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What will my new 'normal' be?

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Ulcerative Colitis
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Posted 11/8/2012 8:46 PM (GMT 0)

This is my first post, although I've been following the posts for awhile and was so glad to find this forum. I was diagnosed via colonoscopy and biopsies in early October with pancolitis, with extensive inflammation to the hepatic flexure. I think the symptoms actually began during the summer with an increase in BMs, which I attributed to going overboard during berry season. There were also a couple of days when I had really bad, frequent mucousy gas, which I figured was probably a gastrointestinal bug. For years I'd been gassy with soft stools and left-side discomfort during bowel movements, which I thought might be IBS. My doc at the time agreed it was likely but never pursued the matter (he was like that). Then in September things went nuts. At the worst of the flare I was going about 10 times a day, D with blood every time, urgency, tons of gas and pain during BMs.

The surgeon who scoped me put me on Teva 5-ASA, 2x4 a day. I'm taking probiotics and have been trying to follow a low-fibre, low-residue diet until things heal up (I also suffer from food addiction which makes diet modification more of a challenge than for the average person).  I'm now down to about 4 formed BMs a day, no blood for the last five days, no pain and a decrease in gas (still really bad early morning). Basically, my symptoms right now are very similar to what I was experiencing over the summer, which makes me wonder: when people go into remission, is it their pre-UC normal, or do you end up with a new 'normal' once you have the disease? I was always a once-a-day person but maybe 3-4 times a day is the best I can hope for from now on. Or maybe the meds haven't reached their peak effectiveness yet. Or maybe it's going to take more than the meds, or different meds, to get the best results. I'm just not sure what "better" will look like.

Thanks for all of the help you've already given me, without even knowing it, just from me reading old posts :-) .

Posted 11/8/2012 8:51 PM (GMT 0)
Hi and Welcom,

Some do see a true remission as if you never had this disease at all. So don't give up and be thankful for everyday you have and if medication can help you control your symptoms, that's a bonus. 5asa meds didn't help me.

You sound like you're doing well and I hope it continues!

Welcome to the forum, you'll love it here.

Posted 11/8/2012 9:32 PM (GMT 0)
some do speak of formed BM and no blood. Some talk about not quite getting into remission. Your question is really whether there is a difference between "not quite in remission" and "remission but with more frequent and softer BM than before"

I think if I got rid of blood and was at 4 r fewer BM a day I might feel like I was in remission.

But all this is based on symptoms and the truth is what would scoping or biopsies say. f there is still micro-colitis, that would explain the frequent and soft BM, and it would be hard to call it remission - I think this is called symptom remission vs histological remission.

Anyway, you have made a lot of progress in just over a month, so it seems reasonable you will still improve. Maybe slowly. But lets hope for more improvement.
Posted 11/8/2012 9:34 PM (GMT 0)
I've been in remission and its different for me then pre uc. I go once or twice a day and before uc I tended to be more constipated and could go days without going at all. Now once in a while I do skip a day or two but its usually attributed to eating less for whatever reason.

Hope you continue to heal and do well.
Posted 11/9/2012 12:14 AM (GMT 0)
Have you tried some natural remedies and supplements yet? Sometimes mainstream meds will give you the "base remission" but other supplements, diet modifications, activities and over-the-counter meds will give you that "true remission". It all takes some trial and error.
Posted 11/9/2012 2:42 AM (GMT 0)
Usually prednisone put me in "remission" with 1 formed BM a day but once tapered it was 2-3 formed a day. I beleive I had a new normal but from what any GI would say more than 2 a day is not full remission. Remember also that these things take time time time.
Posted 11/9/2012 2:53 AM (GMT 0)
Before Remicade, 3or4 times per day was a good state of "remission" for me. But I always had some blood.
Posted 11/9/2012 12:44 PM (GMT 0)
MaxMilian: Other than adding probiotics, the only supplements I'm using are ones I was already taking -- multivitamin, calcium, Vit. D to improve absorption of the calcium (I'm on lansoprazole for acid reflux so have to increase my calcium intake), and Vit. A for dry eyes. Which other ones are recommended for UC? I'm keeping a food diary (a bit too soon to see patterns emerge yet). Haven't tried dairy free/gluten free yet; I wanted to wait until the meds did as much as they were going to do first, so if I saw improvement I'd know it was due to the diet change and not the meds (fewer variables).

MadCat25: I'm learning that UC is an exercise in patience. It's a bit overwhelming/alarming to learn that it can take months, years even to figure out what works and what doesn't, and there are sooo many variables. At times I get caught up in it and think I should be trying everything at once. Then I take a breath and tell myself one day at a time, one thing at a time, and I'll figure it out eventually. And I remind myself to be thankful for seeing as much improvement as I have in a short time, because so many people are suffering so much worse.

Posted 11/9/2012 1:36 PM (GMT 0)
That's a good idea on keeping your diet constant whilst you wait for the meds to have full effect. You could try drinking ginger tea to help further ease any inflammation. Other supplements you can try (depending on what symptoms you still have) are: slippery elm powder, psyllium seed powder, peppermint tea/oil, digestive enzymes just from the top of my head.

Do you exercise? That can help too.
Posted 11/9/2012 1:47 PM (GMT 0)
MissMarple,

Welcome to the forum.

You've been given some great ideas here, from great people.

It's good the meds are working for you; they failed me.

I agree with Max, supplements and diet modification can help you to the finish line.

Slippery elm powder, probiotics (which ones are you taking btw?), L-glutamine amino acid powder as well.

I used to be a foodie, so I understand your reluctance to go gluten free, it's tough.

There are 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.

Posted 11/9/2012 2:23 PM (GMT 0)
welcome to the forum, missmarple. different people experience different levels of exacerbations and remissions. for me, when i am in remission, my stools are normal and there is no pain or any other symptoms. that is true remission. some people have "symptomic remission."
Posted 11/12/2012 9:59 PM (GMT 0)
InSoFla: I'm taking Webber Naturals Complete Probiotic. It has Lac. casei, rhamnosus, acidophilus and Bif. longum and breve; 10 billion active cells. It was the best probiotic available at my local pharmacy, although I'm going to check the health food place in the next town over when I have a chance.

MaxMilian: I try to get moderate excercise most days -- walking, jogging, yoga, some circuit training. I do find it helps, not just with the UC but in other ways too.

Feeling a bit bummed out today. Things were going pretty well so I tried bringing a little more fibre back into my diet and had a bit of blood and discomfort again today. Rushed things too much, I guess. Feeling frustrated stuck with white bread and Corn Flakes when all I really want is my whole grain bread and Kashi cereal. Makes it really hard, too, trying to encourage my husband and son to eat healthy when I'm eating the things I'm telling them not to eat. I feel like hiding the white bread and fibre-free cereal and sneaking it out when they're not looking.   

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