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How do you know if your in remission???

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Ulcerative Colitis
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Posted 8/20/2008 3:08 AM (GMT 0)
I've been battling this UC for so long now and don't think I've ever achieved a remission?? I have a friend who has Crohn's and says when she's in remission she can eat whatever she wants (lucky her I say).

What can I expect w/ UC, does remission mean like before I was diagnosed, firm stools, no urgency, no blood, eat anything? Or should I be happy if I only go to the bathroom 3-5 times a day, always watch what I eat, and hope for little bleeding/???

My GI is recommending the j-pouch surgery and I'm not sure if I'm ready.

Thanks

Tammy

Posted 8/20/2008 3:24 AM (GMT 0)
No blood, pain, D/C, weight loss or mucous...I'd still be careful with food, stress etc.

Posted 8/20/2008 11:02 AM (GMT 0)
remission is when you have NO uc symptoms at all.
if you have any symptoms, no matter how mild, you are still flaring.
it may be a mild flare, but flaring non the less.

this disease is basically inactive or active. so....

remission is lack of symptoms completely.
Posted 8/20/2008 11:43 AM (GMT 0)
It's nice to be able to call remission with the lack of symptoms but the fact is that some people just can never achieve that result. So everyone has their own definition of remission because we all have a new "normal". For me, I will never have NO symptoms. I always have something to some degree but to me remission is going to the bathroom 1-3 times a day with semi solid or as I call poopie chips but with NO blood. Anytime you see blood, it means that your colon is still in a fragile state. Also, no pain when going or that horrible left sided pinchy type pain. No joint pain too.
Posted 8/21/2008 5:50 AM (GMT 0)

Buy a fecal occult blood test at the drugstore.Cost about $10. A positive result will indicate

no future flares.

Posted 8/21/2008 5:57 AM (GMT 0)

sheldon33132 said...

Buy a fecal occult blood test at the drugstore.Cost about $10. A positive result will indicate

no future flares.


uhhhh.....say what???

Posted 8/21/2008 6:45 AM (GMT 0)

My GI says Inflammation can be measured by the number of stools and their consistency - so the more you go and the more it is watery the more inflammation. I find that odd because I never had D last year, I just went about 5 times a day and had some blood. I started meds 9 days ago after a new flare and have had no blood all week and solid stools for the past 4 days so I thought I had got into remission. BUT this morning I saw a streak of blood on a stool and some drops into the pan.

My Current symptoms: 2-3 bowel movements a day, normal consistency of stool, no pain, minor streaks on stool or a few drops of blood in the water and minor spotting on tissue every few days – does this mean I am still flaring or could it be my small hemmies for which I even doubt I bleed from!?

I am using steroids and pentassa so maybe it is just masking my symptoms some days and I am still in a flare?

Anyone advise me please?

Posted 8/21/2008 7:10 AM (GMT 0)
Hi LR...Considering how bad you were during the c-scope, I'd say you're still flaring but improving for sure.

How long are you to be on the clipper steroid?

quincy
Posted 8/21/2008 8:07 AM (GMT 0)
I am on the clipper for a month and have only been on it 8 days along with the Pentassa. I'd say I am improving too given that the D has stopped - which I put down to a change in diet as much as the meds - and I feel really well. I guess the bright blood tells me that I am still flaring - which is depressing. each time I see blood I go into a depressive state. The thing is it's difficult to tell if it's the piles or the inflammation - I am thinking it's the latter as it subsides with meds but then it subsides when the D goes too... I am so confused.
Posted 8/21/2008 2:04 PM (GMT 0)

Remission for me was 2-3 BM's per day, NO blood, no cramping, and no nausea. The only thing different for me b/w pre-UC days and UC remission was I needed a little bit more sleep. Oh, remission...those were the days. shakehead

Tammy, did you have your surgical consult at CC yet? 

Posted 8/21/2008 2:19 PM (GMT 0)
I have just that, Dork, just have some blood which freaks me out.
Posted 8/21/2008 2:51 PM (GMT 0)
Some of it is debatable, but having ANY blood whatsoever means you're not in remission.
Posted 8/21/2008 3:06 PM (GMT 0)
Unless it's my hemmies!
Posted 8/25/2008 2:33 AM (GMT 0)

Hi Comedydork,

Thanks for asking, we just got back from vacation.

I did met w/ Dr. Remzi last week. He seems very confident that this surgery is  a really good option for someone w/ UC.  He said something about debating that surgery should be given as an option to people along w/ medication treatments.

I told him I'm still not 100% sure I'm ready for this because I'm trying out diet. He said I'm not a candidate for the one step but either 2 or 3 cause he won't know until he sees the tissue. (due to med's i've been taking and how long I've had the disease)

I thought he couldn't do surgery when your on steroids but he said he can, I want to try to go off them one more time and see what happens.

I feel comfortable w/ him doing it b/c of how many he's done.

He also told me that I couldn't drive or do much for 6 weeks following surgery. I can't believe that I can't drive.

How are you feeling about your upcoming surgery.

Tammy

Posted 8/25/2008 2:45 AM (GMT 0)
I guess I have a level of the disease that is never in remission, because I always have some blood. My body makes more. There is no cure for UC. I am thrilled if I don't have urgency issues. Then I can function, which is as much as I can expect unless I have surgery.
Posted 8/25/2008 3:32 PM (GMT 0)
Interesting--Dr. Remzi never mentioned to me that he thought surgery should be considered w/ medical options but I'm not surprised he thought that. He did tell me that he does not like Remicade and thinks surgery would be a better option. He also thought that a jpouch would help my quality of life (not starving myself before leaving the house, hunting for a bathroom, etc).

I'm feeling...indifferent? about surgery. My body/colon is being really weird. After Remi stopped working, I lost a lot of blood. But this past week, I had almost no blood and it seemed like an almost-remission?! So I don't know what to think about surgery.
Posted 8/25/2008 6:43 PM (GMT 0)
Hey Tammy,

From what my dr told me I wouldn't get the J pouch surgery unless it's your last possible choice. If you're only going to the bathrrom 3-5 times per day compared to what you were then I wouldn't do it. According to him you would have to go to the bathroom up to 12 times per day including after every time you ate. His sister had the surgery and he says it's not good. As far as knowing when you're in remission for me I didn't have any symptoms, no pain, going one time per day, could eat whatever i wanted for the most part and definitely no blood. I think that is true remission but for a few people I know they'll settle for not having to go as much and not as much pain on a daily basis.
Posted 8/25/2008 8:39 PM (GMT 0)
I have had this disease for so long ( like 47 years), I am not sure I would know remission. However, I am happy to say I rarely have urgency issues (maybe once a year); and for me normal means 2 to 3 BMs per day. In fact when I don't have two I feel bloated.
I eat ALMOST everything all the time anyway (except chocolate.......I can only eat tiny bits occasionally).
Hope this helps
Posted 8/26/2008 12:32 AM (GMT 0)

I guess I never achieved a real remission. My concern is the continuous inflammation in the colon leading to more problems down the road for me like colon cancer, etc. The surgeon said that if I'm too sick to have the surgery they wouldn't be able to do the j-pouch surgery  it would be the ilesotomy.

Maybe I should look at it like this, how much of my time and life does it consume.... if I look at it like that I'd have to say it's really alot. The surgeon and my GI's biggest point was quality of life (could I hold a job, excerise, etc. --I know that could definetly use some improvement for me. I'm tired of my life being revolved around the toliet!

I just got the book about the SCD (specific carbohydrate diet,) has anyone tried it?

Comedydork,

It's definetly hard to thing about surgery when your feeling OK, that's how I am right now because I'm on the steroids. I'm in no hurry to schedule the surgery either. I have to say though that my colon isn't tolerating as much as it used to, pretty much all foods bother me now. With steroids I used to be able to eat any and every thing now I have to still be careful of what I eat w/ the steroids.

Is your diet limited?

I'll see if I have a different tune when I'm off the steroids. Keep me posted on how you make out.

Tammy

Posted 8/26/2008 2:19 AM (GMT 0)
I sorta said this in another thread, but it fits here.
I'm surprised some start thinking about surgery so soon after being diagnosed. It seems you have hardly had time to figure out that many aspects of having this disease can be managed. Like don't expect to eat big and then take a walk or jump in a car without a bathroom stop. And learning when and what to eat, and when to just wait until you're in a comfortable place. Just because you poop blood and it won't stop doesn't mean you have to get your colon removed.
Posted 8/26/2008 2:56 AM (GMT 0)
I think remission can differ for everyone due to soem having IBS along with IBD.
Posted 8/26/2008 3:22 AM (GMT 0)
No, my diet is not very limited. I kept a food diary for about a month and found that what I eat doesn't make my symptoms worse. I try to eat healthy and keep my food "safe" (avoid fried, spicy, or sour foods). SCD is not for me--I'm already underweight and if I cut out carbs, I'd probably become anorexic.

Peety, I don't think how long you've had UC should be a factor for surgery--it should depend on your symptoms, what meds your on, etc. I know I've only had UC for a little over a year, but I've already ended up on Remicade and it hasn't helped much. Even if Remicade had helped, I'm not sure I would be comfortable w/ staying on biologics until a newer med is made.

As for the jpouch, I was told by 3 surgeons and my GI that one will go to the bathroom around 10x right after surgery and the numbers will decrease for most as time goes on. I personally know someone who had surgery almost 2 years ago and only uses the bathroom 3-4x, can eat anything, is healthy and looks like a 'normal' person.

Posted 8/26/2008 4:25 AM (GMT 0)
Comedy Dork,

I see you're only 19 and stuck with this lovely disease...

If your doc's think surgery is best for you and you also feel it's what your body is telling you to do, then by all means go for it. Since you're only 19 in 2 years after surgery you'll still only be 21 and what a GREAT way to celebrate your 21st birthday...UC Free!!! and done with the pills , drugs etc.. We as UC'ers are blessed we have the option for surgery and a cure!
Posted 8/27/2008 1:45 AM (GMT 0)

I too thought I would never consider surgery as an option, ever!! My first GI was heading towards surgery for my treatment so I found another GI at the Cleveland Clinic. After diets and more meds and nothing worked  actually it got worse (I'd be in the bathroom at the store 3-4 times while grocery shopping w/ a 3 and 5 y.o.) I had had it, I told my husband that I was going to ASK for surgery at my next GI appointment. It turned out I didn't have to ask, after I told him how I had been he recommended it also.

I think the decision is an individual one and ONLY you will know when your ready.

Tammy

Posted 8/27/2008 2:16 AM (GMT 0)

Peety said...
I sorta said this in another thread, but it fits here.
I'm surprised some start thinking about surgery so soon after being diagnosed. It seems you have hardly had time to figure out that many aspects of having this disease can be managed. Like don't expect to eat big and then take a walk or jump in a car without a bathroom stop. And learning when and what to eat, and when to just wait until you're in a comfortable place. Just because you poop blood and it won't stop doesn't mean you have to get your colon removed.

That's sort of a silly thing to say in my opinion. No one's saying they're eating huge meals and sad because they can't go for a walk right after. That'd be ridiculous. We're talking about not being able to go for a walk ever because you're too fatigued and your stomach is sore even though you haven't eaten all day. It's not about what and when to eat for everyone. I can eat crackers all day and still go to the bathroom 10 times with a ton of pain.

When someone is on and off prednisone (which is not and should never be used as a long term maintenance drug) and when most conventional medications are failing to keep you in remission, including not pooping blood all the time (which can increase cancer risks of course), then why shouldn't they consider surgery? Why suffer and miss out on important years of your life when you can take control back from the disease and get rid of it forever?
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