How has your uc changed over time?

So here I am just over a year into uc and reflecting on all of the crap I've been through with this disease and also pondering what I've read many of you have been through here as well.

I am a bit curious on how your uc has developed over time, how it has changed since early on to today. Certainly my GI never seems to discuss the general course of this disease and whether it is a constant degradation over time, or hopefully things stabilize for a good long while. Who knows with me (only time will tell) but certainly it has been a degradation/spread so far with an increase to ever more powerful/dangerous drugs.

1.) What was your uc initially diagnosis (mild/moderate/severe) and what was the general extent of the disease at that time (rectum only, a certain # of centimeters?)
2.) After your uc was initially controlled through medication how many poops did you have on an average day and in general was there pain, urgency, etc?
3.) How has your uc spread since then. I've heard it is common for uc to spread.
4.) How have your daily bms changed since item #2, do you poop more now than then, is there more pain, urgency and other things of that nature?
5.) Have you ever achieved remission? (I know it is fairly subjective so I'll let you interpret that as such.)

I'll answer my own questions to get this going:
1.) Mild/moderate an extent of 15cms controlled with both oral and rectal Meslamine.
2.) 1-3 poops fairly urgent, shortly after waking up, and then I'm free for the rest of the day.
3.) 50cms+ at last scope early in this flare now controlled with 6MP (immunosuppressant) plus the prior oral and rectal Meslamine.
4.) I am recovering from a flare but I am going 4 times a day, and it is no longer restricted to just after waking up (I go in the afternoon, at night, and sometimes it wakes me up to go).
5.) No. Not clinical-remission according to my GI, there has always been some noticeable inflammation in scopes. Symptomatic-remission I've been closer but never achieved except for a few seemingly random days spaced far apart.

1.) What was your uc initially diagnosis (mild/moderate/severe) and what was the general extent of the disease at that time (rectum only, a certain # of centimeters?) severe, terrible bleeding, entire colon
2.) After your uc was initially controlled through medication how many poops did you have on an average day and in general was there pain, urgency, etc? 1, urgency for awhile, none now
3.) How has your uc spread since then. I've heard it is common for uc to spread. I've had lower back pain during flares
4.) How have your daily bms changed since item #2, do you poop more now than then, is there more pain, urgency and other things of that nature? none, but more sensitive to fiber foods vs. no fiber..have to have right balance
5.) Have you ever achieved remission? (I know it is fairly subjective so I'll let you interpret that as such.) yes

I don't know that my UC changed (before Remicade), but I definitely learned how to manage it and life with it better over time, so my symptoms improved. Lots of time...

1. diagnosed with proctitis at 17 and had lots of constipation.
2. i can't remember what it feels like to poop normal since my diagnosis in 2011.
3. at 21, i was diagnosed with UC. after a few months of mesalamines, it was pancolitis.
4. i hate poop and pooping and bathrooms. just pain, bleeding, urgency, frequency goes up. the fun never ends.
5. i've never been sure if proctitis is part of UC or not since i didn't have ulcers- just an inflamed rectum. i went into remission for 4 years after that diagnosis. i then had another remission in 2011-2012.

1.) What was your uc initially diagnosis (mild/moderate/severe) and what was the general extent of the disease at that time (rectum only, a certain # of centimeters?)

1) My initial diagnosis was proctosigmoiditis...15 inches (didn't tell me in cms).   15 - 20 times a day of bloody diarrhea....but that's actually mild because of the location.  I'd call my symptoms moderate because of the hell I was going through including the 17 pounds of weight loss from 2 years before that.

2.) After your uc was initially controlled through medication how many poops did you have on an average day and in general was there pain, urgency, etc?

2) I was put on Asacol for one month before the c-scope.  Symptoms definitely did improve by reducing the number of bms.  Not the bleeding or the consistency of them...still diarrhea. 

Then the Salofalk enemas were added.  My symptoms improved continually but did take a few months to level out to pretty much normal.  I did go through a phase of continued bleeding with bms, but more constipation type.  Eventually that disappeared as did the urgency, etc. 

The pain/discomfort of cramping were help by Bentylol as well.

 

3.) How has your uc spread since then. I've heard it is common for uc to spread.

3) No spreading...actually, flares/inflammation is limited to the rectum because I'm on maintenance rectals and treat flares early by increasing to nightly at first recognised symptoms . 

4.) How have your daily bms changed since item #2, do you poop more now than then, is there more pain, urgency and other things of that nature?

4) when not flaring, my bms are usually 1 - 2 a day...mornings either before or after breakfast, no discomfort.  Urgency is only if I ignore the signals to get to the bathroom within 5 - 10 minutes.  If i wait too long I'm running.   I may have another bm in the evening  depending on what or how much I eat the day before.   Consistency would also depend on what I eat and how much.

5.) Have you ever achieved remission? (I know it is fairly subjective so I'll let you interpret that as such.)

5) i've been in remission a lot, but definitely maintenance med supported.

But I do have flares that are short-lived by increasing rectals to nightly.  Within 3 - 5 days I'm feeling more normal but with urgency and rectal pain/discomfort during bms.   When that stops, I'm healing well and will start to taper eventually back to every 3 nights. 

 

I'm certainly doing well after 24 years, and the meds still work their charm.  For how long...time will tell.

 

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