Pancolitis People!

Hi. I was dx'd with moderate to severe pancolitis in May of 07 and I know I had it since at least 2004 due to the bloody D, pain etc. It took a combo of Pentasa, Cortifoam and some alternative supplements to get this stuff quieted down; I think Rowsa enemas are just as good as the cortifoam but can be messier to use. My point is you may not need surgery at all, so hang in there and think positively...it is very possible and some can stay in remission for years and years. It is also very important to keep your worry and stress levels down no matter how you have to do it...although this is an auto immune disease it has alot to do with the brain as does stress. Unfortunately for me I have had a life with extremely high levels of stress starting as a child which may have manifested into my UC and now pelvic floor disfunction. At least by the grace of God the UC is quiet.

God's speed to your remission/recovery...it can happen

Thanks to the both of you. To be honest with you, I think the mental part of being diagnosed has made me feel worse than the physical. Not to say the physical isn't bad, it is. However, after reading your posts, I feel much more hopeful of the future. Especially you AMK77 because I am having the same issues with the meds. I have consulted a naturopath and am diving in head first. Hopefully it's not a rock!!!

Alan

I was diagnosed with pancolitis in April of 2004, but started having problems in 2003. I was put on asacol, prednisone, then something else that I don't remember because I was delirious from the blood loss/anemia. At that point they wanted to perform surgery, and I decided to try diet modification. It was a long road, but I found that by eliminating carbs I could effectively keep it under control. Eliminating gluten and sugars (particularly fructose) was the most effective, but all carbs had some impact.

I'm not sure if I ever went into remission per se, as the moment I'd eat carbs I'd have problems that night. Drugs never did anything for me though ... even high doses of prednisone.

This morning I decided to try a fecal transplant. I'll write another post about it ... I guess only time will tell if it is effective.

i had severe pancolitis for a year and 4 months.
hospitalized and went down to 95lbs. was aneamic and had iron infusions. tried all drugs and 'miracle' cures from the net.
dietician and even tried the new agey hokey stuff.... nothing worked.
then it went away overnight.

was fine for 6 months then grandma got cancer and it came back. stress is my trigger i reckon.
had severe pancolitis again, but again, it went away one day.

now im flaring again and its quite mild. and the time before this was just a few months and went away. that was moderate, but only left sided.

so it does get better and sometimes worse. it is different for each flare.
and when i got better, i was competely better with not one single symptom. you'd have no clue i was ever sick except i was skinny as.

each time i get better, i am on different vitamins, drugs etc.... so my remissions are not brought about by the same fix every time. so its very difficult to get better the next time im flaring.

the things i find that have helped me are :
tumeric
enteric coated fish oil
xango juice
vitamin d3

those are the things that im on everytime i get better. for meds, pred works, but ive taken it too many times so i get the side effects much quicker etc...
not sure about the mesalasine as ive been on it for years and flares come and go regardless. so i wonder if its not doing anything at all. if it worked, i shouldnt flare right? frustrating a bit...

i already feel better after a week of flaring this time. so im hoping it was just a glitch in the matrix.
but dont lose hope... which is easier said than done.
dont get me wrong, i was a miserable sook when i was sick and the pain was intolerable....but i was okay. i havent had surgery and i did get better.
take your meds and try different things as everyone responds differently to everything.
you will find something that works.

I started experiencing symptoms in June 2008, not much of anything to begin with, but steadily worsened until it "peaked" in Nov 2008. Symptoms started easing slightly in December... was still losing a ton of weight, so I would mark my remission truly beginning in early-mid Jan of this year when suddenly the weight came back in a big hurry. Crazy!

I wasn't even diagnosed until mid-Jan when I finally had my colonoscopy. To my surprise I was diagnosed with moderate-severe pancolitis... surprising because I was already so much better by then. I wonder what my colon was like in November when I was feeling like death warmed over??

I was prescribed Asacol at time of diagnosis, took it for 2 months. I can't say one way or the other if it did anything (other than make my hair fall out and my joints hurt) since I was already recovering on my own.

I had a sig flex this past August which confirmed what I already decided- I am in remission.

However, since this was only my first bout with UC, I cannot really tell you if this is cause for hope. I have no idea what my future holds and if one day I will have to resort to surgery.

If you start out with pancolitis is that what you will always have? I am so new to UC. Was dx'd with pancolitis in 07 via a colonoscopy.

I thought you had a thread like this already? Maybe that was someone with a similar username...

Anywho, I started getting symptoms in December.. 2003? I was diagnosed in like... I dunno I think April of '04. When they finally figured it out I was put on Asacol 3@3xday, and pred. I've been on pred three times, now on 125mg of Imuran. Complete remission since then (and that was in 04/05). Having a blip now because I added birth control but I plan on stopping and I think everything will go back to normal.

I agree that turmeric is helpful, I start taking it when I notice signs of inflammation. But don't expect it to work miracles. Diet for me doesn't do a whole lot, but by all means, try. Same with supplements. Fiber is good. Starchy foods can help with diarrhea.