Long time no post - flare or not?

Hi all,
It's been a long time since I've posted here. I was diagnosed with UC in January 2009 after the birth of my first child in October 2008. Got into remission, had a second child in March 2013, and a minor flare in 2014. I've been in remission since, taking Apriso 4x/daily.

about 3 weeks ago, I had horrible right-side pain and ended up going to the ER because it wasn't letting up. I left after sitting and waiting for over 3 hours, because the pain had eased and my son had a band concert that night.

The next day, I started having diarrhea that has very slowly gotten worse. Right side discomfort comes and goes and I don't have much of an appetite. I saw my gastro on 12/14, and she ordered stool tests. Everything came back normal - nothing infectious, no WBCs, and my fecal calprotectin was 32ug/g (anything from 16-50 is normal, 50-120 is borderline/re-evaluate in a few weeks, and over 120 is abnormal).

I have a c-scope scheduled for January 12, but I'm very unsure if this could even be a UC flare at this point. It seems highly unlikely that I have any active inflammation in my colon given the results of the stool testing. Journal articles indicate that fecal calprotectin levels as low as mine was indicate "deep remission."

Anyway, just curious if any of you have actually been in a flare and had stool testing results similar to mine.

Calprotectin is a brilliant diagnostic for SOME people - particularly those for whom the inflammation is concentrated (or most severe) in the rectum. It is less sensitive to inflammation higher up because the further it travels from the point at which it is produced, the more time there is for it to break down. So for me I can very accurately measure my inflammation using calprotectin, because I have "classic" UC with the inflammation starting and most severe in the rectum. But for my sister who has crohns in the terminal ileum, her calprotectin regularly comes back normal even when she is flaring. Another problem with the measurements is that they fluctuate a lot during the day, and are usually highest first thing in the morning as there has been more time to accumulate it in the rectum. I always take the sample from my first poop of the day. Previously I would just take "any" sample and my numbers were a bit all over the place. Since I started being consistent with the measurements, they've become better correlated with my symptoms and the inflammation (confirmed with scopes).
Fruitgirl nice to meet you, sorry you are having pain. When they do your scope will they go up into the terminal ileum? My sister's crohns was missed for years because they couldn't get the scope through the sphincter at the end of the colon (which ought to have been a sign that something was wrong) but her colon was free of inflammmation, so they kept telling her she had IBS 🙄. Not saying you have crohns, just saying it's good if they can go all the way!

My blood work and stool samples usually come back in the normal range--even when I am flaring. My AST and ALT might be a little high occasionally but nothing indicates a flare--even when I was at my worse. My CRP usually runs at 10 or 12...even before IBD. My GI thought I was overly dramatic until he went in and did the scope. Then it was "I've never had a patient this severe. Your colon is shot. " And yet my blood work was coming back normal. And now that I am in "remission" my labs are coming back slightly higher.

So for me.... He has to listen to what I am saying and go in and look himself.

When I have pain it's usually inflammation causing a little bit of an obstruction. (I have scar tissue and narrowing,) I take Milk of Magnesia for a few days and that helps. Even when my output is thinner, if there's pain, I take MOM, it thins it down, I take it for about a week and slowly taper off of it.... I also revert back to the SCD diet. It doesn't help some but it seems to help me.

I hope you feel better soon.

Please come back and let us know how your scope goes.

Clo

I've never had nor would accept it as a flare status diagnostic. I agree with others to have other things in the abdomen area checked... as well as a c-scope if it's been a while. However, I'm curious if you did happen to go through any change in stool consistency, constipation, etc?

Nice to see you, and happy you've been doing so well UC-wise!

q

I’m glad you’re investigating and learn so much from these conversations. Just wanted to note that I learned last winter that the appendix doesn’t always manifest as a sudden crisis but can “grumble” on and off for a while. I was feeling off last January and happened to be scheduled for a pelvic ultrasound: they thought one of my Fallopian tubes was inflamed. Kept feeling off for weeks with unusual pains in my torso, was told it was anxiety, went trough several emerg visits and was told by the doctor that it was likely “lady issues” until they did another ultrasound and discovered that the inflamed organ was my appendix. The worst phase of my pain was across the whole abdomen, although it did eventually become acutely localized in the lower right quadrant. Given my UC history, the residents ordered an abdominal CT to confirm it wasn’t undiagnosed Crohns or something—it wasn’t.

It’s likely not your appendix! But as you seek care, I learned you do need to advocate for a thorough check of all the possibilities. (Gallbladder etc too I’d imagine?)

Take care and keep us posted.

Glad you updated us, Fruitgirl. I was thinking about your situation over the holiday weekend and hoping you wouldn't hit any more snags prior to c-scope. It does sound like you're on a better track relating to auto-immune issues, rather than calprotectin levels. *** Thus far I managed to avoid COVID-19, but I did have strange lower torso pain following my 2nd & 3rd vaccine injections. The 2nd injection affected my coccyx region on both sides ca. 6 hours afterward, and the 3rd triggered sacrum stiffness plus ache on the 5th day afterward. I was more alarmed by the sacrum involvement because that area gave me a lot of sustained trouble during my 1st UC flare (a severe one) that led to DX in 1980! Luckily the 2nd injection side effects abated within a few hours, and the sacrum involvement responded quickly to a couple applications of 30% salicylate lotion over lumbar area, while my colon stayed in remission through all 4 COVID shots given to-date. The 1st injection had primed me to expect most anything in the way of side effects because it gave me flashing hot spots at several successive points in torso within 10 minutes, but I was in observation at my gastro's medical center and the resident MD there quickly advised on mitigation. SO-- I could imagine that an actual COVID infection, however mild, might stir up UC. *** Hopefully you're on the path to resolution of the recent nasties now. Please keep us posted. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Scope today showed no active inflammation - the doc did note that "..the mucosa vascular pattern in the sigmoid colon was diffusely decreased." He also told me that he didn't think the diarrhea I was experiencing was due to my ulcerative colitis. And the finding in the sigmoid definitely doesn't explain the pain I had on my right side. I still have occasional discomfort. I have an appointment with my OBGYN on Tuesday - we'll see if she has any ideas.

Good news re c-scope! Looking forward to the outcome of your gyne on Tuesday.
How are your symptoms at this point?

q

I was off of pred two days before the scope. The GI that did it seemed to think there still would have been at least a bit of inflammation since it was a pretty short course. And the diarrhea was totally gone within a a couple of days after staring pred. Yesterday was pretty OK poop-wise. Today was OK until I accidentally got ahold of some food with MSG; it always gives me D. We'll see how tomorrow is.

I ended up calling my OBGYN to let them know what was going on. We decided to reschedule my annual appointment until the 24th so that they can do an abdominal u/s at the same time. I was hoping they could do it on the 17th but they couldn't make the schedule work.

Biopsy results are back: I have lymphocytic colitis (a form of microscopic colitis) now, too. I mean.... How lucky can I be?!?

Yep, one can have both although it is quite rare from what I’ve read so far. I don’t doubt the UC diagnosis given how bad my colon looked when I was diagnosed.

The most common treatment seems to be entocort - long-term use, even. We’ll see. I have a gastro appt on Wednesday.

Hopefully you can work it out, Fruitgirl. A very active, sharp senior neighbor of mine got DXed with microscopic decades ago, but it rarely bothers her. She does continue to see a top IBD gastro for periodic scoping. She's about 83 now, and has plenty of energy to keep up with grown kids + grandchildren. Has a petite build and stays slim, always looks alert and well-groomed. Probably most people would think she's 10 yrs younger than her true age. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

The did biopsies in three places and it was found in all three areas. Yes, still on Apriso.

I think this (and the dry eye disease I was diagnosed with a couple of months ago) is due to Lexapro. I started taking it in June due to work-related anxiety. There is a very strong link between SSRIs and dry eye, less so with lymphocytic colitis.

So now I need to see my PCP and discuss how to get off of Lexapro. I'm only on 5mg so hopefully it won't be too hard. I'm definitely not going to try another SSRI and I'm really hesitant to try another medication class due to the common side effects.