counting success stories with fts (continued)

Hey Sharron good on you for keeping at it! I'm still here from time to time, still symptom free, almost 4 years now since I was diagnosed.

I don't like SCD because it doesn't actually follow its own logic. It says you should avoid eating sugars but think its ok to eat things like dried apricots which actually contain both sucrose and fructose. Read about the FODMap concepts and try to understand what sugar does to you and you'll be better off imo.

The 11th week FTs with second donor has just come to its end. Again 3 infusions: Monday, Thursday and Friday. I have no much to add. Although I now have much less symptoms related to UC I'm still far from being cured. On one hand, I can control my bowel, I'm not in pain and I have much more energy lately, but on the other hand my BMs are still far from being normal, I still suffer from severe abdominal bloating and I am still on my very restricted diet. I intend to perform 3 more infusions next week and report again next weekend.

Best wishes,

Sharron

Post Edited (sharron19) : 10/18/2015 2:07:41 AM (GMT-6)

Mid-week update: I'm doing great!

I've had lots of fresh vegetables during the past few days and, although my colon is not completely healed yet, it's caused very little problems. What a difference! Yesterday evening I had a large bowl of salad and felt confident to go to work this morning. Today I had mainly fresh carrots!

Since I heard about this therapy I became a great enthusiastic of it. However, there were always some doubts, which increased during those many weeks of infusions (with first and second donor), first when I developed adverse reactions to them and then when I felt no improvement in the severity of symptoms. Now, after so many infusions (I will count them at the end) I am convinced that this method has the power to heal.

I think now I will try to carry on administrating 3 infusions per week for a bit longer and hopefully I will be able to cut it down to twice or even once a week soon. There are still a bit of discomfort and some bloating but nothing compare to what I'm used to. In addition, this evening I felt nausea. This has never been a symptom of the disease and I'm not sure why it happens but it could be a reaction of my new transplanted bacteria to the raw food I eat.

Best wishes,

Sharron

Post Edited (sharron19) : 10/30/2015 9:37:26 PM (GMT-6)

I am so happy for you!!!! Glad that you didn't give up trying....appreciate your patience and perseverance!!!!

Best wishes...

Hi Sharron,
I haven't been on the forum for a long time but I have been following your posts. So inspiring. If there is one piece of advise I have is don't start reducing the number of transplants too soon. If you can, continue on as is for a while more. I think it takes a very long time to repopulate the gut bacteria. Some infections may be deep in the colon walls and are very difficult to get at.
Good luck and keep us informed of your progress.

I should probably update my signature - I'm still free of any symptoms the only thing I'm not eating is gluten and just trying to eat dairy & sugar rich food in smaller amounts

Awesome Sharron, well done! Big hug from New Zealand!

Hi everybody. I figured this thread is a good place to start the record of my journey. My intention is to have a beautiful, well-vascularized gut lining within the next 2 years and keep it that way for the rest of my life. Going to the meta level, note that while I am a mathematician and embrace the scientific method in my life and work, I also believe in the power of intention, intuition, and manifesting reality with the power of internal life force and spirit. Relevant to this report, I believe that mental state and belief are part of the mixture contributing to success and failure.

I am a private person. I don't generally use social media. Support for me is generally a very small circle of my closest friends and family. However, I am reporting here because I want others like me to do the same thing. Ulcerative Colitis is a multi-factorial lifestyle disease involving systems of health we are only just starting to touch the surface of in terms of scientific comprehension: our gut-brain axis and our gut biome. Therefore the best I believe that science can offer in this case is people with ulcerative colitis who make a strong effort to document their attempts at achieving health, being as careful as possible to describe what they do, and including follow-up of both success and failure - as Sharron has done here (thanks Sharron!).

My short term plan is to follow the Briggs protocol for the next 2-3 months. I also have the intention to update here with success and failure. On the basis of what I've read here and elsewhere, I expect that the chance of success following a variant of the Briggs Protocol is somewhere between 20 and 80%. Even the low end of that range would be good enough for the investment. I also believe that if enough people do what Sharron has just done and what I intend to do - that is, document initial intent and follow up through the good bad & ugly - that the community as a whole can move towards a more accurate assessment of success rates for various strategies. I think the statement "if you do this, you can expect a 60% chance of a beautiful and well-vascularized gut lining" is fundamentally different from "if you do this, you can expect a 0.5% chance of a beautiful and well-vascularized gut lining." In particular, if I felt that the FMTs had only a 0.5% chance of success I wouldn't be doing it.

I've done a first session of 7 FMTs administered through the Taymount clinic. They were spread out: three in the first week in August 2015, one a week later, one two weeks after that, one another two weeks after that, and one 3 weeks later. I started from a position of relative strength: I was not in a flare when I started, and my flares in the past have mostly been a combination of lethargy combined with some minimal blood and mucus, and urgency (so I'd say I've had pretty mild ulcerative colitis for 20 years although from inspection the area that is not well vascularized has slowly progressed from 10 cm up to the first bend). My initial response was subtle and positive: I felt some interesting physiological state shift that I'd describe as "less concerned that the world is about to attack me." I had a strong inclination to do the sessions spread out over time. Partly in order to integrate FMT treatments into my demanding work schedule. Also I had a different reaction to each FMT and it felt right to let my body adjust each time.

However. Things went south about 6 weeks ago. I can now say from experience that I have had mild ulcerative colitis most of my life. I believe (although I was not taking good enough notes at the time) that the change for the worse began shortly after the second to last FMT, thus possibly implicating that particular sample. (Note that each Taymount sample comes from a different donor.) Other roughly coincident factors that I can recall were a massive rachet up in stress at my job followed by release of that stress, and a trip to Portugal where I may have drunk some funny water.

In any case, I have now experienced what it is like to crap a quarter of a cup of blood and mucus 6 times a day with no solid bowel movements but instead a miasma of liquid and terrible gas. At some point I did a liquid fast for 2 days and curled up in a ball because it was the only thing that seemed right. For a couple weeks it really felt like my bowels had forgotten how to function. I lost weight. I slept. The world became gray.

I had to let my team know that I was going to be less than 100% at work for some period of time. Side note. This has happened before - when I found out 4 years ago that I had chronic Lyme. With the help of Dr. Schweig (my doctor, CA Center for Functional Medicine) I made major strides in the first year and continued slow improvement after that. In a month I'll be getting another round of blood work and Dr. Schweig and I are hopeful that I'll get a clean bill of health re Lyme and cofactors at that point. In fact, this is why I've turned my focus to my UC: it feels like I can now do this, whereas Dr. Schweig advised and I agreed that in the past tackling both Lyme and UC at once would have been overwhelming given that my UC was basically livable.

In any case, I will report more in a couple days to bring my story up to the present moment. The thumbnail is that I've been doing a partial version of Briggs' recommendations for the Phase 1 inflammation reduction as I wait for my generic, probably slow-release Wellbutrin. Given how strongly Briggs recommends Wellbutrin, I can't say I am fully following the Briggs protocol unless I add that as well. Taking the 3 day rolling average of how I feel, I'd say that since I started the anti-inflammatory enemas combined with my standard mesalamine enemas I've had steady improvement. More later, and thanks for reading. Please let me know if I should be posting somewhere else instead.

The 19th week of this therapy has just ended. During the 16th, 17th and 18th weeks I'd continued to have two infusions each week, on Mondays and Fridays. However, during the 19th week I cut it down to only one infusion, which was administrated on Friday morning.

Overall, I'm very happy with the results. Now I can eat fresh salad and fruit every day! I have so much more energy now. Yesterday I took a very long walk and could feel the difference. However, there is certain food which still aggravates my gut. I think I can still have some of it but in small quantities. It would be interesting to see how my body react to the decrease in the frequency of FTs.

Jessica, please don't give up this form too quickly. Sometimes you might not get any replies to your posts but from my experience people do read them and eventually make a good use of the knowledge supplied and also offer advice and support. So, stay with us, this form needs people like yourself to enrich the understanding of the causes and the ways of healing of ulcerative colitis.

Best wishes,

Sharron

Post Edited (sharron19) : 12/6/2015 11:32:55 PM (GMT-7)

As planned I'v not had fecal infusion this passed week and there is no much to report. We are at the stage of shifting them from Fridays to Mondays. I'm doing great compare to what I was like when I first embarked on this journey of Fecal Transplants, and in fact starting to feel concerned about the weight I've put on lately! I take no medication, I can now eat fresh fruit and vegetables, and usually I have one, nearly normal, BM a day. I haven't tried to eat dairy yet but have no desire for it either. On the whole the anxiety about the food I eat has been reduced. I don't have bread or pasta but no doubt there is some gluten in the meals I have at work. I'm not cured and when I eat certain ingredients, such as nuts, the stool becomes loose. However, nothing compare to the misery it used to provoke in the past.

I also measure the improvement by looking at two other symptoms, which occurred a few year after the onset of Ulcerative Colitis. First, weak knees, which makes it difficult to walk up hills and up stairs, and secondly, discomfort from the lower back. Interestingly, the first positive observed effect of the infusions was with my lower back, but now I think there is actually no change. Also this therapy has no effect on the condition of my knees. I think perhaps these two either take longer to heal or they are not symptoms of the disease but actually happened to mature during the years I was ill. Fifteen years is a long time for the body to grow older and express the genetic dispositions I've inherited of my parents, regardless UC, which was induced by a course of atibiotics.

I'm now in a bit of a conflict with regards to the continuation of this therapy. On one hand I want to reduce the frequency of the infusions to fortnightly and eventually move on to monthly maintenance infusions and keep it that way for as long as I can. This option is provoked by the thought that I've already achieved everything I personally can gain from the infusions, from the need to feel less dependent on them, and also from the thought that stopping it completely would increase the chance of the returning of the symptoms. Something that a few of you have experienced and reported on. On the other hand, there is also a thought that if I carry on with the weekly infusions, eventually the colon will heal completely and there'll be no symptoms whatsoever, just like it used to be prior to the onset of UC. Also perhaps by doing more of it I will secure what have already been gained. I'll be very happy to hear from you on this matter.

For now, I will try to carry on with the weekly infusions and continue to update at the weekends.

Meanwhile, please feel free to reports your thoughts about Fecal Transplants and your experiences of it.

Best wishes,

Sharron

Post Edited (sharron19) : 12/19/2015 9:44:39 AM (GMT-7)

Hi Curl, I feel much better now but FMT has not been a 100% success yet. If it were I would have stopped the infusions or cut them down to once a month for maintenance purpose. The real change occurred at about the 13th week of infusions with my second donor. You can look up the exact details of my journey by reading my previous posts on this thread and the first one. In order to make it easier I plan to recap the frequencies by weeks shortly.

I think my case is a very stubborn one and therefore needs a very long and intensive treatment. How many infusions did you have all together and how far apart?

Post Edited (sharron19) : 12/26/2015 1:31:38 AM (GMT-7)

Another two weeks have passed since last update. In the 21st week of FTs (with second donor) I had one transplant, on a Monday, and I skipped the infusion during the 22nd week - the one that has just passed. I would like to keep the weekly infusion but someone I seem to drop it to once a fortnight. I'm still doing very well, but can't call it a cure yet. I am without medication and most of the time feel a near normal function of the colon. In fact, the colon seems to react less severely to the different foods I eat and to get better much quicker after I eat something which my system can't tolerate yet.

Hi Rebel, I have UC. I do the FMT enemas. I personally believe it's a matter of perseverance. Perhaps some donor are better than others. However, I think if the donor does not have a problem with the digestive system, has passed all the medical tests required for FTs, and does not have any chronic illness, his/her donations should be fine. I put much more weight on the condition of the recipients. Some people can heal quicker than others. I don't think this always correlate with the severity of the condition. Which means that some people, with less severe cases, might actually need more infusions than people with worse situation. That's why we see such "contradiction" in the self-reports. I would advise anyone who is about to start the infusions to first learn the technical issue, such as the type of medical tests needed, and how to apply the infusions, and then to embark on a personal journey according to how one's body reacts as one goes along with this therapy.

I also experienced very nasty reactions to the FTs at the initial stage of the infusions. I'm so glad it didn't put me off the whole thing.

I hope that by sending my regular updates people can be encouraged not to give-up too quickly when feeling worse as a result of the infusions or when not experiencing a quick recovery. The great shift in my condition occurred only during the 13th week with the second donor! Up until that point I was struggling to convince myself that it was actually doing anything at all.

Best wishes,


Sharron

Post Edited (sharron19) : 1/9/2016 6:21:29 AM (GMT-7)