frustrated!!! symptoms return..- Positive update! :)

ok here is short version of my story...

Last year at this very time (april-may) I was in hospital for a very major flare. It took a whole lot of Remicade to get me out of it... (reg. dose, followed one week later by a double dose) still took a few months to be totally symptom free (i'd say by early July!).

Been getting double doses every 8 weeks - feeling great... until Feb this year.

Still feel fine (energy is good, no cramping) but I started seeing some blood and mucus a bit on stools and being a bit more on constipated side.. Didn't panic about it, but monitored.. (had a few things going on that could have stired things up a bit) - went for my Remi March 3rd hoping it would end things.. it didn't seem to make much change.

Saw my GI on March 10th - he seemed a bit concerned but not overly.. he had hopped to reduce my meds but decided against it. suggested a new scope to see what was going on and mentioned getting my levels checked to see if building resistance.. I asked about adding mesalamine - he said would be like shooting a water pistol beside a fire hose (Remi).

So i waited... symptoms continued... not getting worse but not getting better!. about 3 weeks ago I decided to try the Salofolk enemas I still had on hand (from last year) before they expire.. had to get ride of them anyway right...

Well they seem to help and I can do them every 2 days (not seeing blood when doing them mind you there is some enema coverage anyway... ) I've tried twice to skip to 3 days and blood/mucus return.

I have not heard back from GI since apt ( I know i need to call to follow up.. was hoping things would clear on own and was in no rush to pursue that colonoscopy)

I get another Remi infussion tomorrow.. still hoping that might do the trick.. but feeling frustrated and a bit worried...

DIdnt' want Remi to run out for me already!!!! Grrr..

Anyway, just wanted to vent mostly... been downplaying it to friends and family as I don't want them to worry (last year was pretty scary!) but needed to get it out!

Not sure what to do next! Thanks everyone for listening/reading! :)

Sorry to hear your struggling, I would def get a refill of enemas, and then see how you are after your next Remi infussion, it may be that you do need another colonoscopy, when did you last have one?

I seem to alternate between all rectal meds.....but I find the foam ones easier to retain. I hope this is just a blip for you and the remi helps!

Thanks everyone... (it's good to be understood ;) )

I'm terrified it will escalate again like last year...
If it is just a blip (as in the previous 8 years) than that's fine - I can handle that! but lst time what I thought was an annoyance flare turned into a nightmare flare!

I try to keep encouraging myself that other big symptoms have stayed at bay - no increase in frequency or urgency, no cramping or feeling totally wiped out. But last big flare also seemed to creep in slowly - a little change here and there and did not respond to treatments...

Going to go in and relax during today's Remi and think positive!

That's awesome to hear. I hope the good trend continues!

if you have a good relationship with your doc, you don't want to screw with that, but ,,,,,,,,, I would try to convince him to delay the scope for a while, especially since you are improving -

what is it exactly he is wanting/expecting to see ?

your body should be telling you what's going on inside - how are you feeling ? blood, pain, urgency, frequency, etc, should all be indicators of what's going on -

for me anyway, I don't need something shoved up my butt (with all the associated risks) to tell me how I'm I'm doing -

just me I guess - hope it goes well for you