How do you know if you're in remission?

[kateel]

My doctor says that I'll be in remission in three more weeks when I'm done with my pred. (I think it's a little presumptious, but what do I know?) Anyway, we've been told that it will be safe to start trying to have a baby again once I am in remission. (Side note, after my diagnosis, my doc told me he doesn't need to see me for six months, I'm taking this to mean that I will determine for myself when I'm in remission) If my symptoms seem to be gone and I'm done with my prednisone, do I assume I'm in remission? Do I need to have tests done to be "declared" in remission??

This is my first flare, so I don't know how all this works...

 

[SdN]

Remission is less of a black and white/yes or no thing and more of a gray area where you are living a reasonably comfortable and healthy life despite having a chronic, life-long disease. To give you a countdown and say you will be in remission in X number of days is, in my opinion, a foolish thing to do because honestly there's no way for your doctor or even for you to know. You basically just base everything off of the symptoms your are experiencing at that moment in time.

Has your doctor discussed any long-term medications to help keep you in remission? For UC or Crohn's you will typically start with an NSAID, like Mesalamine, and go from there. If you definitely have UC or Crohn's pretty much all of the medical literature out there recommends you take something long-term.

 

[kateel]

Thank you for your reply. I am currently on 40mg. of pred for 7 days, then I taper off over the next three weeks. It looks like I will be on Asacol for the long term.

I thought that was a pretty bold statement for him to make to me. I am currently shopping for a new doctor. That conversation was one of many reasons I think I need to move on to someone with a better bedside manner.

 

[Jennifer]

Yes that is a bold statement. I'd worry too if my GI said something like that. No harm in shopping around for another doctor cause you should feel confident in their abilities.

If your blood work is fine and your scopes look great and your symptoms are minimal to none then chances are you're in remission but you will have to continue taking meds to stay that way.

 

[Grant]

After my 1st surgery in 97 the surgeon(not a Gastro specialist) told me "your cured". :ymad:
If only.

Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[Swirl]

Good thing you're already planning to see a new doctor. If you go to the bathroom normally and have no pain or any other problems, you're in remission. Stay away from food that gives people gas cause that can have you acting up.

 

[kiltubrid]

I thought I was in remission until a colonoscopy three months ago found inflammation. I had been symptom-free, and my doctor told me that that used to be considered remission, but not anymore. Now you're not in remission until there is no inflammation. (She used a technical name for it, but I can't remember what it was.) The reason, she said, is that inflammation can mean an increased risk of colon cancer, so the goal now is for there to be no inflammation.

 

[archie]

I'm glad you posted this thread as i've always wondered what remission is, I pretty much feel great 99% of the time then out of the blue get a grumbling pain and crazy BM's then it settles again so i'd say i'm in remission (but who knows) like you i'm new to all this and i'd love to hear other peoples view on remission. I don't take any meds since surgery and no-one has mentioned maintenance meds also my GI discharged me so he must have gone to the same school as your doc!!. Due to see my surgeon though next week and get blood test results so it will be interesting to see the results. Good luck and I hope you do gain remission after the pred.

 

[Dan]

Glad I found this thread as I was going to ask something similar

Thanks

 

[tflock]

Like it was mentioned above, remission really is a gray area. It will vary from person to person. I would say that if you are in remission you will be living a comfortable life where the disease is not controlling your life, and you are not having symptoms. I would say that even if you are in "remission" you still have to try to avoid certain foods because I believe that foods can cause some problems or upsets. As long as you are not experiencing symptoms and are living a comfortable life again, you are in remission.

 

[bruscar]

First thing i would notice is that i wasnt reading as many magazines and newspapers !!

Seriously, if you can live a relatively normal life and do what you like when you like then you may (!) very well be in remission. You may also be able to walk into a public place i.e. a shopping centre and not make finding the toilets your first priority.

Wishing you all the way into the remission lounge !!

 

[Dekar]

When my stool is formed and I dont have any stomach pain

 

[slevan]

My gastro is very good--one of the best in my state. He says remission is defined by two very important things. First, your sedimentation rate is within normal ranges (0-20)--this blood test measures inflammation in your body. Secondly, do you feel normal. No fevers, no tiredness, no stomachaches, no diarrhea. Like the person in the above example, you can feel fine, but still have inflammation. I agree with everyone else who says to find a new doctor. My doctor has seen me at least every month since I have been diagnosed (mainly because I'm not in remission yet and we can't find something that works). But, if your doctor thinks that ending the prednisone will be the end of the flare, he could be wrong. I would also consult someone about how early you can start trying to conceive. I know prednisone stays in your system for quite awhile and can cause birth defects. You would want to make sure all is a-ok there before proceeding to trying. Good luck!

 

[debbie.rich]

remission

When I am remission I pretty much eat what I like. However I do eat very well- Good fiber, lots of veggies, whole grains. But at the same time I take a good probiotic daily, a few very good vitamens including omegas which are very good for crohns. Glutamine is particularly good for us. If you start to feel bloated, gassy, loose BM than cut back on too much roughage, dont eat too much either and make sure you take probiotics and glutamine. Also I take minimal 'salofalk' (mesaline) daily but up it for a week, or take extra in suppository form. This really works well for me and rarely get a flare-up and when I do they are shorter. Good luck.
FYI- Doctors told me I must take an auto-immunce suppressant for 5 or 10 yrs. I refused and am doing all right.