Is it true that the longer the remission, the less chance of relapse?

rickyleenz · June 17, 2012, 4:31pm

Hello people.

I have been told by my doctor that as I have been in remission for the last 4 or so months without meds and have mild proctosig. that this is a very good
sign and the longer I stay in remission the less likely it is that I will relapse.

I just wanted to know if any of you have noticed that this is the case over the years or not?

Is it true that colitis can follow a trend and spring up every 5 years or so in some people?

I guess I'm just getting the hang of my diagnosis still and never EVER want to flare again!!

Look forward to your responses.

Cheers.

quincy · June 17, 2012, 6:44pm

meh, sounds as though it's summed up in a conflicting hopeful way for you.

You're on no meds, with proctosigmoitis...
Unless you had something else cause the inflammation other than UC, you will probably flare again.

If you do flare again, you will have symptoms you probably will not recognise until they become more obvious.

I wished often in the first year that I'd never flare again.

Be realistic. Hoping won't change it.

q

*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

joannabanana · June 17, 2012, 6:45pm

i honestly don't think colitis has a pattern with remission and flares- at least not for me.

i had a 4 year remission after i was diagnosed at 17 and i was taking no medications at all. at 21, i started to see some bleeding and it's been downhill from there.

Joanna, 22
Did 8 fecal transplants- got much worse.
i'm taking- probiotics, vit d, low dose naltrexone
tried- canasa, pred, 6mp, remicade, rowasa, lialda, endocort, l-glut, vit e enema, VSL enema, aloe vera, NAG, prilosec, zofran, psyllium, bentyl, cipro, flagyl
no meat, dairy, eggs, gluten. include-fresh juices, fruits, veggies, greens, grains, soy, beans, nuts/seeds

pmetcalf · June 17, 2012, 7:46pm

I once asked my GI what would happen if I went off the (Colazal generic) basalazide I've been taking since 2003. His response was that the condition of my colon would gradually worsen.
I've stayed on the med even tho I haven't seen blood from colitis for at least a year or 2. ( Not sure because I had problems with hemmies and did not know where blood was coming from.)

I have days when I have food issues but usually it's when I eat out and don't know what they're using in/on the food. Life is not perfect but a he-- of a lot better than when I could feel pain through the whole length of my colon.

My guess is that if I went off the med, stopped the probiotics and was careless about my diet, I would most likely have problems again.

Female, USA
Diagnosed pancolitis 12/2003, Colazal generic (balsalazide).
Benebiotic, multi-vitamins with iron, Starwest organic slippery elm bark powder, L-Glutamine and LDN.
Working toward a more organic, gluten-free, lactose-free diet.
Goals: (1) REDUCE INFLAMMATION (2) KEEP A SENSE OF HUMOR

pb4 · June 17, 2012, 10:30pm

Since researchers have found a cluster of genes that predict the severity and behaviour of the disease, it's likely something that time will tell, if you're new to the disease, it would be too hard to predict the future of how your disease will be affecting you (with or without meds, genes play the biggest role in the behaviour and severity), which is why some patients that take their meds faithfully can still have huge issues compared to others. Not saying meds won't help, just saying genes will likely trump everything.

erbbraun1029 · June 17, 2012, 11:59pm

When I'm feeling cocky, I think that I'll never flare again, but mostly I believe it can happen at any time.

In remission --pancolitis since 8/09. Asacol 2400 mg. daily; Rowasa 3 or 4 nights a week, add Canasa sometimes, vitamins, calcium, l-acetyl carnitine. limit dairy, no red meat or alcohol. Bipolar/anxiety/depression: lamictal 200 mg, Wellbutrin 150 mg, Lexapro 10 mg

sbauer07 · June 18, 2012, 12:44am

I think its something that is variable and depends on each person. I have been lucky enough to be in a steady remission for 6.5 years. What's even more amazing is that I stayed in remission even after my dad died (very suddenly) and all the stress I have with finishing school.
Like q said, be realistic and hope for the best. You have to get over the fact that you might flare again. Why worry away a blissful remission ya know?

Sam(antha), 23 year old college student
Diagnosed with UC after a bout of h-pylori in Sept 2004. Remission Jan 2006 through a bowel rest, severe case of mono in Apr 2006 then back into remission. Aug 2011 scope showed no active disease--just IBS
Currently on: Colazal (generic) 3 pills 2x, Elavil 25mg, Levsin .125 mg as needed, Effexor XR 75 mg for GAD/OCD

djacobs475 · June 18, 2012, 2:55am

My doctor told me remission and its length, varies from person to person. He told me some can be in remission for a few months, and some many years - it's all very individualistic.

rickyleenz · June 18, 2012, 8:38am

Thanks for the reply everyone. I know I have to be realistic about the possibility of things changing in the future.. I just wanted to know if any of you had noticed a particular pattern to your flares.

The one thing I have hated most in life is uncertainty and with this disease as you all know to well, that's the one thing that sticks in your mind day to day.." when will I flare again".

Thanks :)

wildcatis21 · June 18, 2012, 11:30am

I was diagnosed with UC 11 years ago and have been in remission for about 5 years now. I still take Imuran daily to stay this way, but I have been lucky to not have any major flares that required hospitalization for the past 5 years!! I hope the 5 year mark is not true! I have had "mini-flares" that will last anywhere from a few days to a few weeks, but nothing major stands out.

I think that your lifestyle has a lot to do with staying in remission, along with genetics, and taking your medication as your are suppose to, and probably many other things. I still watch what I eat and stay away from particular foods that used to cause me trouble. I also think that as the years pass and you learn more about how your UC is you become more aware of what to look out for so you don't get into a full blown, crazy flare.

But in the end---UC is very unpredictable and I know that it could all change from yesterday to today.

Primary Sclerosing Cholangitis- Diagnosed September 1999
Ulcerative Colitis- Diagnosed December 2000
Pyoderma Gangrenosum- Diagnosed October 2011
Liver Transplant Waiting List- Since May 2006

Scarecrow · June 18, 2012, 12:09pm

Personally, I used to go into remission with prednisone a couple of times. The first time the remission lasted probably more than a year. I was on 6mp and Asacol during the resission. The next round of prednisone was at a higher dose and I had a remission for maybe 6 months. So, for me, as time went on UC became more "chronic" and remission was harder to get to. Prednisone became pretty much ineffective and my doctor would not let me take it anymore.

suebear · June 18, 2012, 4:26pm

I had a 10 year remission, taking sulfasalzine, followed by a 2.5 year flare. In those 10 years I took my meds and took good care of myself; no idea why I flared so severely but I do believe it goes to the unpredictability. I have another UC friend who had a flare after a 25 year remission. Go figure.

Sue

Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

maubrey · June 18, 2012, 4:53pm

there is no rhyme or reason to this disease.

Dx'd with UC in 1991, then i had a 15 year remission, no meds, ate terrrible, never worried about uc, had a stressful life, drank, etc.

I did flare again in 2006, got it under control in a few months and then on to my third and current flare, starting in 2008 and still with me in 2012!

My most recent flare is lasting 4 years, I take my medication like clockwork, eat beyond healthy, strict diet mod, tried supplements, alternative meds, been on tons of diff meds, was in different clinical trials, research stuff like crazy and Im still flaring.

yeah, makes no sense.

UC since 1991, pancolitis
current: isolated 4 inch patch of inflamation in sigmoid

meds: lialda, omeprazole (gerd),rowasa. 6/6 starting imuran and 4 week course of pred

supplements: psylium seed powder, fish oil, multivit, calcium/vitamin d

Diet: homemade kefir, lactose free. minimal gluten, sugar, vinegar, processed foods, veg oils. trying to eat more organic/grass fed