What's Next...

[Honest]

Hi All!
I just joined this forum because I really wanted a community to talk to about this disease. I just had a really quick question about CD. I wanted to know what is next? My CD has been in remission and I have been taking pentasa. Am I just waiting for my Crohn's to get worse? Sorry if it sounds like I am looking at the glass half empty, but I really can't see the optimistic side of this disease. I feel that comparing my disease with people that have worse cases is not a nice thing to do to anyone. Any advice is really welcome. Thank you for listening.

 

[Jennifer]

Well when you're in remission you do your best to stay in remission. This is usually accomplished by staying on maintenance medication which it sounds like you're doing and having regular tests done in case there's something going on but hasn't troubled you with symptoms yet. Regular tests are a colonoscopy, endoscopy and blood work. I have blood work done once a month because I'm on 6MP but you should have it done at least every few months. I have colonoscopies and endoscopies done every 2-4 years (it changes because I've changed GI docs due to moving). I'm also in remission (if I weren't then the scopes would be done at least once a year). If I ever experience symptoms like random pain that doesn't go away, diarrhea that doesn't go away, mucus or blood in stool then I report it to my GI right away. How long have you been in remission? Mines 12 years so far. I'm not really sure if there's an optimistic side to having any disease but at least this one isn't terminal and we are able to go into remission. Remission is always the goal until there's a cure.

Welcome to the forum!

 

[Terriernut]

Whats next? Enjoy every day! People can go 20 years without symtoms. I went a loooong time without much in the way of problems. Take your maintenance meds, look after yourself, take good care of your mind, body and soul, and stop worrying about what is around the corner is my best advice.

And Laugh Alot!!!! Because it really is the best medicine!

 

[Jer's Girl]

No one can tell what will be next for you, but if you look up all of the worst case scenarios you will drive yourself crazy with worry. This disease effects us all differently, so don’t think just because one person has had to deal with X, Y and Z that you will.
Congratulations on your remission!

 

[Honest]

Thank You

Thank you for the encouragement everyone! It is true that our illness is only chronic and not terminal. I never looked at remission as being the goal, but if you look at it from that view then I can worry a little less about what is around the corner. I think in my mind I was thinking that I was waiting for a stricture to occur in the future. I have been in remission for a little less than a year and my doctor says that I am a mild case, which I don't quite understand.

 

[Terriernut]

Mild case, meaning without alot of symptoms. I know, easy for THEM to say!
Also meaning when you flare, it isnt 10 out of 10, but maybe 4 out of 10. The goal is to keep you from flaring, and when you do, if you do again, to keep it mild. Which means, if you have symptoms, dont wait to get to the Dr.

Keeping in remission is all of our goals. We cant go around worrying about things everyday, we have lives to live!!! And we do. Go out and be YOU.
:rosette2:

 

[Honest]

I can be described as a person that lives in the present, but when I explain my disease to other they always seem to ask what happens later with my Crohn's and I never really gave any thought to this until recently and I probably thought myself into a very pessimistic state. This is why I was asking what is next cause even I don't know my future with this disease. I felt that my CD could only get worse and not better.

 

[Terriernut]

You tell em what happens next is.....you'll sick me, the poo fairy on em!!!
:ytongue:

We dont know what happens next, but it would be nice if we won the lottery!!

 

[Astra]

Hiya Honest
and welcome

This disease is an unpredictable bitch!
But try not to worry what's next, it might be nothing's next!
My gastro told me that my Crohn's is a mild case too nearly 6 years ago, and I've only had one major flare since then, Pentasa was my only med. I was in hospital for a week last year, I was blocked and infected, this was stress related tho.
When I say flare, I mean inflammation, that's what a flare means to me anyhoo!
No one knows the future, so don't even think about it, if you're ill in the future the gastro will talk about a new med regime for you, there's the biologics, immuno suppressants and steroids.
good luck and try not to fret!
Joan xxx

 

[DougUte]

What comes next just depends. Hopefully, remission, for a very long time. I would tell you not to worry about it, but I worry about it to. It's hard not to. Just do what you can to stay in remission. Take your maintenance meds and have the regular exams. Mine is active right now, so I am doing colonoscopy annually, keeping appointments with my G.I. doc every couple of months, and I just started Humira. Pre diagnosis I went years between symptoms, so I know it can happen.

 

[Honest]

I guess stress really does make this disease worse! O man! I am only in college and stress here is probably minimal compared to stress in the real world. Maybe I'll try to win the lotto and live a stress free life. =) I am blessed to be in remission cause that is the BEST stage you can be in when you have CD.