Is This Normal For Pancolitis?

I don't think we have enough information about your current/past symptoms to say whether it's normal. Normal with this illness can mean many things. There are people in remission who live as if they don't have UC and there are people who have daily struggles with active flare ups for years. It is very individual. If you're able to go once a day or less without any meds, I would imagine you're in remission or you were misdiagnosed. As I said, I don't know anything about your diagnosis or the symptoms you suffered so I can't say what's normal. Did you get a copy of your biopsy report?

Hi, I definitely have pancolitis. I have suffered in this year with fissures as well as frequent accidents. There is no doubt that I have pancolitis. I was diagnosed via a colonoscopy approx a year a half ago. For the most part I seemed to get worse with every new dose of medication. I was on suppositories as well as several pills....including steroids this whole year. My last round of steroids was about 4 months ago which was uceris. I went back on steroids due to going to bathroom over 26 times a day.

During this time I have not ever achieved solid bowel movements. To this day, they are barely solid. While on meds I was was still going about 4 times a day....then finally no blood and no mucus.

As stated, getting off of the meds over the past 4 months was NOT fun. The first 60 days were a nightmare & then it began to calm down. During this time, I have changed my eating habits which I believe has helped.

My current symptoms include diahrrhea every morning (which is urgent most days). This was the same on meds as well as off. I still suffer fatigue & have less of an appetite than ever. If I have more than 3 movements in a day, I cut out foods and go liquid and things seem to calm down. Sometimes I have joint pains which tells me to go back on liquid diet due to inflammation.

Now, during this year, I have not had less than 4 movements per day. Over the past month, I have started having a bit of constipation....this is a bit concerning since I decided to go off of my meds. I think I am most likely in remission finally after a year and a half. I know I am not cured & am not fooling myself into thinking otherwise. Just am getting confused with this new symptom of no movement at all in a whole day.

Note: I can tell I need to go as my stomach begins to hurt on the day of no movement and I am totally exhausted during the days of no movement.

I hope this provides more information.

Thanks!

I think I am most likely in remission finally after a year and a half. I know I am not cured & am not fooling myself into thinking otherwise. Just am getting confused with this new symptom of no movement at all in a whole day.

I don't think you sound like you are in remission at all. Fissures, accidents, going 4x a day, joint pain, fatigue, cutting out food to countrol symptoms.

You need another colonoscopy and then probably a step up in treatment. I can't quite tell, but it doesn't sound like you've tried anything beyond the 5-ASAs and Uceris.

Edit: Or to put it another way: constipation =/= remission. I wrote an entire post explaining how I had dreadful bouts of constipation with severe pancolitis.

I never had proctitis. My rectum was 'relatively spared', in medical jargon.

Beginning to think I'm a medical anomaly. Wouldn't surprise me, since I've been an anomaly my entire life anyway.

Well, I did have some, but it was never as bad as in the rest of my colon. A 2007 colonoscopy said I had 'severe and extensive' Crohn's colitis, but also described my rectum as 'relatively spared'. My 2010 colonoscopy report did not even mention my rectum. It just said that things were very bad in the ascending and transverse colon, while I had less severe inflammation on the left side.

Finally, I got a flex sig in Jan 2012, which showed 'moderate inflammation' in the rectum and sigmoid. (The hospital's reasoning for not doing a colonoscopy was if I had inflammation there, I would have it everywhere.)

So it would appear I had minimal rectal inflammation which progressed to moderate. I think moderate inflammation would probably rule me out from having an IRA, although in studies people with mild and even moderate rectal inflammation have had an IRA. Personally, the main reason I am not pushing for one is because I know my luck: I am bound to be the one who ends up incontinent, and with fistulas, etc.

Hi,

At first I stopped the meds so I can find my triggers as I felt that I could not truly tell until I got off & the meds were no longer masking. I have continued to stop taking the meds because I do not see a difference in my treatment to not taking. Here is the treatment that I stopped: 4 Liada daily, 6mp daily, uceris, 2 suppositories daily & 1 enema daily. I was on the 5 Asa's, suppositories & enemas as long as my diagnosis.

Prior to being diagnosed, constipation was a major issue.....then one day I started going to the bathroom 26 or more times a day. When I woke up from my colonoscopy the doctor told me that I had a severe form of pancolitis. Everything changed & I've been on these horrible meds since.

I agree with you all that I need to resume meds & that what I suspected is correct is that the bottom of my colon is still giving me problems.

Note: I did figure that if I had these same symptoms on all of this med, then what is the point. I do agree that it was probably time to move to next round....I just don't want to progress past 6mp :(. I do realize what is needed.....

Ps: I stopped seeing the doctor because I did not agree with her communication style or really anything.....therefore I have gone without seeing a doc for at least 4 months.

You all are telling me something I guess I already knew.....go back to the doc & get back on a treatment plan!

I was truly hoping that I was in remission as I have been trying to achieve for so long now.

Thanks again for all of your feedback!!!! It has been the jolt & assistance needed!

You don't have to go back to the same doctor.

See another doctor, get on medication, change your diet.

You are definitely not in remission. You have to get rid of the inflammation. You can't do that unless you do what's listed above.

Hi Notsoaicklygirl,

The maintenance meds are Lialda 4times daily, canasa suppositories 2 times daily, a steroid enema daily, 6mp daily & I had been on Uceris for months until the 6pm kicks in. I also was taking an antispasm med to take when needed. I was on the the take down of Uceris before stopping all meds.

I began taking less and less of all meds weekly. I became very frustrated with my doc as I had seen her on a monthly basis for over a year & no real results. She always thought that she told me something when she had not. I finally decided to stop seeing her.

I agree that I need to go back to doc. I started looking for a new one as of this morning.

Note: I have been on Uceris on and off for the past year and a half. Every time I got off, I would have problems. I do think the 6mp helped some what but did not stop my hours of prep time before work & having to stop on days to go to the bathroom. Even in the 6mp, I would get to work & run to the bathroom before I have an accident.

Thanks!

A good GI can make a huge difference.

Get yourself educated about what you want to talk to a GI about and find one in your area with good reviews.

Pancolitis is serious. I have been in a non stop flare for 9 months. Within weeks of talking w my new GI WE together came up with a plan. And I received my first Remicade infusion this week.

Going med free is scary. I dont have anything good to comment on that so ill keep my mouth shut :) :)

K0ash,

I had to switch GI doctors because I didn't get along with my previous one either. I found a very nice GI now and I'm quite happy. I feel we are a good team. I have to have trust in a doctor otherwise I refuse.

Not pooping while having pancolitis is critical in my opinion. I'd be super scared of having toxic megacolon at that point.

I hope you find a nice GI and get back on meds asap. Also the drugs past 6mp/Imuran can bring you relief. I had bad pancolitis and was put on Remicade. Best 2 years of my life.