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Ulcerative Colitis
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TP177
Regular Member
Joined : Feb 2010
Posts : 137
Posted 5/19/2021 2:12 PM (GMT -6)
Hi everybody. I posted previously I was doing extraordinarily well on Xeljanz. Now in week number seven and do for my week eight evaluation.

I have been feeling so good I have returned to eating prepared food in restaurants and went to a great cookout on Friday. I think I’m re-flaring. We all know the symptoms. Urgency after eating, abdominal cramping. I’m oddly OK in the morning with a solid movement but it seems as the day goes on it gets worse. Usually it is the reverse!

Message into Dr. of course but curious if anyone here does a high-dose quick blast of steroids if you think you’re going into a flare. I’ve seen a few people post that like they will do 40 mg for two days 20 mg for two days. Like for a week. Any feedback is welcome and please please wish me luck I was completely human again

P
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16372
Posted 5/19/2021 7:29 PM (GMT -6)
A couple days of upset doesn't necessarily equal a flare. Could even be a stomach bug.
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TP177
Regular Member
Joined : Feb 2010
Posts : 137
Posted 5/19/2021 8:22 PM (GMT -6)
I certainly hope you’re right. Or that the Xeljanz is able to overcome it. But it’s pretty distinctive. Laying low for a while obviously. I just figured by week seven I should be able to branch out a little bit, I flew too close to the sun I believe.
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quincy
Elite Member
Joined : May 2003
Posts : 33246
Posted 5/20/2021 12:08 AM (GMT -6)
Could definitely be something you picked up or food your gut didnt like.

I would double the probiotics.
If you have fibre supplements, consider taking them.

If your symptoms increase , it would be good to have stool testing done.

Let us know what the doctor suggests.

q
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Stanley78
New Member
Joined : Sep 2020
Posts : 6
Posted 5/20/2021 7:54 AM (GMT -6)
Oh no, I can so identify with you TP - I'm literally following your foot steps.

I started Xeljaz 7 weeks ago, which brought my very stubborn flare under control, I was back to running, heading out the door with out toilet paper hidden in my pockets and enjoying normality. On Sunday, decided to go for chicken wings and ended up with suspected food poisoning. Violent diarreagh, high temp and awful nausea, which only has eased off today, dropped 3kg in 3 days.

Spoke to my consultant who said he hopes it will pass, but terrified this will land me back in flare up land.

Hope you are feeling better now !!
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TP177
Regular Member
Joined : Feb 2010
Posts : 137
Posted 5/20/2021 8:50 AM (GMT -6)
Doc prescribed Anusol suppositories for 10 days. Does not seem overly concerned but does not like the fact that I was this sensitive this far into treatment

He is one of those doctors that is not a proponent of probiotics. But I don’t see where it will hurt if I continue with the one I had been taking, renew life 50 billion. And I am doing a bunch of Kefir. He had asked me to stop all supplements when I started Xeljanz just to start on a level playing field

I’m dying to stock my gut with all things fermented which is supposed to be so good for you but I absolutely cannot handle even when I am in remission! Sauerkraut, etc. grrrrr

Yes scheduled for fecal Cal in a week or two after treating

Just need some positive reinforcement and prayers that this is a blip. I did not feel ill like food poisoning just all lower G.I., very typical of flare symptoms.

And I’m about to get on a flight next week to Massachusetts, unfortunately for a funeral. Nothing more exciting than traveling with UC! Get all that good energy going please!!!!

Everyone stay safe and well,
P
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1373
Posted 5/20/2021 2:35 PM (GMT -6)
Wishing you well. I would just go back to bland diet for awhile and cross both fingers and toes! As Ipoop often reminds us, healing does not always happen linearly but in up and down waves.
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 470
Posted 5/21/2021 7:03 AM (GMT -6)

FlowersGal said...
Wishing you well. I would just go back to bland diet for awhile and cross both fingers and toes! As Ipoop often reminds us, healing does not always happen linearly but in up and down waves.

I was just saying this to someone about my healing not being linear. I'm only one week into Xeljanz, and yesterday only had 2 bms, but already on 3 today with one loose, then one more formed.

Also last week I had a set-back when I got a bit too excited that I was starting to turn a corner and ate a tomato!

I've decided to be more cautious over introducing the foods that I haven't been able to eat for the past few months.

Someone close to me is recovering from concussion at the moment after a head injury (it'll take 3 to 6 months to heal) and it's the same non-linear healing. If they overdo it one day because they're in a rush to get back to normal they can have a set-back. 2 steps forwards 1 step back.
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quincy
Elite Member
Joined : May 2003
Posts : 33246
Posted 5/21/2021 11:26 AM (GMT -6)
TP177...how are you doing today?

q
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VanJordan
Regular Member
Joined : Dec 2019
Posts : 428
Posted 5/22/2021 9:17 AM (GMT -6)
Just because xeljanz makes the immune system back off and things feel less crazy, doesn't mean the mucosa is healed... so it can still be hurt by the wrong foods during the healing phase. When I used to take biologics, I would still baby my gut for at least a couple months before I started taking risks again.
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TP177
Regular Member
Joined : Feb 2010
Posts : 137
Posted 5/22/2021 11:55 AM (GMT -6)
Hi, doing better and actually,,,,,,,without the med. I couldn't pick it up for a couple of days and I was already better cutting back on the diet. I think what everyone is saying is right, non linear.....and watch the food. I've just been sooooooo good for sooooo long I wanted to EAT, haha. It's a frustrating ride, thank you for the support.

As an aside, is there anything that people really swear by for maintaining remission? Full disclaimer that we are all different, of course..... But I see a lot of people w the turmeric or curcumin which I was taking. Also interesting note: I was taking L-glutamine to help heal the gut at the suggestion of many, supposed to help rebuild tissue / healing. Doc said straight up - there is actually evidence that L-glutamine can induce a flare. (Head of GI at Univ of Chicago Research Hospital, Dr. David Rubin). He rules. Saved me.

( and I don't get notifications when people respond to my posts, only when I log on, so sorry if I ever "ignore" anyone)

Thanks for checking in, everyone stay well and pray for THE CURE
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quincy
Elite Member
Joined : May 2003
Posts : 33246
Posted 5/22/2021 12:14 PM (GMT -6)
You can or cannot use mesalamine oral and rectal?
q
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TP177
Regular Member
Joined : Feb 2010
Posts : 137
Posted 5/22/2021 3:43 PM (GMT -6)
I’ve been on mesalamine for the whole 16 years usually the prednisone would pull me out of a flare but this one was a goner. So I am off the Lialda. And full-time Xeljanz, not combined w any mesalamine product.

I tolerate all of them fine and I still have all the rear end stuff in reserve but I think he was worried with the rapid return of symptoms that a steroid approach was more effective.

Thanks for asking
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quincy
Elite Member
Joined : May 2003
Posts : 33246
Posted 5/22/2021 11:47 PM (GMT -6)
At least the mesalamine is still an option alone or in combo with the steroid if all is clear with the stool samples.

q
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