Significant exacerbation?

Hello, everyone. I’m new here, but I’ve been lurking a while and am so grateful for all the info in the boards.

I was diagnosed with mild Ulcerative Proctitis 11 years ago. I managed with stress reduction and sometimes Florastor and mild flares would calm. Never took mesalamine suppositories because I managed without and the side effects list freaked me out (I’m laughing at my younger self now).

In December I’d say I had no flare at all. CRP tested for another reason was totally normal. But stress piled on, and by early Jan I was feeling a little loose in my daily 2-3 BMs. Started having leg / pelvic muscle pain, then two weeks later an appendectomy. They held me over overnight on IV antibiotics until there was OR time—lots of antibiotics. Like three bags of Flagyl and two others directly into my arm IV. The other thing is that they did an abdominal CT and incidentally noticed bilateral sacroiliitis.

Colitis symptoms came in earnest two weeks after surgery: bleeding, mucous, loose stools. Started on heavy probiotics and saw some improvement, but then worsening again two weeks later. I started mesalamine suppositories and after two doses jumped from 5-6 semi-formed stools to 10 watery diarrhea. Stopped for three days and tried again: after second dose, spiked a low-grade fever, aches, red eyes.

GI suspects mesalamine intolerance. But the diarrhea hasn’t gone away. Got in today (12 days into watery diarrhea) for a flex sigmoidoscopy, and inflammation has progressed to at least my full left colon.

Going to start Budesonide this weekend. GI wants to start Entyvio as soon as I’m approved through paperwork. My question is just, has anyone else had this sudden disease progression? I went into today thinking there was new inflammation from the mesalamine suppositories that would calm down. Since 5-ASAs are now apparently not an option for me, I’m just feeling some whiplash. It feels like such a rapid worsening. Is there anything else that could have happened?

On the other hand, my last scope was five years ago, and maybe the symptoms I’ve lived with since thence and normalized were signs of worsening disease. The SI inflammation (a new symptom in January) might also indicate disease worsening, eh? I’m just trying to wrap my head around it all.

Planning to start E. coli Nissile and curcumin once my bleeding is down a bit, too. Right now I just need to eat whatever I can—I’ve lost too much weight—but will try dietary interventions too. I had an easy 11-year run and now I need to come to terms with this.

Thanks for listening.

Thank you! They did check for CDiff and it was negative. Budenoside is oral. I’ll look into the hydrocortisone enemas! Thank you so much.

Oh, what an encouraging story about Entyvio working! Thank you for sharing it.

Oh, that’s fascinating about the SI issues and UC. I’m really hoping the meds help sort it all out. I’m also doing acupuncture for inflammation in general, so hopeful that will help as well.

I’m so sorry to hear about your intolerance too, Hmmisme. The funny thing is that I have a tiny bit of side-effect anxiety, which is the main reason I avoided salofalk for 11 years (I was diagnosed at 27). I thought, yikes, why would I want a drug that could make it worse? Given the chances, it feels really ironic that I’m among the intolerant/sensitive.

It’s also a bummer there’s not another first-line anti-inflammatory formulation after all this time. I’m reading up on the forums and just trying to hope in more treatment innovation coming soon (ideally ones that don’t suppress immunity in the body / that carry fewer side effects overall).

Here’s hoping, eh?

Diagnosed about a year ago. Put on a biologic. Never a problem since. Almost like I have nothing wrong with me. Six weeks ago, still perfect bloodwork and no “real” symptoms.


Bloodwork this week, off the charts. Colonoscopy Wednesday. I’m wishing you the best GrittyHope (I like that )

This is one crazy, insane disease. And soo complex. I had cancer that was 10x easier to understand than this stuff lol.

Good luck.

Seeker275 said...

Hmmisme said...
I can completely relate! It took a lot of courage to give Apriso a try (started it 3 days ago), and I am in the worst “flare” I’ve ever experienced. Quit taking them this morning and will wait for it to clear my system.
I’m still trying to grasp mesalamine not being an option. Considering I have very mild disease, I didn’t foresee myself having to step up to meds that may have even greater side effect, so soon.
I’m always searching for new research/clinical trials. Hoping new therapies are offered soon!

Since you only have mild disease, did you try to see if diet, natural remedies work in your case? There is plenty of info on this forum and others. Maybe try working with a functional medicine doctor. Or other alternatives that seem to offer sound protocols. You maybe more responsive to these for now? I keep reading of ‘first line’ meds but then also read of people skipping first line meds and finding better success with ‘second line’ and higher meds so perhaps these categories are more for disease side effects than disease severity???

Hello,

I have experimented with SCD diet, different probiotics, different supplements, and fasting. It seems like I can manage to keep symptoms minimal on the diet but It doesn’t kick the blood and loose stool. I would love to find a natural remedy that works but at this point I’m feeling overwhelmed with what to even try next. I’d like to explore LDN or fecal transplant once I’m feeling better

I’m on day four, Hmmisme, and already getting some relief. Hope the same for you, and please keep me posted!