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Ulcerative Colitis
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Posted 1/7/2023 7:29 AM (GMT -8)
Hi All,
I read and browse the forum often, but haven’t posted for a long time. I’ve had UC for 5 years (diagnosed in 2017 I think? I’ve lost track!) I was stable on weekly Humira injections for many years and had to stop it due to side effects. I’ve been flaring since September. I am on Entyvio and oral steroids (Budesonide) now. I’ve only been through the loading doses of Entyvio and am scheduled for my first regular infusion in early Feb.
The diarrhea is getting worse. I had COVID at Thanksgiving and again at Christmas. With each bout of COVID I had diarrhea. It’s hard for me to tell if the diarrhea now is due to lingering COVID or a continuing colitis flare.
My GI told me to contact him at the end of January and let him know how I’m doing. He said if there’s not improvement we would increase Entyvio to every 6 weeks. I spoke to my PCP yesterday and she suggested a probiotic. I know the good probiotics are $50-75– so I’m a bit hesitant to spend that unless it will really help. Is it wise to add a probiotic at this time? Or will that just complicate things more?
And should I reach out to my GI now? Or wait until end of month? I’m having diarrhea 5-7 times a day. It’s not critical, but I’m certainly sick of living this way. I’m not sure if there’s anything else that can be done?
Thank you in advance for any help!
Posted 1/7/2023 8:35 AM (GMT -8)
Some people do well with probiotics & some of us don't. All you can do is give it a try, perhaps some of the others will come along & chime in on some reasonably priced ones.

I would contact my gi on Monday & ask for stool tests to make sure you don't have something else going on. Having the virus once can be bad enough, but it sounds like you had a rebound case too.

Take care.
Posted 1/7/2023 11:13 AM (GMT -8)
Thanks for your perspective! The more I think about it, I think I’m willing to hand over some money for probiotics— I know there’s data on them. My other concern is that my GI typically advises only trying one thing at a time. So I’m a bit nervous to go down this probiotic route while I’m also waiting for Entyvio to kick in and also recovering from 2 rounds of COVID. I will likely reach out to my GI this week.
Posted 1/7/2023 3:04 PM (GMT -8)
RE your gastro advising to try only 1 new thing at a time, I agree that a cautious approach is best. Traditionally some physicians would take the attitude of "throwing everything but the kitchen sink" at a health problem that doesn't respond quickly to basic treatment. I tend to be chemically sensitive and get overreactions to medical interventions that agree with the majority of people, and I believe that's true of many IBDers. Multiple meds and/or supplements started together can complicate our issues that need careful monitoring. *** RE assessing reason for continuing D in case of UC flare + virus attack, in my experience a virus will generally cause watery D, whereas the UC flare is more likely to induce D with mixed mucus and/or blood plus urgency. *** Good luck with your upcoming gastro consult and further treatment. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Post Edited (Old Hat) : 1/7/2023 3:07:48 PM (GMT-8)

Posted 1/8/2023 3:19 AM (GMT -8)
Thank you, OldHat! It feels like a flare. There’s urgency and pain. Having COVID twice this winter definitely wasn’t fun and I’m wondering if it threw my body off track and made the flare worse. It’s been a difficult few months health wise and I’m ready to feel better and get back on track. Reading these comments has made me realize that I should email my GI tomorrow.
Thanks again.
Posted 1/8/2023 5:02 AM (GMT -8)
I had a 14 day regimen of antibiotics for another condition in October. That’s when I began using probiotics. I’ve continued the probiotics.

With stomach cramps gradually getting worse since, I’m stopping the antibiotics to see if that helps.

Take care.
Posted 1/8/2023 10:16 AM (GMT -8)
I suggest requesting mesalamine enemas...nightly till whenever.
Probiotics...take them at night before bedtime.

I'm actually dismayed at the fact your doc is basically wasting time till the end of January for basic treatment.

q
Posted 1/9/2023 7:10 AM (GMT -8)
I'm so sorry you're going through this. My understanding is that COVID can trigger flares in most autoimmune diseases, in part because it messes with immune systems and in part because of its inflammatory effects.

I'm also usually keen to do one intervention at a time, but my sense of my own healing with an awful flare that started last winter is that if these are interventions I'm willing to keep going with, I don't mind stacking them together. Since Entyvio is a slow-acting drug that can take months to kick in, it probably makes sense to add on other things that have good evidence and may be helpful.

I do find probiotics helpful, and mine cost $45 a month. I also take high-quality curcumin derived from turmeric (not just plain turmeric), which has some good evidence. I started the probiotics before the Entyvio, and was on Entyvio and budesonide, then added the curcumin and omega 3. I plan to stay on all of them, as I hope they're working synergistically.

But re: the diarrhea, I'd also ask my doctor sooner rather than later to investigate its cause with a full stool work-up, just to be sure there's not something else going on.

The other piece that helps me (and is so hard) is to try to rest and cut out any stress I possibly can. I know this is easier said than done. All the best to you.
Posted 1/9/2023 9:03 AM (GMT -8)
probiotics would be my choice - start slow -


TT
Posted 1/9/2023 10:57 AM (GMT -8)
Probiotics were a waste of money for me. I would never wait a month to email my GI if I wasn't improving. That's too long to suffer for me. Glad your symptoms don't sound too dire though.
Posted 1/10/2023 2:56 AM (GMT -8)
Thank you all for your responses and support.
To clarify, when I last saw my GI, I was experiencing symptoms but doing a bit better than this, so we made a plan to check in at end of January — my original message was likely confusing. Things have gone downhill for me since COVID in December. Sometimes I have a hard time advocating for myself, but reading these comments encouraged me to reach out to my doctor yesterday.
I also purchased VSL 3 online and it should arrive later this week. I have had success with Curcumin and Boswellia in the past so I have a few other things to think about.
And yes, there is stress right now….
Thanks again!
Posted 1/10/2023 7:59 AM (GMT -8)
Good you called your doc...what's the result of that discussion?
q
Posted 1/10/2023 9:41 AM (GMT -8)
Glad you reached out to your doctor. And good luck with the VSL3. I think that is one that actually has research backing it. It was too expensive for me to want to try it though.
Posted 1/29/2023 3:41 AM (GMT -8)
Hi Everyone,
Thank you for your suggestion and words of support! My apologies that it took me a long time to get back to this thread. My GI was dealing with a family emergency when I initially reached out, so it took me a bit longer than I would have liked to sort. Once he was back in the office, we did speak and talk through the options.
The end result is that we’re increasing the Entyvio to every 6 weeks (assuming insurance approves that — still waiting for that approval). I have an infusion this Thursday and I’m really hoping for some relief. My GI did give me the option of switching meds, but I decided I wanted to see what an increase of Entyvio would do.
I’ve also added back Boswellia— this is a supplement that has worked well for me in the past. After talking with my GI, I’m skipping the probiotic for now. I’m keeping my diet very simple and just doing the best I can. Honestly it’s been rough, it’s getting to be a drag to be in a flare for this long. Thanks again for listening!
Posted 1/29/2023 11:30 AM (GMT -8)
Hope the increase of infusions will show improvement soon.
Keep us updated,
q
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