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Low inflammation, continued symptoms.... ideas?

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Ulcerative Colitis
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OneDayAtATime99
Regular Member
Joined : Dec 2012
Posts : 34
Posted 9/22/2019 11:30 AM (GMT -7)
Hello! I have had five rounds of Humira (as an injection), and my inflammation markers have decreased from 11 to less than 1 (eight-tenths). So I would expect for my symptoms to be much better than they are right now. I do have less frequency than at the beginning of this flare - I go like 4 times a day now as opposed to 7 or 8 - but they are all still super urgent and super loose. (The urgency is still bad enough that I only go to work and home; I don't want to risk being in an unfamiliar space and not being able to get to the restroom soon enough.)

Should I just chalk this up to the fact that my gut needs time to heal even if my inflammation is down? Or should I assume that this is the best I'll get on Humira, and start considering changing biologics, or experimenting with fiber supplements and other non-medical approaches?*

*When I was younger I spent YEARS trying all kinds of alternative therapies (nutritional supplements, acupuncture, chiropractor, raw food diet, veganism etc) and none provided long-term improvement. So I'm pretty skeptical, but I would be OK trying one new thing at a time while staying on Humira.

THANK YOU for any input y'all have?

________
Diagnosed with UC in 2002
Predinisone always worked for my flares, but it stopped working in 2019
Flaring since June 2019. Currently not bleeding, just diarrhea 4x a day.
Currently on:
Humira injections (I've had five injections so far)
Probiotics
Zoloft
Iron infusions as needed until my hemoglobin count gets back up
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chocotofu
Regular Member
Joined : Aug 2019
Posts : 35
Posted 9/22/2019 12:29 PM (GMT -7)
What are you eating?
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imagardener2
Veteran Member
Joined : Jan 2010
Posts : 5896
Posted 9/22/2019 1:03 PM (GMT -7)
It could be IBS and that can take some time to determine what foods/drinks are causing it.
My one suggestion would be to eliminate fiber foods and see if symptoms cool down.
Eat your normal diet with fiber removed and no other changes for a week.

If that's not it then start a food diary and note what you ate on one side of the paper and bad symptoms on the other side. Most of the time (for me) it was not at all in the same time frame, it took overnight for example in many cases and the next morning was bad from something the day before.

Yes this is a very difficult and tedious thing to do but I got my life back after figuring out what my gut didn't like. And even better was after removing many foods and getting way less symptoms after a while many of those foods are now tolerated.

In my opinion my gut needed time to heal and now it is almost back to pre-UC condition.
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OneDayAtATime99
Regular Member
Joined : Dec 2012
Posts : 34
Posted 9/22/2019 1:26 PM (GMT -7)
I'm intrigued by the advice to avoid fiber foods. I don't know a whole lot about fiber, admittedly, since whenever I avoided/added fiber in the past, it never seemed to make a difference, so I just didn't think about it. My first thought would be that since I'm having diarrhea, I should add fiber. But it's the opposite?
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OneDayAtATime99
Regular Member
Joined : Dec 2012
Posts : 34
Posted 9/22/2019 1:29 PM (GMT -7)
And chocotofu, to answer your question:
I'm eating the same diet that I had this time last year when I felt 100% well with no symptoms whatsoever. Basically a moderate diet, no fast food, but I eat pretty much everything in moderation. I've had terrible experience with diets in the past in which my symptoms were worsened, so I've got a pyschological hurdle to overcome when it comes to eliminating foods completely. But I see from your signature that you have luck with pescatarian plant-based diet (plus white rice). Something moderate like eliminating breads and making sure I eat more plants would be easy enough, as long as the plants are well cooked. Bad luck with raw plants.
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4545
Posted 9/22/2019 1:45 PM (GMT -7)
Low fiber is only to get low residue, which is to get less poop. It is symptom management, not IBD management.

Humira could prove more effective over next couple of months. But, some people continue with GI distress (IBS like) symptoms even after all inflammation is gone.

Some healing of the mucosa does go on after inflammation ends, but I would think when it ends - not just reduces. It should also go quick, because we replenish our mucosa fairly quick
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OneDayAtATime99
Regular Member
Joined : Dec 2012
Posts : 34
Posted 9/22/2019 2:52 PM (GMT -7)
DBwithUC -
Ah, thank you for these important clarifications!
May I ask: how "quick" is "fairly quick" mucusa replacement? Like days/weeks/months? Anything less than a year at this point I consider quick, LOL!
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16177
Posted 9/23/2019 6:23 AM (GMT -7)
>Or should I assume that this is the best I'll get on Humira?
Healing can take a very long time, 6-months or a year to fully heal from a flare is not unheard of.

Are you on mesalamine enemas or steroid enemas? If not you should be. Your inflammation is down, low within your rectum if you are having extreme urgency. Seldom that humira alone is our 100% solution, but the cumulative effect of multiple meds with combination-therapy is often enough to do so.
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4545
Posted 9/23/2019 10:04 AM (GMT -7)

OneDayAtATime99 said...
DBwithUC -
Ah, thank you for these important clarifications!
May I ask: how "quick" is "fairly quick" mucusa replacement? Like days/weeks/months? Anything less than a year at this point I consider quick, LOL!

https://news.harvard.edu/gazette/story/2017/07/understanding-how-the-intestine-replaces-and-repairs-itself/ said...
The intestine is the most highly regenerative organ in the human body, regenerating its lining, called the epithelium, every five to seven days.

But this is only the lining. In the colon there is also concern for the cells under the lining. It is less clear how fast crypt cells regenerate. Muscle tissue may also have permanent scaring.

Hopefully once inflammation is gone, the normally quick regeneration of the colon would kick in.
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Krissy P
Regular Member
Joined : Feb 2018
Posts : 22
Posted 9/23/2019 1:51 PM (GMT -7)
Although you have low inflammation, you might want to consider avoiding inflammatory foods for a while to give your gut a better chance to heal. I am currently in a mild flare that doesn't go away and it's because (most likely) I keep sneaking things back in here and there (gluten, dairy). I bleed the next day when I have the no-no foods. I have to remind myself it's only temporary until my body heals!
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