Flaring after long term remission with fecal transplants

Thanks @MariaMaria - starting to taper pred from tomorrow doc wanted me to go directly down to 20 from 40 so will be pretty quick taper. Hope for my family's sake I won't get too much roid rage

Still, a fair bit of blood water when I go to the toilet but urgency is down. Especially in the morning since the prednisone will be at its lowest then and not visiting the toilet between 11 am and 6am the day after. Still actively bleeding in the last part of the colon. Only doing 100ml transplants at the moment- should be enough since inflammation is only in the last part of the colon. Less gas which is a good sign.

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DAYS SINCE FLARE STARTED: ~40
FMT'S PERFORMED: 8
PRED DAY: 12 (@30mg)
SYMPTOMS: Dark blood in the water. Quite well-formed bowel motions. No urgency today.
MEDICATION: Asacol. Pentasa. Prednisone @ 30mg
BM/DAY: ~3
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Post Edited (curl3d) : 2/16/2019 5:40:45 PM (GMT-7)

Looking fine today as well- feeling stronger and was able to keep the transplant in for the whole day and night.

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DAYS SINCE FLARE STARTED: ~42
FMT'S PERFORMED: 10
PRED DAY: 14 (@20mg)
SYMPTOMS: No blood no mucus and no urgency. Well-formed bowel motion
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 20mg
BM/DAY: 2-3
WEIGHT: 74.5kg (was at 77.5kg when flare started)
DIET: Mediterranean diet, not drinking milk or eating gluten while on a flare. Avoiding sulphur and sulphite rich foods (like egg) while on a flare.
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Post Edited (curl3d) : 2/18/2019 11:56:20 PM (GMT-7)

Feeling great today - sorry if I'm boring you with these updates it's just good to get a chronological log of symptoms together with the FMT and the medicine I'm taking.

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DAYS SINCE FLARE STARTED: ~44
FMT'S PERFORMED: 12
PRED DAY: 16 (@20mg)
SYMPTOMS: Tiny traces of blood, tiny bits of mucus and no urgency. Well-formed bowel motion
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 20mg
BM/DAY: 2-3
WEIGHT: 74.5kg (was at 77.5kg when flare started)
DIET: Mediterranean diet, not drinking milk or eating gluten while on a flare. Avoiding sulphur and sulphite rich foods (like egg) while on a flare.
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Post Edited (curl3d) : 2/21/2019 11:30:12 AM (GMT-7)

@LoLil I was given antibiotics the first time when I was flaring and it made my symptoms much worse. They gave it because I wasn't diagnosed with UC yet and the doctor wanted to try to see if I had a bug causing the bleeding. A bad GP basically. I have not taken any antibiotics at all since. Been sick a few times (with regular flu stuff) and has been given the option to take antibiotics but I have been able to ride out each without taking them.

I would take antibiotics if it is a choice between that or ending up at the ER but that's pretty much where my line goes personally. They hit so broadly so its impossible to know which of all bacteria that will get knocked out.

I read somewhere that our body can recover pretty well from one course of antibiotics but that they have seen permanent damage to the flora when we take multiple antibiotics treatments after each other without time to recover.

Curl3d,
Been reading your posts and so glad that FT is working its miracle again..
Wishing you a long lasting remission...

best wishes..

My colon has been super quiet today, two poops in the morning and then nothing. Made one fart in the afternoon before I did my transplant at 2pm and then quiet again.

I took a break from FMT yesterday. Colon still pretty far from what it used to be (more gassy in the morning and not as solid as I would like it) so I think its good to continue with the FMT for a while. Not really seeing any symptoms in terms of urgency or blood.

Good transplant today @ around 200ml

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DAYS SINCE FLARE STARTED: ~48
FMT'S PERFORMED: 16
PRED DAY: 20 (@20mg)
SYMPTOMS: Tiny traces of blood, tiny mucus and no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 20mg
BM/DAY: 2-3
WEIGHT: 74kg (was at 77.5kg when flare started)
DIET: Mediterranean diet, not drinking milk or eating gluten while on a flare. Avoiding sulphur and sulphite rich foods (like egg) while on a flare.
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Thanks @MariaMaria! I'm thinking to do every other day now for a while - not sure how long but would be good to do it for around a week after bleeding completely stops. Still seeing a tiny trace of blood on the TP

Trying to get down to 15mg again today - performed a transplant today that went well. Feeling generally quite rubbish from the prednisone taper (mainly heavy headed, tired). We'll see how things look tomorrow but hoping to be able to use the transplants to be able to step down in prednisone. Had so few symptoms today so figured I'd try to battle it.

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DAYS SINCE FLARE STARTED: ~51
FMT'S PERFORMED: 18
PREDNISONE DAY: 24
SYMPTOMS: Very small amount of blood, no mucus no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 15mg
BM/DAY: 2-3
WEIGHT: 74kg (was at 77.5kg when flare started)
DIET: Mediterranean diet, not drinking milk or eating gluten while on a flare. Avoiding sulphur and sulphite rich foods (like egg) while on a flare.
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Feeling pretty good today and had no symptoms when waking up. I'm sure there will be symptoms again lingering around though.

A lesson I would add to this flare in terms of the transplants is to be quite generous with saline and to try to get the transplant to body temperature before administering it. This will help a lot in keeping it longer inside your colon. The thicker it is the more likely it seems that the colon will think that it needs to come out whereas if it's quite fluid then my colon really doesn't seem bothered with it and happily keeps it in there until the day after.

@TroubledTurds: Thanks for sticking around! I try to hold a low sulfur diet with low amounts of sugars while flaring. Diets are a bit like religion but the only evidence I have seen which is somewhat convincing is that UC people have an overproduction of gas from sulfur (especially when flaring) so thats what I'm targeting at the moment. This is what I eat during the days:

Breakfast
Scottish Oats, Banana, linseed, walnuts mixed with some cocoa powder with some Almond milk. Heat it 1 minute in the microwave, let it cool off and then add some more almond milk before eating. Top it with some blueberries.

Lunch
Typically take a gluten-free & preservative-free wrap and add whatever I have at home like avocado, some chicken piece leftovers cheese and butter. Typically eat a banana and a carrot with it.

Dinner
It differs but I try to stick to plain things like potatoes, white rice, veggies and with some fresh white fish or chicken. I know those meats contain sulfur but its good to get some proteins so I just try to not overeat.

I eat dinner quite early like 4:30-5pm and then I eat nothing until the day after at around 7:00am. Just drink water. Thats kind of like Intermittent Fasting I suppose since its like 14 hours between those meals.