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Posted 3/29/2023 4:59 PM (GMT 0)
Hey guys,

Had scope 03.21.23. GI is out of town for 2 weeks. Results posted to my portal say:

Cecum, biopsy:
Colonic Mucosa with Moderate Chronic Colitis with focal minimal activity (see comment) No granuloma, dysplasia, or carcinoma identified.

Ascending Colon biopsy:
Colonic mucosa with mild inactive colitis (see comment) No granuloma, dysplasia, or carcinoma identified.

Rectum biopsy:
Colonic mucosa with moderate to severe chronic inflammation consistent with proctitis. (See comment) no granuloma, dysplasia or carcinoma identified.

Comment: Microscopic examination of the rectum, ascending colon, cecum shows chronic inflammation in the form of plasmacytosis, lymphocytic infiltration, and focal loss of cryptic architecture. There is also active inflammation in the rectum of neutrophilic infiltration. No granuloma, dysplasia or carcinoma identified.

GI said everything looked good.. but reading up on this it doesn't look good. It looks like the warning before a storm. What do you think this all means? Should I be worried?

Clo

P. S. The GI said right after the scope that visually everything looked good. He hasn't read the report yet because he is out of office for 2 weeks.

My concern is plasmacytosis. When I try to read up on it Google is taking me to blood cancer.

Post Edited (clo2014) : 3/29/2023 4:19:31 PM (GMT-8)

Posted 3/29/2023 7:08 PM (GMT 0)
Oh I hope iPoop sees this, he is great at interpreting these things.
Posted 3/30/2023 2:08 AM (GMT 0)
plasmacytosis in this situation means plasma cells were found between the base of the crypts and the muscle layers in the biopsy. Plasma cells are a type of white blood cell (lymphocyte). This is a common finding in IBD and does not indicate cancer.

Overall, if the doc said the scope looked good, that means you are in endoscopic remission, but these results show that you continue to have histologic/microscopic inflammation, with it being mostly inactive on the right side and quite active in the rectum. So you are not in "deep remission,' which is when the scope looks good AND the biopsies look good.
Posted 3/30/2023 10:51 AM (GMT 0)
Sounds like you still have inflammation -- pretty bad in the rectum. I know you have a complicated med history, but maybe a different med would be better for you. Have you ever used Stelera?
Posted 3/30/2023 3:28 PM (GMT 0)
Yeah, sounds like you're flaring. Sorry to hear. That's odd the GI said everything looked good. Do you have symptoms?

I Googled plasmacytosis quickly and don't know either. Is there a GI filling in for him who might be able to alleviate your concerns? Two weeks is quite a while to wait.
Posted 3/30/2023 11:03 PM (GMT 0)
I wouldn't panic at all over these results at all, especially if your symptoms aren't bad and the visual colonoscopy was normal. Overall, as an executive summary, you have microscopic signs of inflammation found throughout your large intestine. It's most pronounced within your rectum, and the report specifically calls out Proctitis for rectal inflammation there.

When your doctor gets back I'd discuss these results and ask if any doses need to be adjusted or additional meds added to treat it. Something like this can be treated before flare symptoms come on with gusto. I'd look at this as an early warning sign that adjustments to your treatment are needed now.

The findings are all normal things for an IBD patient. I'd agree with @Beave regarding the plasmacytosis as it's a common enough finding with IBD patients in what I could find online and is a sign of inflammation. Also common is lymphocytic infiltration and neutrophilic infiltration both signs of Inflammation.

The focal loss of cryptic architecture gives no symptoms, it's just a fingerprint or identifier that you're an IBD patient.
Posted 4/1/2023 2:32 AM (GMT 0)
Thanks for your responses! I've been fretting. I forwarded the results to my PCP and Colorectal Surgeon but neither have gotten back with me. I'm so disappointed 😞. I wanted some kind of answers so I wouldn't worry and throw myself into a full blown flare.

I have been telling my GI about all the extra intestinal symptoms I've been having, and the feeling if things getting "sorta hung up" in there, slow processing time and some pain plus I've been eating a lot of carbs. He kept trying to tell me I had IBS. It seems important to him to be able to say that I am in remission. I have started wondering if doctors hedge their numbers to look like they have a higher success rate with more patients in "remission" when they have to report to their hospital board. Just a thought.

I also started looking at the scopes I've had and I had one in 2016, then colon surgery in 2016, in 2019, then colon surgery in 2019, then colon surgery again in 2021 and now the scope in 2023. My Colorectal has done two? sigmoid scopes into the Hartman's pouch from 2019 to 2023. Well--those are the ones I have paperwork for. I'm going to dig alittle further. Are those really enough? My other reports sounded much better....so this one totally bothered me. I wonder if you heal and the scopes/reports get better? And how long that takes? And how often your GI should do repeat scopes if you are struggling with few symptoms in regards to the gut? I have that colostomy and my colon doesn't work like it used to. Now it's output all the time in a bite by bite sort of way. (Sorry...I know TMI.... just trying to explain....) My CRS said to graze 6 times a day... No big meals... So there's a little output here then there then there ... Not all at one time or twice a day or even 3 times a day. It's sorta hard to tell I'm in a flare when I'm not having diarrhea... Or going a bunch several times a day.

My Remicade level last year was at 3.78? and it needs to be at least 10 to 13 before I really feel better... And it just got above 13 this month. So I am unsure if I should stay on Remicade and see what happens or try to move before I go into a flare.

My Colorectal surgeon told me that if I had 1 more thing go wrong he's doing an ileostomy. He's taking the rest of it out. I'm sorta scared of that with all the issues I have.... Plus I'm not a big drinker.

Sorry for rambling. I am just so freaking out..... I hate waiting.

Clo

Post Edited (clo2014) : 3/31/2023 6:36:49 PM (GMT-8)

Posted 4/1/2023 12:03 PM (GMT 0)
I'd say your mild symptoms are likely related to this microscopic inflammation. If this is new, and other scopes are fine, maybe an 8 week course of budesonide is enough to tame it.
Posted 4/3/2023 4:19 PM (GMT 0)
I hope you get some answers soon.
Posted 4/4/2023 3:28 AM (GMT 0)
It official. Doctors drive me up the wall and around the bend.

My PCP.... He called in a bunch of labs to have done--just in case.

My CRS assistant said the CRS received my message. If there was something with urgency he would have been in touch with me right away ... So to "sit tight and wait for my GI to reach out to me...

And my GI is still Missing in action. ETA is still unknown.

I was sooo frustrated.

Then I went to LabCorp ... The elevator doors opened on the 1st floor to release a hacking, coughing, red nosed teenager that looked like she was half dead. No mask. But her Mother was with her and the Mom had a mask on. And the young girl was clutching her stomach and saying COVID and the flu....oh I am so sick....What????? Back out to the car I went for my can of Lysol. Lol... 45 minutes later... (Hey I had to wait for some of that Lysol to dissipate. It was so strong!!!! People were giving me the stink eye and taking the stairs...)

Finally I took a deep breath and ride it up to the 3rd floor. I thought I was gonna pass out by the time the doors opened! Slowest elevator ever!

The receptionist was popping her gum... (One of my pet peeves,) reading a magazine and didn't even look up at me. I had to say... Hey they moved your kiosk.... Friendly smile.... And she popped her gum and said .. well if you looked around you'd see it right behind you .. (It was in a corner behind the door. Who goes looking behind doors? ) But I responded.."If it had been a snake it would have bitten me right on my bottom"... so chipper.... sigh....So I had to go over there to scan my insurance stuff.... And when I walked away from her she saw my walker... And her whole demeanor changed. She became nice... And dare I say... Helpful? And of course that ticked me off even more.... You can't just be nice to people cause they are people??? You have to wait and see that they can barely walk???

I know... There was just no pleasing me. Darn doctors, sick people, elevators and Lysol overload had messed up my whole day...

But I was nice and chipper to her and she directed me back to my room. (I kept hearing my mother telling me to be nice to everyone.) And lo and behold.... Who walks in with the biggest needle and smile I've seen in a long time??? The receptionist. My eyes bugged out of my head so far she started laughing... And she said... I'm not "just" a receptionist. And I was looking at that needle and laughing like a hyena. And she got the vein the first time! And I told her Thank you for not hurting me... And she just smiled and said "I don't hurt Grandma's using walkers that are nice and respectful to me." I laughed so hard I thought I was gonna fall off the table. She was nicer and funnier in the back room and made everything better.

Lesson of the day: Listen, remember and practice what your parents taught you. Ignoring that stuff can still bite you in the a55 even when you are old.

But I'm still sorta stewing about not having the results in a timely manner... But after today.... (I think God sorta thumped me on the head a few times) I think I better be patient.

Clo
Posted 4/4/2023 1:04 PM (GMT 0)
Well I get the stewing part - of course I get the stewing part!! But the rest of it would tick me off too. What a day, just to do something perfectly ordinary. I agree, why not be nice to everyone, why wait to see you had a walker? But that was the perfect example of why being pleasant to people can pay off. Sometimes we just can't do it, but there are times when it works.
Posted 4/4/2023 3:02 PM (GMT 0)
I go to Quest for my GI’s bloods. And there, also, receptionists are a thing of the past. The blood vampires are the only ones in the office and most of the time there’s no one manning the reception area at all. If you’re not computer savvy enough to work the self checkin kiosk you’re outta luck. Of course it’s all blamed on covid but I’m so tired of hearing that. I don’t even think it’s that they can’t find anyone to work as much as they don’t want to pay another employee now that they’ve found a good excuse (covid!—as if that’s a reasonable reason anymore) not to.
Posted 4/4/2023 5:47 PM (GMT 0)
Oh gosh... I thought I was the only one thinking that. I really dislike those Kiosk things. If I could I'd go elsewhere---but it's not like it's McDonalds is it?

So... Question.... In 2019 I had Paneth Cell Metaplasia in my rectum and sigmoid plus with prominent lymphoid aggregates in my rectum, sigmoid, transverse and descending. Now 2023 does not show lymphoid aggregates or Paneth Cell Metaplasia.... Instead I have the plasmacytosis, lymphocytic infiltration and loss of focal crypt architecture.

Going thru these words and results...

Have any of you had any of this stuff show up in your scopes?. I'm trying to figure out if it's sorta "normal" for people with IBD to have this terminology in their reports.

Clo
Posted 4/6/2023 5:58 PM (GMT 0)
I have seen crypt structure notes on my scopes, but don't remember ever seeing the rest of the things you mentioned. Maybe someone else can comment on that.

I hate those kiosk things too and avoid using them whenever I can. LabCorp pretty much forces you to though.

Crazy about the unmasked sick teen with a masked mother, but so many people are just oblivious about Covid (or anything else) these days that they just don't care. I had a co-worker who works in the office tell me about someone who has been coughing and sick for 10 days and was finally going to the doctor. I asked if she did a Covid test and the response I got was "I don't know and don't care. We all have to die from something." This was from a woman who was VERY sick from covid -- was off work for almost 3 weeks and it took close to 2 months until she felt well. I reminded her of that and she said "yes, mom" lol Covid infections/deaths are waaayyyy down now, but I know a lot of people who have "allergies" or "colds" who never test so I still don't feel comfortable in public places without a mask.
Posted 4/9/2023 12:53 PM (GMT 0)
CCinPA,

I know what you are saying. I usually wear a mask when I go out. I can't believe the looks I get. People out and about all over are mostly maskless.

Things have changed so much. I went "shopping" at WM yesterday. I had to use a rideable cart. People were very friendly and proactive when seeing me try to reach something, maskless and very prone to standing very very close to or touching me on the shoulder. 6 months ago they stayed 6 feet away. They'd grab the item from the top (if I asked,) and gingerly hand it to me with our hands just barely being close enough for a hand off. By the time I got out of the store I was in full blown panic attack status. I liked that people were nice and helped me get items off the upper shelves but many of them didn't hesitate to pat my shoulder or rub my back. I did the "whole strip at the front door, clothes in the washer and take a shower" ritual just to calm myself down.

The pandemic really opened my eyes to germs and viruses.... And now I am finding it difficult to revert back to how I was before... Or to even find a place in-between.

Clo
Posted 4/9/2023 1:16 PM (GMT 0)
Results to blood work are finally in.....But nothing on the scope part. Blood work showed CRP of 11. It's been running at usually 11 occasionally up to 17 for the last year or so.

Doctor still not in the office. PCP assistant said she didn't see anything alarming and they'd get back with me next week sometime.... But she couldn't make another appointment for over a month. They ordered more labs...

I've read up on this and the papers I've read indicated that these results occur in people with IBD--but they didn't indicate if they resolve on their own.

My well person doctor visit and labs were pretty good from last week.... Except that ldl cholesterol and testosteron was high.. (97) My estrogen was at 47... In the expected place but that's after I started estrogen. I think if I lose weight I'll be ok. It wasn't surprising. The last 3 to 6 months I've been living off of bacon and noodles with butter the majority of the time. It's what my body can tolerate.....but..., I'm beginning to wonder if it's psychosomatic.

Clo
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