How bad are your flares, how good are your remissions.

Everyone is different, I'm trying to gauge my own illness and would like to hear from others experiences.

I'll start with a positive. In remission do you have any signs of UC? Cramps, occasionally urgency? Myself, I don't recall ever going a month without some sort of reminder. Often something as simple as minor cramps and loose bowel movements. However this could have more to do with my nutrition habits then UC.

Flares. When your flaring how bad is it? How long do they last? Myself, I don't recall being on a flare that lasted any substantial amount of time. Typically just a stretch of a few hours I have 2-3 urgent movements. Last week I had about 5-6 movements in one day but as quickly as it hit me I was fine the following day.

I have a dr appointment in a few weeks and I'm trying to gauge my illness. If maintenance drugs can give me years of absolutely no signs of illness it might be worth looking in to. I'm fortunate that this disease doesn't seem to effect my day to day life as other describe. However there are situations usually under stressful conditions that it would be nice not to have to worry about the side effects of UC.

I have a very (extremely) narrow range. When flaring I:

bleed a lot, every BM

go four times a day intermittently

soft/D

have a black discahrge that isn't really blood. My GI told me what he thought it was once but I can't remember.

Sit (squat, actually) on the toilet less than ten seconds before I'm done and ready to wipe.

When in 'remission' I:

go two times a day, as soon as I wake up 90% of the time and between 1-5 PM in the afternoon (between 2-4 PM 90% of the time)

Still bleed a very very small amount, just about every day, maybe not for a few days or a week at the time if very lucky.

Still have the black mess periodically, every few days

Have very well formed stools

Squat for 5-10 seconds from start to finish

My flares have lasted up to six months, a longer than my remissions do. So, flaring >50% of the time

 

I agree with fruitgirl. A flare isn't one or two episodes of D. A flare up can lasts weeks, months or years. For me, a flare up is quite severe, many BMs, frequency, urgency, blood... Remission is a period where I could have absolutely no symptoms for months or years.

Yes, 12 years ago when I was diagnosed. It really doesn't seem to effect me as bad as some here on the forums. I'm trying to figure out if I've just been in remission or have a very mild version. (Hoping the latter). But I do have cases of urgency especially under stressful conditions in the AM. But for me I never feel like I'm 100 percent clear nor do I ever feel it effects my day to day life.

John,

Welcome to the forum.

I am so glad you're asking your questions.

When I was initially diagnosed ( and for a good year prior to diagnosis), and while the doc was trying me out on different meds - different combos of steroids, mesalamine  pills and rectals meds, I was flaring. This is my definition: great urgency, cramping, pain, diarrhea in all its forms from loose to liquid, and lots of bleeding with all bowel movements, also mucuous, and blood clots, as well as some mucosal lining, feeling fatigued.

None of the meds worked, and I became intolerant of the mesalamines.

He gave me a choice of biologics or surgery and I said NO to both.

Then I did my own research and put myself on: VSL #3 probiotics, slippery elm powder, l-glutamine amino acid, ensured adequate vitamin d3, did diet modification as in gluten and dairy free and went PALEO, removed omega 6's from my diet, added LDN, low dose naltrexone - and BAM - I was in remission.  Remission to me looks like: no urgency, no cramping or pain, no diarrhea, no blood, but normal formed and looking stools which happen 1-2 per day.

Since being in remission, I haven't had a flare - I have though had a day or two of symptoms when I eat the wrong thing, which goes away once I go back on track. I don't call that a flare, but just a stupid dieting mistake.

I think you'll find that diet has quite an effect on your bowel movements.

If you are interesting in having more control over your UC without having to take as many meds, you can look at things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Let us know what your doc says.

 

When i have a flare i can have as many as 30 bms a day. They can be pure blood, liquid, and mucus. When not in a flare i got 6-8 bm formed a day

i've only had two flares that are worth mentioning. my first one started in 2010 and i was going up to 30x a day. the pain was excruciating and i just wanted to die. i could not function on my own at all. my second and current flare got as bad as 20 bms a day (from florastor and colonoscopy) but that eased down to where i'm at now 3-6 bms a day since starting scd/paleo. i still have some urgency but lately my worst symptom is bloating.

both my flares have been at least a year long.