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Flaring after long term remission with fecal transplants

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Ulcerative Colitis
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Posted 3/7/2019 9:47 PM (GMT 0)
Me driving on prednisone, oh the road rage was truly epic... I'm normally an aggressive and impatient driver, but oh on pred it was total next level stuff. Picture me in the convertible with the top retracted, two middle fingers in the air, with my knees holding down the horn... *blush* Can't for the life of me, remember what the other person did to deserve that...

Prednisone creates stories, so many stories...
Posted 3/7/2019 9:55 PM (GMT 0)
Hahah oh man, thanks for painting that picture. I totally relate. Prednisone makes me revert back to hormonal teenage-angst levels of irritability. Literally my mother will call and I can't help but react like "WHAT do you WANT mom?!" So embarrassing seeing my inner brat come out as a grown adult lol.
Posted 3/7/2019 10:59 PM (GMT 0)
On prednisone now for 10 days and can so relate. I had a meltdown on Sunday morning because I felt like my teenager never wants to hang out with me... sobbing at the kitchen sink while washing dishes. Then I remembered I was on prednisone and the next few weeks were going to be a bit of an emotional roller coaster. I've warned my family.
Posted 3/8/2019 6:30 PM (GMT 0)
Another good day with 0 symptoms today. BM looks like it did prior to flaring now. Still having more gas than when normal.

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DAYS SINCE FLARE STARTED: ~60
FMT'S PERFORMED: 25
PREDNISONE DAY: 33
PENTASA DAY: 22
SYMPTOMS: No 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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Post Edited (curl3d) : 3/9/2019 12:06:31 AM (GMT-7)

Posted 3/9/2019 6:42 PM (GMT 0)
Still no symptoms, but quite a bit of flatulence in the night/morning when waking up. I'm pretty confident that I can drop to 5mg prednisone fairly soon. I've eaten 10 for 5 days today so I'll give it another 2 days and then I'll drop to 5mg. Will most likely drop to 0 from 5mg after a week on 5mg if things are progressing well.

A bit late fmt today and only ~ 150ml

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DAYS SINCE FLARE STARTED: ~61
FMT'S PERFORMED: 26
PREDNISONE DAY: 34
PENTASA DAY: 23
SYMPTOMS: No 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.
-----------------------------------------------------------------------------------------------------

Post Edited (curl3d) : 3/9/2019 8:37:17 PM (GMT-7)

Posted 3/10/2019 10:24 PM (GMT 0)
Sorry for the boring updates but no symptoms today either. Pretty keen on getting off prednisone soon but will take 10mg tomorrow too and then drop to 5.

------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~62
FMT'S PERFORMED: 26
PREDNISONE DAY: 35
PENTASA DAY: 24
SYMPTOMS: No 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.
-----------------------------------------------------------------------------------------------------
Posted 3/12/2019 3:02 AM (GMT 0)
A little bit less gassy yesterday and managed to sleep all night for the first time in a long while, which was nice. Been to the bathroom 4 times today and also yesterday but I have a feeling I get an extra bowel motion because of the FMT and because I'm taking Pentasa.

Tried to hold things in today before going to the toilet, just as a test, and that didn't cause much discomfort. I still think I have some lingering small amount of inflammation at the end of the colon. Dropping to 5mg prednisone tomorrow.

------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~63
FMT'S PERFORMED: 27
PREDNISONE DAY: 36
PENTASA DAY: 25
SYMPTOMS: No visible blood, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 10mg
BM/DAY: 2-4
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.
-----------------------------------------------------------------------------------------------------
Posted 3/13/2019 12:44 AM (GMT 0)
Gas is down today too which is good, got some nasty headaches during evenings probably because of prednisone. Otherwise feeling well in general.

------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~64
FMT'S PERFORMED: 28
PREDNISONE DAY: 37
PENTASA DAY: 26
SYMPTOMS: No visible blood, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 5mg
BM/DAY: 2-4
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.
-----------------------------------------------------------------------------------------------------
Posted 3/13/2019 10:56 PM (GMT 0)
No changes today just nasty headache in the morning

------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~65
FMT'S PERFORMED: 29
PREDNISONE DAY: 38
PENTASA DAY: 27
SYMPTOMS: No visible blood, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 5mg
BM/DAY: 2-4
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.
-----------------------------------------------------------------------------------------------------

Post Edited (curl3d) : 3/13/2019 9:04:51 PM (GMT-6)

Posted 3/15/2019 3:34 AM (GMT 0)
No changes and no headache today (yay!)

------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~66
FMT'S PERFORMED: 30
PREDNISONE DAY: 39
PENTASA DAY: 28
SYMPTOMS: No visible blood, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 5mg
BM/DAY: 2-4
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.
-----------------------------------------------------------------------------------------------------
Posted 3/16/2019 5:13 PM (GMT 0)
No changes in symptoms had a late and small transplant yesterday but perhaps better than nothing. Its around 8 days now since I saw blood

------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~67
FMT'S PERFORMED: 31
PREDNISONE DAY: 40
PENTASA DAY: 29
SYMPTOMS: No visible blood, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 5mg
BM/DAY: 2-4
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.
-----------------------------------------------------------------------------------------------------
Posted 3/17/2019 12:41 PM (GMT 0)
glad things are improving - thanks for the updates -
Posted 3/17/2019 5:44 PM (GMT 0)
@TroubleTurds thanks for hanging around! Hopefully, this thread will keep getting more boring ;-)

No changes in symptoms. Still, have a bit more flatulence then I would like. Esp in the evenings. I would love to think that I could reduce the amount of gas I get through diet but not sure.

Only did 100ml (1 enema) FMT yesterday. Thats probably how I'll be doing it this week. Terminating prednisone in 5 days.

------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~68
FMT'S PERFORMED: 32
PREDNISONE DAY: 41
PENTASA DAY: 30
SYMPTOMS: No visible blood, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 5mg
BM/DAY: 2-4
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.
-----------------------------------------------------------------------------------------------------
Posted 3/19/2019 8:08 AM (GMT 0)
I won't be posting updates as frequently as previously unless my conditions change. 3 more days of prednisone. Skipped one day of FMT and didn't see anything different.
Posted 3/20/2019 6:22 PM (GMT 0)
Just a small update; there's still inflammation lingering around, unfortunately. I have been skipping doing FMT every other day and I can see traces of blood in the stool. Quite demoralising to be frank. I'll continue with my FMT and see how things progress.

I don't think the inflammation ever left me, to be honest. The inflammation was more severe this time and doc said it will take longer to heal than last time.
Posted 3/20/2019 9:35 PM (GMT 0)
maria maria ...hope you are well ..are you doing fmt 2 time a week...sky curtis thinks we can do it 2 times a month for 2 to 3 to 4 years ...we are not stoping this time if it works...thank you everyone you help me wen i can read you..take care...
Posted 3/20/2019 9:37 PM (GMT 0)
i hope Sharron19 can tell us if she is well ...she had a big battle with uc...and fmt...i hope she is well i read a lot of her post and it help ...hope you are well….
Posted 3/21/2019 5:31 PM (GMT 0)
Letstryit, is it really necessary to psot the same exact text a dozen times in multiple threads? Spammy...
Posted 3/21/2019 5:57 PM (GMT 0)
Did a good transplant yesterday and have 0 symptoms today. I guess my colon is addicted to my wifes poo. Last day of prednisone today

My plan is as follows:

Carry on with fmt+pentasa and hope symptoms completely disappear+stay away
If symptoms come back: use colifoam in the morning
If colifoam doesn't help: try using 21mg nicotein patches
If nicotein patches won't work and I get worse: azathioprine
If azathioprine doesn't work and I get much worse: throw the colon in the rubbish


------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~73
FMT'S PERFORMED: 34
PREDNISONE DAY: 46 (last day)
PENTASA DAY: 35
SYMPTOMS: No visible blood, no mucus, no urgency. Well-formed bowel motion.
MEDICATION: Asacol 800mg. Pentasa at night. Prednisone @ 5mg
BM/DAY: 2-4
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.
-----------------------------------------------------------------------------------------------------

Post Edited (curl3d) : 3/21/2019 12:53:49 PM (GMT-6)

Posted 3/21/2019 7:42 PM (GMT 0)
@Curl3D
"Or throw the colon in the Rubbish"
Lol.
Keep up the good attitude!
And thank you for keeping us updated with progress.

Post Edited (Yissurim) : 3/21/2019 1:45:33 PM (GMT-6)

Posted 3/21/2019 11:59 PM (GMT 0)
IPoop i anderstand what you wrote ,,,i am so sorry ..i am juste a mother desperate for answer and that love her son. i juste want him to be happy.. to be healthy sorry to bother you i will never bother you or anyone again take care...
Posted 3/24/2019 7:57 PM (GMT 0)
Just a quick update. No symptoms and have not seen blood at all for around 4 days now (not even the tiniest traces). Feeling well, still a bit more flatulence in the evenings than I would like to see. Going to experiment with different type of breakfasts to see if I can affect this. Still doing transplants but I'm now skipping days every now and then.

Lesson learned from this course of FMT's is that when you do your treatments, do them with a good amount of fluid. It has been better to do them well prepared with 200-300ml rather than to rush one and only do a 100ml transplant. What I'm saying is that rather than doing them every day and rushing them with small amounts on the days where your donor isn't able to give you good donations, it's better to do proper transplants with good amounts even if it means skipping days.
Posted 3/26/2019 5:51 PM (GMT 0)
Possibly a bit early to declare that the flare has ended but have not had any symptoms or traces for around a week and I'm out of prednisone since a few days so I think it would be fair to at least pause the counting of days.

The flare lasted around 2 months (73 days). I conducted around 36 transplants. I was on prednisone for about 46 days starting from 40mg and tapered down using 5mg steps. I will continue to administer FMT every second or third day for a while and keep using Pentasa until I see my GI in around a month.

--

Post Edited (curl3d) : 3/26/2019 12:02:15 PM (GMT-6)

Posted 3/29/2019 7:32 PM (GMT 0)
Just a shameless bump. No change in symptoms and feeling good. Feels good to be off prednisone, gonna enjoy it while it lasts.
Posted 3/30/2019 3:57 PM (GMT 0)
Curl3d,
So happy for you and thank you for your updates!!

best wishes!!
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