Crohn's and disability?

[v_dragon]

When i had things this bad before...i was 20, taking huge ammounts of Pred and i had my mom to come home to...

Now?...I'm 40...these fistula are not like they were back then...I came home today feeling like a MAC truck ran me over again, shaking like a leaf because i was so cold and in pain and very afraid i was going to run my car off the road...

The only good days I have are mondays...huh, go figure, after a few days of rest, having a crapper within reach and a tub to rince out the crap (literaly) from the fistula's so i dont spend all day in searing pain. I have enough energy to fix food ( i am having a glass of red wine, lortab and ramen tonight); keep my self clean...

(end of rant)

...
Thoughts?
I have a followup with the surgeon who did my illeocolectomy in 5 days...I don't want to be a burdon but i want to have a reason to live.

 

[nogutsnoglory]

I'm sorry things are so bad. When was your surgery? Hopefully you begin to feel better. It sounds like you just had it and it takes a few weeks to heal. You should discuss a post-op treatment plan with your GI.

 

[David]

That sounds rough It CAN and WILL get better though. You're not a burden. Push to get all of this taken care of.

What treatments are you currently on?

 

[v_dragon]

2 months ago...but...I have 555.0 555.1 and 555.2.
I have involvement in both the upper and lower intestine and the perioanal disease. The surgery was for a stricture that closed up durring recient flair up. Crossing fingers and continuing on with Remicade and adding Cipro is the plan of action for the flair up of the other two. I have been flairing for about 4 months.

(Lortab wore off, freezing and sweating at the same time so i got up to have a bowl of cerial)

 

[David]

What dose of Remicade are you on?

 

[David]

Has your doctor suggested trying the 10mg dosage or have you brought it up? It sounds like Remicade at this dose definitely isn't working anymore.

 

[v_dragon]

we talked about it..he decided not to up it untill more time passed...(new doc for me, i could tell he had not read my file...lost my old doctor...he um..died of colon cancer)

 

[David]

I think it's time he read your file and likely up your dose or switch you to a new medication.

Advocate for yourself. Get the care you deserve. I haven't read too many examples where someone was in remission on Remicade, had a flare like yours and, with the dose being maintained, went back into remission.

 

[v_dragon]

nods...i really like the surgeon so imma start with him and see what happens...5 more days 'till then

 

[David]

Sounds good. Let us know what he says