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Flaring after long term remission with fecal transplants

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Ulcerative Colitis
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Posted 2/3/2019 12:03 AM (GMT 0)
@MariaMaria many thanks for the encouraging words. Things are actually looking better today. Some dark blood on paper but not at all much in the water and stools are nicely formed today. I'm planning on doing FMTs every other day and Pentasa every other day for around 2 weeks.

I would do prednisone if I start getting diarrhea or if I start bleeding much more
Posted 2/3/2019 6:29 AM (GMT 0)
Today's transplant went fine thankfully. Administered around 200ml. Didn't have any real urgency today and quite a minimal amount of blood. Will just be using Pentasa every other day so we'll see how things go
Posted 2/3/2019 6:02 PM (GMT 0)
No urgency today. Just some dark blood lingering in the stool. Not too much blood. Will be tapering the cortifoam enema from tomorrow (every other day) and will be taking Pentasa.

For what its worth; the stool is looking darker now than when I started flaring. It could be blood thats coloring it dark but it more closely resembles the color of my donors stool now. Mine was quite light brown when the flare started

Post Edited (curl3d) : 2/3/2019 11:06:21 AM (GMT-7)

Posted 2/4/2019 5:13 PM (GMT 0)
Still bleeding today, didn't do any FMT yesterday. Hard to say if it's more or less but I think the inflammation has decreased in the bottom of the colon due to the use of colifoam and has moved up a bit in the colon. I will be starting to use colifoam every other day from now on.
Posted 2/4/2019 11:24 PM (GMT 0)
Things are not looking up unfortunately and I'm getting ready to start a run of prednisone to get the inflammation down again. I would continue the FMT after inflammation has subsided a bit (maybe when I'm down to around 25-30mg). Just waiting to have a chat with my GI first but will be on pred soon unless things look better tomorrow
Posted 2/7/2019 6:58 PM (GMT 0)
Just a short update; took a pause in transplants until inflammation calms down. Eating prednisone and will meet my GI next week. Planning on continuing doing transplants either today or tomorrow depending on how things look.
Posted 2/7/2019 8:21 PM (GMT 0)
Hey Curl, hope the prednisone kicks in soon! Sounds like a good plan. If FMT with the same donor worked for you the first time while weening off prednisone, hopefully prednisone is the key to your puzzle and will get you the same results this time around. Looking forward to updates.
Posted 2/8/2019 7:28 AM (GMT 0)
Hey @MariaMaria thanks for hanging in here with me- the interest for FT doesn't seem to be as high as when I did this 7 years ago. I still believe in it as a way to rebalance the gut after being in a flare. Was bleeding quite a bit less today so decided to do a transplant in the afternoon. Went well and administered 200 ml. Urgency is down too

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DAYS SINCE FLARE STARTED: ~30
FMT DAY: 4
SYMPTOMS: Not much urgency. Some darker blood on the paper when wiping and some drips in the water. Well formed bowel motions.
MEDICATION: Asacol. Prednisone @ 40mg
BM/DAY: 3-4
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Posted 2/8/2019 7:18 PM (GMT 0)
Hey Curl, yes it does seem interest has dropped off compared to a few years ago. I think initial interest was based on the hope that FMT might be a "cure" or a magic bullet. As people find out it's more complicated than that, and we're all still learning through trial and error, interest seems to drop off - it's a lot of work and we've seen enough people in this forum not see results, so I think that dissuades people. Perhaps when researchers have more answers and find a way to fit it more neatly into the western medicine ideal interest will come back up.
As of recent, a few people on this thread have participated in clinical trials, seeing mixed results from those folks.
I achieved a very fast remission last November using this treatment (30 transplants - by day 4 all my symptoms were gone). Unfortunately I flared again 4 months later. I blame myself for going off meds and diet too quickly, and had a lot of life stress going not that I let get the better of me. I started to question FMT's efficacy at that time but, I was able to get my flare under control quickly and when I had a colonoscopy it was the best looking colonoscopy I'd ever had! My doctor was shocked. He wouldn't admit FMT was the sole reason for my improvement, understandably so. But I chose to decipher that information as: FMT has a positive effect on me, and it's up to me to keep experimenting and trying, not giving up on diet and meds and treating this as a "cure all", but instead using FMT in conjunction with other tactics, and sticking to it longer term.
I've been in remission since this summer but I keep doing FMT, because it's making me feel fantastic and I'm almost scared to stop. I'm saving $250 CAD a month by doing nightly FMT's instead of nightly salofalk enemas so for that alone it's worth it. Not sure how things will go as life gets busy and I drop down on the amount of FMT's.
All this to say, my experiment is a work in progress and I hope you find the same success you saw before this time around! I'm rooting for you.
Posted 2/8/2019 7:30 PM (GMT 0)
One more note: I often wonder what happened to Michael Hurst who was a super vocal advocate for FMT on this forum, and his own blog, years ago after it worked for him. He's been MIA for years now, not a trace of him on the internet (believe me I've looked, and have even tried reaching out to him through his website a year ago, no response). I wonder if he relapsed and gave up on the treatment? I hope not, I hope he's just doing well and got too busy to talk about fecal transplants online. But if he did relapse, I hope he isn't hiding away in shame because it "didn't work". I think it's important to be candid about the ups and downs of this treatment, like you are being.
Posted 2/8/2019 7:36 PM (GMT 0)
Hi i am in europe, there are a few hospitals here playing with FMT and in fact my own hospital is just starting experimenting with them now. But my dr said he doesn't think it's a miracle cure (especially for someone in my situation, kind of at the end of the line before surgery) and they are still trying to understand why it helps some people and not others. So the interest is still here but I think it's going to take a looong time to refine the procedure. I've thought about asking to be a guinea-pig here but i don't trust their quality control on the donors (i would like to see a photo and bio of whoever im getting one from ha ha) - i think they mix up samples from several different people which makes it hard to know whose poop was effective.
Posted 2/8/2019 8:39 PM (GMT 0)
I actually never believed that it would be a miracle cure for UC, I saw too many other symptoms that seemed unrelated to only the colon to be able to believe that. Like people get joint pain before flares and all kinds of stuff which seems to suggest that our immune system is reacting to something and that in turn triggers a whole lot of reactions, ultimately leading to our colon getting inflamed.

What seems to be quite consistent though is that people with UC have awful gut flora when they test them. My conclusion from that is that the gut flora in many cases suffers when our colon gets inflamed. Who knows if I those 7.5 years that I was in remission was helped by FMT or not but an overwhelming majority of people are reporting positive results from eating probiotics so that would suggest that providing the right bacteria to your colon does have an effect on its health.
Posted 2/8/2019 8:49 PM (GMT 0)
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DAYS SINCE FLARE STARTED: ~31
FMT DAY: 5
PRED DAY: 4 (@40mg)
SYMPTOMS: Not much urgency. Some darker blood on the paper when wiping and some drips in the water. Well formed bowel motions.
MEDICATION: Asacol. Prednisone @ 40mg
BM/DAY: 3-4
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Post Edited (curl3d) : 2/8/2019 3:41:26 PM (GMT-7)

Posted 2/8/2019 10:28 PM (GMT 0)
The blood seems to be slowing down and I was able to keep yesterday's transplant from 4pm until 7am in the morning so that's quite good. Did today's transplant in the morning so we'll see how it goes. Hope to be able to keep it until tomorrow but wouldn't bet on it
Posted 2/9/2019 10:21 PM (GMT 0)
Got a good transplant in yesterday and not bleeding a lot at all today. Most of the light red blood was gone this morning and just some darker patches lingering around. Urgency basically gone now. I can really feel the prednisone taking effect now though, a strange warm feeling in my body and feels like my limbs and muscles are being depleted of energy/water.

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DAYS SINCE FLARE STARTED: ~32
FMT DAY: 6
PRED DAY: 5 (@40mg)
SYMPTOMS: Basically no urgency. Some darker blood traces in the stool. Well formed bowel motions.
MEDICATION: Asacol. Prednisone @ 40mg
BM/DAY: ~3
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Posted 2/10/2019 5:47 PM (GMT 0)
No blood in my first bowel motion today. I'm meeting with my GI tomorrow and I'll be talking to him about an internal haemorrhoid I think I have. If he can see it with a sigmoidscope then I'll talk options of getting it surgically removed. If inflammation starts with the hemorrhoid and spreads from there then why not try to get rid of the hemmy?

It was clear to me that it started in the rectum this time. I had an itchy feeling and I could feel the hemmy when I visited the loo.
Posted 2/10/2019 6:50 PM (GMT 0)
No blood in the second bowel motion either. Gonna take a break from the FMT today as my blender broke yesterday so need to pick up a new one tomorrow when I visit my GI.

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DAYS SINCE FLARE STARTED: ~33
FMT'S PERFORMED: 6
PRED DAY: 6 (@40mg)
SYMPTOMS: No blood, no urgency, no symptoms today basically
MEDICATION: Asacol. Prednisone @ 40mg
BM/DAY: ~3
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Posted 2/11/2019 6:09 PM (GMT 0)
Very little blood left, the prednisone is waking me up at night now and I'm also waking up from having to go up and pee. Super thirsty in the evening and then peeing it all out in the night. Didn't do any FMT yesterday and probably won't have time to do one today either with all that is going on.

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DAYS SINCE FLARE STARTED: ~34
FMT'S PERFORMED: 6
PRED DAY: 7 (@40mg)
SYMPTOMS: Very little blood, a little bit of urgency but quite well-formed stools.
Some kind of irritated feeling on the right-hand side of the inside of the rectum. Suspecting internal hemorrhoid which may have been where this flare started.
MEDICATION: Asacol. Prednisone @ 40mg
BM/DAY: ~3
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Post Edited (curl3d) : 2/11/2019 4:19:37 PM (GMT-7)

Posted 2/12/2019 5:45 AM (GMT 0)
Just came back from my GI and performed a sigmoidoscopy - he was concerned with the amount of inflammation that he saw so I'm going to do a colonoscopy in 48h. Feel a bit bummed out I must say even though the inflammation is coming down with this course of Prednisone. He thinks it looks worse then what it did the first time I was diagnosed but he can't tell if its pancolitis or how far the inflammation has spread this time. I'll give you an update on Friday when I'm back on my feet again!
Posted 2/12/2019 7:14 AM (GMT 0)
I will be checking in Curl3d. I hope the FMT brings you remission again soon! You were doing your FMT posts right in the same time frame that I did mine. I did them in August 2012. I am still in remission. I really credit the FMT. I stayed on mesalamine max dose for years after. I now am on 2 Lialda a day. I still take VSL#3 although not as religiously as I did for years. I try to eat fairly clean but I don’t stick to any specific diet - but I never eat beef. I gave that up after my flares and never looked back. I’m completelt amazed and thankful I have stayed in remission despite going through the ringer with a breast cancer diagnosis - everything from chemo and multiple surgeries ( which meant antibiotics in my IV)

With this current rounds of FMT, are your docs helping with the protocols? Did you take an antibiotic to kick it off? I remember I took an antibiotic at first and did a colon prep cleanse. Then my donor loaded up on high fiber diet for several weeks.

My docs in the US won’t even discuss FMT anymore. The doc who helped me in 2012 told me his hands were tied by the FDA. But I would do it again if I had to! Just wish there could be some medical guidance.
Posted 2/12/2019 7:58 AM (GMT 0)
@LoLil thanks for checking in and thanks for staying with me! I still believe in FMT as a way to bring your colon back to shape. Everything points to probiotics having a positive effect so then FMT should be super positive since it contains so much more than a probiotics tablet. My doctor is pretty supportive in FMT. He's also a professor at our university so I have high confidence in him.

When I asked him today if he thinks I should be doing it during my current flare, then he said that he thought that the inflammation was too severe for it to be worth doing FMT right now. He wants to focus on getting the inflammation down first. He seems to be of the opinion (my interpretation) that its a good way to get good gut health back but that it's not a magic pill of any form.
Posted 2/12/2019 8:03 AM (GMT 0)
@LoLil forgot to say by the way that it's great that you've managed to stay in remission for so long! Especially considering your journey of breast cancer and the rest of it. I'm like you also 41!
Posted 2/12/2019 5:13 PM (GMT 0)
So now the prednisone is waking me up at night and making me go to the toilet. What a dilemma. I could hold it all night when I was doing transplants a couple of days ago and now I got insomnia and more bowel motions. Maybe it's just that I'm getting worse or maybe the transplants helped. No way of knowing.

I'm due for my colonoscopy tomorrow so not going to stress my colon more than necessary (doing the colon prep in 12 hours anyhow). FMTs will have to wait a cpl of days, I want to know the status of my colon first.

Post Edited (curl3d) : 2/12/2019 10:21:13 AM (GMT-7)

Posted 2/12/2019 7:51 PM (GMT 0)
Good luck with the scope!
Posted 2/14/2019 8:27 AM (GMT 0)
results on colonoscopy were better than expected. So far the inflammation is only in the first 26cm of the colon (from rectum) so will be doing pentasa enemas and trying to get some FTs in as well over the next month. Will be reducing to 30mg prednisone in around 48h. Been dizzy all day first from not eating and then from Fentanyl so hoping I feel more like myself tomorrow
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