When rectal meds don't work for Proctitis does that mean it's Crohn's?

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princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 4/17/2008 7:45 AM (GMT -7)   
Just wondering what your opinions are.  Also, if the UC is extremely stubborn does that make it more likely to be Crohn's?
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, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/17/2008 7:51 AM (GMT -7)   
No, this has no bearing on your diagnosis. Rectal meds failed me after 10 years with UC. I had severe disease in the rectum and very little disease in the colon. This is not uncommon so don't stress over the wrong diagnosis. If you look at the statistics, 20-30% of UCers will lose their colon to the disease. This means there can be stubborn disease that cannot get controlled. I am not suggesting that you fall into that category but just want you to understand that stubborn disease does not equal is mis-diagnosis.

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


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/17/2008 8:43 AM (GMT -7)   
No, rectal meds should work for CD inflammation just as well as for UC, even though the inflammation can affect the many layers of the intestinal tract with CD compared to UC which is surfacable only, it should still work, eventually depending on how many layers/how severe the inflammation/disease activity is.

I have CD and have had issues with proctitis many times and the cortifoam works well for me.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Old Hat
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Date Joined Feb 2007
Total Posts : 5151
   Posted 4/17/2008 10:52 AM (GMT -7)   
UC proctitis is known for being stubborn, unfortunately. This has been discussed in earlier threads; I recall that Polarisjeff had recurrent flares with it & asked advice here several times. The fact that you have a specific ulcerated patch that refuses to heal complicates the situation. Did you ever use Cortifoam? It's a 10% steroid rectal foam, which might help you more than Proctofoam, which you listed among discontinued meds in your signature. Proctofoam is only 1% steroid, as far as I know, which calms hemmies but wouldn't do much for major ulceration. Another point is that you should avoid seeds, heavy salt, spices, & fiber that can irritate the ulcerated tissue, acidic things like vinegar, alcohol, citrus in excess. Figure that if you had a raw spot on your skin, you'd want to keep irritating stuff from getting on it-- same principle with your insides. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 4/17/2008 2:16 PM (GMT -7)   
Thank you all for your replies. I guess I was feeling down hearing so many people here who have had UC for a while like me and how they are doing so well with these minor meds when everything I try fails me. (I am happy that so many people are doing well, don't get me wrong, I just want to be well too!). So I guess I was trying to find something to blame for my misfortune.

Old Hat, I do not know if I have ever taken Cortifoam, I don't think so. I have a prescription for hydrocortisone enemas to be filled. Proctofoam seemed to make my bleeding worse, I don't know why.
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, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 4/17/2008 3:34 PM (GMT -7)   
princesscolon, how is the humira working for you? I totally understand what you're feeling- the heavy-hitter meds are barely keeping me afloat!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/17/2008 4:13 PM (GMT -7)   
Rectal meds never helped me either. I didn't respond at all to rectal steroids, and Rowasa made me worse - I can't tolerate Mesalamine. And the amount of colon involved is completely unrelated to how severe the disease is and how difficult to control. I have proctosigmoiditis and was in flare from June 2001 until I started Remicade in March 2006.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/17/2008 7:58 PM (GMT -7)   

Hi Eva Lou,

The Humira is helping some, for a while afterwards I thought it was a miracle only to be slapped in the face once again.  I had a few normal bms, which is almost unheard of for me.  Then the mucus, D, cramps, and pain started.  Still, I am doing a lot better than when I started it, I was having non-stop D before Humira.  I am getting my next injections tomorrow.  I will post an offical update in a few days.  Sorry to hear you're in the same boat as me.  It's nerve wracking to say the least.


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, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 4/18/2008 4:35 AM (GMT -7)   
ugh, I hope you get better results with the Humira soon... for selfish resons, you understand, as I'm holding Humira as a last resort for myself too! I'm going for another high-dose Remicade infusion this coming tuesday- it's been 7 weeks since my last one & I'm not doing *that* badly... no bleeding, not D, but lots of bathroom trips- about 8 per day, 2-4 per night, passing gas & mucous. Very annoying. Try not to bum out so much about your situation- it can be nerve wracking if you let it... I was REALLY stressed out not that long ago & it just does nothing. I sort of look at it in a liberating way- ok, so "we" are using every trick known to modern medicine- that's all we can do. If they don't work, well.... that stinks, but.... This isn't coming out right, but try to go with the flow, ya know? And I wonder too about the Crohns vs UC thing, because of my fisutla. What's up with that?!?!?! But does it matter what it is? not much. well good luck, at least- keep us posted!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 

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