Vent!! and request for help

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Schmoner
Regular Member


Date Joined Apr 2007
Total Posts : 26
   Posted 12/26/2008 3:16 PM (GMT -6)   
Ok, I apologise in advance but I'm getting to the end of my teather!
 
To cut a long story short - diagnosed over 2 years ago with Ulcerative Proctitis.... (latest scope Oct 2008)
I've never had more than 4 weeks without pred.....
I'm FLARING yet again!...........
Trying with the Predfoam and Pentasa suppository, but the flare is winning......  contacted my consultant and what was his answer - Pred Pred Pred, but I refuse to take it!
 
What can I do people, i'm really feeling down and low, will I ever get a break? I just don't want to take the pred yet again!
Why is nothing working for me, why? ( I really thought the Imuran would help, but alas.....no)
 
How can 15-20cm cause so so so much trouble??
 
Thanks for listening - again
 
Craig
Diagnosed with UC March 2007 - Proctitis
 
Currently Taking:
 
Asacol 3 Tabs (400) x 3 Daily
Prednisolone 20mg AGAIN Daily 
Iron Supplement 200mg 1 Daily
Omeprazole 20mg (Acid)
Azathioprine 150mg Daily
Predfoam 20mg nightly
Pentasa 1mg Suppository Daily
Various Asthma Medications (List too long)
Calcium supplements 400mg twice daily
Multivitamins + Minerals once daily


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 12/26/2008 3:21 PM (GMT -6)   
Hi...it seems for some of us, UC limited to the rectum can be more of a pain to treat than when it's higher up.

Curious...what exactly are your symptoms?

q
*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 !!!
 


Schmoner
Regular Member


Date Joined Apr 2007
Total Posts : 26
   Posted 12/26/2008 3:27 PM (GMT -6)   

Hi Quincy,

The usual with me, constipation, white knucklers, blood, mucus, tenesmus.

It also seems to be afecting me mentaly now, more than ever, despite the anti-depressants

:(

Craig


Diagnosed with UC March 2007 - Proctitis
 
Currently Taking:
 
Asacol 3 Tabs (400) x 3 Daily
Prednisolone 20mg AGAIN Daily 
Iron Supplement 200mg 1 Daily
Omeprazole 20mg (Acid)
Azathioprine 150mg Daily
Predfoam 20mg nightly
Pentasa 1mg Suppository Daily
Various Asthma Medications (List too long)
Calcium supplements 400mg twice daily
Multivitamins + Minerals once daily


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 12/26/2008 3:40 PM (GMT -6)   
     I also have ulcerative proctitis and yes, it sure is painful.  Right now I am in remission, but I suffered a seven month flare this year.  I can understand how you feel about prednisone.  I hate taking it too, but it is the ONLY drug which helps me into remission.   I had to take 40 mgm for one week, then down to 30 mgm for a week, 20 mgm the next week until I reached 10 mgm, then I lowered to 5 mgm for a week and finally reached remission.  Whenever the doctor started me at 30 mgm, it just didn't cut it...boom, flared within two weeks of weaning.  I suppose the prednisone along with the 6MP, cort enemas and Colazal worked finally!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 12/26/2008 4:57 PM (GMT -6)   
Craig...yeah, that describes mine as of late...

I would suggest you get back on a rectal med...if you can do Rowasa..try that firstly and stay on it.

Constipation is classic for UP.

Ask the doc for an antispasmodic..I use dicyclomine..

I can truly relate to the emotional side of having UC flares that aren't responding quickly.

You don't have to go on pred if you don't want to...I would strongly advise the 5ASA retention enemas firstly, and if they start to work..stay on them till you're feeling normal and then taper to a maintenance dosage...

quincy
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ 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 !!!
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/27/2008 3:51 PM (GMT -6)   
I understand why you don't want to be on prednisone. I've been on 40mg for over a year, and finally down to 20. However, it makes me a little better. I would much rather go with the swollen face and side effects of the prednisone over my pancolitis. I do not get better with medications either, and we're opting for surgery. I'm tired of being sick and I am definitely tired of the prednisone. It has caused more troubles for me than many would like to know.

I do wish you luck. I know prednisone is the devil's advocate. Have you attempted to alter your nutrition for a week or so? After switching to rice milk, and having no carbs, red meat or fried foods I can tell a difference in my pain and discomfort. It does take me about a week or more before I start noticing the change, but it's worth it when my UC is super bad. I was dx almost 2 years ago and have yet to be in remission, but I do understand the constant discomfort and frustration!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/27/2008 4:19 PM (GMT -6)   
Proctosigmoiditis can be absolutely awful. I was in constant flare for the first four and a half years after diagnosis. I was on steroids the majority of the time, but even they didn't help much after the first six months. I was on the verge of seeing a surgeon when I finally got into remission.

I have never been able to see any changes related to supplements (other than probiotics) or diet. I wish you luck and hope you soon find a solution that helps you.
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.


Schmoner
Regular Member


Date Joined Apr 2007
Total Posts : 26
   Posted 12/28/2008 11:09 AM (GMT -6)   
Thanks everyone, some interesting stories, it's nice just knowing you're not alone!

Craig
Diagnosed with UC March 2007 - Proctitis
 
Currently Taking:
 
Asacol 3 Tabs (400) x 3 Daily
Prednisolone 20mg AGAIN Daily 
Iron Supplement 200mg 1 Daily
Omeprazole 20mg (Acid)
Azathioprine 150mg Daily
Predfoam 20mg nightly
Pentasa 1mg Suppository Daily
Various Asthma Medications (List too long)
Calcium supplements 400mg twice daily
Multivitamins + Minerals once daily

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