Flaring after long term remission with fecal transplants

keep those post-pred, happy-colon bumps coming !

not that you aksed, but i'll spout off anyway ->

go easy on the supps, ekspecially the fish oil - some folks don't do real good on it -

Another bump - no symptoms at all and still 2bms per day which is what I usually have when I'm not in a flare.

I'll make the bumps more rarely (sorry moderators if the bumps bother you!). It's just to give people a way to follow up on my case.

I'm doing this hoping that it provides some value for people to see the whole episode from the start of a flare to finish (hopefully at the end of it).

Hi i hope you are doing better curl3d...i read yours post and hope you are well..hi marimaria and everyone...we went to the GI gastroenterologue today for my son,..his iron is low but after a big flair and good lost of blood ..since april we starter fmt and he keeps 12 hr to 20 hr..the inflamation is down so it been good juste hope it works he has 2 bowel a day and nice poop loll i hope its working he is still on pred ...the GI wants him to be on remicade and he don t believe that fmt works or has proof that it works and remicade has proof...i know that you can fall on remicade and sometime nothing works..he sais that will lose his colon in 5 years if he don t take remicade ..and tofacitinib...he dont know who is dr thomas borody that i don t really believe ...it is so hard ..we really want to do like sky curtis or others that believe in fmt with medication but no remicade ...fmt did work so if it works this time i will never stop till i die loll..GI believe in meds not fmt .we did not tell him tat we did fmt..we juste toll him about dr borody ans taymount clinique . my son .he can not be great we got back from the hospital 3 weeks ago it take time to heal ..we juste hope we are in the good path..thanks for your time everyone please feel free to tell me what you think ...sorry i am from Quebec so my English is not so good ,,,take care..

Post Edited (letstryit) : 4/17/2019 10:10:37 AM (GMT-6)

Hi Letstryit, you need to tell your doctor you've been doing FMT. If your son is doing well right now it could be the steroids, could be steroids and FMT. Your doctor needs to see the whole picture.

If the FMT hasn't caused any damage (infection, rise in inflammatory markers) he should be willing to let you continue experimenting and while he monitors. Your doctor is not liable as long as he is not administering and prescribing FMT. Perhaps you can work out an agreement whereby he allows you to continue with FMT for a period of time while monitoring your son. If it works and he continues to improve, no need for biologics at this time. If it doesn't work, or your son's condition gets worst, your doctor can offer support and guidance on how to carry forward.

Even if he is not up to date on the current research about FMT or personally isn't in favour of it, he should not stop you in trying it. If he does, you can find another doctor. But you must be upfront about what you are doing.

thank ..my son is taking prednisone 20 mg and after he will be on asacol...the GI wants him on remicade ..he is not for fmt but he is trying to help my son...he is juste saying that if he dont take remicade he will lose his colon.we think we should try fmt and see with a medication yes but not remicade now....my husban wanted to tell for the fmt i was afraid to tell him but we will we will see him in 3 to 4 weeks..thank you you are all great take care..

Hi letstryit, when I started FMT and still had inflammation there was some discomfort doing the enemas, no different from discomfort I had doing mesalamine enemas. Sky Curtis recommends taking immodium just before transplants to calm down discomfort and urgency.

Hi well after 12 fmt my son is flaring again this morning bloody liquide stomac pain...but i read in Sky s book that having all the side effects he had like stinky gas fever night sweats she sad that side effect inclued all that and random blood diarrhea after there has not been for weeks and various type of poop and lots of stomac pain are positive the new bacteria is very busily reproducing and recolonizing ,,,but how to know if it is that ...we dont want him to lose weight he lost 35 in 2 months and his great smile his joy is gone..and the pain and seing him in pain is the worst feeling for us ..so we don t now if it is positive or negative so we are doing it again 1 week i know it is not long but we have to go for the big drogue entyvio or something and keep doing fmt everytime we can,,,for 1 month we did 12 we did not have always nice poop so it did not stick ,,give one day and 3 days off is no good...we will see ...it helps me here thank you ..my husband is great but i need someone to talk to so thanks ...take care...p.s. do you know is any one have done fmt whit remicade or entyvio or other big drogue i think that doing it may help heal and have a nice colo ..and go back whit lower drogue we will do anyhing …

Hi Letstryit, I understand your frustration that your doctor is not in favour of FMT but if your son is flaring again you do need to talk to him. Hopefully he will allow you to continue FMT but your son also needs to be on the right amount of medication to stabilize him first.
In the clinical trials for FMT many patients are on biologics. Sky Curtis's son tried biologics prior to trying FMT, it is possible the biologics are what stabilized him enough to get the FMT to work. Don't be afraid of biologics, your goal should be to get your son to a stable condition, and hopefully the FMT can help him sustain remission after that.
Sky Curtis's son was experiencing night sweats because she, his donor, was going through menopause at the time. She was transmitting a high amount of hormones. Those symptoms were unrelated to whether the FMT working or not for his condition. I do not think stomach pain, random blood, fever etc. are signs that it is working.
I am wishing the best for your son, I hope he finds relief fast. This forum is great for people to share what we've gathered from our own research and experience, but we on this forum are not doctors. I think at this time is some help from your gastro to develop a plan.

I would echo and agree with the previous posters. I would look at FMT with similar eyes as you look at probiotics. It most likely helps but doesn't cure the condition.

I'm doing pretty good but still seeing a little bit of lingering blood - I only have around 2-3 BM/s per day at the moment so not too bothered about the blood that is left (usually too little to make notice of it on the toilet paper). I'm scheduled to see my GI in around a week so we'll see what he says.

Yes, I'm in a remission with remicade, and feeling wonderful. Not sick any more than normal.

Ipoop,

I wonder if you could explain something for me. You wrote:

"Gasteroenteroligists are only able to prescribe treatments that are officially approved for the treatment of Ulcerative Colitis. "

Doctors routinely prescribe medications for conditions for which they are not approved. My GI has prescribed medications for me (nortriptyline, dicyclomine) that I don't think are approved for UC.

Why is FMT different?

Thanks.

They are doing clinical trials in fmt for colitis in several European countries. My own hospital started a few months ago. If i kicked up a fuss i could probably get it but I'm not that bothered - party because they say it's not very effective in severe colitis and partly because there is no donor control. We even have a "national poop bank" where you can make a donation. But my understanding is that here they mix up the poop from several donors and you don't know what you're getting and then I didn't want to take that risk. Especially after reading stories where obese people donated and the recipients became overweight.