How do you know when you are in remission?

[Aphrodite_x]

Hi guys,

Just wondering how you know when you are in remission? Does your GI tell you, or is this something you know yourself?

I can't believe how much better I've felt, only in the past week! Stomach pains all but gone, BM down to about 5 a day, semi formed. I'm down to 10mg pred a day, 100mg aza now for about 5 weeks I think. I'm up twice in the middle of the night for the toilet, and that is it (previously I was up about every half hour at the worst time). I've got my appetite back, and I want to start socialising again. I dont feel sick after every meal now either, before everytime I ate I felt as though nothing was going down, just sticking in my throat.

Only bad things left are night time heartburn, fatigue and the fact I may have a rectovaginal fistula (still waiting on my GI organising an MRI to confirm) and having to wear these big sanitary towels all the time! Not a massive deal as its not causing me any pain, but it is kinda gross.

My pred side effects are calming down too...my chipmonk cheeks are going down, acne is clearing up, and I'm nowhere near as bloated as I was even just last week!

I'm scared to even post this in case I jinx things! But yup, think I'm getting there so happy!

 

[Cat-a-Tonic]

It's best to have tests (bloodwork at the very least) to know if you're in clinical remission. It's possible to feel fine but still have inflammation, so it's not a great idea to assume you're remission based on (lack of) symptoms alone. So, your doctor should be able to confirm for you if & when you're in remission. It sounds to me like you're not quite there yet (getting up in the night to go indicates inflammation is present) but it also sounds like you're well on your way. I'm glad you're doing better, I hope that continues and that you do get into a good, long-lasting remission.

 

[Johnnysmom]

I think true remission is having everything normal, as if you didn't have crohn's.

My son was declared in remission when his CRP and SED rate were normal but he was still struggling to gain weight and some months lost weight. His fecal cal was 586.

Once his fecal cal became normal, he had no issues. Gains weight, grows, eats whatever. His labs are still a bit off but that is due to his meds effecting his WBC which is what it is suppose to do.

I do think remission is somewhat dependent on the person, their age and disease course.
I think GI's are comfortable with some patients being less than perfect condition because there are limited meds. If you are doing well on a lower level drug and not getting further damage without suffering with symptoms I think most will stay on the current med path. My son took about a year and a half on 6mp before he was in good solid remission. There was a time I wanted to discuss Remicade but the GI wanted to wait it out. It was good that we did, because now it is working perfectly and we still have remicade available later if we need it. I am only saying this because I think it effects how a GI will describe your condition to you. Telling you, you are or aren't in remission might effect what and how you choose to take your meds.

 

[lblair]

I'm so new at this what blood test do they do to determine this???

thanks

 

[Johnnysmom]

lblair,
The blood tests your Dr. looks at are probably CRP and SED rate, which basically measure inflammation in the body. My son's were normal up until about 2 days before diagnosis. He had issues for 2 years prior and his blood tests came up normal. So with some people they remain normal even though you can be in pretty bad shape.

A Fecal calprotectin is a stool test that shows how much inflammation in in the digestive tract specifically. The CRP and SED rate will pick up inflammation any where in the body and are not as sensitive. A normal Fecal cal would be 50 or less. People with IBD try to stay under 300. A flare can put you into the 1500's. Most GI's like to use the Fecal cal because it is more sensitive to GI inflammation. My son gets one every 6 months or every 3 months if his number is high and they are watching to see if it gets higher.

Everyone is a little different with how their disease shows it's active. For some people it is symptoms, for some inflammation levels, for some iron levels, protein levels, number of bowel movements, and on and on. As time goes on you will figure out what seems to be an indicator for you.

I get all of my sons blood test results emailed to me and it is really helpful. Don't feel bad about asking for your records if you want to keep track of things. At the very least it is nice to have with you if you are traveling an need medical care.

Let us know how you are doing. (((Hugs)))

 

[Aphrodite_x]

Oh no I dont think for a minute that I am anywhere near remission yet, just wondering how you know for sure, whether its you that decides when you feel normal, or if your consultant tells you etc.

Still continuing to feel half decent. Although yesterday and today I have been having pains but they feel more like in the lady part of my stomach rather than my bowels, like having lady cramp. Could possibly be related to my suspected fistula? Who knows!

 

[tillylala]

Hi
I am 6 weeks into taking Aza, quite newly diagnosed etc.
But last week I had pains like stitches, felt more like my ovaries. I don't have any fistulas or anything. They went away after couple days, but just wanted to share I had had strange pains too!!!!

 

[lblair]

Johnnysmom

Thanks that helps I can look at all my blood work on line so that is nice!!! Today was a bad day but I usually get like that right before its time to take a shot which is tomorrow!!!

Thanks again



Thanks again

 

[rollinstone]

I think the best diagnostic tool other than scopes would be the cal protectin test, which is a stool test that measures intestinal inflamation. To me remission would be a return to normalcy, no pain, regular bm's etc, I was soo close to it but recently have had a lil flare. But on 3rd day of pred and feel like I'm on the mend