Two off days in a row

 I have been on remicade for almost two years and while it has allowed me to live a much better life I still have a few bad days here and there.

Yesterday and today I have really been feeling it and I just had my infusion last week. I stayed home yesterday and my boss sent me home today cause I look like heck. Having a few extra bm's is no big deal but the urgency crept in this morning and it scares me to death to think I may be flaring. I have had this happen before but I was usually sick with a cold or flu. I'm hoping it clears up by tomorrow or i'll hafta call my Doc or GI...Never know which one to call first.

We have a new human resource assistant and she was asking me about my illnes. She said that I need to beat my colitis because she knows several people who have. That is when I had to explain that it is not colitis but Fulminent Ulcerative Colitis and that I would never "kick it" because it was a disease.  I told her I wasn't looking for sympathy just understanding. I gave her a few gross descriptions of how it affected me and she said "sounds like it'll lead to Cancer"....Anyway, so now i'm home again and even though i'm feeling a bit better, depression is sinking in.

I know I don't visit often but I'm looking for some kind words from someone who understands how it feels to have this DD take pieces of your life and turn them upside down.

Danno

Thanks dakotagirl

I do tend to wake up frequently when I'm sick which seems to make things worse. I'm hoping today will go well. I am already starting to feel the Remi kick back some of my symptoms. As stressful as work has been I have to be careful not to overdo it today. I have a lot of very compassionate people who I work with that have been concerned over my latest demise.

Danno

Hello dmacell -- great advice so far. Those days when you feel like things are going backwards can sure beat you up.

My hubby is at the point overall his days are more better than not. Even on a lot of the good days there may be a little blip here and there with a sudden BM urge and once that is over with he feels relief.

He still has a ways to go but considering where he has been he is grateful to be functional. Still needs a lot of rest. My heart goes out to all of you who must work, raise families and have so many others depending on you. My husband is lucky - retired and he has me to "mother" him....lol.

Your HR person needs some sensitivity training me thinks. She needs to be a better listener and not be so free with her opinion. Like I said in another post if they don't have MD after their name I ignore most of what is offered as advice unless I am getting it from here from people who get "IT"

I hope this set back is very temporary for you and you get back to your favorite pastime "enjoying life"!!!

Thanks for all the kind replies!

I am feeling better today and realizing that...Yeah I have a cold. It has been almost a year since i was sick last and that time it was the flu(4 days before my flu shot...doh!). I rarely get sick (cold or flu) but right after my remi I should be a little bit more careful because i know it lowers my immune system. The UC gets wicked so fast I hardly even noticed my sore throat and runny nose. I am already feeling better and with any luck i'll be back to myself by the weekend.

I am a little distressed because our main building will be without water for several hours and I have to shut down all the bathrooms. I would normally just go to another building but the urgency has me a little nervous. It may be gone by tomorrow, but the psycological effects are still there.

Danno

All of the toilets in the facility are pressure assist and won't work without at least 20psi and the tanks are enclosed because people were stashing things in the tanks (drugs or alcohol). There is a wooded area next door that did cross my mind though.

The Builder called me at the last minute to say there would be no disruption thank goodness. I really starved myself the day before for nothing. But all turned out well and I am almost back to normal.

I am the facilities manager for a private non-profit mental health center and it is always a challenging job. When any disruption occurs our consumers get very agitated and my job becomes difficult.

It really bothers me when people try to play down the seriousness of this disease, but don't let it get to you...keep your chin up because we know what you're going through and sooner or later there will be better treatment or dare I say a cure.

NBT

Hi Marty, Been real busy at work trying to get grants for some much needed work on our Main Facility and some of our Supportive living programs. Our people need all the help they can get and are so appreciative.

We just finished having ceramic tile installed in a bunch of the units and it took me two years to complete the project. The job took the contractor (and crew) two and a half days but the rest of the time was spent in paperwork and but kissing on my part. The application alone is about 128 pages. They brought them down the Jersey shore for the day and when they came home their apartments were complete. The old floors were worn down to the plywood and it felt so rewarding to see their faces when they came home. I have four more of these projects that I'm working on and have to juggle the 2 maintenance techs around to fix stuff because I just don't have the stamina to help them out all the time.

I did notice that I seem to get more symptomatic in the fall.

I spoke to a friend of mine who has Psyoriac Authritus(spelling?) and she made me feel so much better.