is pan colitis always pan colitis

I don't think you're wrong but pan colitis is the worst you can be dx'ed with. Things don't often go well. In my case once my entire colon was taken over there was no going back. And everyone is different...I didn't respond to meds but other people do. It's a crap shoot. (no pun intended).

No, Soy. You are actually correct in this. I have actually been thinking about this a lot lately and I think far too many people get caught up in a diagnosis. Like you, I believe that the diagnosis is only a snapshot of what your colon looked like at the time of diagnosis. For example, you might be diagnosed with Pancolitis at one point, and if you were only taking oral meds which worked, a few months later your Pancolitis may have turned into just Proctitus. The opposite could also be true. You may have been diagnosed with Proctitus, took rectal and oral meds to fight it off into remission, quit all meds, and later on get diagnosed with Pancolitis. I think all the diagnosis does is tell you the amount of inflammation you had at the time of diagnosis and that diagnosis isn't necessarily accurate at a later date. The disease can evolve or devolve back and forth depending on a number of factors or variables.

My inflammation has been limited to 21 cm. on the left side since 2003, but my diagnosis is still pancolitis. Like many people, the rest of my colon was reasonably stabilized and okay with 5-ASA's, but the left side never responded to anything until Remicade. My GI said the proctosigmoid area is frequently the most difficult to get into remission.

For the past five years the only sign of UC has been the scarring and one small ulcer two years ago, but of course I still have pancolitis with the potential for it to come roaring back at any time. I still watch the restroom facilities everywhere I go.

Yep its a roller coaster ride!

Not sure soy. I think they will always classify you panco...but as we know future flairs don't always go that far. However anyone's can travel even if it is limited at first. Who knows.

I am willing to try extract of armpit however.....

I was diagnosed with Pan Colitis, but noted to have more severe inflamation on the Right Side which was described as being very "loopy, and tortuous".

So, why the Pan Colitis diagnosis? I generally do not have any urgency or frequency issues. My issue is the loose, pastey, mucusy stools + the inability to gain weight and absorb nutrients properly.

Do I have the correct diagnosis, and is the Mezavant the correct medication, as I am not getting any better..

I have pancolitis, but ironically it was not throughout which technically means 'pancolitis.'

My inflammation was just entering into my transverse colon, but nothing further. But my inflammation mainly was in my rectum.

Pancolitis refers to the 'distribution' of the disease. e.g. *all* 6 feet of colon.

I think the Pancolitis Dx, or at least "history of Pancolitis", would stick because it shows 'how bad it can get'. e.g an 'Index' diagnosis.

Having Pancolitis is also a 'game changer' because a person's lifetime risk of colon cancer and other complications, etc increases.

There also seem to be many more physical symptoms with Pancolitis. e.g. It is really easy to get an attack of diarrhea, fluid loss (dehydration and electrolyte and vitamin issues), dizziness, tachycardia and loss of stamina, etc.

My Gi doctor said my B Vitamins were way low. I eat a wide diet so I feel it must be malabsorption due to a sick GI.

Even the Small Bowel can be affected in Pancolitis --> read up on 'Terminal Ileitis'. Vitamins are absorbed in the Terminal Ileium, so it's a bad place to have inflammation or tissue damage.

The 'new normal'.

Post Edited (emmalouwho) : 5/7/2016 7:21:18 AM (GMT-6)