Other Meds/Things to Try? What Am I Missing?

Those of you who have seen my posts probably know that I've been struggling for awhile. My UC, while not severe, has not responded super well to medication. We've tried (in order):

Prednisone - partial response
Rowasa - painful GI side effects
Birth control - both combination and mini pills - both caused worse flares
Colazal - VERY significant increase in UC symptoms
Cortifoam - helped a lot, but no longer available
Remicade - initial improvement, but not remission, increased to every 4 weeks, hit remission for 3 months, lost remission (stress/tried incorporating dairy again), never regained remission
Tacrolimus suppositories - helped at first, then caused diarrhea
Entyvio - initial improvement, then got worse, increased to every 4 weeks, still having mucus, bleeding and some urgency/tenesmus/pain when going/loose stools
Collagen supplements - made things worse
Probiotics - increased bleeding and urgency (every time I try them, no matter which strain)
Uceris Foam - helping a lot

Currently on Entyvio (just had 8th infusion/6 months in) and have added Uceris foam last week which DOES seem to be helping.

I have tracked symptoms and diet closely over 2+ years and it looks like my flares were closely related to trying to incorporate dairy again (my GI now wants me to treat it more like an allergy - avoid completely) and major stress (sick relatives, etc.). Things do get worse each month for about a week right before/during my period.

Last scope (last year) showed 4-5cm inflammation, with a lot of healing done by Remicade (I had inflammation up the left side on diagnosis). We have been checking calprotectin which was over 300 three weeks ago (prompting the Uceris) and ESR has been hovering around 30 (it closely follows flares). I do have e nodosum but it finally seems to be clearing up.

What else should I be thinking about? I have:

Added a vitamin D supplement (two weeks ago)
Eliminated dairy completely
Tried eliminating gluten multiple times (doesn't help)
Added more fruits to my diet
Eliminated abrasive foods (granola, oats, whole nuts, etc.)
Reduced processed foods/additives/etc.
Eliminated carrageenan (causes bleeding overnight when I have it)

Is there anything else I'm missing? The plan is to see if we can do a course of Uceris and withdraw it and the Entyvio will continue to work properly; if that doesn't happen, we will look at off-label Stelara or Xeljanz next (though my GI doesn't like the safety profile for Xeljanz and uses it cautiously in younger patients). I am not yet ready for surgery according to both GI and surgeon - and I agree - symptoms aren't quite that bad yet but inflammation is clearly present.

Is there anything else I should try? Diet considerations? Etc.? THANKS!

Hi Fletch,
Wow, it sure seems like you've tried a lot of different things to get your stubborn flare under control!
As far as diet tips, everyone is so different. Your plan sounds pretty good, but for the fruits you added, I'm not sure it's a good idea during a flare, especially if they are acidic.
GF never helped me either, and I too avoid HFCS bc of the gas. I drink lactose free milk, and yogurt is fine. It actually constipates me if I have too much, and yogurt is low in lactose.
What about purified water vs. tap water,, maybe you can try that. Lots of rice to get you thru a flare too.
I hope I was of some help!

Thanks, @decaf4me and @the_swan!

Great suggestions. My GI offered me the option of adding azathioprine or 6mp when I was struggling on Remicade, and in retrospect, I wish we'd tried adding it. He has not suggested adding it with Entyvio, but we did say that we could try another anti-TNF since I had a decent response to Remicade, and add another immunomodulator. I think that's our "last shot before surgery" option.

I did think of the water thing and have switched from faucet to bottled recently - I know that seems like overkill to some, but I feel like our microbiomes are just so overly sensitive.

HFCS gives me gas as well. Life is less painful without it! The fruit I've added is banana and cooked blueberries - seems to sit really well, but I am cautious with them. Generally the only raw fruit I'll do are bananas or strawberries. Cooked potatoes. Tender lettuce seems to sit fine.

Post Edited (Fletch10) : 3/20/2019 1:26:40 PM (GMT-6)

I have done entyvio with azathioprine - only because i was already taking the aza beforehand, to which i had a partial response, and was afraid of armageddon if i stopped it before entyvio was working.

Diet is such an individual thing. I get diarrhoea from dairy - even lactose free - but have no problem with oats.

When my colitis is quiet then i don't get more symptoms around my period. When it's active then i will have more pain in the days around my period.

As you know I am on xeljanz, I have been responding more than any other drug, and my GI is in general pretty enthusiastic about it. Shingles is a concern but otherwise the immunosuppressive profile is comparable to biologics and imuran. Also it's unclear how much pulmonary embolism is a risk at higher doses (or whether it comes from the higher inflammation that people on these doses may have).