Why am I declining again?

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Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 12/17/2008 8:12 PM (GMT -7)   
I'm bummed, I had just started to build bladder size again (hard to do when you're pooing so much). But now I'm starting to have some of the old symptoms that were so bothersome. Mostly, feeling like I need to go throughout the day -- spasms, I guess -- but often only putting out something that looks like blood and sand. And getting gurgly gut early in the morning that rob me of that last hour of sleep.
I can't figure out what I'm doing wrong. Is the new probiotic not strong enough? Was the rotation diet my Naturopath had me on (basically, don't eat the same thing but every four days) really making that much difference? It is so hard because I eat away from home so much. I have been eating a little of some of the things I tested a little sensitive to, like soybean (oil) and egg whites which are so hard to avoid, but is that it? I've stayed completely away from the wheat!
 
And yes, q, before you ask, I've been using the rectal meds but they don't seem to be helping  much right now. 
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29958
   Posted 12/18/2008 3:23 AM (GMT -7)   
Hi..I remember those symptoms well. How long have you been using the Rowasa nightly?

How many times a day are you going? no dirarhea?

Are you close to your period?


When exactly did you start having any symptoms of change?

What probiotic are you on exactly:? Replete forte?

It wasn't the rotation diet that caused your flare.

The Rowasa takes a while to kick in if you just started using them...
you might also consider to up the Asacol to 8 daily...4 twice daily..

You could ask the doc for a prescription of dicyclomine..I started with 10mg used a few times a day. Amazing for the butt throbbing and gurgling.

You could use a suppository..either 5ASA or steroid...during the day..but the Rowasa should kick in soon.

Hang tough...
quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/18/2008 8:18 AM (GMT -7)   
Don't blame yourself for your symptoms. If you are taking your maintenance meds, getting plenty of rest, and taking overall good care of yourself you are doing all you can. UC is unpredictable. You can flare at any time or you can stay in remission. The only truth about UC is that the patient has a better chance of staying in remission if taking maintenance meds.

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


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/18/2008 8:39 AM (GMT -7)   
I agree with Sue. You shouldn't blame yourself and we can do the what ifs all day and not get anywhere. You are aware of your body and that something is wrong so that is a step in the right direction. But never blame yourself especially if you are doing everything right.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 12/18/2008 1:02 PM (GMT -7)   
Thanks. Ugh, I just want to have that good, no I really don't have to go isn't is amazing, feeling again. It was so nice for a few months!

Is dicyclomine different than immodium? It sounds similar. Even small doses of immodium -- which can be great -- are not something I want to do regularly because it makes me feel constipated instead.

I'm going to stick to the rotation diet again, as best I can. And go back to the Replete instead of the Forte, even if it is expensive. Oh, and no more cheese or cream in my coffee, I forgot I had gone lax on that. I've given up a lot, but I think I need to be more strict. It worked before! My naturopath thinks long term remission is achievable if I can get the yeast out of the colon (I'm sure that's oversimplified, but that's the general idea). But ups and downs are to be expected, I should know that...
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 

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