Puzzled..."festering" symptoms

Hello, my name's Jeff; first time poster here looking for some help/suggestions. I'll give some background/history. I was diagnosed with UC around Christmas 2017. First flare came on pretty slowly over weeks with significant bleeding & watery stools. This was during a stressful time of leaving a job, having a new baby, and moving to a new state. I was found to have h.pylori and treated with a plethora of antibiotics, which then lead to more antibiotics and c.diff. All in all first flare lasted about 6 months and was pretty bad; although I avoided hospitalization. I came out of this one very slowly with just Lialda and diet TLC. Next flare was pretty mild while on xtwo 1.2g Lialda daily while traveling for a work trip and not really being careful about lifestyle or diet. (Lesson learned). My 3rd flare was almost a year ago now and was mild-moderate and also came when transitioning jobs and traveling for training, it lasted a good chunk of early summer. Stress seems to be a big trigger for me. My last flare ended abruptly with Uceris rectal foam which worked wonders for me after just a single dose. Since then, I have made significant improvements and modifications to diet, seen a dietitian and took an MRT food intolerances test, and am now on 3-4 1.2G Lialda daily (at my discretion per Doc). This leads me to my current state...so I have not been in a clinically diagnosable flare up for nearly a year now, however what I eat definitely affects the quality of my stools. I am pretty regular with 1-2 stools per day. Morning is generally solid with softer/ragged finish and afternoon is generally ideal/solid. Every few weeks I might have what I would call a solid stool marbled with white mucous (not slimey, but more like solid and built into the stool), these seem to be a one-and-done thing when they happen. I don't however seem to be able to handle fiber at all. A year out of a flare up and I can still only tolerate steamed veggies and minimal raw fruit. If I have something like granola, or some veggies, or anything with some significant fiber, I tend to have extremely ragged stools (not watery, just piecey). I also follow a dairy free, gluten free diet, very minimal red meat, lowish fiber, no spices/hot peppers, minimal marinades/sauces, and I avoid any foods that came back high on my MRT test like sweet potatoes, corn, and scallops. My question is; is this as good as it gets? Do I have some kind of low lever festering i.e., am I not truly 100% out of a flare up? Dr says I am out of the weeds but recommends bulking up stools with more fiber, which does not seem to agree with me. Also, not sure if it helps, but diagnosis was mild/moderate proctosigmoiditis and I never had any pain that most people describe, just very bloody stools & mucous. Thanks for any feedback!! Best, Jeff

Hi Green, this is a very good point. I have had a colonoscopy and sigmoidoscopy, but both during active flare ups (1st & 3rd). I have not had one during remission. As you mentioned, I believe my current doc is all about symptom management. He actually "does not believe what you eat affects this disease" (I could go on a whole tangent just about this since my wife is a dietitian with a master's in wholistic health). I was on the hunt for a new GI doc a few months back, but then got sidetracked. My current doc has been successful at least getting me back to work and daily routines quickly. The other unfortunate thing, is my current insurance is pretty bad for this procedure, so I've been whacked with $1500 and $1000 bills respectively for the procedures, so I guess I may just need to bite the bullet at some point? If showing active disease without symptoms and I'm already on full dose of mesalamine ASA's what is typically the next treatment step?

Jeff...I understand about colonoscopy costs, I just got hit with a big bill myself. (Edit: but you can always do FCP tests in between colonoscopies...that is what my doc does)

According to my doc (who specializes in IBD only), some of the latest research shows that treating to "deep remission" provides better long term outcomes in terms of surgery, reduced risk of serious flares, etc. I am currently on 4.8g of Lialda per day. I tried 6 weeks of Rowasa, didn't help. She also had me try two months of Uceris, didn't help. I am seeing her next week but she is likely to push Entyvio next based on our past conversations.

Have you tried oral Uceris and/or Mesalamine enemas? My doc had me try both of those before considering further escalation.

Post Edited (greenuc) : 5/24/2019 8:52:37 AM (GMT-6)

"Haven't tried mesalamine enemas"

now would be the perfect time to give them a go -

It varies from person to person; for me FCP is very accurate in tracking if I have inflammation and how much (i have a detailed record following my last flare into remission with scopes at both ends, we did an fcp every 2-4 weeks and it correlated almost exactly with my symptoms). The limitation of fcp is that it doesn't tell you where the inflammation is - it's most sensitive to inflammation in the rectum and last part of the colon because if the inflammation is higher up the calprotectin can already break down before it's pooped out. So my sister has crohn's in the transverse colon and her calprotectin is always lower than mine but her CRP is much higher. Sometimes you can get false positives with fcp too if you've been taking certain medications especially ibuprofen. Anyway the point being that having a look inside with a camera will always give a more accurate picture than an inflammation marker like fcp but obviously fcp is much cheaper and less hassle (and safer) to perform.

Hi guys, you have all been very helpful! It has been a while, but I was finally able to get a non-emergent appointment with my GI Doc (after a 3 month wait). I did a fecal calprotectin test and it came back surprisingly good, less than 15.6... (15.625-50Mcg/g = normal, 50-120 = borderline, 120+ = abnormal). This is great news and would indicate that I am in remission, but on to my next mystery (why can't this be easy). I had not had any blood in about a year since my last flare. Ironically, in the week after my Dr appt while waiting to do the Calprotectin Test, I had some blood. I suspected possibly from hemorrhoids caused from some minor dehydration. I did not have blood in my very next stool, so I waited one more day with no blood and then took the fecal test. I had no further blood until two days ago, I had some minor bleeding again at end of stool and upon wiping (still suspecting hemorrhoids as I was confirmed to have them previously and currently no other symptoms). What I'm wondering is can you have bleeding from hemorrhoids and the Calprotectin still be accurate and specifically measure actual mucosal inflammation? ***On a final note, as this may be helpful for others...the previously noted "marbled like mucous" I had been noticing, upon further investigation appears to be my Mesalamine streaking my stools as it's not 100% broken down. I came to this conclusion after seeing 1/2 pill sticking out!

You can have hemis with a normal Calprotectin.

juju!! TAPER you off of Remicade??!!! Man, if it ain't broke...don't fix it!!! WHY would he want to taper you off of Remicade if you're doing well on it? Why would he even want you to stop at all?? I was doing GREAT on Remicade for so many years. Since I had to switch to other biologics, due to antibodies to Remicade, I've had nothing but flares, infections, and just problems! Best of luck to you

I would not taper off remicade if it's working. Once the antibodies form you won't be able to take it again and then you have one less drug in your arsenal. Ask to stay on it indefinitely if you can.