Just venting again -- my own stupid fault

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julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/13/2008 10:16 AM (GMT -6)   
I was doing so well. In fact, I was afraid to post about it because I didn't want to jinx anything. I had a week of feeling like I was finally getting back into remission. I had even finally tapered off the cortifoam after several months of needing it to keep the blood away.

And then...

I had a particularly upsetting day at work and I woke up that night sick and miserable. The blood was so minor that I decided it was just a couple of drops on the paper. Just one bad day. No need to go back to the coritfoam, right? WRONG. Three days later I've got a lot of blood and I'm back where I was before.

I'm just venting as I know that everyone here is so supportive and won't mind the rant. I'm frustrated about few things:
* First, one really upsetting day at work shouldn't put me WEEKS back in my healing, but it did.
* Second, I should have started the cortifoam from the first moment it looked bad. But I didn't.
* Third, I don't want to be using cortifoam as a maintenance drug but nothing else works for me.

Meanwhile, I was supposed to do something today that involved two hours in the car and I had to back out. I HATE that.

Every time I think I'm finally getting back into remission, I'm wrong. And this time, I feel like I can only blame myself for being an idiot and overly optimistic that one bad day didn't mean I need to go back to the cortifoam.

I hate that feeling that I'm walking on egg shells and that any progress I make can be so easily de-railed by one bad, emotional day.

Thanks for reading this. I feel pretty pathetic today.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/13/2008 10:38 AM (GMT -6)   
Oh Julee, please don't kick yourself! It will accomplish nothing more then make you feel more miserable. Just take this as a learning step and hopefully in the future you can take care of impending flares before they hit full blown. Pity parties are always welcome here on one condition - you bring the cake :)


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Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
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quincy
Elite Member


Date Joined May 2003
Total Posts : 30857
   Posted 4/13/2008 11:55 AM (GMT -6)   
Meds are important....and if you aren't on any canna-fixme..one egg isn't going to set you back. It just means your colon is in an inflamed state...still.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/13/2008 11:59 AM (GMT -6)   
We all need to remember the eleventh commandment"

Thou shalt not "should" on thyself.

"Shoulding" raises our stress level and just makes things worse, so really try not to beat yourself up over this.

I see you've tried every 5-ASA without success. Have you ever tried Imuran? 6-MP? Remicade? Humira? "Natural" preparations? Don't give up on yourself over this; if Cortifoam is truly the only thing that will maintain your remission, you may need to use it at some interval all the time. We all hate taking meds, but for me, at least, it's better than being sick.

Hope you soon feel better, Julee.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30857
   Posted 4/13/2008 12:02 PM (GMT -6)   
Julee....we've all been there, and it's definitely frustrating and sometimes leaves us with the feeling of hopelessness.

If cortifoam helps you....then you should consider to find a maintenance level and stay on it. It's not a huge amount of a dosage compared to the liquid form...it's easy to retain at least.

Your #3 complaint should be tweaked to say I don't like to be on the cortifoam, but it helps keep me in a state where I like to be.

Find your maintenance level and remain there.

Curious if you're now near your period.....for women, their colons will be a tad more precarious at that time of month....another reason to coordinate your maintenance meds to lessen your symptoms.

I had lots of ups and downs the first two years....finally realising I'll be a med-lifer. Humbling... but a necessity.

Don't punish yourself, but it's OK to feel sorry for yourself for short time.....then do what you need to do to get back feeling better.

It all takes time. My doc always said "patience"....yeah right....but unfortunately, it's true.

Hang tough,
quincy



Can you not use any
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 4/13/2008 12:51 PM (GMT -6)   
Julee-- I'm sorry to read that you suffered a UC setback. My gastro would say USE WHAT WORKS, and I agree. I understand why you don't want to rely on Cortifoam indefinitely. The point is that your rectum needs something besides the 6MP to function well, right? RE workplace stress-- I know only too well how one super bad day in the office jungle can churn the gut, which we IBDers, of all people, do not need. On Friday I spent over an hour at work discussing the psychopathic behavior of a staff member with a colleague she cultivates, whose cubicle adjoins mine. If we could bind & gag the troublemaker it would rid us of a huge problem, but we can't, & management chooses to ignore most of the frequent hassles involving this person, who has some seniority rights. We just have to tell ourselves that we're not the only ones with workplace issues, though. I recall that THEREAREMIRACLES posted a while back that she lost her temper and verbally blasted a woman in her office who had been annoying everyone for a couple years. Maybe we need to start a separate thread to vent & rant solely about workplace conditions that stress us out. In the meantime, take your meds & be nice to yourself. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/13/2008 1:39 PM (GMT -6)   
Thanks, Everyone. I appreciate the quick and helpful responses. I just started back with cortifoam this morning and I'll continue with it 2 x a day until the blood stops. Then I'll back to my 1 x a day and take it from there.

Someone had posted not too long ago that a GI at UNC had said that cortifoam could be used a maintenance drug. I think I need to relax about how much I dislike the idea of it and just continue as I need. It is -- as you all have said-- worth it to keep the disease in check.

Meanwhile, I'm trying to keep a good attitude and just have a nice, lazy Sunday.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.

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