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Puzzled..."festering" symptoms

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Ulcerative Colitis
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Jeffyg
New Member
Joined : May 2019
Posts : 4
Posted 5/24/2019 6:01 AM (GMT -7)
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
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greenuc
Regular Member
Joined : Sep 2011
Posts : 266
Posted 5/24/2019 6:07 AM (GMT -7)
Have you had a scope? You can have NO symptoms, but still have endoscopic inflammation. That has been me for most of the past 7 years (until my recent flare). No symptoms unless I didn't follow diet or ate more than a little of fruit and fibrous raw vegetables. My biopsies during a colonoscopy would show active disease. If you are in a true endoscopic remission, you should be able to skip meds for a couple of days and have no problems but whenever I would forget a dose, I would have symptoms rise up within 8-12 hours.

Two schools of thought - treat to symptomatic remission or to endoscopic remission. My old doc only cared about symptoms, my new doc wants to treat to "deep" remission.
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Jeffyg
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Joined : May 2019
Posts : 4
Posted 5/24/2019 7:14 AM (GMT -7)
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?
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DBwithUC
Veteran Member
Joined : Missing Key Value : en-US, 577 2011
Posts : 4545
Posted 5/24/2019 7:29 AM (GMT -7)
I am of the school that for most food affects symptoms, but not the actual disease which is an autoimmune inflammation. I guess it depends on what the "disease" is defined as.

I think some have onset and relapse of the disease mostly driven by the distributions of gut microbes. Food does affect those.

Anyway, separating symptoms and disease can be useful. Disease related things should be treated with anti-inflammatory and other immune moderating things. Many symptoms like stool consistency and gas/bloating that seem to persist after blood and mucus is gone might be better viewed as IBS like or other non-IBD food sensitivities, or even acute stress responses. (only long term chronic stress has been linked to IBD/inflammation, while acute stress is linked to all sorts of physiological responses.)

You might make better sense of you case by separating inflammation and symptoms, as well as dividing symptoms into blood/mucus (very likely IBD symptoms) and other GI symptoms. I also agree that finding out if inflammation is gone during periods of clinical remission (i.e., histological remission) would be useful information.
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greenuc
Regular Member
Joined : Sep 2011
Posts : 266
Posted 5/24/2019 7:48 AM (GMT -7)
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)

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Jeffyg
New Member
Joined : May 2019
Posts : 4
Posted 5/24/2019 6:56 PM (GMT -7)
Thank you both for the great info! I was going to ask if there were tests other than scope to measure inflammation. Do you know if the FCP test is fairly accurate and also sensitive enough to pick up on potential lower levels of inflammation (in other words, could it miss something that shows up on a scope)? I haven't honestly tried too many treatments yet, mostly because I've been able to get rid of my symptoms. I stay between 3-4 Lialda daily...my Dr told me I could drop down to as few as 2, but I feel as though my stool quality suffers when I take less. I did take Uceris rectal foam during my last flare up and it was magic for me. Just one treatment and the next morning I was able to leave my house and start living again after not leaving home for a few months (I now mainly work from home, so I'm pretty fortunate there). Haven't tried mesalamine enemas.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8590
Posted 5/25/2019 5:48 AM (GMT -7)
"Haven't tried mesalamine enemas"

now would be the perfect time to give them a go -
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 5/25/2019 6:06 AM (GMT -7)
Generally find endoscopy is the most accurate with small areas of mild inflammation. You could try an fcp stool test it could show sonething.

Remission doesn't mean an end to all food-intolerances.

Hard to say if you still have lingering inflammation or not. Could just be IBS at this point. Nothing screams inflammation at least.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 913
Posted 5/25/2019 8:33 AM (GMT -7)
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.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 913
Posted 5/25/2019 8:39 AM (GMT -7)
Ps if you restrict your diet too much you could be missing out on certain nutrients and things that keep the poops moving nicely along the colon. You could try adding more soluble fibre first as insoluble is more difficult and introduce it slowly. Some legumes are easier to digest than others too but you have to experiment which ones work for you. I have to say I've been able to tolerate more fibre gradually as my inflammation has decreased. I seem to remember someone on here saying they only went back to having normal poops after they went back to a diet which included a full range of foodstuffs.
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Jeffyg
New Member
Joined : May 2019
Posts : 4
Posted 10/9/2019 6:44 PM (GMT -7)
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!
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jujub
Elite Member
Joined : Mar 2003
Posts : 10421
Posted 10/9/2019 7:51 PM (GMT -7)
This is an interesting discussion. I never considered my symptoms highly diet-related, although when they were at their worst there were a number of foods I eliminated or restricted severely (mostly high-fiber, gas-producing or highly seasoned foods. I've been in symptomatic remission since 2006 on Remicade, however have typically had a few or a single colonic ulcer on endoscopy. I reintroduced foods to my diet very slowly, with salads and highly spiced foods only in the past five years. The last food I included back in my diet was oatmeal; which I started eating only in 2017. I now tolerate all of the foods, and feel very fortunate. My GI has mentioned the possibility of starting to taper my Remicade, but that's a hard sell for me because I was so sick for 5 years before starting Remi.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 10/10/2019 8:02 AM (GMT -7)
You can have hemis with a normal Calprotectin.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1572
Posted 10/10/2019 9:36 AM (GMT -7)
jujub .. did your doc say why he wanted to taper you off remicade? What would his plan be for a replacement? It's worked so well for you for so long, I wouldn't want to rock that boat without a darned good reason
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geezernow
Regular Member
Joined : Nov 2017
Posts : 221
Posted 10/10/2019 11:01 AM (GMT -7)
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
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Rosiedays
Regular Member
Joined : Jul 2017
Posts : 313
Posted 10/11/2019 1:40 PM (GMT -7)
This is a very helpful thread. The wisdom fits with my research and it is comforting. Three big comfy take-homes for me: 1) hit flares hard even when symptoms don’t seem so bad (makes me relieved I chose to take steroids for the first time), 2) bowel movements aren’t perfect for normal people, my ragged edges don’t necessarily mean I’m still in active flair. (Probably it’s from all the oats and cooked veggies I’m eating on this IBD AID diet) 3) yay!!! You are not actively flaring, means you can enjoy your lifesmile

I would be interested in what you or your wife think of the u of mass IBD AID diet. You might be interested in trying just a TBS of different high fibre or prebiotic foods on the list and see if you can slowly tolerate them better.
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MarkWithIBD
Regular Member
Joined : Jun 2018
Posts : 442
Posted 10/11/2019 4:20 PM (GMT -7)
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.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 10/14/2019 10:42 AM (GMT -7)

Rosiedays said...
This is a very helpful thread. The wisdom fits with my research and it is comforting. Three big comfy take-homes for me: 1) hit flares hard even when symptoms don’t seem so bad (makes me relieved I chose to take steroids for the first time), 2) bowel movements aren’t perfect for normal people, my ragged edges don’t necessarily mean I’m still in active flair. (Probably it’s from all the oats and cooked veggies I’m eating on this IBD AID diet) 3) yay!!! You are not actively flaring, means you can enjoy your lifesmile

You got it. Well done, soon the student surpasses the teacher ;-)
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