counting success stories with fts (continued)

I am also thanking you for allowing me to follow your progress Sharon. I am hoping you have some long term benefits i.e longer term remission.

Sharron, I wanted to share with you the following message but couldn't find a pvt messaging system here?

I had a flare whilst on SCD recently due to extreme stress but short term cigarette smoking has pulled it up very quickly because shamefully I am an ex-smoker. I don't advocate smoking at all as I lost my father to lung cancer.

Moving in with my donor for two months and leaving SDC behind me at this stage. Following mostly Hurst's instructions, maybe minus the electric mixer. I will attempt it with a coffee plunger first and see how that goes. I haven't read anywhere anyone utilising one.

FMT begins in February(fingers & toes crossed I don't flare in the meantime). I am not expecting any miracles but I have a window of opportunity with a healthy tested donor that is too good to miss. If I don't try FMT, it will always be in the back of my mind otherwise

I am being followed closely as is my donor by a medical practitioner and I will pull out of FMT the moment any issues arise in relation to myself or donor.

I will start a new thread on my progress once I begin and if you want to add me to your current list of ppl trialling FMT, please do. If anyone has questions for me would you please hold off until next month as this post is mainly for Sharon's attention.

Sharron, I am so glad you are doing well with your treatment with the second donor.

Thank you for the advice about the coffee plunger and washing/soaking the equipment with salt water. I decided to use clip seal bags for mixing, one smaller inside one larger to safeguard any accidents when mixing the stool and forgo the plunger. I have already purchased 15 litres of saline that should see me through. I will be using a large enema bulb.

I have been taking 300mg Bupropion(slow release is only available here) daily for the past week and will continue taking them throughout the transplant. I am trying to follow what Michael Hurst did as per his book, minus using the electric blender.

I move in with my donor this Saturday for 2 months. We will be doing the daily donation and transplanting of fresh stool. I will be taking with me a large bean bag to assist with the flow of the transplant with different body positions. I don't want to put my feet up on someone else's walls or furniture.

I seem to have the last flare mostly under control. I do have a very "small" ache on my left side every now and then but seeing I have been gradually introducing some starches and fibre into my gut after my time with SCD that may have something to do with it. I have so far no bleeding, mucus and minimal urgency. My stools are looking a bit firmer and not as light colour as when I was on SCD.

I will try for weekly updates in this thread as per your suggestion rather than blogging elsewhere. It makes sense to keep fmt trials together.

Just a couple of days to go. Let the fun begin...........

ps I forgot to mention that I will be aligning my food intake similar to my donor

UCmas said...
Sharron19- Thank you so much for taking your time to share your experience with us. AS you can see thousands of people benefit from your posts.

I did daily FMT at home for two and a half months and then 2 months later bloody diarrhea returned. Again I did daily FMT for one and a half month. Donor was my 10yrs old son. Unfortunately FMT did not cure or gave me complete remission. However I can say for sure 100% FMT did get rid of my C-diff. Also during and for few months after FMT my back pain and brain fog was gone. I always thought brain fog related to my sleep apnea. I felt great and I thought they are gone for good but unfortunately they are back.

Anyways I already moved on with Biologic and if it fails I will try FMT one more time then time to take out anaconda.

UCmas, so glad the fmt rid you of your c-diff but I can't help but feel disappointed for you that you couldn't achieve a longer remission. Thank you for posting to let us know your outcome.

I have several questions if you don't mind me asking as I am starting my fmt soon and I could use some help. This may be help to others also looking at fmt.

1. What did your diet consist of before, during and after fmt?

2. Were you on any medications to treat your UC or any other medications like Wellbutrin(Bupropion) during fmt?

3. Were you flaring at the time of treatment?

4. Did you use the electric blender method or another way to mix the stool?

5. Were you using saline, distilled or tap water to mix with the stool?

6. How long were you able to hold onto the fmt enemas?

7. Did you follow any of Michael Hurst's papers/book/video's?

9. Has your son ever taken antibiotics during his lifetime? If so and you decided later on to give fmt another try would you consider using a different donor?

Sorry for so many questions UCmas.

Thank you so much UCmas. I appreciate you getting back to me so quickly and sorry for the edits whilst your were replying.

The doctor said the same thing as you about best to try fmt whilst the UC is localised.

You have help me greatly :)

OhCrap! - Great news! Such good results in such a short time. Do you use your daughter as your donor? I would love to add you to the list of 'In Progress' so please let us know your details as listed in one of my above posts. If you can't find is let me know and I'll post it again. Please keep updating us. The more detail you submit the better for our community.

UCmas - I hope you don't give-up too soon. Unfortunately, some cases are more stubborn than others and not everyone gets such rapid and great results from this therapy. I'm doing really well compare to what I'd suffered up until not that long ago. However, there is no doubt that I still have UC and must restrict my diet. I still hope that by continuing the FTs it will eventually go away completely. Also, I know about the embarrassment involved in the search for the right donor. It took me about two years to find one and some very embarrassing moments! However, I now think it was worth it. So please don't be too quick to "take out the anaconda". If you wish I would like to add your case to the list of 'fail stories', with the intention of shifting it to the successful ones in not too long. If you agree to that please send the data as listed above and keep us updated.

My update: another 3 weeks have passed (25-28) during the first one I skipped the weekly treatment. I've been extremely bloated during the past few days which tells me that I must pay more attention to my food intake. Hopefully I will be able now to be more realistic for awhile and the allusion of the big Cure will not sabotage the healing process.

Best wishes,

Sharron

Post Edited (sharron19) : 2/13/2016 11:29:06 AM (GMT-7)

To remind you all, we are trying to conduct a kind of longitudinal research based on self reported experiences with FTs. Please feel free to share some of your experiences with us. In that way we might be able to learn from and help each other.

The variable collected are:

1. age at the beginning of fts
2. sex
3. diagnosis
4. donor's sex/age/relation to you
5. fts:date(from to)/number/frequency
6. medication before during and after fts
7. other information
8. results

The follow-ups, the updates sent from the different participates, are very crucial, so please remember to re-visit.

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 - August 2016.
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 about 40 yrs old, tall and thin; FTs - about 10 daily FTs; antibiotics prior to Fts, Imuran 2 months before, during and shortly after FTs; currently -2 Lialda, prenatal vit w/DHA, VSL#3DS w/Kefir; results and current state of UC - In remission; last update - February 2018.
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.
8. 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. (XXX details of continuation of treatment is wanting). Good retention thus no need for Imodium; results and current state of UC - After the 4 infusions - "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 very formed, no blood, increased food intake; in April 2015 wrote: "...For the 1st time her ESR has come as normal. She still has abdominal pain some days. As of now, no blood and very well formed stools". Sept 2015: "My daughter is now in remission for last 9 months and her ESR reduced substantially last week" ; last update - Sep 2015.
9. OhCrap (Pete)- male, 48 yrs when started FTs: dx proctosigmoiditis 20cm, first diagosed in Oct 2015, after quitting smoking; Donor - 54 years old male friend. FTs - started 4/2/16, currently (June 2016) has done 4 months of daily infusions with great results, was able to go off UC medication at the very beginning of treatment, took 300mg Bupropion (27 Jan to 24th May 2016) in prep for FMT - part of the Briggs' protocol. No adverse effects to treatment, In remission since the beginning of infusions; last updated - Aug 2017.
10. Sharron19 - female, 48 when started FTs: dx - 70 cm of moderate to severe inflammation going up from the rectum. Was first diagnosed 2000, triggered by antibiotics; Donor (second)- female friend who is 2yrs older than myself; Started Fts 1/8/15. Began with a month of daily infusions and gradually reduced it to once a week and even less. The procedure is reported in detail on this board. Results: On the whole, feel much much better. Last infusion 20/6/16. No Meds!; last updated - April 2017

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. 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.
3. Jesper Poulsen- Male, 31 yrs old when started FTs; dx - UC, mostly in the left side diagnosed in 2007 or 2008. Has been hospitalized a couple of times. The frequency, length and severity of flame-ups has increased over time. Donor - 29 yrs old girlfriend, slim and healthy, gets constipated when eating wheat products., so maybe she is not, no blood or stool tests made; FTs - started 20/10-2016 and is continuing. Have had 7 FT's to date over the course of the ~2 weeks. "It's difficult to be regular with it during work days, so we hit it in the weekends and 1-2 times during the week"; medication before during and after fts: "Have had at least 6 rounds of Prednison (50 or 60 mg and the tapering over 3 months). Also tried Imurel which made we really bad and did not help on the UC. Has been taking Asacol for years. The first years 3*800 mg which controlled it somewhat. Later we upped it to 6*800 mg/day, but it could not hold it down". results: "On day 1 the bleeding stopped. After 7 FT i saw solid stool. But it is still in a very unstable state, so I also see loose stool. Down to 1-2 non-urgent BM's/day from ~8 dierrea BM's/day prior to FT. Also, very red skin and eczema around my eyes has significantly improved during the FT period; other important comments: Not stable yet, so will continue. We mostly do FT in the weekends when practically possible. Besides normal vitamins etc. i'm adding fibre supplement, Inulin and resistant starch that feeds the new bacteria". Last updated Nov 2016

Wishing you all a full recovery.

Sharron

Post Edited (sharron19) : 4/21/2018 8:40:10 AM (GMT-6)

OhCrap! So happy for you!! I truly believe in the gut microbes and the replacement therapy!!!

Hi Sharron and bloom. Thank you for following my progress and well wishes.

Update 4 weeks(28 days) daily fmt:

Going well and nothing new to report. Still in remission ☺

Hi OhCrap! I hope you continue to do well. Please keep us updated.

I'm just at the end of the 28th week since the beginning of FTs (with second donor) during which I've had no treatments at all. There is definitely a great improvement and I'm now back to eating raw food, my bowel movements are nearly normal just now and I feel much more energetic. I'm happy the infusions were increased to twice a week over the recent two weeks, as I'm convinced it helped in regaining remission. However, the illness is still there, I cannot eat so many things which I would love to, and I can feel the inflammation mainly in my lower back and my knees. Also, the very recent relapse, with its main symptom of ridiculous and painful abdominal bloating, was a great reminder of the disease. I'm trying, not without difficulties, not to compare my pace of progress with that of others who are, or were, on the path of healing UC with FTs.

I sometimes think that by presenting my case, as I go along the treatment, I instill or provoke two different opinions about FTs. Perhaps it makes some of the followers reject this option due to the uncertainty, the length of it' and the things that it involves doing. Perhaps some others are actually more encouraged by realizing that there is a hope even with a stubborn case like mine. For my self, I really hope that by sharing the path I can contribute to the realization of the diversity in reactions to FTs, which would hopefully help some people here not to give-up too quickly when not getting immediate great results. Even better so If I eventually gain the desirable cure, first for myself but also for the encouragement and inspiration.

I am back to one infusion a week and planning to have the next one on the coming Monday.

Could not do it at all without the most kind and generous donor which I have!

Best wishes,

Sharron

Post Edited (sharron19) : 3/12/2016 12:37:28 PM (GMT-7)

Hello everyone, here is my weekly update as promised.

Update 6 weeks(42 days) daily fmt:

Another week has passed and fmt is still going very well. The only change this week is that I am now residing permanently with my donor. Cheers :)

sharron19 said...
I sometimes think that by presenting my case, as I go along the treatment, I instill or provoke two different opinions about FTs. Perhaps it makes some of the followers reject this option due to the uncertainty, the length of it' and the things that it involves doing.

I certainly admire your dedication, but still worry that you're experiencing uc symptoms and not treating them fully, and sometimes struggling as a result. I'd recommend a mild uc maintenance medication like mesalamine oral or enema. Perhaps a combination of fmt and mesalamine might stabilize and make things easier for you. Have you had a scope, c reactive protein blood test, or fecal calprotectin test since this fmt process has begun? Just curious if inflammation remains, how much, and how severe.

It's unfortunate that you had a bad reaction to 5asa mesalamine, about 5 percent do and must discontinue it. However, that doesn't mean you'll have the same bad reaction to completely different classes of medications. Next would be immunomodulators (Imuran, 6mp, or aza) in your case. I have read many of your posts, but not all 30-some-odd pages of them to know everything about your history-- it's extensive!

Here's more information about the tests I mentioned:

www.healthline.com/health/c-reactive-protein#Overview1

/labtestsonline.org/understanding/analytes/calprotectin/tab/test/

A scope of course, meaning a colonoscopy or at least a flexible sigmoidoscopy.

It's important to make sure you don't have untreated uc inflammation over long periods of time as it greatly increases your odds of colorectal cancer, scaring, and other damage to your large intestine. Just make sure you're monitored appropriately and aren't high risk. A good calprotectin, crp, or colonoscopy result would at least give you the peace of mind that your treatment plan is working, but if not I would recommend using some more aggressive treatments.