Pancolitis

I understand that it can progress but for me I was slammed with bad inflammation throughout the entire colon from the beginning when I was dx'ed.

full blown panny attack here too -

I was hit with pancolitis diagnosis, but now it seems all restricted to the rectum. One doc said I was misdiagnosed. I say the asacol is doing its job on the rest of the colon except the rectum.

I wasn't diagnosed until the inflammation was in about 3/4 of my colon. None of the meds that were given to me worked, so by my second scope four months later it was full blown pancolitis.

Sarav84, I would say it is kind of all of the above. Pancolitis occurs in 10% of patients, some are initially diagnosed with it, others have their uc spread until they have it.
1.) Yes, Uc inflammation can initially be throughout the entire colon (pancolitis) but not be noticeable to a person until the inflammation builds up to a level that causes bleeding and urgency. So bam initial diagnosis of pancolitis without any prior warning and without blaming the person for delaying their diagnosis.
2.) Yes, Uc can spread when active/un-managed inflammation is present. It is quite common for uc to start at the rectum and spread upward when it is active during flares. Happened to me (from 12cms to 70cms) and to others here. Where as, when the inflammation is managed through medication overtime its length may be reduced until you have a clean colonoscopy if it is well treated.

I am 53 years old, I was diagnosed with Crohn's Disease by the apprentice of Dr. Crohn's in 1987. His name was Dr. Henry Janowitz and he was up in years working at Mt. Saini in New York. I loved him for he was able to tell my parents and myself that " I know what you have and I promise I will get you feeling better. ( My mom broke down ) and he even consoled her as well. Just after a 3 hour talking consultation with Dr Janowitz and He said " I just have to do my due diligence (tests etc) but you are a classic case personality wise and your NJ doctors are great as they think you have Crohn's Disease too. a few weeks ago by getting tests and after about 3 weeks he called to tell my mom I had Crohn's Disease BUT he will fix me up in no time and he promised I would lead a productive life like anyone else. I needed to have two bowel resections and given a temporary colostomy bag. I did go on over 30 years had 2 more surgeries until some other issues serviced that were not as bad. Let me get to the point, over the years I have found any IBD is sneaky and has a mind of its own. Almost like it is alive and in your digestive tract like the Grinch who took away Christmas. Many "additional" diagnosies creep up mow and then. But This is an example of my most recent and unexplainable. I always have diarrhea normally to go 2-3 times a day. If something is wrong I definitely know and have been encouraged to go to the ER, which I hate to do in today's healthcare system. I was in upper abdominal pain, going watery diarrhea 15 times a day. My back which has been destroyed by Prednisone use and a illness called Ankylosing Spondylitis. I walk with a cane but can drive and still do many things. In the ER my Blood work showed I needed Magnesium again, my CT Scan came back after being seen by several doctors and they all agreed I now had pancolitis. They admitted me for 3 days given antibiotics and Solu-Medrol for which I have hypersensitivity too as I can only take 5-7 days of it before I go into a psychosis and other things start. I have psychogenic seizures, major depression, anxiety that can send me to the hospital by itself. I have
OCD and panic attack disorder. Usually it is the anxiety and seizures make me feel the worst. This was all on record at the hospital. My new PCP, after 3 days wanted to send me to his own Rehabilitation Center for 5 to 10 days of more antibiotics and Prednisone, Something just clicked with me and for other reasons also I refused to go. They created a time of terrible anxiety and seizures. I decided what was best for me at that moment so I checked out of the hospital which was met by more serious opposition causing even more anxiety a couple panic attacks and a few seizures. The doctors and nurses denied seeing any mental issues and just were continued on saying going will make you feel better. I carry my Medical History documents and much more. I know my body almost more than a good GI doctor. I knew when I went home to watch myself very closely and go back to the ER ONLY if I simply could not function. For a month I felt really good, then I was hit with similar harsh symptoms so I packed all my belongings making arrangements to go back and apologize. Blood work again showed low magnesium and they did a CT scan and to the their absolute amazement it showed NOTHING NO PANCOLITIS ( This wasjust 5 weeks later) They had to admit me for reasons of due diligence and decided to do a colonoscopy which came up 100 percent FINE. Absolutely nothing!¡! Well I made the right choice to not go to Rehab as it could have done more harm than help. Covid, C Diff etc to say the least. My doctor's scrambled to get ready for my voice on this but only assistants and excuses (Your Doc is going away). He NEVER ignored me like this before! The physical and in particularly my mental state were pushed to their limits. When my PCP finally popped in he did not mention anything to him. However Facts are Facts. He said to follow up with the GI doctor and I also asked about following up with him and he got mad at me because saying I have missed some appointments in the past but said to call him. It was almost like he was trying to hide from this and no longer wanted any part of my complicated case. I did make a follow up with him and my GI doctor who was never informed of the issue. Also, I made an appointment with a different PCP who I met at the hospital and seemed very nice. My current PCP is actually a infectious disease doctor who takes charge of other patients as their PCP. That in itself could be a danger for patients. He was nice at first then put his strick hand down on almost all my case. Not consulting with a GI doctor or referring me to one etc. Almost like he had a hidden agenda for be some reason not in my best interest.I am not dropping this as many have told me considering all the facts in such a short time and how you were treated that I have a case of possible incompetence? or more!!!!