when do you stop being a "newbie"?

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/6/2008 5:35 PM (GMT -7)   
So, I had this big realization on friday that I haven't had this disease nearly long enough to have faced the tremendous emotional/intellectual/physical adjustments it requires. Even though I have had it 10 months (tomorrow, actually), 6 of those were on prednisone, which, for me, worked really well, so I lead my life totally normally, running, eating everything, no blood, etc. Now I have been off pred 4 months and am having to learn how to live with UC without the steroids, and I am realizing that this is a long, steep learning curve. not just figuring out foods and the new rhythms of my body, but also figuring out how to absorb the news, letting myself be angry, or sad, and just accepting all of this. I am wondering when I will quit feeling like I have accepted it. I know that like everything else about this DD we all experience it differently and we adjust differently, but I am wondering, when did you start feeling like you could let go of your sadness/disappointment/anger, etc, and when did you feel like you understood what was going on enough to not be a "newbie"????

as for my earlier post, my "brewing flare" is not worsening. not yet improving, but definitely not declining, so thanks for your advice and here's hoping Imuran does its job.....
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 1/6/2008 6:08 PM (GMT -7)   

  I've been diagnosed for 11 years and have truly had this forever.  I still feel like a "newbie".  I feel like just when I start to think I have a handle on it, it turns in the other direction.  I've been through many ups and downs though and the meds that used to work no longer do.  It has morphed into something new I guess.  Symptoms are still the same but I used to be able to "compartmentalize" I guess and just have it be something I occasionally had to deal with.  This last flare has gone on for about 18 months (with varying degrees of severity) and it has seeped into my personal life and my school life more than ever.  I started seeing a psychologist who deals with chronic illness because I think I have to learn a better way to handle it at this point.  Once again, what used to work isn't working anymore.  So, I think I'm still a newbie... 11 years into the game!

Becky


29 years old; diagnosed since 1997 (but I've had it forever)
Current meds:
-Prednisone 10 mg!
-Re-trying Imuran; I'm at 75 mg now.
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium + Vitamin D(for my steroid-affected bones)
-Buspar and Xanax for anxiety
-Prenatal vitamins (for the extra stuff, not for pregnancy)
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/6/2008 6:17 PM (GMT -7)   
I feel the same as Becky. Even though I've had this for 15 years, there are times that I don't know what the heck is going on. Even though I have accepted this DD, I still try to fight it - meaning that there are times that I wish it wasn't so (denial maybe?). I also have days where I feel like doing nothing but cry because of all the things I have missed out on over the years. But on a brighter note, I have those wonderful days that nothing is going to bring me down - even if I'm flaring with this disease. So I guess what I'm trying to say is that with Uc can come a roller coaster of emotions and, at least for me, I do the best that I can and only do what I am able. I don't set high expectations on myself because I don't want the disappointment of letting myself down. And I'm totally ok with that. I've come to terms with that a long time ago.


 @--->--SHERRY--<---@
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~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
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"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/6/2008 6:31 PM (GMT -7)   
I totally accept the DD, yet I still harbor the fantasy that, with Remicade, I'll never have another bad flare. Because the problems come and go, it's an up and down process. I'd say it took me a good three years to adjust my self-image to accommodate a chronic disease. But then I was so sick at first, I didn't have the energy to do much physical or psychological work.

It helped me a great deal to talk about it with the people I'm with every day. My husband, my team at work. I found that when I explained why I had to miss work sometimes and why I couldn't eat some things and why I barely had enough energy to walk in the building in the morning, everyone was very understanding and supportive. Their acceptance of me as being still valuable in their lives helped me like myself again.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 1/6/2008 9:55 PM (GMT -7)   
It's a lengthy learning process. I started feeling less a newbie about 3 1/2 yrs after diagnosis, when I was finally able to arrange a polypectomy. At that time, in the early 1980s, the hospital where my gastro was affiliated still required patients to stay over the night before + night after the procedure. I was absolutely terrified of going there, but my gastro had promised to show me the polyps once they were extracted. Somehow that enabled me to stick it out. Through the fog of Demerol/Versed and whatever other sedative they gave me, I heard the gastro say: " O.K., you wanted to see your polyps; here they are!" She was standing at the foot of my gurney, holding them up in the kind of clear plastic container that class rings used to be packed in. THAT struck me as funny-- so I felt very relaxed, for the 1st time in several yrs of dealing with The Colon Problems. It was a turning point in my UC road. There have since been several others! (But that's true of life in general, I think.) / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 1/7/2008 12:32 AM (GMT -7)   
LOL OH....interesting how seeing what's "inside" gives us some resolve. I feel the same way when watching c-scopes.

I'm feeling like a newbie with life in general..I'm not liking the changes with me or those around me too much at the moment. UC is an added inconvenience when a flare starts for me (I do the Mr. Bean disgusted faces) ....but the heightened insight and feelings that go with it can definitely add extra emotional and physical exhaustion....especially when dealing with other stuff at the same time. It makes the other stuff seem more and the other stuff makes the UC seem more.

I need to get a grip...maybe tomorrow...LOL!!!

quincy


*Heather*Status: mini flare Dec 28... increased enemas to nightly
~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 ....bromelain 1 - 2x 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 !!!


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/7/2008 7:48 AM (GMT -7)   
I appreciate your thoughts. sounds like I have a long road ahead.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 1/7/2008 2:03 PM (GMT -7)   
Knowledge is power.. as is experience. Life isn't static, for we never know what tomorrow will bring.

Trying to find the middle road in living with and dealing with seems to be a good way of functioning.

I have two questions for you....
How do you think you're REALLY doing?
How do you REALLY want to be?

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~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 ....bromelain 1 - 2x 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 !!!


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 1/7/2008 2:13 PM (GMT -7)   

I have been diagnosed for a little over a year and find myself on a emotional roller coaster a lot.  I agree with others, some days you when you think you have a grip on it, you get another down swing.  As I posted earlier, relationships are my biggest challenge at the moment.  As if the disease doesnt make you feel unattractive at times as it is!! Its been really hard on me as well and am considering setting up a meeting with a therapist that specializes in chronic illness. 

Good luck, I try to keep telling myself there is always someone worse off than me.  But the bottled up feelings seem to pour out some days!

 


Amy
31 yr old
Pancolitis since oct 06
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan
Trying to stay positive!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 1/7/2008 2:16 PM (GMT -7)   
I think comparing to others that are perceived as worse off only negates your own feelings....for you DO feel bad and shouldn't be measured on anyone else's measuring stick...when do you ever get bad enough that others will be compared to you?

Take the good days with the bad...it's always on a constant anyway. You can't make yourself feel better at the woes of another.

It is what it is....and that needs to be addressed. You are allowed to feel bad and allowed to feel good.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~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 ....bromelain 1 - 2x 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 !!!


chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 1/7/2008 4:18 PM (GMT -7)   
UCLIFE,
 
  I'm about your age and feel a huge challenge as far as relationships go too.  If you ever want to compare thoughts, my email is in my profile and I would love to hear from someone in my same boat!
 
Becky
29 years old; diagnosed since 1997 (but I've had it forever)
Current meds:
-Prednisone 10 mg!
-Re-trying Imuran; I'm at 75 mg now.
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium + Vitamin D(for my steroid-affected bones)
-Buspar and Xanax for anxiety
-Prenatal vitamins (for the extra stuff, not for pregnancy)
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/7/2008 8:25 PM (GMT -7)   
I have to agree with everybody else, this disease still has its "surprises" all the time, even after 12 years. I wasn't as sick when I was first diagnosed, so I was in denial for a long time. Then I felt I had accepted it and totally followed doctor's orders, got worse, went against the doctor, got worse. Then I would say in about 2004, 9 years from diagnosis, I REALLY accepted it. It took a one inch hole going through me to make me accept how serious this was. That's when I started researching, really watching my diet, trying probiotics, etc. Unfortunatley in my personal experience, I haven't seen much of a difference either way. But that doesn't mean I am going to stop trying to do what I can. I guess the biggest surprises have been that I have not found one single medicine that has really helped yet. Also, lately I have these new problems, like joint pain, my eyes seem more sensitive to light... new things popping up. It really sucks! I am glad I can share with you all and I wish they would find a cure already! We deserve it!
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Tapering Prednisone again :( for joint pain, Glucosamine 500 mgs, Vitamin B

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