts:1/5/14; 9/5/14; 10/5/14

565
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sharron19
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Posted 5/10/2014 2:20 PM (GMT -6)
Since my son has had diarrhoea again I've decided to do the next transplant, if he is better, on Wednesday evening. Meanwhile, I'm copying the list from the previous thread and hoping to get more information from you.

success stories:
1. FecalTransplantForUC (Michael): XXX yrs male; severe UC for 12; donor - 28 male friend living together during infusions; 5 weeks of daily transplants at home in June-July 2011; gained remission a week after last FT (when added anti-depressants); still in remission, no medication (as of Sep 2013).
2. Curl: 36 yrs make; dx - ; donor 36 yrs wife; 27 days of daily FTs.; in remission since April 2012, no medication. (as for Apr 2012).
3. Bloom93: 19 yrs female; dx - May 2011 pan colitis + c.diff. ; donor - 12 yrs brother; 5 days of FTs at home; back on medication and 90% SCD; in remission. (as for June 2013).
4. FT is the REALDEAL; male 27 yrs; dx - pancolitis for 2 yrs; donor 14yrs brother; 19 days of FTs, started beginning of April 2012, symptoms free after 10 days; completely cured. (as for June 2013)
5. Lolil: 35 yrs female; dx - July 2011 severe pancolitis (first flare Dec 2010 while pregnant); donor - husband; about 10 daily FTs; antibiotics prior to Fts, Imuran 2 months before, during and shortly after FTs; currently: Lialda, pre natal vit w/DHA, VSL#3 DS w/Kefir; results and current state of UC: in remission. (as to June 2013)
6. Adventureuc: 36 yrs female; 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. (as for Nov 2013)
7. delta30: 35 yrs XXX; dx – March 2013 procolitis, later colitis with inflammation in the rectum and right colon; donor – XXX; so far has done 14 infusion, took 1 month antibiotics before FTs. results and current state of UC - doing well, no meds. (as for Nov 2013)



Not sure:
1. Soystud: male, XXX yrs when started FTs; dx - Dec 2003, XXX (dx); donor - XXX yrs son; 5 FTs; results and current state of UC - XXX.
2 Edbar: 9 yrs boy; diagnosed spring 2011 descending and most transverse colon; donor - XXX yrs XXX; FTs - started Dec 2011; results and current state of UC - gained remission twice - 8 and 5 months, XXX (current situation); Used pred to allow retention at first stage.
3. Loolover: XXX yrs XXX; dx - XXX (date, condition); donor - XXX yrs XXX; FTs - recently finished 14 FTs over 3 weeks; ressults and current state of UC - during process symptoms were "roller-coaster", "have been improving since last FT but still question its efficacy".

Fail stories:
1. Probiotic: inflammation is more severe deep up than rectal area; donor – live in gf (now wife); 4 days of FTs at home, "didn't hold it long enough"; got worse during FTs.
2. Killcolitis: XXX yrs; dx - XXX; donor - XXX yrs wife, 3 months of daily FTs, date of FTs XXX; Condition got worse. 6 FTs???
3. Bananagirl: 23 yrs female; dx severe uc, date of dx XXX; donor – XXX yrs female relative; 8FTs, date of FTs XXX; fever, nausea, diarrhea during transplants.
4. Joma: 41 yrs female; dx 1998 pancolitis after taking antibiotics; donor – 1 yr son; daily FTs for about 3 weeks?, date of FTs XXX; good retention. (what was the reaction to fts?).
5. MaxMillan: XXX yrs XXX; dx -2010 IBS, proctitis, 2012 crohn(?) fructose and malabsorption, non toxigenic, c.diff; 6 FTs at the CDD in Sydney, date of FTs XXX; condition got worse after FTs.

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

wishing you all a complete recovery,

Sharron

Post Edited (sharron19) : 12/20/2014 3:17:40 AM (GMT-7)

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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17854
Posted 5/10/2014 2:27 PM (GMT -6)
Just so everyone knows. it has nothing to do with the subject matter whether a post gets closed. It's mostly about the age and the number of posts. People don't intentionally allow a post about Uceris or Remicade to go longer because we are in some kind of cahoots with pharmaceutical companies. We certainly are not, we have no affiliation, nor do we get paid by them or anyone to moderate these forums. We are volunteers and we do our best to lock old posts or long posts that become difficult to navigate. It's upsetting that people would insinuate anything otherwise.

I spoke to my GI the other day about FT and she said that over time, working with many people who have administered it to people with UC, and keeping records, it's not an effective treatment. I hate to hear her say that, and from reading here, I've seen people mention having great results so I don't know what to make of it but knowing my GI and her level of interest in IBD and her passion to find treatments that work for people, I trust that she is telling me the most accurate information available. Hopefully someday there is a way to administer it and make it more effective for us.
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