Anyone have UC without D?

I was diagnosed in 2006.  My symptoms started as just loose stools after everything i ate..not Diareah ever..just loose..then eventually the bleeding started..and it was urgency with skinnier loose stools...and basically this is how its always been..

I was diagnosed with Pancolitis and put on 12 Salofalk a day which worked very quick to put me in remission. I also experienced big time fatigue to the point where I could not open my eyes and I was very very weak...night sweats etc..

My next flare was in feb 2008 after the birth of my son..and started the same way but this time the urges to go poo were up to 40-50 times a day where i would run to the washroom but nothing but gas or mucus would come out..i am not joking when i say 50 times a day cause i was logging it for the doctor and also later on as well when i was put on humira..

rectal meds were never pushed on me so i just went straight to prednisone..i was able to taper ok..but after i got off..i would flare again within a month. so i went on humira for a couple years which never really worked on its own becuase a fwe times i would need a low dose prednisone to help me out..and finally here i am today..off humira..doing ok i guess..on 8 salofalk a day and using enemas at night on the advice of quincy (thank you girl!)...down to 1-2 bms a day, no bleeding, less urgent etc..getting better..

so here are the things i have been thinking about

1) I have never had Diareah with my colitis..is this common? even though i am dx with pancolitis?

2) does flaring a month after getting off steroids mean i am steroid dependant? that what my GI seemed to think and why he put me on humira..

3) ...and if I was steroid dependant wouldnt it be odd that i am doing mucn better now..like wouldnt i NEED steroids to be in good shape?

sorry for the oddball questions but things run though my mind kwim...

K

I don't have D really either.  I have loose stools when flaring and sometimes like little pebbles but not really D.  I have the strange flake looking thing when flaring but I don't consider this D.

I think everyone has different symptoms just like everyone responds differently to meds....stupid disease!!

My last C scope was feb 2008 after i had my son and the big flare started..I had a flex sig this past september and all looked good..at this point was on humira WEEKLY and just got off prednisone..i was on prednisone for most of this past summer..a lose dose of 15mg and then tapered in a couple months..
I have NEVER had diaread..loose stools yes..but never the water diareah that some pple here talk about..never lost alot of blood either..more just like a period from my butt
The results of my first c-scope were "ulcerative colitis in a mildly active state"...whatever that means..then after my other one..the report said something about the sigmoid colon....

I always wonder though why the Salofalk did NOT work for my big flare after my son was born..nothing worked but steroids to tame that beast i tell ya...it was horrible..

Things turned arond very suddenly for me recently..up until a few months ago i was going 4-6 times a day urgently. All of a sudden that changed to 1-2 times a day..i didnt change a thing..this was even before i started suppositories or the enemas..so i wonder where the 5asas really DO work for me..or if my body is just out of flare mode for the moment..kwim? i know i read into things too much but I am constantly thinking what if another big one hits..what is gona work and whats not..

****!

Yes I do..its very entertaining to discuss them the next day as well lol

Anyway..My doc said universal colitis. Thats what he said.
I am going to call the office right now and see what I can get.

What do I ask for?

You ask what the issue is? I really have no issue..just trying to find something that works and will work long term..and trying to figure out how to treat a flare without steroids or humira if I can..
I realluy have only had two flares..the one starter one at dx and then the biggie that has continued on and off for two years.. so to me I am new at this..

I dont mean to bother anyone with my questiosn..but I dont thik there is any rule about how many to ask and I usually great at following the rules :)

omg I soooo did not type that lol

I am going to call now. My dads cousin is at the front desk.

I am trying the Salofalk oral /rectal whole heartedly I swear to you.

I have fINALLY gotten the enemas..the less warming the easier it is to use btw...so I shall continue! But for how long..whats the cut off..if I just stay like this for months then is it safe to say its not working?

Yes I know why those asterisks would show up--oooooh yes..I did type something..I didnt think it would show up like that though..it was L M A O
meaning laughing my butt off...

I plan to use the full prescription nightly at a min..that is 6 weeks.

I still have the suppositories, shoudl I be using them as well..? or save them for after?

Quincy mentioned a woman who used them religiously for a year.

Well, I appear to be getting better and now my doc wants me off Rowasa. At first he said some things about tapering, then kind of interupted himself and said "you what, just stop, just stop." This was a month ago. I'm still dong them. He says it is not an effective long term treatment. His rationale, however, is that it is not a long term treatment becuuase it is not convienient. His explanation was "you don't want to be giving yourself an enema all the time, especially at your age."

I like the Rowasa though. I believe both the mesalamines help, but I just remember how much I improved after my first week on Rowasa. I don't see how Asacol could be any more of a long term treatment than Rowasa can be. My "second opinion GI" said the Rowasa is OK to use long term, FWIW.

I told my doc I like the Rowasa. I'll let my finacee put them in for me. I'll let a different co worker give it to me each day while I lay on the break table at break time. If it works it works, #&^%@$#!

Thoughts?

Krissy, (kind of graphic)

I had constipation-going one time a day with urgency when that time came. Had blood-on the TP, on the stool, and dripping coloring the bowl also. Had loose, drippy stuff during the day or gas which had me running to the bathroom 10 or so times per day. Also would wake up in the middle of the night with gas/drippy mess.

After a three or four weeks I had no urgency, was going four times a day, and was not waking up do to UC. I could also sit in my office and pass gas without fear that more than gas would come out. The blood was dramatically less than I had been seeing, but still present.

I would say I'm very close to remission or in it now. Slippery Elm has gotten me to two BM's per day and upping my VSL eradicated all but the tiniest amount of blood that I see only because I look for it very well.

ok , i have a question about the enemas. i have been feeling, 'swoolen' around my rectum area. this is a new symptom for me. i am on salofakl supp. and salofalk oral (9 /day). do you think the enemas would help the swolleness? i have a scope in may, i am mildly flaring after the birth of my son 5 months ago.

my symptoms are pretty much like krissyuc's

krissy- i was wondering the same thing. How long should you use the suppositories? Can you get too accustomed to them and then when you go off them you flare? I really dont want that to happen. I have been on them for a bout 1 month (properly), before that i wasn't religious with their use.

Man, I just want to get back to how i was feeling before my son was born!

Levi, IMO, enemas are MOST DEFINITELY ok for long-term treatment! Studies show that people who use them twice weekly in addition to oral meds stay in remission for longer than those who only use oral meds. I don't know if any studies have been done comparing twice weekly, every other night, and nightly use when in remission, but that would be interesting.

My GI said the only reason to not use them is convenience...if I don't want to, I can stop, but he thinks I'm better off (in terms of staying in remission longer) to use them twice weekly for maintenance, in addition to Apriso. And if I ever find that I have to use them every night to stay in remission, so be it. I'd much rather use enemas than move on to a stronger drug or have a colectomy. It's not for your GI to decide your treatment based on what he thinks is or is not convenient! If he won't keep writing you Rx for them, find a new doc!

Is my 21 years of using them considered long-term? My goal is to use them forever. It's still one of the least side effects medications out there.

Levi...not true about stopping them. To me, the goal would be to find a maintenance level.

Interestingly, I didn't have any plans for the future regarding the meds. My doc said to use them when I was flaring and taper to a maintenance. My maintenance level was one a week, but crap happens and I'm always in some sort of mental crisis. My butt always joins the party.

Just go with the meds and your butt will tell you when to taper. I use them nightly till I'm "normal". Whatever that time takes. I use them for another week nightly, then taper to every second night for at least 2 - 3 weeks.

It's the turtle or the hare.....5ASA is the turtle route.

Oh, if it's any consolation, I'm one of a handful of my doc's patients who has used only 5ASA for this length of time. Because I'm stupid or because I'm smart or because I'm patient or because I'm lazy???? whatever the reason, I still think I'm better off than yo-yoing with the other meds.


Now, I'm talking purely about the fact that I CAN use 5ASA meds, Asacol and Salofalk enema specifically, but I'm clearly not salicylate sensitive. I'm also only talking about those of you who can use them. Not to anyone who cannot. If you can't, you can't....no messing with that fact.

Regarding the enemas vs supps. There is more medication dosage with the enemas and since the lower rectum is most times harder to treat....I would think more medication at that spot is better. You just have to adjust how high you focus the medication and change your laying position.

quincy

It takes commitment and actual use of something rather than taking a pill or whatever. Compliance is really a high factor in success or failure. Now, again....for some they don't work. If they don't, they don't. I may get to that point eventually (hopefully not), but at least I've had a long stint without the other meds that I really don't want to have to use.

I must also say that I'm fairly lazy regarding some stuff. I wouldn't even begin to do the SCD or whatever else if I believed it would keep me symptom free. I don't believe it, so the effort isn't there anyway. I know food has no connection to my flares.

Again....I stress the belief that 5ASA helps prevent cancer of the colon and now that I have liver disease related to UC, the chances have increased. I don't have colon cancer in my family..so there are plusses. I see it also as insurance.

quincy