What is remission?

Hello all,
New to the site... I've been reading posts on this forum for a while and finally decided to join in the fun. thanks for having me. you can skip to the bottom if you dont want to read the novel i wrote on my experience last year

I have a question about this legendary "remission" that everyone is talking about . I started seeing UC symptoms about 15-16 months ago (Really bloody BM's, 10-15 daily, cramping, MAJOR urgency - stay out of my way if im making a move toward the toilet). I was a pretty regular guy before this... once or twice a day, fully formed. I was diagnosed by my GI in Aug 08 and suddenly my house became a pharmacy. i feel like I have tried everything and I just cannot get relief. first i tried colazal for about a month/6 weeks. no joy. I was put on Asacol and 6MP for a month, no dice. couple 30MG prednisone with the asacol and 6mp and i saw some improvement. rarely would i see blood, the number of BM's reduced to about 6ish/day, but the urgency and cramping were still there. I stayed on this combo of pills for about 2 months before starting to taper off the pred. once i got down to about 10-15mg/day, Bloody BM's returned. at this point, I was starting to get really bad headaches up the left side of my head. Really bad and only the left side! i remained on the asacol/6MP after the pred was done, even though it did seemingly nothing. started another 3 month stint of pred shortly after to get the bleeding under control again and tried to taper more slowly. same thing though... at about 10-15mg/day the bleeding bung hole returned. I told my doc i couldnt handle the headaches and had to stop the asacol/6mp combo. headaches went away within a week, and i went into a mega flare a few weeks after (25-30 really bloody BM's, <1 minute urgency, I was pale, cold chills, and the pain of going was awful. it felt like i was dry-heaving out of the lower half of my body. my muscles were so sore from my abdomen down.). the doc wanted me back on prednisone, 30mg/day, and sulfazine. After a few weeks i broke out in a rash and had severe headaches again. apparently, Im allergic to sulfa drugs. doc prescribed the antibiotic Flagyl which also did nothing. so now, im on prednisone only, and have all flaring symptoms but without the blood. my doc boost me up to 60mg/day about a week ago and it just seems like nothing will help. BTW, i became a father about 4 weeks ago to a colicky baby boy... surprisingly, the crying didnt help my symptoms either . dont get me wrong though, i wouldnt trade my family for anything in the world.

anyhow, my real question is... what is remission? what i pictured was being back close to pre-UC form. 1-2 times a day with formed BM's, less urgency, etc. I'd even be happy with 4 times a day. is there a light at the end of the tunnel, or do i need to just temper my expectations? Im trying to avoid going with remicade/surgery, but if things dont get better, i may not have a choice. anyone have any feedback on remicade treatments?

Thanks for letting me rant. i am frustrated beyond belief with this thing...

I think most of us would define remission as a level of symptoms we either don't notice or find easily tolerable. Clinically, remission is having no UC symptoms at all, and having a normal colon on colonoscopy.

I've been in clinical remission for three years now, but still go 3-4 times a day and occasionally have mild urgency. Not back to my pre-UC state, but way better than 15-25 times a day with blood, mucus, pain and debilitating exhaustion.

So it seems you can't tolerate the 5-ASA's, sulfa drugs or immunosuppressants. As current medical intervention stands, you have one level of drugs left to try - the biologicals. That would be Remicade or Humira. I also was not helped by the other meds, and achieved remission only when I started Remicade.

You also have a surgical option, which would be total colectomy and formation of either an ileostomy or j-pouch. This is a definitive cure for UC, but does require a serious investment of time and energy and can have complications also.

There are also a variety of supplements and diets which have helped various members of our group. Since none of them helped me, I'll let those members tell you about them.

Great good luck, and I really hope you're feeling better soon.

i dont even know if healthy people can tolerate Taco Bell...

I think everyone's definition of remission is different. Some would say remission is being off meds, no symptoms, normal scopes. For me remission is 1-3 bowel movements a day, normal scopes and meds. I'm okay being in remission and being on meds. I'd rather feel great and be on meds than risk feeling good and trying to come off them. I truly don't think I'll ever be back to my pre-UC days. I can eat mostly what I want with the exception of diary (LI)

According to the textbook definition, remission is "a temporary or permanent decrease or subsidence of manifestations of a disease."

For me, it's no signs of having colitis whatsoever. It's feeling just like everybody else with the only except that I need to watch my diet, not take antibiotics, and notice the condition of my poo.

hi everyone!! this is my first time talking or reading what feels like me for 8 years... i just decided to have the surgery in Manhattan after the holidays.. I am actually looking forward to being of meds and knowing where every bathroom is here in Wantagh NY!! so done and I am not waiting another year to try to get in "remission" again.. don't want to see another perscription anymore... if anyone is thinking about having surgery, Well i did my homework and are more than willing to share with you the best surgeon in the country and the new technology that is now available.... look forward to speaking with you guys!!!

sadly enough, i use my newborn's baby wipes as my toilet paper! so soothing!

yeah, the urgency is a real killer... literally less than a minute to find a bathroom at times. my poor wife... she knows that when i give her "the look", she needs to get out of the way =-]

it sounds like a lot of people have tried different enemas or enema foams. my doc has never suggested any of that. I dont know if they'd be worth while or not. i guess any shot at relief would be worth while.

For me, remission is being pain free and having no more urgency. I get horribly bad cramps and it hurts so much. Whether or not I'll actually ever get there, who knows, but I can only hope. I've been preparing for my flare to get worse here in a few weeks (giving birth, yay! and last time I gave birth I had a really bad rise in my flare. Ouch...) So hopefully after that I will get 'better'

     I noticed that I posted I was in remission just two days ago.  Geez...that sure was short lived .  Now flaring again after a month and a half remission...NOT FAIR!