Flaring after long term remission with fecal transplants

No symptoms today when waking up either. Going down to 10 mg prednisone in 2 days (4th of March) unless symptoms re-appear.

Good transplant today @ 200ml - two bowel motions and both without symptoms

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DAYS SINCE FLARE STARTED: ~53
FMT'S PERFORMED: 20
PREDNISONE DAY: 26
SYMPTOMS: No visible blood, no mucus no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 15mg
BM/DAY: 2-3
WEIGHT: 73.5kg (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) : 3/1/2019 8:38:49 PM (GMT-7)

Didn't do any transplant yesterday and had a bit more symptoms last night and when waking up this morning. More gas last night but not a lot of blood in the morning. Still enough to be seen on the TP and went to the bathroom a few extra times in the morning. No idea if it was because I didn't do any transplant, if it was something I ate that upset the whole thing or if its the prednisone that isn't doing enough to keep the last bit of the inflammation down.

I'm thinking that the transplants are really helping to keep the colon in balance and that my colon is still healing so I'm going to try to keep doing them for a while. Meeting with my doctor tomorrow so we'll see what he says too.

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DAYS SINCE FLARE STARTED: ~55
FMT'S PERFORMED: 21
PREDNISONE DAY: 28
PENTASA DAY: 17
SYMPTOMS: Small amounts of visible blood on the TP, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 15mg
BM/DAY: 2-3
WEIGHT: 73.5kg (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) : 3/3/2019 10:08:56 PM (GMT-7)

HI… MARIAMARIA and CULD3D and everyone a have read in the past 2 years...and Sharron i really hope you are well...my son have uc he was in remission for 1 year after fmt...but we did not do maintenance like Sky Curtis have said...i am so mad at my self he is suffering again ...see i am from Québec canada here we have no one to talk to about fmt...if you talk about fmt you are weird loll...but it has save my son before...we have no one to talk to ,so i have comme here all the time..sometime it help ...maria maria ...sky talk about fmt like it takes time and a lot of fmt...Dr Borody says it take 12 weeks for remission...i have read a lot on Sky with her son but to really talk to someone it will help...we have been doing fmt again...its been 25 days and 16 fmt.. he has big big cramps in the morning and his bm are liquide or not and blood no blood...it is different everytime...sometime we had to freeze the fmt we dont know if it is good or not...it is so hard...so hard to see someone you love like this...MARIA MARIA ...Micheal Hurst is on facebook he looks well he travels a lot .his facebook are not to talk about fmt but he looks good...know one wants to talk loll i would like to talk to sky...she said that the side effects the pain the blood the cramps indicate that the new bactéria is very busily reproducing and recolonizing...i don t know were to turn , it like know one wants to talk they tell to by the book ...ok fine but we need to talk and most important to hear your experience...thank you to everyone here ,,,you are great to open like you do thank you thank you...sorry for my English...take care...

Ok, so I met my doctor yesterday and discussed the colonoscopy results. Basically, my inflammation is only located in the last part of the colon compared to last time where it was pancolitis, but its more severe on their scale of measure. He said that this means that it will likely linger around for longer this time. He also said that I may have blood for longer and that I may have to stay on pentasa for longer.

He wants me to come off prednisone over the next 3 weeks (at 15mg as of yesterday). So, I'm thinking that I'll take a couple of more days of 15, then drop to 10. I still saw blood this morning on the toilet paper, but not much at all. Will be doing a transplant today

No symptom today. Did a transplant yesterday. Yesterday was like the third time this flare that I have had symptoms the day after a day where I did not perform FMT. My stomach is quiet and well behaved the days I do an FMT. Coincidence or not?

Will be stepping down to 10mg prednisone today.

@MariaMaria well if it keeps you in remission then I guess its best just to get a good routine and then keep doing them. How often do you do them now? and do you do them a few times in a row or just single days every now and then?

@MariaMaria I hear you! have you tried combining it with nicotein patches? There seem to be varied results among the studies using nicotein but could be an avenue I try before going down the azathiropine route (if fmt fails by itself etc). Not to keen on smoking cigarettes at this age but patches could be worth a try.

It may be worth trying Nicotine patches of 21mg for you since I think (correct me if I'm wrong) that you'll have to vape quite a lot to get up to the same dose of Nicotine as they have used in the studies where they have seen success in UC. I mean you could do a bit of both and then just gradually cut the vaping off when you feel you're in a good mental state.

I smoked when I was around 22 and then switched to using snuff which I used for a number of years (the Swedish/Finnish kind of snuff you use under your lip). Snuff is about 7 times stronger in Nicotine dose than cigarettes so who knows maybe it would affect my UC.

Here's a good discussion around vaping vs smoking and how much you're getting:
https://www.quora.com/to-how-much-cigarettes-day-is-my-vaping-equal

Looks like its around 50% from what you get from a cigarette but I didn't read all the details

yes hard to know, there was serious a study from 2006 that I skimmed through which saw increased remission rates with patches compared to placebo but then other studies have suggested that its the hydrogen cyanide (which you only get from normal cigarettes) that is what helps with UC. My guess is that its a bit of both (nicotine + cyanide) which makes normal cigarettes best as treatment.

Pretty nasty headache during evenings at the moment, probably the prednisone/taper. We'll see tomorrow how dropping to 10mg pred goes. Intending to carry on with FMT until at least a week off pred w/o symptoms and then taper it so we're looking at around 2 more weeks at least of daily FMTs in a best case scenario.

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DAYS SINCE FLARE STARTED: ~58
FMT'S PERFORMED: 23
PREDNISONE DAY: 31
PENTASA DAY: 20
SYMPTOMS: Tiniest tiniest visible blood, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 10mg
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 for continuing to update this curl3d. Very interesting and sounds hopeful. Fingers crossed that you get off the pred without too much grumpiness. I was so awfully hot-tempered on pred. it's somewhat comical, but at the same time, it's frustrating and difficult to deal with,

I have seriously yelled at people because of prednisone. People I didn't know. Someone parked in my driveway and I got so angry. It was totally irrational - it was like my head was going to explode. I think the guy was scared - who parks in someone else's driveway anyway? So rude. My face must have turned bright red and I lashed out majorly. Thinking back, how embarrassing... but i felt better afterward. I needed to get the rage out.