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proctitis/Crohn's flare.

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Posted 9/21/2013 11:26 PM (GMT 0)

Just wondering if anyone could tell me what their proctitis Crohns flares feel like. I was diagnosed as having a mild case of Crohns almost 5 yrs ago and other than back and forth scraping like pain with BMs have had the proctitis issues under control (for about 2 1/2 yrs now). Awaiting another colonoscopy to make sure what is going on but rectal exam didn't show anything unusual. Dr believes it's the Cronhns acting up again and dealing with a proctitis flare. Problem is in the past was responsive to Canasa and this time doesn't seem to be working. Now being put on Rowasa enemas but this really concerns me since I really hate using enemas and not sure will be able to retain it anyway.

What I am dealing with is rectal pain. It's a generalized ache up the butt that gets worse as day wears on with sitting especially. I tend to feel more pressure on one side of the butt as well. This is not an external pain but internal. The dr saw mucus but I generally don't on BM nor do I see blood and my BMs are regular (not loose and only one time a day). Can anyone relate to what I am talking about? I am getting anxious waiting to know what is going on with me and concerned about the Rowasa as well. Any feedback would be appreciated. Thanks!

Posted 9/22/2013 2:09 AM (GMT 0)
Hi and welcome pinkdiamonds,

I have crohn's colitis so I often have had issues with proctitis many times....cortifoam enemas work best for me, they are steroid based but unlike prednisone it doesn't go into your bloodstream at high levels so the risks of side effects are low to zero compared to pred.

The symptoms I get when proctitis rears it's ugly head is a tenesmus which gives you the feeling that you need to have a bowel movement, even if you already have had one and therefore will cause a constant pressure feeling down there, it can also cause increased mucous being expelled and sometimes it can cause bleeding...based on my experiences anyway also it can cause skinny stools due to the inflammation in the rectum.

If you're struggling with the meds you've tried so far, ask for cortifoam...keep in mind though, the longer proctitis is left untreated, the longer it can take to treat and get it under control, but it's necessary to treat it so hopefully if you get cortifoam it will clear it up...be patient with it though.
Posted 9/22/2013 3:34 PM (GMT 0)

Thank you, PB4. I have had a couple of people tell me about the cortifoam so I am thinking I should ask about this. The dr mentioned it but then prescribed Rowasa instead. I am guessing either he feels it's better or because I have responded to Canasa in the past he feels this is a better bet.

Does the Cortifoam sound like what it is? Meaning, it's not a liquid like the Rowasa but an actual foam that is more likely to stay put up there?

You mentioned the longer I have it the longer it can take to treat. Could this mean 2-3 weeks or more before feeling the effects? Just trying to get an idea. Canasa always seemed to take 2 weeks to take action. This time I gave up after 2 1/2 weeks and switched to hydro but now wondering if any of these meds could take even longer than that.  Anyhow, thanks again for responding. If I get the cortifoam it will be another fun trip to the pharmacy. Nothing like picking up a small suitcase like box that read RECTAL ENEMAS as the guy behind you looks over your shoulder. Must try to retain sense of humor!

Posted 9/22/2013 5:37 PM (GMT 0)
Hi Pink, sorry that you are suffering. I have a long history w proctitis. As Pb4 mentioned, steroid enemas or cortifoam (colifoam) are very effective for putting a flare up under control. During my flare ups, I used to have stabbing pain in rectum, swelling of the rectum and tenesmus. When flare ups are that severe, my GI used to prescribe 2 Pentasa enema/ day and colifoam 2 times/week. In other instances, I took 2 Pentasa or 1 Pentasa enema (according to the severity of the flare up) and a budesonide enema daily. The last flare up took almost 1 year to be resolved. Don't won't you to go through this. Take your meds regularly and avoid chocolate and tomato sauce.
Hope you feel better soon :)
Posted 9/22/2013 7:09 PM (GMT 0)
Hi pinkdiamonds,

Yes, it's a foam and it's the only rectal meds that work for me...I'm guessing it has to do with the fact that it is a foam so it likely sticks inside better than anything else and reaches farther up than any kind of suppository type rectal med (which I've also used with no success at all).

As far as how long it will take to work, it likely varies from person to person and probably also depending on how bad the proctitis is.

I hope you find relief soon, I sympathize because I know how awful it feels down there.
Posted 9/23/2013 2:17 PM (GMT 0)
Thank you minnietoty and pb4. OMG, minnietoty, a year??!? Ok, this really scares me. I will do what I can to get this under control. Thanks.
Posted 9/24/2013 4:07 PM (GMT 0)
I have to echo what the others said for symptoms. But I also have a good bit of bleeding that will occur due to internal hemmies also. This is the second time this year i've been on the Canasa suppositories. Hoping to keep it at bay a little longer next time.
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