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
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
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 2017Not 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.
Post Edited (sharron19) : 4/21/2018 8:40:10 AM (GMT-6)