Two off days in a row

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dmacell
Veteran Member


Date Joined Nov 2005
Total Posts : 1003
   Posted 9/19/2007 12:11 PM (GMT -7)   
 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
Did I mention how much I enjoy life?
 
Fulminent Ulcerative Colitis
2X500mg Pentasa 2x day 
multivitamin
Remicade Remission


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 9/19/2007 12:49 PM (GMT -7)   
I hate when that happens! Everyone else knows best! (Heavy on the sarcasm)

I really hate it when those down days smack me! Have you been sleeping well? I find extra sleep will help me - also, if I'm low on sleep (like today) I'll have one HECK of a bad day :( I'm sleeping in tomorrow! It's rough 'cause the last several days have been so good. sigh...

We sure do understand and we're glad you decided to vent to us! So, hang out today. Maybe have a pity party. (I know I'm feeling like having one!) Then get on with it tomorrow if you can! If not - call the doctors.

Always remember the good days!

Hang in there :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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dmacell
Veteran Member


Date Joined Nov 2005
Total Posts : 1003
   Posted 9/20/2007 4:15 AM (GMT -7)   

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


Did I mention how much I enjoy life?
 
Fulminent Ulcerative Colitis
2X500mg Pentasa 2x day 
multivitamin
Remicade Remission


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 9/20/2007 5:05 AM (GMT -7)   
Hi Danno, it's good to see you again or maybe not - depending on how you look at it. I'm sorry that you've been feeling ill again but I'm glad you are having an improvement already. Yes, I know what it's like to be going good and then Uc rears its ugly head only to slap you down a notch or two. It gets depressing, frustrating and scary. Hang in there and remember to pamper yourself on the not so good days because you deserve it.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
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Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 9/20/2007 5:55 AM (GMT -7)   
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"!!!

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 9/20/2007 6:28 AM (GMT -7)   

Hi Dammo, feel better soon! Try not to let ignorant people add to your frustration. My daughter is also having a few bad days. She hasn't gone to school yesterday or today. And it is almost exactly one year to the day that this crappy disease (pun intended) hit her. Of course, we are both remembering last year and worrying that it might be starting all over again. She started back on the enemas nightly about a week ago and I think tonight will add the hydrocortisone enemas for a few days.

Hopefully you and she will start to feel better immediately. yeah


--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday
Rowasa - 7/07 tapering slowly
 
hydrocortisone enema - alternating with Rowasa; 3/3/07 - began to taper off hydrocortisone sloowwly! No more hydrocortisone enemas!
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
Keeping our fingers and toes crossed!!


dmacell
Veteran Member


Date Joined Nov 2005
Total Posts : 1003
   Posted 9/20/2007 1:49 PM (GMT -7)   

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

 

 


Did I mention how much I enjoy life?
 
Fulminent Ulcerative Colitis
2X500mg Pentasa 2x day 
multivitamin
Remicade Remission


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 9/22/2007 5:48 AM (GMT -7)   
dmacell said...

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

 

 

just a thought. if you are ever in a situation again where the building will be without water fill up a few 5 gallon buckets with water, that way you can flush the toilet by dumping water into it.


dmacell
Veteran Member


Date Joined Nov 2005
Total Posts : 1003
   Posted 9/22/2007 2:18 PM (GMT -7)   
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.
Did I mention how much I enjoy life?
 
Fulminent Ulcerative Colitis
2X500mg Pentasa 2x day 
multivitamin
Remicade Remission


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 9/28/2007 8:04 AM (GMT -7)   
Hows things goingnow then Danno. I haven't seen you about in ages,remember to keep them stress levels down buddy, if you can because i know your job can get very stressful.

Keep er Lit
Marty
keep the faith

Pred40mgs/asacol/proctifoam/omoparazole 40mgs/Domperidone10mgs x 3 daily




http://www.myspace.com/martybuzz1<FONT]


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/28/2007 8:59 AM (GMT -7)   
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


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Home Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 9/28/2007 9:20 AM (GMT -7)   
Bennie said...

And it is almost exactly one year to the day that this crappy disease (pun intended) hit her. Of course, we are both remembering last year and worrying that it might be starting all over again.

I had the same experience. I returned to the ER almost exactly a year to the date of my original diagnosis. This led me to believe there may be a seasonal component... either SAD and/or seasonal allergies might be contributing factors. I've read alot of folks experience flares in spring and/or fall. Mine hit around Feb/March. Yet another interesting piece to the puzzle.
 
To the original poster, I agree HR chick needs to learn compassion and to keep her mouth shut if she has nothing constructive to offer.


Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
No explanation for right side pain and thickening of bowel wall
 
Maintenance dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


dmacell
Veteran Member


Date Joined Nov 2005
Total Posts : 1003
   Posted 9/28/2007 2:11 PM (GMT -7)   

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.
Did I mention how much I enjoy life?
 
Fulminent Ulcerative Colitis
2X500mg Pentasa 2x day 
multivitamin
Remicade Remission

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