does it ever get better

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anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/11/2008 9:39 AM (GMT -6)   
ok as some of you know that i have been talking with i have been flaring for awhile now. i'm still feeling pretty lousy,the cramping has stopped other then when i smoke a cigerette. but in the mornings i still have that urgency,cramping, and mushy stool. i'm still on pred. i'm sick of taking it i feel as if it should be working better. he has me on pred. way longer this time 60mg x1 week,40mg x1 week, 20mg x1 week. still cant get any other meds out of him. i started at 138lbs. before this flare. i'm down to 122 lbs. i'm starting to get scared about the weight loss. i'm run down no energy,and no appetite.god does it ever get better? and i cant seem to understand why smoking would make me cramp,as it helped me before to get to remission. does anyone have any suggestions to wehy that would be?

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2007 came back normal.

started smoking again to help get in remission 5 days ago

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

started taking philips colon heath with probiotics once a day.

                                                                       

 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/11/2008 11:13 AM (GMT -6)   
Is prednisone the only medication he's giving you? If so, you definitely need a second opinion. Prednisone, as you know, is not a maintenance drug.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/11/2008 11:19 AM (GMT -6)   
The rate at which he is tapering the pred seems awfully fast to me. I despise pred (though I am pred dependent for now), but if you come off it too fast you end up re-flaring to the extent that your overall pred consumption increases. I can't tell you how slow to taper but off the top of my head, 10 mg a week seems awfully fast. Maybe wait 2 weeks or half the reduction rate to 5 a week, or do both.


Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/11/2008 11:28 AM (GMT -6)   
Pamela,
Can you try another doctor? There are many other drugs, your doc is not being imaginative enough!
And that's a very abrupt taper. When I'm flaring, I keep taking 30 or 40 until I'd doing better for a while, then start to taper. How docs think they know when you should start your taper ahead of time, I'll never understand. That's the treatment for poison ivy, not a chronic disease!
Get a stronger probiotic?
Try potato chips, they are easy on my gut and I certainly don't lost weight on them! Not very nutritious, tho...
I hope you feel better soon.
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 first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/11/2008 11:29 AM (GMT -6)   
yes prednisone is the only thing that he has me on other then acetate 25mg rectal suppository that doesnt help at all.i'm also starting to hurt down low like i'm going to start me monthly but it isnt anywhere time for that yet. i've also noticed everytime i taper the joint problem comes back and that is severe. so i'm scared i dont want to taper. but has anyone else lost weight like this?

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2007 came back normal.

started smoking again to help get in remission 5 days ago

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

started taking philips colon heath with probiotics once a day.

                                                                       

 


anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/11/2008 11:33 AM (GMT -6)   
thanks for the replies and yes i'm waiting on a gi to tell me yes or no to except me as a patient. my doc referred me so i'm waiting.

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2007 came back normal.

started smoking again to help get in remission 5 days ago

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

started taking philips colon heath with probiotics once a day.

                                                                       

 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 11/11/2008 1:03 PM (GMT -6)   
Until you get your GI appt, try taking a digestive enzyme with your meals to break down your food items into more managable nutrients your body can absorb. Also, chewable multivitamins and protein shakes will help with the body's nutritional intake and easy on the colon. The shakes really help when you have no appetite cause you can chug them and gain a significant amount of protein for body repair.

I lived off this for awhile and keep weight loss to a min. while my flare went away. I am not offering advice here and this is only what helped for me.

Lactose-free protein shake ~25grams (ensure works well too but is $), 1 gram L-glutamine, 1/2 banana, 1tsp metamucil, chewable multivitamin, 50 billion bifidus + acidophillus probiotic.
I would toss this meal in between my other meals to add extra nutrition even when I wasn't hungry.

Here's where I do give advice: Have you been keeping a food diary? Add the foods that agree with you and skip the ones that don't. Eat more of the "comfort" foods to get more nutrition while being easier on your guts.
Diagnosed w/ Ulcerative Colitis in 1995
32 years old
Living med free  
Currently in remission  

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