Proctitis that worsens that UC?

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WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 8/4/2008 9:43 AM (GMT -6)   
Hi,
I was diagnosed back in 05 with proctitis. I have had 2 major flare ups since. It is only limited to ONE inch of my rectum but very severe. I was wondering about the folks out there with proctitis...has yours gotten worse and spread more into the colon? How long did it take? Is proctitis just a precurser for full blown colitis?
 
Thanks!
ulcerative proctitis - march 05 diagnosed
current status - bad flare
colazal - 9 pills
prednisone -20mgs(tapering), canasa -AM, hydrocortisone enema - PM
VSL#3
fish oil, flaxseed oil, bee pollen/royal jelly & garlic, calcium & vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
ACCUPUNCTURE
 


tabitha m
Regular Member


Date Joined May 2007
Total Posts : 139
   Posted 8/4/2008 11:44 AM (GMT -6)   
Hi
 
I was diagnosed 5 years ago with Proctitis and unfortunately was diagnosed with Pancolitis 12 months ago . Not sure how common this is but thats what happened to me . Lets hope you are lucky and stay with Proctitis .
 
Kerry
Diagnosed Proctitis 2003
leaped to Pancolitis May 2007
bye bye Pred (fingerscrossed )!
2000mg pentasa a day
omega 3
Allergic to Sulphalizine
In remission since june
Multivitamin and calcium supplement
 
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 8/4/2008 1:22 PM (GMT -6)   
Hi - I started out with moderate-severe UP in 2005 and my last scope showed ulcers and inflamation had spread about 15 inches up in the colon. 
Of course, my result may be from not taking this disease seriously and not taking my prescribed meds or seeing my GI.  I am making up for it now though.
 
Also I have read on this board numerous times that having severe protitis is often harder to deal with than having mild colitis farther up and that there is percentage of protitis sufferers whose colitis never spreads beyond the rectum.
 
 



UC diagnosed 10/05, first symptoms 1983
canasa and lialda daily
Trying out Digestive Fitness Probiotic
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30985
   Posted 8/4/2008 1:41 PM (GMT -6)   
Hi...that's the most difficult to deal with I think...especially if it's limited to that area. The other thing is that it could be CD rather than UC.

Did you have a complete c-scope? Did you happen to have any inflammation around the cecum?

You're using rectal meds...that will help immensely and keep the areas above the affected site calm.

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~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 ....zymactive 3 - 5x 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 !!!


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 8/4/2008 2:10 PM (GMT -6)   
I am now using the canasa and will stay on it forever if I have to. With my previous flare in march (after I got out of the hospital) and when I was off the prednisone and better...I stopped all rectal meds and just took the colazal.

I did have a colonoscopy back in february and a sigmoidoscopy in July. Both showed just one inch of my rectum with severe proctitis.
ulcerative proctitis - march 05 diagnosed
current status - bad flare
colazal - 9 pills
prednisone -20mgs 10mgs(tapering), canasa -AM, hydrocortisone enema - PM
VSL#3
fish oil, flaxseed oil, bee pollen/royal jelly & garlic, calcium & vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
ACCUPUNCTURE
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30985
   Posted 8/4/2008 2:16 PM (GMT -6)   
Ask your doctor again if you have any inflammation around the cecum...do you have the results of the scope or does he?

I still think you should lessen the fish oil, flaxseed oil and garlic at least....that plus the d all increase blood circulation..might have something to do with the inflammation...it is a very vascular area of the body.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~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 ....zymactive 3 - 5x 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 !!!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/4/2008 4:43 PM (GMT -6)   
I was originally diagnosed with ulcerative proctitis- via flex sig. Did ok with my meds for a long time, about 2 1/2 years, then went off them. Stupidest thing I ever did... my proctitis turned into full blown UC, diagnosed via many flex sigs & colonoscopies. Am just now getting back to some semblance of normality, after severe flare for 2+ years. I owe my current "good" health more to Metamucil than anything else! But I still take my meds faithfully, & will probably do so forever. I think it's fairly common for proctitis to morph into UC.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 8/4/2008 8:22 PM (GMT -6)   
i was initially diagnosed with ulcerative proctitis and doc said it wouldnt spread and thats all i would ever have...
well i have since been diagnosed with pancolitis (severe) and it affects my entire colon.

so it could change. or not.
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 8/4/2008 10:45 PM (GMT -6)   

Hi there, I originally had left-sided UC and for the past 5 years or so I have only had Ulcerative Proctitis, but a bad case.  I haven't had it move up my colon.  I am on very strong meds so I  don't know if that has prevented it from moving upwards or if it's just a coincidence.  Try not to worry about it too much because worrying will only make you worse.

 


Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/4/2008 11:26 PM (GMT -6)   
Our son was originally diagnosed with CD, which was recently changed to UC (pancolitis). During his most recent scope, he now has ulcerative proctitis and Canasa was added to his regimen.
Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband with ankylosing spondylitis and psoriatic arthritis.


mitch33
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 8/5/2008 1:24 AM (GMT -6)   
Hi I was diagnosed with 14cm protitis in feb this year by colonoscopy.  My symtoms did not improve with 5asa or pred.  After a flexi sig in May admitted for severe left sided disease 40cm, so in less than twelve weeks I was on a two week stay on IV steriods. Currentley just off steriods and on 1g pentasa enema twice daily, still bleeding due to go back in Sept to consider azathioprine.
 
It seems to be all or nothing with this condition I am just waiting for the nothing.
 
 
Colonoscopy Feb 2008
left sided disease 40 cm
1g Pentasa sup
400mg iron
Pred (tapering from 40 mg)
IV Iron


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/5/2008 8:05 AM (GMT -6)   
I was originally diagnosed with UP back in '92. I was young and stupid and didn't follow my medicine regimine as well as my bad lifestyle. I believe that mine has spread to left sided because of that. However, it depends on many factors whether or not it will spread. Some people can be faithful to their medications and still have it spread while others can be negligent and never have it spread. So I believe that there is a genetic link to whether or not it will spread. If you are genetically apt to get it, using rectal meds can slow the progression possibly. It's a flip of the coin really. No one can say if it will or not.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/5/2008 8:14 AM (GMT -6)   
I was diagnosed with proctitis in the 1980s, was faithful to treatment and still ended up with UC. Most of my disease was limited to my rectum, in fact only about 2cms up. Nevertheless after years of maintenance medication and taking care of myself, I ended up losing my colon and rectum to the disease. I don't think there is any way to predict whether or not your case will improve or get worse. Just do all the right things in terms of taking care of your health.

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

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