Am I in remission??

[greengirl]

Hi
I'm new to this so hopefully I get it right. Was diagnosed with UCs 4 years ago but now apparently Crohns. Each time I have a flare it seems to get worse - the first couple of years were really pretty manageable - was just on Asacol. Last one has been pretty bad and lost 10kgs and felt really awful. Doc has tried Aza and 6MP (plus entacort) but had a bad reacion to them so now she wants me to try Methetrexate. However over past couple of weeks I've felt pretty good - no real pain, less tiredness etc. I'm thinking has this gone into remission on its own? My Doc says I shuold still take the meds as if I ignore it it will come back again even worse - but I thought I may leave it and see how it goes - I'd love to know what anyone thinks??

 

[Dexky]

Hi GG and welcome!! If the flares keep coming back and getting worse each time, don't you think finding a maintenance drug to hopefully stay in remission is your best option? I don't have crohn's but my son does. It seems to me that now, while you are feeling ok would be the time to experiment with diff. treatments. I'd hate for you to be in a major flare and then have a bad reaction to meds. It just seems like it would multiply your problems. Good luck!!

 

[Dallies]

I agree with Dexky. Definitely listen to your doctor. Welcome to the forum greengirl.

 

[DustyKat]

Hi Greengirl and :welcome:

This is my personal opinion and it stems from the experience I had with my daughter. Roo's Crohns went untreated until emergency surgery was required because that's when her diagnosis was made. I am in no way suggesting that this will be your outcome, you already have a diagnosis, I just wish to point out to you why I reached the decision I did. Roo was so ill at the time that the thought of her ever getting to that point again was unbearable. As a result, for me to suggest to someone that they don't continue with prophylactic treatment to maintain remission would be very difficult. Therefore I would advise that you follow your doctors directions.

I'm glad you found us and are taking the time and effort to make an informed decision that will best suit you, whether that be with or without medication. So good luck with whatever you decide and welcome aboard!

:goodluck:

All the best,
Dusty

 

[Lisa]

Having dealt with this diesase for most of my life, over 30 years now.....The time between periods of remission for me kept getting shorter and shorter over the years - would go a couple years, then maybe year and a half, then year etc.......each time (at first) I would weant down off any medications, only to have the disase rear its' ugly head again.......

So, from my experience, I would try to stay on at least some type of maintenance drug - and if you are totally against that, make sure at the FIRST SIGN of any type of flare get to a Doc and start treatment, NOT wait it out (Like I used to do!) until you are bad enough for a hospital visit or even surgery....

just my $0.02!

 

[silver]

I've had Crohns for six years and i'm only just having my first recurrance. I've taken pentasa since I was diagnosed, my advice would be to take the meds.

Maintenence of remission is far better than curing the problem when it's there, though like Dusty's daughter, my Crohns was diagnosed when it was very severe because I had ignored the pain.

Welcome to the forum, I hope this has helped you with your decision.

Jem x

 

[Crohn's 35]

Hi Greengirl welcome! You have gotten lots of support here, this community is the best!

This is just my opinion from my experiences, and as we are all different it is only a guideline. I am like Pasobuff, have had Crohns for many years and been on every drug. So I know the common side effects.

Your doctor is right on the mark for having to be on a maintenance drug, and my interpretation of remission is a minimum of 5-6 months..with no symptoms.

I have been on methotrexate by injection, and many others have too, some take the pills and some injections. In MY experience I was sick all the time and I was still flaring. Nausea and headache are very common and it takes 16 weeks to fully kick in and then a lesser dosage, then infinity. My choice if I had one, would be Humira, it was the most milder of Remicade, metho, and Prednisone. Also you dont shove pills down your throat. I just wanted you to realize that this disease can pop up anywhere , anytime, and you should be on something, either meds or LDN, or natural stuff, lots of information here, you have a choice, I hope your doctor helps you on your decision.

:goodluck: let us know.:smile:

 

[Astra]

Hi Greengirl
and welcome

My personal experience is to find a maintenance drug like Pentasa or Asacol and stay on it, these drugs are prophylactic meds, to prevent further flares and help you to stay in remission, I'd been on Pentasa for 5 years without a flare, then I became complacent, idle, blase and ended up in hospital in Jan for a week infected and blocked!
Because of this stupidity, it's taken me nearly 7 months to recover, do yourself a favour hun, listen to docs advice and find a maintenance med.
better being safe than sorry!
lotsa luv
Joan xxx

 

[greengirl]

Thanks everyone for your welcome and your comments - all pretty consistent really. So methtrexate here I come !

 

[Crohn's 35]

Good girl and good attitude! Keep us updated!