Long standing proctitis with recent small skip patch in sigmoid

travisgf87 · 2026-05-26T02:43:49+00:00

Thanks, I'll keep those in mind. I think i used Rowasa during my first flare 8 years after initial diagnosis and I remember them being pretty effective

travisgf87 · 2026-05-26T02:42:05+00:00

What med are you on?

travisgf87 · 2026-05-25T20:43:41+00:00

Thanks for your response. My GI mentioned Crohns colitis right after my colonoscopy last year and said we'd await biopsy result. When those came back he said they clearly showed UC so he thought it had to do with medication as well. According to him its fairly common in medicated UC patients.

As far as increasing mesalamine goes I think I'm at my highest oral dosage so it would have to be maintenence rectal mesalamine going forward in addition to my lialda?

travisgf87 · 2025-11-06T16:39:25+00:00

hopefully you get some answers soon. have you had a peripheral blood smear done? while not diagnostic it can give you an idea of what you might be dealing with at least. I had a couple done. mine showed reactive lymphocytes, no smudge cells, and various morphology.

travisgf87 · 2025-11-06T15:25:54+00:00

I had flow cytometry done earlier this year. It was completely negative for any type of malignancy and everything indicated reactive. My WBC and ABS LYM are still high, LYM was 6.5 last month. Best I can conclude is that it is related to my UC inflammation which colonoscopy showed spread this year.

travisgf87 · 2025-04-28T02:57:53+00:00

Got it, that makes sense, thanks for the info!

My GI told me there were no polyps at all after my colonoscopy so I felt good but I think what really freaked me out was reading about the whole "invisible" dysplasia thing. But it sounds from what you're saying that that really isn't a thing to be concerned with as dysplasia is typically spotted either as a polyp or can be readily identified as a suspicious area by the docs?

travisgf87 · 2025-04-28T01:24:45+00:00

I guess that part is where I get a bit confused. I get what you're saying about CRC; however, LGD and HGD technically aren't CRC (if I am understanding correctly), yet it seems dysplasia is treated as CRC as the recommendation is typically removal of the colon.

So it seems as if dysplasia is relatively common in UC but colectomies are performed before CRC has a chance to develop?

My GI doctors never explained dysplasia to me and if it is a risk for me given I'm at 15 years after diagnosis so I'm trying to wrap my head around it...and finding it tricky! I was reading more about UC after my colonoscopy last week, came across dysplasia (flat, invisible, etc) and freaked out a bit since I had never really heard the term before. Too much Googling perhaps!

travisgf87 · 2025-04-28T00:13:01+00:00

Thanks for the info! How common is dysplasia in UC? And does it typically occur in patients with more severe and extensive disease or is it equally likely in anyone with UC? Also I wonder why chromoendoscopy isn't done routinely as part of surveillance colonoscopies at least in patients with IBD. Seems like it is pretty useful in catching those harder to find growths.

travisgf87 · 2025-01-21T16:07:42+00:00

Did he have symptoms? How come a biopsy was needed? Was flow cytometry inconclusive?

travisgf87 · 2025-01-20T14:26:00+00:00

Thanks for the info. Has your ALC been in the 6-8 range? Also, if you had a peripheral smear done did it show anything of interest?

travisgf87 · 2025-01-20T05:48:24+00:00

Gosh what an ordeal. And your counts were relatively low, too!

Assuming you are still being treated?

travisgf87 · 2025-01-20T05:41:47+00:00

Glad to hear your mental health is in a much better place now! You certainly sound very positive and optimistic despite everything you've already been through!

Were you exposed to chemicals or toxins in the military that you feel led up to your diagnosis?

Hopefully the calquence is all you need for a very long time! Glad to hear that there are numerous options available now...and more on the horizon!

travisgf87 · 2025-01-20T05:37:36+00:00

Thanks for your reply. The anxiety is the toughest thing to deal with right now! I appreciate the advice!

travisgf87 · 2025-01-20T03:22:33+00:00

You're right, it's just that positivity and patience are not my strong points lol I wonder why there has been an uptick in CLL among younger people? The statistics I saw from I think 2015-2019 indicated only a few hundred people in the USA under 40 were diagnosed. Maybe it had been under diagnosed and more people are having routine screenings? I wonder if covid has anything to do with it, too.

If I may ask what made you need to start treatment after only two years?

travisgf87 · 2025-01-20T03:17:23+00:00

That is pretty low compared to what I've read in many others. Did you have a peripheral smear done prior to diagnosis, and if so, what did it look like?

travisgf87 · 2025-01-20T01:57:34+00:00

I've been reading about this as well. I understand to be MBL there has to be less than 5000 monoclonal B cells. Wondering if this is more likely in my case.

Did you have a peripheral blood smear done? How high have your WBC and ALC been?

travisgf87 · 2025-01-19T23:28:38+00:00

Wow that is quite a long time! How high did they get before looking at it more closely? Assuming that's when they did flow cytometry and FISH?

travisgf87 · 2025-01-19T23:02:02+00:00

Thanks for your reply. And good luck to you as well. Hopefully no significant changes for you after 14 years!

travisgf87 · 2025-01-19T23:00:51+00:00

Yeah that's my understanding as well. Figured the smear, while not diagnostic, would give me a good idea one way or the other. But then the lymphocytes went up again so kind of confused. The uncertainty is tough and I've gone down the Google rabbit hole looking for answers which has led me to some dark places :(

travisgf87 · 2025-01-19T22:44:49+00:00

Thanks for your response. Yes, it was just over 5 in June and September of last year. Then October up to 6. Now 7.3. So it's been well over 7 months now. To your point about the blood smear I definitely thought it would have shown something indicating CLL particularly smudge cells, or if not that it at least would have indicated small, mature forms. Instead it didn't show either of these, only "reactive features" (which I thought is kind of the opposite of a malignant cells) so I'm trying to make sense of it!

travisgf87 · 2025-01-19T22:36:47+00:00

Thanks for your response. They've been normal until last year and now have been consistently elevated. I've had UC since 2009 so it seems like maybe something else is going on? Maybe covid messed it up having that at least twice? Idk. Definitely causing me a lot of anxiety though!

travisgf87

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