Worst I've ever been....

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Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 6/28/2009 8:37 PM (GMT -6)   
Well.... I'm back.. and still flaring...
 
   I have been so exhausted of this whole disease and all the stresses of my life (marital CRAP) that I feel like just giving up sometimes. I don't mean biting the farm or anything like that,... but I feel like crawling in bed and not getting out..  I have  fallen into such a depression that I started missing doses of my meds, my job performance has been going downhill and my overall sense of well-being is in the gutter..
 
  Now I'm flaring still, but worse than ever.. I have blood everytime I poopie and sometimes all that comes out is blood and clots. red toilet water is just a second thought now..... My Dr. prescribed me prednisone, but I'm so terrified to take it.. I have to admit that I know that is stupid, but I'm terrified...
 
   I started back on my medications, just today after a horrid night of cramping and blood... I feel so scared...
 
  I'm taking Lialda again, 4 pills a day, 2am and 2pm and Rowasa nightly and Canasa in the am... I'm hoping I haven't screwed my body up so bad that this doesn't work... If I don't feel better in a couple of days.. I guess I'll bite the bullet and start on the pred.. 
 
  My Dr. says  if I do start it, to start at 40mg.. then when I get a remission started I can start tapering..  
 
  Sorry if I sound like a baby, but I'm just putting my feelings out there and maybe that will help me start healing, both emotionally and physically...   I've always handled things pretty well... but lately I feel like I can't handle anything...
 
Diagnosed with U/C January 31st, 2005, IBS on July 21st, 2006 
 
  Status as of January 9, 2009:  Flaring for the last 3 months with blood, mucus and my stomach is so bulging out!  Meds are Lialda 2 pills 2x a day, Rowasa nightly, Canasa every am and after every BM... Culturelle 1x a day, plus an occasional Xanax if I feel stressed out.... Ambien at night for sleep... geez..
 
               http://www.myspace.com/77016897         


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 6/28/2009 9:07 PM (GMT -6)   
There's not much advice I can offer you but.... (((((HUGS))))) anyway
Sam(antha)
20 year old college student diagnosed in March 2005
Remission since January/April 2006-->THREE YEARS!!!!!
Trying Colazal 3 750mg x2-->Found it to be better than Asacol
25mg Elavil
75mg Effexor XR for GAD

"If you don't like something, change it. If you can't change it, change your attitude."
Maya Angelou"


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/28/2009 9:10 PM (GMT -6)   

The trick is to get a head of the flare.  I understand your reservations about not taking prednisone.  Are you taking rectal meds?  If not I encourage you to give those a fair shot before starting prednisone.  Don't wait too long; you don't want to get to the point of weight loss, dehydration, or weakness. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 6/28/2009 9:57 PM (GMT -6)   
How long does it take for the steriods to work? I am weak and nauseaous and trying to fight dehydration. After being in bed for the better part of 4 days I felt like getting up today for a bit of shopping w/the hubby. Well, after a few hours and a D episode in the mall I almost passed out at home from weakness. I've never experienced this before. Not sure I can work like this. I'm starting to get depressed again. How do you keep up strength during flares?

Dee-39yrs old wife and mom of 3 boys
UC since 2004/PTSD/Panic Attacks/Depression/myofacial pain syndrome 2009-750mg colozal/1,000mg canasa/.5mg clonazepam, 4mg Lexapro-/Fioricet/Prilosec OTC-2x daily, Entorcort 9mg, Triple Strength Fish Oils/Colonoscopies-4
 


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 6/28/2009 10:42 PM (GMT -6)   
Yea, I'm on rectal meds and oral meds... for the first 3 years of my disease I could keep it under control with only rectal meds.. now it's oral AND rectal meds.. and probably prednisone if I can't get this to simmer down in the next few days.. I have the presctription for Prednisone filled, just gotta work up the nerve to take it.. I was tempted today to go to the hospital, but didn't.. I don't think I'm sick enough for that but my depression has me thinking irrationally lately...
Diagnosed with U/C January 31st, 2005, IBS on July 21st, 2006 
 
  Status as of January 9, 2009:  Flaring for the last 3 months with blood, mucus and my stomach is so bulging out!  Meds are Lialda 2 pills 2x a day, Rowasa nightly, Canasa every am and after every BM... Culturelle 1x a day, plus an occasional Xanax if I feel stressed out.... Ambien at night for sleep... geez..
 
               http://www.myspace.com/77016897         


P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 6/28/2009 10:53 PM (GMT -6)   
The depression is just an added burden. Its difficult enough trying to cope w/this disease without having all the fear and bouts that the depression brings. Its hard to make good decisions during flares when depressed and/or having panic attacks. cry
Dee-39yrs old wife and mom of 3 boys
UC since 2004/PTSD/Panic Attacks/Depression/myofacial pain syndrome 2009-750mg colozal/1,000mg canasa/.5mg clonazepam, 4mg Lexapro-/Fioricet/Prilosec OTC-2x daily, Entorcort 9mg, Triple Strength Fish Oils/Colonoscopies-4
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 6/29/2009 2:15 AM (GMT -6)   
Hi Susie....sad to hear things have gotten worse for you.
Since you were lax in taking your meds, definitely give them a fair try.

Your emotional state could be helped with therapy and possibly antidepressants.

I would put off pred forever, because the emotional ups and downs could possibly be a huge issue for you considering what you're going through ... plus you are depressed, which could also be an issue. But, I'd put it off forever...my perspective on that since there are also physical issues with pred that could interfere with day to day functioning.

Yes, I'm anti-what starts out to be a short process could be a very long process getting off-pred.
Before you start that, maybe consider steroid enemas in the morning, Rowasa at night?

You could also consider a 10 day taper of pred from whatever dosage to 0 in 10 days....

Bentyl for cramping could also be helpful..
 
Hope you start to see some progress regarding your flare symptoms...but to me there are other orals/rectals before systemic pred. 


quincy


*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 6/29/2009 1:21:31 AM (GMT-6)


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 6/29/2009 4:11 AM (GMT -6)   
If you are scared to take Pred, which i don't blame you, ask your doctor about Entocort. It is also a steriod with less side effects. It does take longer to work, but it is worth it if you can get away with not taking pred
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 6/29/2009 6:55 AM (GMT -6)   
I am sorry you're feeling so bad. When I first had this disease, I could keep it under control with just rectal meds, not anymore...
 
I hope this plan of action works and you are in remission soon.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 6/29/2009 10:56 AM (GMT -6)   
Thanks everyone...

Quincy.. I have asked my husband to set us up with marriage counseling and it's been over a month and he hasn't lifted a finger to get us going.. I wanted him to do it because when I picked out the counselor last time, he said he didn't like her and it's looking more and more like the end.... I'm not living with him anymore, but I am here for now because I'm so sick and where I live there is no air conditionoing.. the triple digit temps just kill me... I do have a line on another place that is bigger and does have A/C so hopefully I'll be moving there in the next week or so... As far as the pred... I understand what you are saying and the concerns you mentioned have also been huge concerns for me too... All I need are more mood swings and irritability.. ya... that would be good.... hahahaha... not to mention the weight gain, which I'm still trying to lose from the last time I took anti depressants... Such a vicious cycle.... Believe me, I'm putting it of as long as I can... I think that once it's finally REALLY over... then I'll be better off and less stressed out all the time...

I guess I have to realize that my disease has reached the point where I can't AFFORD to go off my meds.. even for a little bit.. I must stay on them and never go off..

Thanks for all the replies everyone... I really appreciate it and it's amazing how you can always count on this site when you need some support! I refer it any chance I get... My doctor and I never thought I'd get to this point.. usually most people who are diagnosed with Ulcerative proctitis don't have much progression if any.... but in my case I guess that's NOT the case...
Diagnosed with U/C January 31st, 2005, IBS on July 21st, 2006 
 
  Status as of January 9, 2009:  Flaring for the last 3 months with blood, mucus and my stomach is so bulging out!  Meds are Lialda 2 pills 2x a day, Rowasa nightly, Canasa every am and after every BM... Culturelle 1x a day, plus an occasional Xanax if I feel stressed out.... Ambien at night for sleep... geez..
 
               http://www.myspace.com/77016897         


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 6/29/2009 3:11 PM (GMT -6)   
Susie....you and your husband do not need marriage counselling...YOU need counselling for yourself to regain your "self" to figure out why you're still with your husband and letting him run the show and you're the one who keeps leaving and going back with the same results that are worse each time.

Let me tell you with great certainty that life is very short...you deserve to have one and be happy. I know I keep going there, but I base it on what I would do/have done....we risk much and tend to sacrifice ourselves for naught.

Your path of hope has to change direction.


I still think antidepressants might be worth another try...which ones were you on? Weight gain from that, if it helps your emotional state to think more clearly would be much better than weight gain from pred plus possible not good mood ups and downs.

Did I mention therapy for you??? someone to listen and help with your thought patterns? There's no doubt you are a strong person who can survive on your own. Maybe your value system needs tweaking?

I do hope you can get into another residence..I wouldn't be able to survive without AC..let alone the temps you're saying you've been experiencing.

Pred....could not be a very good thing in your situation. Maybe the immunosuppressants would be a better choice such as 6MP...

When was your last c-scope? maybe time for just a sig-scope.

Going off meds has never worked for you....we learn.

Keep us posted as to how you're doing.

Although it may not sound like it or even "know" you, I do worry about you.
quincy xx
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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