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

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Ulcerative Colitis
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Posted 4/17/2008 2:45 PM (GMT 0)
Just wondering what your opinions are.  Also, if the UC is extremely stubborn does that make it more likely to be Crohn's?
Posted 4/17/2008 2:51 PM (GMT 0)
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
Posted 4/17/2008 3:43 PM (GMT 0)
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.

:)
Posted 4/17/2008 5:52 PM (GMT 0)
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.])

Posted 4/17/2008 9:16 PM (GMT 0)
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.
Posted 4/17/2008 10:34 PM (GMT 0)
princesscolon, how is the humira working for you? I totally understand what you're feeling- the heavy-hitter meds are barely keeping me afloat!

Posted 4/17/2008 11:13 PM (GMT 0)
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.
Posted 4/18/2008 2:58 AM (GMT 0)

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.

Posted 4/18/2008 11:35 AM (GMT 0)
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!

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